The Chronicles of Crap

This Love of Ours

2012-02-14T06:17:00.000-08:00

(via pinterest)

Happy Valentine's Day to my Sweet Love. Thank you for complimenting my weirdness, I know that's hard to do;)

Decisions Decisions

2012-02-08T21:22:00.000-08:00

Last week my GI called and said she had talked with both my rheumatologist and my surgeon after my January appointments to get everyone on the same page (I think that's pretty awesome, something that really hasn't happened in my journey, especially since all three are at different hospitals.) She said that we were at yet another crossroads and urged me to do some research on some medications so we could have an educated and in-depth conversation during my appt this past Tuesday.

Again, I totally respect and appreciate that. Not many doctors take the time to do call the week before an appointment and give their patient time to research before the appt to make things more productive. Thankfully, I was already pretty familair with the drug class she was asking me to research -- anti-TNF blockers, namely Humira and Cimzia; and an immunomodulator, Methotrexate.

These are the next line of defense for both my GI symptoms and my arthritis ones too, that's what we are hoping anyway. But with any medications or treatments for that matter they come with risks.

I'll spare you all the details, feel free to google away if you are interested. But the main issue for me in the short-term is the high risk of infection. Both treatments suppress ones immune system in order to suppress the part that is attacking itself. But with the good, also comes the not so good. The risk of catching every little bug out there heightens immensely, and what is an annoying cold for the "healthy" person can quickly turn into something more sinister and serious for the immuno-suppressed. And that's scary.

I don't want to live in a bubble, I won't live in a bubble. So if this is the decision we make then I will have to take very careful measures to avoid contact with as many germs as possible. In other words, hand wash, hand sanitize, hand wash, hand sanitize, repeat, repeat, repeat. And also wiping down shopping carts and avoiding sick germs when I can. It's just more due diligence, a heightened version of what I already do. Plus I will need to always be mindful of my rest and as my doctor very sternly warned, if I feel "off" at all that I do NOT wait to go into my doctor, Urgent Care or ER. I can't not be dumb or stubborn or naive.

But the benefits can be profound as well, it could help relieve the inflammation that is raging throughout my body most profoundly in my GI tract and joints. I could have a better day-to-day quality of life and be in less pain, plus give my insides a much needed rest.

As it turns out, my GI was able to go back in my records a few years ago and I had an updated Prometheus test (check it out) one of the only tests thought to point at if a patient actually has Crohn's or Colitis. And while my marker for UC is off the charts, and that's probably why the docs have always leaned that way, I also have two markers for Crohn's too. So Crohn's Colitis, maybe. But does it really matter, no not really at this point.

And as my GI put it we are at the point for having to do something more than we are doing. That my disease case is very difficult. She was very matter of fact, not trying to sway me one way or the other but really impressing upon me where we are at this point.

I asked about another alternative therapy, she said the science was there but it was not studied enough and even if I ordered it online she wouldn't know how to administer or treat me if something went wrong. She seemed hopeful that if the research continued that someday it would be an option for people.

I felt informed and like I was really in control of the decision. Thanks to my buddy A for coming with me as an extra set of ears since hubby was on a business trip (and to her mom for watching the littles while we were there!)

I think that the hardest part of this decision is the mental one. We did not think we would ever be back here. You see I did take these drugs before my colectomy, the point then was to try and save my colon, but when they didn't it was to be all better once I had surgery. And well, here we are.

It's almost like a defeat, but then again not really. It just for some reason feels like it. I hear the sadness in both my hub's and my mom's voice and it breaks my heart too. We all know what I have to do, it's just a matter of wrapping our brain around it all. I have to try everything I can to live the best life I have available to me in my broken body.

A girls got to do what a girls got to do, right?!

And it could quite possibly make me feel better than I have in a long time and then dealing with the side effects (and the weekly self-injections) could be totally worth it.

I know lots of people who take these meds and live full lives out of the bubble and they give me hope and support. And thank goodness for that.

These decisions are not how I ever pictured life at 32 and yet they really are my normal and that's ok. It's a long and windy road, but it's ours. So onward we go, we have a lot of thinking to do this weekend, again...

Another Birthday

2012-02-05T08:50:00.000-08:00

(On a trip to our favorite vaca spot. He was having a rough time, but he was there.)

Today is my dad's birthday. I wish he was here so I could give him a big hug, have him give me a good pep talk and celebrate his special day.

Miss you tons, love you more.

Oh and Happy Super Bowl Sunday too;)

My past bday posts for my dad here (you can click to the previous two from last year's post.)

Inspired

2012-02-04T09:24:00.000-08:00

(we love Instagram. One of the hubs pics from a flower in my mom's yard.)

As happens around here quite often, we are faced with some very big, hard and confusing decisions to make in relation to my health (I'll elaborate after my appts on Tuesday.) Sometimes that can weigh very heavily on my over thinking brain, when I try to weigh the good and the not so good.

But then I remember that at least I have choices. And even though sometimes I'm astonished at the types of things the hubs and I have to consider just to get through this crazy life, I can often times laugh it off at the most crucial moments when I feel I might break.

And lately I've found some serious inspiration in a few online finds in Choosing Joy and Never Ever Giving Up in the face of some serious crap.

First there is Ashley at the wildly successful blog and business, Lil Blue Boo. I don't know how I came across her blog, but I was instantly hooked by her cuteness, humor, cute style and most importantly her journey in the last year and the outlook she works towards everyday. She is quick to remind she has bad days, but that she chooses to push through. I look forward to her updates, every day. I find her amazing. Plus she's a SoCal girl too;)

Then there's Jesse Joy Rees, the 12 year old girl from Orange County who recently lost her battle with brain cancer. But before she did, she made such an impact in the fight to care for kids with cancer, it's absolutely awesome. She coined the phrase, Never Ever Give Up, or NEGU for short. And well if that doesn't say it all, I don't know what does. Her family is continuing her mission with so much vigor, it's exciting. Check out their Facebook page too, they are trying to reach 250,000 likes by what would have been Jesse's 13th bday in April. This just goes to show that every person, no matter the age can change the world of someone around them. She had an unfair lot dealt to her, but she dealt with it with the grace that many adults never find.

And in the midst of it all, my mind was quieted and at peace as I was lucky enough to, by chance, watch the funeral procession of a fallen soldier who had just arrived home from war last week. If you've never seen a military, police or fire processional it really is one of the most beautiful things. That may seem weird to say but, there is just something about the seemingly endless stream of cars and motorcycles quietly moving in sync. This particular procession had at least 75 motorcycles in it, most with giant American flags on the back and it was breathtaking. And for a few moments in time, people weren't bugged and irate over having traffic at a stop. We all just sat in our cars, taking it in for a good 10 minutes. I'm so glad I was lucky enough to see this. A true human moment, where nothing else really mattered.

And so as I'm contemplating, researching, hoping, praying and processing, I'm also being inspired by beautiful people and moments all around. I'll take it. I know no matter what we decide we will hold strong and choose how we react to it.

A Reunion of Sorts

2012-01-30T14:49:00.000-08:00

Per my last appointment with my GI, I went to see my British Surgeon Dude last week to ensure I don't have any mechanical problems with my pouch. Remember that my MRI showed a significant amount of stool hanging out in there and my GI was slightly concerned by it.

I hadn't been down to the surgeon's office in about a year and a half, since before I went to the Cleveland Clinic and before Super Surgeon Dude passed away. So it was going to be a big visit.

I made the drive to SD by myself and that was a bit tough because my dumb body likes to go numb after about an hour in the car. But I made it.

It was nice to see everyone in the office, the super cute and tiny receptionist is pregnant and lovely as ever. Super Surgeon Dude's daughter was actually working the front desk as well and that was a nice surprise, a piece of him there. I loved seeing the nurse. It was like nothing had changed at all, even went into the same old room.

British Surgeon Dude came in and talked to me for a bit about what has been going on. He did say that sometimes Crohn's does happen in people with pouches and he even quoted his mentor, saying "There's nothing like a pouch to bring out the Crohn's in someone." That made me laugh. We talked about options and decided that treating with medicine is the way to go for now.

He then scoped my pouch and said that everything looks good. I got to watch and he explained everything to me, which was cool. It actually looked better than my scope in December so I know the meds are working. He said he would review my MRI results with the radiologists, but for now to keep on doing what I was doing.

So what is it that I'm doing?

Well, I was taking the enemas every night and then started the pill form of the meds as well after my GI appt. It definitely helped to take both, but then I was having other side affects so I decided to stop the enemas and even though the side effects were gone, after a week the pain in my abdomen and smelly stool was back. So I started taking the enemas again this weekend. I'll have to deal with the side affects for now until I go back to the GI next Tuesday.

I'm holding on. Definitely feeling better than before the holidays, thank goodness, but still working towards a bit more of a leveled off place.

As I said, I go to the GI again next week and to my new GYNO as well. So until then, as long as I stay the same and don't get worse, that's a win!!!

They Say It's His Birthday

2012-01-24T10:00:00.000-08:00

Well another year has passed, and it's this guy's birthday again! Today he turns the distinguished age of 33.

I can't believe I've known you since you were 5! I'm so honored to have been able to watch you become the man you are today. It's so exciting to be by your side.

I hope this year is your year, full of your dreams coming true, lots of happiness and adventures.

Happy Birthday Babe!

Want to take a walk down the hubs birthday memory lane, check out his 30th, this was happening on his 31 & what I said on his 32nd.

Results -- Kind Of

2012-01-10T18:54:00.000-08:00

(Visual representation of my day.)

Today I spent the majority of the hours of 8 a.m. to 12 p.m. in a doctor's office, with a short break to drive from one office to another. I had my follow up with my GI first thing this morning and then my routine follow up with the rheumy after that. It was such a glorious way to spend a Tuesday.

I was anxious to see the GI as I knew we'd go over my biopsy results from the scope and the MRI findings. It was a typical Al appointment, full of information, issues but no definite answers. Here's the snapshot:

The biopsies of the ulcerations in my pouch came back showing a lot of inflammation on each spot tested. Very IBDish. The biopsy taken from the top of my small bowel also showed some inflammation. The doctor's thought, "Is this Crohn's"
The MRI showed no visible fistula. But it did show an area in my small bowel that is thickened or inflamed. Again, is this Crohn's. GI didn't have a chance to review the films with the radiologist, so they will do this tomorrow to see exactly where this area is. Is it right above the pouch or farther up. This may give us more info, but maybe not.
The MRI also showed that I had an unusually large amount of stool in my pouch, which was also a problem during my scope even though I did the prep. So that leads to a new perplexing issue. Why is the stool not emptying all the way. When I empty I get stool out, but I never really feel like it's empty. So I now have an email into my surgeon to see what his thoughts are on this. Yeah.
My iron levels are good now after four infusions, so we will wait and see before we do more.
I'm having dehydration issues so I am to go get IV fluids if I feel I need them.
I need to go to my GYNO again because my lady issues aren't any better and obviously need some more attention. My MRI again showed a "lot" of fibroids, whatever that means so maybe that's part of the problem. Fun times.
I'm going to continue with the mesalmine enemas through my pouch as they seem to be helping the pain in my pouch. I will add the mesalmine pills to help with the inflammation in the small bowel. If I'm not feeling better by my appt on February 7 we will discuss next steps.

After I left the GI, a bit contemplative about all of the above, I made my way to the rheumy. I was actually glad I had my GI appt first so I could relay to him the info. We both believe that a lot of my joint/muscular pain is related to my IBD. His thought is that maybe it's time to start something a little more aggressive, one of the Anti-TNF drugs that are used to treat both IBD and rheumatalogic diseases -- something like Humira. I asked him to please call my GI to discuss a plan to go forward.

It's a bit scary to thing of going on one of these bigger drugs, but at the same time I've had a feeling this was the path I'd be heading down for sometime and at this point I just want to have some relief. This isn't an immediate thing, there is a lot that still needs to be discussed, reviewed, etc. So we shall see.

Today's appointments brought to the forefront again that my autoimmune issues will be a battle for the rest of my life. No answers will come easy or without consequences or new questions. Some days I'll be up and some days not, but I will keep on trucking because really I don't have another choice. It's hard and frustrating and sometimes seems so very overwhelming, but I can do it. I will do it.

Eye On The Prize

2012-01-01T20:06:00.001-08:00

(Photo edited via our newest obsession, Instagram)

Today marks the start of a brand new year. Out with 2011 and in with 2012. All I have to say to this vast expanse of opportunity in front of us is,

"We have our eyes on you 2012. Please be holding the prize we continue to seek."

And here's to all of you, may your New Year be filled with all of the love and happiness you deserve. May you see the many blessings, even in the darkest tunnels.

Good things will happen this year!

Holiday Spirit

2011-12-25T08:44:00.000-08:00

Today as we gather with our families and as we've spent the last weeks soaking in the holiday spirit, I'm reminded of all the goodness there is around us. It's often easy to get caught in what we don't have at the holidays or the things we desperately wish that Santa will bring, but then every so often, if our hearts are open, we get reminders of the reason for the season.

Reminder 1

A few weeks ago, I had found and ordered the perfect Christmas gift for my hubs from a vendor on Etsy (love that site) Running On the Wall sells pieces to display running medals and race bibs in an organized and prominent way instead of in a box somewhere never to be looked at again. I was so excited as I knew he would love it. However, I was not paying great attention when I placed the order and although I thought I did, I did NOT specify the color I wanted. So when they arrived in the green color that it clearly states as the standard color, I was a little shocked and disappointed and then was mad at myself once I realized the mistake was mine.

I thought for a brief while that the green would be ok, but then decided it wasn't. So I emailed the vendor asking if I could send back the originals, have them repainted and sent back and that I would pay shipping both ways and labor charges. I got a response within three hours that they would of course send me brand new signs in the color I wanted at no charge to me at all except for shipping the originals back! I was floored, I mean I just don't encounter this type of "old school" business practice that often, especially when it was my mistake. It really warmed my heart, especially now, and reminded me of the goodness of people. I'm still amazed.

So if you are looking for a present for the runner in your life, please visit the Running on the Wall shop, you won't be disappointed with the product or the service.

Reminder 2

My sweet friend MM is one of those people who truly wishes she could solve the world's problems and she tries desperately to do so one person at a time, sometimes to her own detriment;) But each Christmas I'm truly amazed at how she takes her normal generosity up a notch. Whether it's chasing the garbage man down the street to make sure he gets his holiday tip (she's the queen of tipping etiquette), or adopting a family in need with her friends at work, or hiring someone who is in financial need to bake cookies for a party she's going to, she never ceases to find an opportunity to serve. It's a good reminder to find little ways each day to show people they are appreciated and loved.

Reminder 3

On the recommendation from our dear friends C&J, we bought our Christmas tree from a local youth organization this year rather than from L.owes or H.ome D.epot. It was a little more expensive and our tree was very dry, but the experience of having these young kids enthusiastically show us the trees, take the time to find one we liked with no holes and the conversations had were just amazing and we left there with such a warm feeling. It wasn't about the tree, it was about helping these kids but really them helping to remind us of what really matters.

These are just a few of the blessings we've seen this holiday season and I'm thankful that with all we have going on, our eyes are still open to the bigger picture and to the seemingly "little" gestures. Merry Christmas to you all and Happy Holidays. We hope you are surrounded by love and peace.

Al's Mailbag: Holiday Edition

2011-12-22T09:57:00.000-08:00

Dear Wrapping Station,

You may not be a wrapping room at Spelling Manor (did you watch that on HGTV?!), but you sure did make my gift wrapping and Christmas crafting life so much easier. My body thanks you and my organizational brain loves you to pieces. Why didn't I think of this sooner?

Love, The Chronicles of Crap Wrapping Elf

Dear Christmas Ambiance,

Oh how we love you. You just make our spirits Merry and Bright. Our home is always our favorite place, but at Christmas time we love sitting by the tree(s), sipping a hot beverage from the Keurig and taking in all the glory of the season. Thanks for surrounding us this time of year.

Love, Your Owners

Dear New Arrivals,

You are so very Pur-dee! The laundry gods deemed it time to purchase new machines last weekend (there's never a good time, is there?) After checking to make sure your predecessors were really capoot and some extensive research on front load vs top load, we found you at L.owes. We are thankful we could take you home so quickly and start doing quiet, fluffy laundry. Merry Christmas to us.

Love, The Laundry Fairies

Dear New Girl on Fox,

I HEART you. I really can't say much more. At the end of each episode I proclaim to the hubs how happy your show makes me. I laugh out loud, I'm practically giddy with anticipation before watching each episode. You had me when I saw the main character was my girl crush, but you sealed the deal with a set of perfectly cast male roommates, excellent writing and awesome songs. I believe everyone should be watching this show for their health, do it, I promise you will laugh tat least once. Thank you for bringing TV pleasure to our living room. Your holiday episode was awesome, now if we could just get our DVR to stop cutting off the last two minutes of each episode!

Love, New Girl's biggest FanGirl

Food, Water, Catheter

2011-12-19T16:31:00.000-08:00

"Happiness if found not only in peace but in strife."

Friday's quote from the Keep Calm and Carry On Calendar, funny after my post on Thursday

Over the weekend, the hubs and I had yet another conversation relating to the catheter chronicles, read the first one here.

Again, it was serious but totally funny and had to do with emergency preparedness. I have been thinking lately that I need to buy a stockpile of the type of catheters I like, just in case say they don't make them anymore, or they go out of stock online and I can't find them anywhere else. Remember us k-pouchers aren't all that common, and who knows how things will be in 20-50 years for our access to supplies.

I brought this up to hubs and he of course agreed. His concern was more in terms of natural disasters and lack of access. We again talked about all the other supplies I use are nice to haves, but the catheter is a need to have and of course the hardest to find (again in an emergency I would use a straw or tube found anywhere, but that comes with risks and would only be done in dire need.)

After a bit of discussion, the hubs said, "Well for us it's food, water and catheter - the necessities of our emergency kit!"

And of course I laughed. I will be buying a stockpile soon:)

And while we are on the subject of my k-pouch, I had my scope (k-pouch and upper endoscopy) this morning. I was happy it was finally here, it's been a very rough few weeks. I just kept praying that we would see something (again, a spoonie's wishes are warped, because we know something is wrong so many times, but our bodies bluff to the doctors.) I had dreams all last night that there was nothing to be found.

I was on liquids after noon yesterday, which usually would just tick me off, but unfortunately I have a barely existent appetite right now so it was easy, nice perk. My sweet caretaker man (hubs) took the day off to take me (no driving for me after all the glorious drugs they give you.) We got there right at 7 a.m. and actually started ten minutes before the 8 a.m. appt, yeah.

This was my GI's first time scoping a k-pouch, it was teaching day for me, yeah. I actually do like educating people on my anatomy. Now of course she had called my surgeon to go over the basics. We all decided that I would be awake for this part and actually insert the scope myself, the same size as my catheter so I'm really the pro and knowing my own valve. All went in well and we were off. Right away, we could see ulcerations (they had three screens up to watch, AWESOME!!) I asked what that meant and she said they looked like IBD type ulcerations (Crohn's or UC), she also said the lining of my pouch was sensitive and bleeding a bit, probably inflammation. She tried to get past one point, where she and I both believe I have a narrowing where the small intestine connects to the pouch due to inflammation and scar tissue, but couldn't and so she stopped. At this point the pressure from the air they have to blow in and water they spray in, was getting a little tough to take. She was great about backing down, but there had to be some in there, so I started getting some IV pain meds. She took some biopsies and was just about done in there, and that's where I went to lalala land for the rest of the procedure.

The upper EGD, went much smoother, all looked clear from the throat, through the stomach and to the top of the small intestine. They did take some biopsies from the small intestine at this location to confirm that I do NOT have celiacs disease (the blood test done a few weeks ago came back negative. Which was relieving but not surprising as I don't believe this is my issue, but always good to be sure. Plus people with celiacs tend to have blood loss issues, hmm.)

So what didn't get scoped, most of the small intestine -- she could only go so far with the upper and couldn't get past the narrowing in my pouch to check the bottom.

Are you all still with me? We didn't talk a lot about overall implications of the ulcerations, for now we are going to just try and treat to get me feeling better. So here's the plan:

I will take Rowasa enemas, through my pouch of course, which are a steroid enema that should help with inflammation.
We wait for the biopsy results, which won't be until the first week in January due to holidays. If she feels that the ulcerations might be above the pouch too, or if the Rowasa don't work, we will move on to Entocort a steroid.
Both of these drugs are used to treat Crohn's and UC and I have used both in my day.
I'm going to get another iron infusion or two in the next few weeks, because I can already tell a difference in energy not having one this last week. During my infusions, I've also asked for a bag of fluids to help with my dehydration and so that will be added to the pack.
I have my pelvic MRI this Wednesday evening, to check for the fistula issues. All is still status quo there so we need to figure that problem out.
I have my follow up with my GI on Tuesday, January 10 and from there we will talk about what this all means for the future, continue to discuss my ferratin issues and if they are GI related or do I need to go to yet another specialist for this

I'm in a bit of a confused mental state, which is complicated by my still groggy state from my propophol this morning (yes that now infamous drug.) I'm happy they saw what I knew in my heart was in there. I have really been feeling like I'm in a flare lately, of what I wasn't quite sure since we just don't know what my IBD status is. I just want to feel better, these last few weeks, month, have been very rough.

This may be the road to really figuring out this status and may mean I will officially have to accept the Crohn's/Indeterminate Colitis diagnosis, with actual drug treatments. But at the same time, I'm just so glad to have my pouch, I love it and am thankful for it and if I do have Crohn's, whether I had a traditional ileostomy or not, I will still most likely be on meds so it's not the pouch's fault.

Now it's time to focus on these meds, hope they provide some relief, get through and enjoy the holidays over the next few weeks. In the New Year, hopefully feeling better, we'll tackle whatever we must and keep on chugging, just like always.

"If we live inside a bad joke, it is up to us to learn, at best and worst, to tell it well."

-- Jonathan Raban, English Travel Writer

quote from my Keep Calm and Carry On desk calendar

Events

2011-12-15T14:24:00.000-08:00

I've been thinking a lot lately about some important dates that have passed this past fall.

October marked 13 years of being together with my sweet hubs (we celebrated 6 years of marriage in August)
October 29 was my k-pouches birthday
November 8 of course was my 32 birthday
November 20th would have been my parent's 35th wedding anniversary and was also the four year anniversary of my colectomy, the one that started it all so-to-speak
November 24th was the this little spaces 3rd blogoversary
And today marks a year since my sister-in-laws accident

As I've said before, the fall is my favorite season, that might seem strange when you look at some of the things on this list. But as hard as these challenges have been, I know that they have all helped continue to mold me to who I am today. Each one has brought significant changes to my world and to that of my family and it would be easy to fall into a pit of despair sometimes. But it's my goal to choose happiness as much as I can and use all these events, happy, hard or sad as a way to see blessings in my life.

Let me be the first to say, that is NOT always easy, nor do I always like to do it or am I good at it, but I know in the long run I can't change what's happened. I can't control what my body will do next or what curve ball might come out of left field, but all I can do is choose how I react and move through this windy path.

The holidays can be a very hard time, when you feel lost or like your prayers aren't being answered. It's something I struggle with every day, especially while waiting another year for our baby and dealing with an extremely naughty body. I let myself be sad, angry and scared for what might be, and I don't know if it's just natural optimistic tendencies or life's resiliency, but I still have hope and believe that although I will probably always struggle, I will have the things that I desperately want and am working for.

Choosing happiness when you wake up each day is not easy, but man does it help when you are in the deepest of places, with what seems like no way out.

To those of you struggling right now with all the things life has to challenge you with, I say hold on tight, find something each day to smile about or share with someone the things that are holding you down. And remember, take each minute as it comes, no more and you might just find that day a little easier to swallow.

A wise friend tells me, "Happiness is not a destination." It's so true, it's more a moving target.

Life's events are rarely ever as we planned, it's all about being able to change course I guess. Maybe that's the only thing we can really plan on.

Musings from a Crowning

2011-12-13T21:40:00.000-08:00

Today I received a crown. No not the bejeweled fabulous headpiece, with a fancy title type. It's more of the dental work type. You see two and half years ago I had to have an emergency root canal, but I never went in after to get the permanent crown on it - procrastinated until I couldn't anymore because my tooth started cracking.

But anyway, as I was in the dental chair, I had a bunch of random thoughts:

Dental work has come a long way, no more big fat needles coming at your face for the novocaine, it's so nice.
The view the dentist and his assistants have of a person as they are laid back can not be a flattering one. Upside down, mouth wide open, looking up the nostrils, face and chin(s) squished back.
I hope my eye makeup is on nice and even and that I don't have boogers.
I really hope no spit or otherwise flies out of my mouth and into my eyes, I better keep them closed.
It's nice to have dental work done during the holidays, at least at our office. They were playing Xmas music and the dentist was humming along.
I'm happy our dentist doesn't try to ask me mundane questions while my mouth is wide open and I don't have to answer awkwardly and from the back of my throat.
I learned I have a small mouth and short teeth, random.
The saying, "do you have a hole in your lip?" really rings true when I'm trying to rinse my mouth out with half a numb face. I kept inadvertently spitting it all over the counter.
Feeling my face numb up to my eye socket is weird.

What can I say, I had an hour and a half to lay there with my mouth wide open. I'm a strange girl and now you have another glimpse into my brain. Your welcome or sorry, whichever suits you.

CCFA Rocked Las Vegas

2011-12-11T09:15:00.000-08:00

We got back mid last week from another great CCFA Team Challenge weekend in Las Vegas. It was jam packed with CCFA love and as last year was the experience reminded me that there are people all over the country fighting for the same cause.

The hubs has raised close to $3,500 this season (it's not too late to donate, go here) I'm so proud, but what just blew us away is that the 1,200 Team Challenge participants in this Las Vegas event have already raised more than $4 million dollars for CCFA! I still get goose bumps thinking about that and am so humbled.

We feel so lucky to be a part of this great organization and the Team Challenge family. Vegas is definitely a tradition for us now.

Enjoy a barrage of photos, they are in reverse order of the weekend, sorry....

My cutie at mile 2!

With some of our TC family, love these guys.

The hubs with D, my buddy and co-facilitator of the support group I help run. He ran the entire 1/2 marathon, his first, in 2hr20min all unknowingly with pancreatitis that put him in the hospital last week -- AMAZING!

My best peeps, could not be more proud of them and all they do for me.

Love him, doesn't he look so cute pre-race.

Mike McCreedy of Pearl Jam, who has Crohn's disease, spoke at the Inspirational Pasta Party on Saturday night.

The cheer line as you enter the Pasta Party. All 1200 TC participants and their families are greeted to this as they enter the dinner. I can't even explain the energy and tone it sets for the rest of the emotional evening. That dinner is one of my favorite parts of the weekend.

One of our TC teammates made me this awesome love knot blanket in CCFA colors. I was so touched and of course I cried. Thanks L, so proud of all you accomplished.

Me and J, love this pic, but love her more.

Have I mentioned how awesome these two are? This was their 3rd 1/2 marathon in 12 months! And all told with TC, combined they have raised more than $15,000 for CCFA.

With these dedicated people and the awesome programs of CCFA a cure is definitely on the way.

Awareness for a Cure

2011-12-01T16:23:00.000-08:00

Did you know that it's National Crohn's and Colitis Awareness week? Well neither did I, but I think it's pretty cool that it is. It's definitely time to start spreading the word about these diseases and get people talking about them as much as possible. Check out this link, from CCFA about what you can do to be involved.

Want to know what else I think is pretty darn neat? The hubs will be running the Las Vegas Rock and Roll half marathon with CCFA Team Challenge again this Sunday. He's been training and also been a mentor to our local group for the last 16 weeks. He's raised close to $3k so far towards research and vital programs and is excited to run his booty off again for a cure.

It's not too late to donate, check out his fundraising page here. I can't think of a better way to commemorate Awareness week, can you?

Viva Las Vegas and Go Team Challenge. I'm so excited.

Mix and Match

2011-11-27T14:08:00.000-08:00

(Me, AKA "Scoots" on my motorized vehicle at Disneyland. It was a god-send!)

Well I've been quite quiet here on what's been going on with my ever so lovely body lately. I wish I could say that's because everything is status quo, but alas that's not so (haha I rhymed!)

Warning some gross TMI to follow. So here it is.

Way back in August I started having a lot of discharge from my lady parts (sorry I know, I can talk about poop all day, but this topic makes me uncomfortable.) It was NOT normal, but I just hoped and prayed it would go away. And well you know how that goes for me. Yeah so, by the end of October I knew I needed to call the gyno and make an appt. I went on November 9, they wanted me to come the day before, but that was my bday and I have to draw the line somewhere;)

So off I went. And after the acknowledgment that yes that was a lot, my dr and I started talking things out. She asked if any stool was coming out and I sarcastically said, "If there is poop coming out we have a whole other problem since I have my pouch and it's not connected to anything down there."

And then it clicked for both of us. A dark and somewhat scary thought, what if I have some sort of fistula! She did an exam but couldn't see anything. She wanted me to talk to my GI about it since she really didn't know where to start with trying to figure this out with my weird anatomy. Thankfully I already had an appt with my GI for two weeks later (my routine appt). My gyn tested me for some different bacteria and sent me on my way.

Rewind just a bit, starting in October, my lovely little intestines started to act up again. I took the antibiotics for the bacterial overgrowth, but that didn't help much. I was still really gassy and having pains and losing my appetite. I was thankful I'd be seeing the GI soon.

The week before my appt (which was the week after my GYN appt) I went and did my routine bloodwork. Two days later the nurse called to say my Ferritin (blood storage levels) had dropped again since my summer iron infusions. I went from a 34 back down to a 4 in 3 months (12 is the low end of normal for a woman). I would need iron infusions again, but since my appt was just a few days away I waited to talk to the GI. The appt was shaping up to have a lot more to discuss then just a routine follow up.

Last Tuesday morning, after picking up my family from the airport and before I was supposed to head to Dland, I went to my appt. I was nervous and annoyed and very tired by this point. I explained what had been going on with the discharge and before I could say what the GYN suspected, she said the word -- possible fistula. UGH.

Then we talked about my ferritin, she said I needed to get in for iron infusion as soon as possible and do one each week for three weeks, then in two months I'd have to do them again. We'll keep that going indefinitely I guess. The thing is for now my hemoglobin is fine, it's just I can't keep the storage so where is it going. I don't have that heavy of periods so is because of chronic inflammation? But my numbers look fine, of course.

And that's when the plan came out. Tests, tests and more tests. Tests to see if I have a fistula, tests to scope my pouch and upper GI tract.

I'll have:

A pelvic MRI to look for possible fistula (hopefully it's nothing)
A pouchoscopy and endoscopy (my GI called my surgeon to get the scoop on scoping a K-pouch, she now feels comfortable doing so)
Iron infusions for the next three weeks (which I started on Friday, the day after Thanksgiving)
A new acupuncturist to try (the same one my friend M goes too and who works with a lot of IBD patients.)
Antibiotics (for the two infections that were in the discharge -- group B strep and bacterial vaginosis -- lovely. I started them last Tuesday)

And here we are. I've decided that every 6 months my body likes to jump out of the status quo and be even more difficult. Which annoys the stinking crap out of me, because I work so hard to live my normal!

And of course with some of the above treatments come other issues. Antibiotics make my stool so thick, I can barely get it out of my tube. Which means lots of irrigating and juice and tummy pain. The iron infusion pummeled my already worn down body on Friday afternoon (the same way the first one did this past summer, but good news is they got easier as they went along) I've been down ever since, and today has been an especially hard day -- stubborn migraine, dry heaves, anxiety up the wazoo, crying out of pain and frustration.

Then I start to thinking and not a lot of good things. I think about the list of ailments.

Chronic (meaning forever in some form)

Inflammatory Bowel Disease
IBD related arthritis
Fibromyalgia
Sjogrens Syndrome
Migraines
Orthostatic Hypotenstion (low BP)
Fibroids
Sinusitis

The Bonus Items Right Now:

Low ferritin (where is the blood going? At least the infusions should help with my energy.)
Two bacterial infections
Possible Fistula

And when I look at that list I think why can't I just mix and match, you know pick 2 or 4 at a time and deal, I can do that. But when everything starts piling up at the same time, it becomes very hard to handle in the moment. I mean, I accept the list for what it is, but emotionally when I'm down and feeling fragile both physically and emotionally, my mind plays mean tricks on me and I get sad and ask unhelpful questions.

How can I do this forever?
Is this why the fates haven't brought us a baby?
What did I do in a past life?

I honestly hate feeling this way, obviously physically but emotionally because I feel like it's winning, whatever "it" is. And it's only when I'm feeling the way I am today or let myself really think about going into more tests, that the thoughts really creep in and make themselves at home. I'm usually so good and pushing them away, accepting my reality and still living a dang good life -- full of wonderful, happy people and things.

I won't let it get me down for long. I'm already feeling better mentally after a good cry, a long hot shower, some good meds, the comfort of my bed, tender care from my hubby who always knows just how to handle me and typing it all out here on this blog.

I realize that working, functioning bodies are a privilege not a right -- like driving or spandex. Some of us just don't have that privilege no matter how hard we work, but I think that makes us appreciate them even more. Because even at my worst, I'm still in awe of how much this naughty little body of mine has endured and can persevere through. I'm still pissed about it. I still wish I didn't have to work so hard sometimes, but I will keep on doing it because I don't see another alternative and I don't want to miss my life.

I read this post on one of my favorite IBD blogs the other day. I'm definitely a dandelion and proud of it, even in the darkest of little places.

Hold on to your hats folks, this little dandelion is buckling in for another ride.

A Very Disney Thanksgiving

2011-11-24T09:59:00.000-08:00

We were very lucky to get a visit from the cutest little turkey around this Thanksgiving, our niece Super G! It was her first visit to So Cal and to our house, but most importantly to the Happiest Place on Earth.

Disneyland is always magical, but most especially when you have a tiny person to see it through. We spent Tuesday and Wednesday soaking in the wonderment that is Disney. It was a fabulous way to spend Thanksgiving week, a great reminder of all we have to be thankful for.

Just a few pics:

Watching the Holiday parade with Auntie Al.

Always a jokester that hubs of mine. This is just one of about 15 photos of his random faces.

I was so excited to go on this ride with Super G for her very first time. It's a Disney classic and made me so very happy.

Pretend tea cup ride with the girls:)

My cute mama and me, with J in the background throwing up a "hey there."

When they lit the castle that night and it snowed, I honestly could not help getting teary eyed. It was so beautiful and we were so lucky to be standing there experiencing it all together.

My crazy family at our house on Thanksgiving day. It was a great day, very relaxing. The kind of day where you just enjoy each other, chat, laugh, take a walk and or a nap. We cooked a low key, very non-traditional meal and all sat at the table and it was wonderful. I loved looking across and seeing Super G sitting like a big girl with us, it truly warmed my heart.

Yes it's true, Thanksgiving really is my favorite holiday (followed very closely by Christmas) because I love the feeling of thankfulness, and always hope to carry that through the whole year even when times are hard. Hope you all had a wonderful day with loved ones too.

Now bring on the Christmas cheer!

Love Letters

2011-11-13T09:50:00.000-08:00

Dear Breakfast Food,

Thank you for making me want to eat you. I'm having a massive loss of appetite problem, which makes me very very sad. But I really couldn't deny french toast lovingly made by the hubs this morning.

Love, My Full (although hurting) Belly

Dear Hunter Rain Boots,

I know I briefly mentioned that you came into our little family in my birthday post. But I really think you need a more prominent shout out. I HEART you. I HEART the cute cable knit socks that the hubs bought to go with you. And I can't wait for more sock options. I'm so excited because I have some cute long gray ones on the way, thanks to the fabulous Barb:) So don't you worry, I promise to accesorise you, wear you and shine you proudly.

Love, My Happy, Splashing Feet

Dear Saturday Weather,

You were perfect for curling up and watching some of my favorite movies all day long, since as I mentioned I'm not feeling so hot. I loved your gloomy, rainy appearence. Please come back again real soon.

Love, A Fall Weather Fan

Dear ABC Family,

Thank you for airing said movies and making it Harry Potter weekend! You warmed my little heart so. Perfect timing on your part.

Love, A Hogwarts Student Want-to-Be

Dear The Next Two Weeks,

I'm very much looking forward to you, but I'm also a little scared because I know they are going to be busy, even for a totally able bodied person. So I need to keep "spooning" up as much as I can so I can power on through. Please be kind.

Love, The Girl With the Naughty Body

Thirty True

2011-11-08T10:37:00.000-08:00

Today marks another year for me, today I turn 32 -- yes it's true. And in my cheese ball fashion, I've decided this will be my Thirty True year. Not quite sure what that means, but since I've dubbed my last two years, I'm just going with it.

Want to check out my Thirty and Flirty post, go here & Thirty Fun, here.

And so far this actual birthday is already better than the last two -- I was 12 days out of K-pouch surgery on my 30th bday and still hooked up to the constant drain and higher than a kite and I had the stomach flu last year. So yippee for small victories. Is this a sign, gosh I hope so.

To kick off my Thirty True year, I thought I'd come up with a list of 32 true, completely random and probably not very interesting facts about me. I know it's a little narcissistic, sorry. But I will say it is dang hard to come up with this many things about yourself, I've been working on it in my head for weeks -- it's not been a pretty thing.

Without further adieu...

November is my favorite month, not because it's my birthday, but because I love the true fall weather that finally arrives, I love all the thoughts on thankfulness and the start of the holiday season.
I love condiments, dipping sauces, whatever. My favorite, Catalina dressing! Weird but so true, and I absolutely love it on white sticky rice.
Speaking of white rice, it's my comfort food, but only the kind made in a rice cooker. That's how I grew up and I just can't do stove top rice.
Growing up, I was a dancer, that was my main extra curricular activity and I loved it. But the reason I started dance is because I was so clumsy as a child, my parents thought it would help give me a little grace;)
The hubs and I met in kindergarten, and we went to every school together from there, but we didn't start dating until our sophomore year in college.
My favorite movies are A Chorus Line and The Princess Bride.
I carry tweezers in my purse, you never know when a hair is going to go rogue on you.
When I was in college, I was the president of the Public Relations Student Society of America at my school.
I have a BA in Journalism with an emphasis in Public Relations and a minor in Marketing.
I'm currently addicted to having a hot beverage at night -- either a hot chocolate or chai tea. Oh how I love the Keurig!
I still have a check register in my purse, write down each transaction and balance our accounts to the penny, even though we bank online.
I'm named after a song. My dad heard it on the radio while my mom was pregnant and said he wanted to name me that if I was a girl. My mom said sure as long as she could decide the spelling. I love the song, it's kind of tragic, but beautiful and I love the story of how I got my name.
I absolutely LOVE musicals, always have, always will.
Similarly, I love to sing along to songs and when I'm really getting into it I use my pointer finger on my right hand as a microphone.
But I'm not a fan of what I call angry music. The songs that have a nice catchy, sometimes deep flow and then it all goes wrong when they start screaming or yelling in the middle and it really grates on my nerves. You know what I'm talking about.
I have an extremely efficient morning routine when I have to get up and go somewhere. I have it timed perfectly as to maximize the time I get to stay in bed. No dilly dallying along here.
One day in the sixth grade, after school my parents surprised my brother and I with a puppy. A yellow lab named Cosmo, sweet sweet girl. When my mom told us on the way home that there was surprise, I thought we were going to Disneyland (they had surprised us with a trip to the Happiest Place on Earth not long before that) I won't lie, I was slightly disappointed, haha;) But man did I love that dog.
It really makes me nervous when the DVR has too many recorded shows on it that we haven't watched. That's why we can't commit to too many shows.
I really don't like cartoons on TV, kids or adult versions. I like Disney movies and Pixar and that's about it.
I prefer pie over cake. The hubs and I love to share a hostess pie as a treat every now and then -- cherry or lemon.
I enjoy going to movies by myself. Everyone should try it.
I don't like to wear plain white socks, I only wear "fun" socks.
I'm really loving the Chevron pattern that's appearing all over these days. Need to get me some pillows or something.
One of my very favorite things to do is hang at home with my hubby, doing not much of anything but being together.
I'm a complete softy. It really doesn't take much to make me tear up -- nice notes, commercials, cute kids, touching images, etc. I get especially weepy when I'm super proud of the people I love the most.
Costco really overwhelms me. All of those items in bulk. We are just two people in an 1100 sq ft home, we can NOT shop there. I know it's a wonderful place, but until we have a larger family, I just can't go in there unless absolutely necessary.
I'm totally grossed out by touching raw meat, which is a problem that I'm working on since I try to cook dinner at least four nights a week. UGH it's just so nasty.
I sometimes laugh at inappropriate times.
I love my hubby so dang much, I mean I really do (not a surprise to you I know). He's always so sweet to me, he told me last night that my bday is one of the best days of the year:) And I woke up to the Hunter rain boots I've been wanting and sweet cards that made me tear. Now I just need some rain so we can go puddle jumping.
I have a dream, and that dream is for a dishwasher that's not me or hubby man. Someday we'll be able to rinse and place in the fancy machine, set and forget. Oh the possibilities I see.
I wake up every day and pray and hope that today might be the day that our baby finds us. That our lawyer or someone calls us to say that a birth family wants to meet us. I'm desperately wishing that this Thirty True year of mine makes my deepest, truest dream come true -- a sweet baby for my hubster and me.
I know that New Year's is the typical time to reflect on your last year and think forward to what you might see/want/hope for the future, but for me I usually use my birthday as that time. Today is the start of my new year. Renewed hope for so many things in my life, that despite so many trials I keep plugging forward for. Here's to Thirty True!

** I have a few birthday buddies out there, hope you all have the best day too! **

Faces

2011-11-05T11:28:00.000-07:00

If you've been reading this blog for any length of time, you know that I have a passion for helping others dealing with IBD. I believe it's one of my missions in life and one of the things I'm thankful for in having my own battle.

If you have time, please take a minute to watch the below video. It's intended to be a conversation starter with those who know nothing about CCFA or IBD in general. The hope is that it will get more people to talk about these diseases and just how truly consuming they are.

(I am so honored to have been a part of this video. If you can't see it, click here)

After watching, maybe you recognize one of the faces, if you are feeling a call to action to help find a cure or to support one of the many patient programs the CCFA offers, please visit the hubs' Team Challenge fundraising page. In just four weeks, he'll once again be running his butt off for a cure on the Vegas strip. Click HERE to help the 1.4 million faces of IBD today.

Remember talking about poop may just help another person to not feel alone or get them the help and support they need.

Boo From the Poo

2011-10-31T08:22:00.001-07:00

(yes I know this pic is blurry but I still like it!)

Hope you all have a Spooktacular Halloween!

Love, Jack Skellington and The "Drink Me" Bottle from Alice in Wonderland

So Tired

2011-10-25T13:27:00.000-07:00

That's me, I just can't get enough sleep even when I have the time. At this most busy time of year, it's extremely frustrating to feel limited by my body and it's capacity (or lack there of) to deal with all the fun activities I have going on. Add my pouch irritations and joint pains, etc and you have a cranky Al.

That's all I got. Closing the computer and closing my eyes...

30 Things

2011-10-18T11:03:00.000-07:00

I saw this on one of my favorite blogs, butyoudontlooksick.com. I thought it was pretty cool and perfect for my little space here. So after weeks of trying to get this done and posted, here you go.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Ulcerative Colitis, IBD Arthritis, Fibromyalgia, Migraines, orthostatic hypotension (maybe more who knows)

2. I was diagnosed with it in the year: 2003 (UC)

3. But I had symptoms since: I would say I had stomach “troubles” since my late teens. Migraines started as a teenager as well

4. The biggest adjustment I’ve had to make is: Saying no, I am a yes girl both because I want to do everything and because I don’t want to let anyone down. But my body needs me to say no and be good to it.

5. Most people assume: that because I look good and am happy, that I must not feel so bad

6. The hardest part about mornings is: moving and stretching my body enough to get out of bed and dealing with the nausea.

7. My favorite medical TV show is: House, although I don’t watch it regularly

8. A gadget I couldn’t live without is: My iPhone, I’m addicted. It makes waiting rooms so much more enjoyable

9. The hardest part about nights is: Falling asleep

10. Each day I take: lots of vitamins and just a few pills

11. Regarding alternative treatments I: Whole-heartedly believe that a total body approach helps in healing or managing disease. Try anything and everything that makes you feel even a bit better.

12. If I had to choose between an invisible illness or visible I would choose: I would say invisible, because you can hide it and just be you, not always sick you.

13. Regarding working and career: I have come to peace with the fact that a 40+-hour workweek, especially in my previous career, is not going to work in this body. I’m happy about that now. I’m able to be productive, volunteer and will be a stay-at-home mom and still be ok managing my diseases and taking good care of myself at the same time.

14. People would be surprised to know: That I feel blessed by many of the trials I’ve been shown especially these past four years. I’ve learned so much about myself that may have taken many more years or may have never been revealed, and I think I’m stronger and a better person because of it.

15. The hardest thing to accept about my new reality has been: That I can’t do everything. I’m used to being the dependable rock in all situations. I hate feeling limited in some situations.

16. Something I never thought I could do with my illness that I did was: Be an advocate for myself and others in such an impactful way.

17. The commercials about my illness: Make me laugh, but also make me thankful that talking about IBD is becoming more acceptable.

18. Something I really miss doing since I was diagnosed is: Really it would be since my massive flare that kicked off my last four and half years – taking dance classes

19. It was really hard to have to give up: Some of the freedoms I used to take for granted, like walking as far as I want without thinking about it or dealing with the pain.

20. A new hobby I have taken up since my diagnosis is: Ugh, I don’t know about this one. I don’t feel like I have any new hobbies. Maybe my CCFA volunteerism.

21. If I could have one day of feeling normal again I would: Pack it full with activities and live carefree without thinking of the impact on my body;)

22. My illness has taught me: To be more patient and kind with others and myself. It’s also reinforced the “don’t judge a book by its cover” saying.

23. Want to know a secret? One thing people say that gets under my skin is: Oh you are so lucky you are: skinny, have so much free time, don’t have to work, etc… Why yes that's true, but trust me all those things come with a lot of baggage and aren't nearly as glamourous as they seem!

24. But I love it when people: Say they are inspired by my willingness to share my story, that it gave them the strength to tell their's or that they didn’t feel so alone in their struggles after hearing it.

25. My favorite motto, scripture, quote that gets me through tough times is: Hope is a talent, just like any other.

26. When someone is diagnosed I’d like to tell them: That it really will be ok, even when things are so tough, you are not alone and you are stronger than you ever thought you could be.

27. Something that has surprised me about living with an illness is: The power that my words have to others going through similar things. Not being embarrassed or too proud to share my story has been so healing for me and has connected me with some truly amazing people.

28. The nicest thing someone did for me when I wasn’t feeling well was: Love me unconditionally through it all – the good, the bad and the very, very ugly. When I couldn’t love myself through it, I’ve been so lucky to have a core group of people in my life who have worked hard to be there for me in so many different capacities.

29. I’m involved with sharing my story because: I don’t ever want anyone suffering from an invisible/chronic illness to feel alone or that nobody can understand them. That is such a lonely feeling. These diseases are both intensely physical and mental at the same time, which makes them doubly hard to manage at times.

30. The fact that you read this list makes me feel: loved

True Story

2011-10-16T21:54:00.000-07:00

I was at a lovely little dinner party this evening with some of my favorite people. Unfortunately I had to empty my pouch while there because well, it's having an issue with me eating or drinking anything. And while that's all true, that's not the punch line to this story.

After my empty as I was tidying up the bathroom, as I have to do, I bent over to get the airfreshner and my favorite necklace (one my mom had worn long ago and given to me) got caught on the toilet paper holder and broke into four different pieces! Yes I broke my necklace on the toilet paper thing, only in my life would that happen. I tell you people the bathroom can be a dangerous place;)

Good news, I think I can take the necklace to a jeweler to have it fixed. I'm going to do that this week since I wear it with a lot. UGH!

Oh the stories of my life.

I Am Alive

2011-10-12T14:55:00.000-07:00

First I have to say, I'm a pretty lucky girl. Why you ask? Well I'll tell you. I've had a number of people today and in the last few days check-in on me to make sure all is ok because I haven't posted here in over 3 weeks. That warms my little heart so much and also reminds me, that just when I think people aren't checking in over here they still are. *Sigh*

I will tell you that I've had a post in the draft section for over two weeks. For some reason I'm having a hard time finishing it, but I really want to. I found the idea on another blog, it's 30 Things You May Not Know About My Invisble Illness. I think it's an important one, but some of the questions are hard for me to answer, emotionally that is. But I promise I will soon.

On the health front here are a few things I know you don't know, but as a good blogger I should have been posting about:)

I had a Hydrogen Breath Test the last weekend in Septmber, you may remember a post back in April 2009 when I did this test the first time (I would link to it but blogger sucks right now and won't let me, sorry.) Funny thing is the hubs had to remind me that I had done it before, I totally forgot, or blocked it from memory whatever. Anyway, it was to look for an over growth of bacteria in my gut and wouldn't you know I have one. I'm on another course of antibiotics, one that is supposed to only be released in the gut. Hopefully it will help the large amounts of gas and bloating that have been building up again. I'm having a hard time with food again and I really am nervous that a repeat of March-May of this year is in effect. I'm working on it.
I went back to the rheumy last week. My hip MRI came back fine, good news is no avascular necrosis, bad news is he just can't figure out what is going on. He believes it's IBD arthritis and fibromyalgia still, which I agree with. I'm going to try a new Fibro med, Lyrica, and see if that gives me any relief. Also, my elbow problems seem to be golfer's elbow -- you know from all that golf I play, I have a killer swing didn't you know?! Basically my loose-jointedness and arthritis tendancies are at work together on my inner elbow, so fun. And to top it off, it appears I do have Sjogren's Syndrome (google for more info) Basically it's another autoimmune that couples on when you have another, and really the symptoms are more annoying than anything -- dry eyes and mouth -- and I'm going to manage with over the counter artifical tears and biotene products. Just add it to the list of ailments in this little autoimmuney.
Last Thursday I was due for my monthly B12 shot. After last month's incident I was hesitant and kept putting it off. I finally did it, at the hubs gentle urging, on Sunday and I'm pleased to report all went well! No bruise, got it in the right spot. The hubs was a great coach and even offered to do it for me when my hand was shaking so bad, but honestly that would be worse. So I put on my big girl undies and took the plunge. I'm happy to report my confidence grew back just a little bit. We'll see what next month brings...

In other news, the reason I haven't been posting here is because we've been working on a pre-placement homestudy for the adoption process. We don't have a particular birth mother match now, but we have been connected with a great organization that requires a pre-assessment if we are matched with a birth mother through them. It's a lot of paperwork, interviews and organizing and a lot of emotional ups and downs, so I've been focused on that. Exciting to feel like we are doing something, so hopefully very soon the right match will come along. I tell you thoughl, as with auto immune diseases, the adoption process is very up and down and not for the weak of heart. I know it will happen, but it's so darn hard sometimes to keep on trucking. But for now we are back to being more hopeful, when just weeks ago our spirits were pretty broken. I guess that's the power of just a tiny bit of faith an optomism:)

That's the brief or not so brief catch up to this point. Thank you again to all of you who really do continue to support me, check-in and me and pray/send good thoughts out for me. Just to know you are out there helps to get through some of the hardest points.

Emergency Preparedness

2011-09-25T17:16:00.001-07:00

I find this very real and serious conversation the hubs and I had on the plane to Hawaii funny. Maybe not hahaha funny, but yes this is our life funny;)

Me: (After reviewing the safety features of our Airbus 767, or whatever it was.) Ok, if we ever have to make an emergency landing, I know they say not to grab anything, but we have to get my catheter. It's right in my purse, we don't need my whole pack, just the catheter. Everything else I can live without.

Hubs: Ok, show me again where it is. Don't worry one of us will always know/be able to grab your tube in an emergency.

Me: Thanks babe, your the best. (Then we both turned back to our books.)

It was as if all people have this convo. And although if I had a straw I could improvise, I would NOT want to do that unless absolutely necessary, I'd be so worried about my valve. And remember, I can't go much more than 12 hours in a pinch without emptying my stool, so this is imperative.

There you have it folks, just another day in the Chronicles of Crap life.

Adventures in Travel with a K-Pouch

2011-09-20T17:09:00.000-07:00

Our trip to Hawaii was my first long flight with my buddy the k-pouch. And although I wasn't too nervous, it did take a little extra thought on my part to plan my emptying.

On the short flights I've done in the last two years, I've had some uncomfortable gas from the altitude, but nothing I couldn't manage. But with this flight, I wanted to make sure my pouch was as empty as possible to alleviate any gas, but to also minimize the possibility of me having to empty on the plane.

Now although this absolutely can be done. I personally did NOT want to go there. I mean tiny bathroom, the potential number of people waiting as I took the 10+ minutes I need to empty and turbulence were just the top reasons why if I could avoid it, I was going to.

Now of course, had I absolutely needed to empty on the plane to be comfortable, I would have just braved it and looked over every one's head when I came out and the stench filled the plane. I mean a woman's got to do what a woman's got to do, but still that's not ideal.

So I decided I would empty as close to boarding as possible (I can leave the stench and take the time in a large bathroom, that's only mildly uncomfortable.) Then as soon as we landed and got off the plane I would empty if need be. And I'm happy to report this plan went just as I hoped and the small amount of gas pain was totally manageable, yippee.

While staying at the hotel in the beginning of the week, I decided that I would empty down in one of the pool or beach bathrooms rather than spend my spoons walking back up to the room and back. It was a trade off for sure.

The first day, I went in and of course there were only two stalls. I set about my routine, all the while I could hear the line building out the door. As luck would have it the person in the stall next to me was taking a long time too!! Oh no the pressure was great, I was sweating and trying to go as fast as is possible, but it was inevitable. One of the ladies in line said, in a nice way, "please hurry up in there." Ugh, ok, I'm trying. So I hurried and packed up my stuff and walked out to the sink without my band aid back on. I figured they needed to know I wasn't just in there taking my sweet time. One lady saw me put the band aid on and asked if I hurt myself and I explained that I had a continent ostomy. She sheepishly said, "Oh my friend has an ostomy."

I was a little embarrassed but at the same time, I know that it was what was best for me and my body. Is it ideal, no, but it's better than the alternative of me not being here.

The next day, thankfully I didn't have the line build up. But when I walked out, a poor young girl was standing there covering her face with her shirt from the smell. And I had sprayed some air freshener! Ummm, yeah, no eye contact there and I sped out as soon as I could.

It's the little things you don't think of until faced with them. And this was just another adventure in maneuvering life as a permanent ostomate. Sometimes I laugh and shake my head and the way things have changed around here;)

Bruiser

2011-09-18T08:39:00.000-07:00

Nice picture right, lovely view. Oh wait you are confused on what I'm looking at?! I mean of the water, not that nasty, GIANT bruise on my right leg.

That my friends is the result of my first at-home B12 shot. Remember when I was telling you that I did so awesome at the doctor's office and I was so proud of myself. Well that will teach me to be so cocky.

The night before we left for Hawaii I was due for my shot, perfect timing. I got it all set up and was feeling confident. I stuck the needle in and immediately I knew things were not right. I bruised before the needle even came out, and then when I did pull the needle out we had blood suprtage. YIKES!

I was home alone, so I tried not to freak out and immediately texted my k-pouch mama, who also gives herself B12 shots. She assured me I was fine, no big deal. And thank goodness because what I was most concerned about is that I was going to ruin our trip.

But aside from the U-G-L-Y mark it left, all was well. And next month, I'll be over at my k-pouch mama's house when I give myself the shot. Still a student here.

Aloha

2011-09-16T20:00:00.000-07:00

Aloha, oh wait you don't speak Hawaiian, sorry I'm still in the mode from our lovely island vacation we just got back from. No big thang.

First, let me say that I believe the Hawaiian islands are just about the most relaxing, wonderful places. You just can't NOT be happy in Hawaii. We honeymooned in Maui six years ago and we were lucky enough to head back, this time to the Big Island, last week.

We spent the first part of the week, just the two of us at an awesome resort, soaking up the sun, decompressing, and embracing the calmness that is the Hawaiian spirit. Heaven I tell you.

The second part of the week, we met up with the Hubs family for the reason we even decided on this amazing trip, his older bro's wedding. We stayed on a plantation that had tons of fruit trees, coffee and cocoa plants. Very cool. Got to catch up with some family we rarely get to see and got to do it pool and beach side, can't beat that. And the main event, the wedding, was so nice and everyone was absolutely beautiful. So glad we could celebrate such a special time with the happy couple.

What you want to see some pictures, well ok if you insist...

Hawaiian graffiti made with coral on the black lava rock.

High Five!

And the picture doesn't even do it justice, every night was A-MAZE-ING.

Oh don't worry, this was the view from our room at the resort. The dolphin lagoon (with 8 dolphins, including an 18 day old baby) in the foreground and yes that's the ocean just beyond. Life is rough.

We splurged and got the convertible and I'm so glad we did. It allowed us to enjoy the scenery and sun that much more. (He immediately changed into more island appropriate attire as soon as he could.)

We love self photos. My cutey and the sunset, total perfection.

Remember that Dolphin Lagoon I mentioned we viewed from our room, well they had a dolphin encounter program and the Hubs did it and LOVED it. I loved watching him and the dolphins from out of the water;) Truly beautiful animals.

My new sister-in-law, the lovely bride, and her Maid of Honor, who just happens to be my future sister-in-law:) She'll be marrying the Hubs younger brother next summer, yeah -- we are so excited!

The family, minus the girls seen above. Me, Hubs, MIL, the Groom/Older Bro, FIL, Younger Bro.

Weddings are a perfect time to reminisce on our own special day. I love him A LOT.

It was a great trip. Can't believe it's come and gone already. It's always good to be home, but I'm already dreaming of the next time we can head back to the islands.

Go Run-Ears!

2011-09-04T12:46:00.000-07:00

This morning we woke up bright and early (3:30 a.m., yikes!) to go support these two in their second 1/2 marathon. This was the Disney run, through Disneyland, Angels Stadium, Downtown Disney and the surrounding area. It was a great morning and I'm so proud of them for taking on this challenge...Again.

Go Run-Ears! Both did great with their times and look cute to boot. Check out that bling they got for completing the race.

The cutie K, most adorable member of the ChEar squad. We got to see lots of Disney costumes along the route and in true Disney fashion everything was very organized, friendly and clean;)

And as if two 1/2 marathons wasn't enough, both the hubs and J have signed on to do the CCFA Team Challenge one again in Vegas this December. Which means that they will complete 3 1/2 marathons in a year -- WOW.

Don't worry, I'll share info on that and how you can support the CCFA fundraising efforts soon;)

Super

2011-08-29T10:26:00.000-07:00

Hmm, let's see where have I left you all in latest adventures of Auto-Immune Girl. Oh wait you haven't heard of her, that's because I just gave myself the name;) It has a nice ring to it, doesn't it. I might need a costume to go along with my Super persona!

So before we went off to the land of Happy, I saw my GI. We went over the results of my iron infusions, next steps, how to deal with this good ole' body of mine. Here's the run down.

Good news is the iron infusions worked! My ferrattin went from 4 to 32, whoa baby. So although it didn't help my energy, the blood work actually proved that it did it's job. No need to keep them going for now, we'll just keep an eye on things as we move along.
Although the iron went in the right direction, my B12 kept on dropping. (Us colonless peeps don't absorb the B12 well) So I'm now going to be giving myself monthly B12 injections. The nurse walked me through the whole process at my appointment and I gave myself my first one with her watching. It was actually totally empowering and I won't lie, I was pretty proud of myself.
I need to order this anti-nausea med she recommended. Thing is I have to get it from Canada, so it will take a bit to get here. But hopefully it will help.
Since as she says, "I'm a difficult case." Our overall goal is to tread lightly with me and above all else keep me out of the hospital. I'm to go on a liquid diet anytime I feel my bowels getting out of control -- easier said than done.
At my next appointment we'll discuss a scope of my pouch, fun!
I told her of my major joint issues and she said me and the rheumy really need to come up with a plan to better manage.

Speaking of the rheumy and my joints. Both are really frustrating me. I have left 3 messages for him over the last two and a half weeks and nothing. The last time I called the nurse said he was behind on his messages. You think?! As I've mentioned before, he spends a really unusual amount of time with his patients, which is amazing, but makes him run late. Apparently that flows over into his messages.

But here's the problem, my arthritis/fibromyalgia is getting worse. And I'm trying to do what I can, which isn't very much. And more than anything I just want to talk it through with him. In addition to that, I'm having extreme dry mouth, dry eyes, dry lips (and it is not allergy related) I need him to call me back ASAP!

Super Auto-immune Girl is still on the trail, busy as ever, but trying to work her powers within the challenges her biggest opponent -- her body -- throws at her:)

My Happiest Place on Earth

2011-08-23T09:26:00.001-07:00

Last week was spent at our little slice of heaven, the Chronicles of Crap's Happiest Place on Earth. We were in the mountains of Nor Cal, in a small town by a little man-made lake. I've been going there with my family just about every summer for more than 25 years! The hubs has been going up there with me for the past 12 years and sometimes I think he loves it more than me, which seems nearly impossible;)

We rent the cabin of our long-time, very dear friends (Hi D!) We spend our days floating on inflatable rafts and eating lots and lots of corn dogs, fries and junk at the Snack Shack. Our evenings are spent BBQing, reading, playing the BEST mini golf course or heading to the local casino. Do you see why it's just plain awesome?

Creekside Love:)

The girls. It was Super G's first time at the Lake and she LOVED it!

Ah the glorious corn dogs! There is just something magical about them. Don't judge.

Look at how beautiful that lake is with the trees lined behind it.

Self portrait at our little beach set up.

Me and my "little" brother at mini golf.

FISH BONUS! Oh yes that's right, I won over $100 on a penny slot. Most exciting 45 minutes I've had in a long time. Hilarious.

Now this is the life!

Our sweet little family just before we tee'd off.

Al's Mail Bag

2011-08-21T09:54:00.000-07:00

Dear Blog,

I'm so sorry you've been neglected for TWO whole weeks, but you see I just got back from vaca last night. I promise to TRY to be better about spending quality time with you this week. I love you, I really do, but when I have spotty wifi and I am spending every day on the lake, well sometimes I put you on the back burner.

Love, Your writer

......................................................

Dear Neo and Pitbull,

Please stop stalking me with your song "Give Me Everything." I swear it's on every station, in stores, and on TV every second of every day and I just can't take it anymore! I used to like it, you know a good foot thumping song but now it makes me CRAZY!

Love, The Girl with the Bleeding Ears

.....................................................

Dear B12 Shots,

I learned that I'd be needing you once a month at my last GI appointment. I also learned how to shoot my leg with you and I have to admit it was pretty empowering. I'm actually looking forward to our monthly date. Here's to hoping you give me the energy boost I need.

Love, The Vitamin Deficient

....................................................

Dear Summer Tan,

Thank you for giving me a "Healthy" (hahaha) glow. I swear I must have looked wretched for the past two years, because although not much has changed on the inside, the compliments on how "well" and "great" I look are coming left and right and I know it's because I'm not ghostly white anymore.

Love, My Skin

..................................................

Dear Elbow and Hip Joints,

You are really making me mad these days! STOP.

Love, Your Owner

..............................................

Dear Summer,

I can't believe you are almost over. It's been a busy one, with one major adventure left, but we thank you for it. I'll definitely be ready for fall soon, but I'll relish these last few weeks with you.

Love, The Chronicles of Crap household

Six on The Sixth

2011-08-06T10:32:00.000-07:00

Today, the hubs and I celebrate our sixth wedding anniversary on the sixth. Don't you just love that?!

As I've said in past posts, I absolutely love this day and what it means to us. I love that no matter that there is absolute chaos and uncertainty all around us, one thing is for certain and that's our love and respect for each other. It's the one thing we don't stress about, but that doesn't mean we don't work at our relationship every single day.

Happy Anniversary Babe. I love making it work with you and look forward to holding your hand through all the ups and downs for as long as possible.

Want to read what I wrote on the two August 6ths before, go here (Man you think I really like this guy or something!): 4th Anniversary & 5th Anniversary

Mish Mash

2011-08-02T18:57:00.000-07:00

I'm not feeling very creative in the writing department these days. Yet, an update is necessary if only for posterity's sake.

So here's a smattering of what's happening around these parts.

1. The good old body is well being itself. I'm having some twangs of intestinal distress, but I'm hoping that it's nothing. Do you think that tactic will work?;)

2. I called for the results of my hip MRI but unfortunately my rheumy is on vaca until next week. He'll call me when he's back and at that time I'll ask him about a few other symptoms I'm having. Oh the joy. Good news is I'm going with there is nothing emergent to report from the MRI.

3. I had the MRI of my abdomen a week and a half ago. I realized while I was there that I had actually never had an MRI of the abdomen. I know, gasp, right. Well I realized this because I had to do a series of 50 different breath holds during the scan, one of which was 38 seconds long. I assure you I would have remembered that.

4. I did a basic yoga class with my lovely friend N last Friday. It was on the street in a nearby beach community. It was so good for my Fibromyalgia, not so good for my arthritis. It was so great to be out there mentally, but also a bit frustrating because my left hip is definitely very injured. I'll keep trying a very gentle yoga approach and do what I can do. My problem is holding myself back.

5. It's our sixth wedding anniversary on Saturday! I just love that day to celebrate our sweet relationship. No big plans and I like it that way.

6. We are having some professional pictures taken on Sunday morning. We haven't had any since our wedding day! It will be nice to have some so close to our anniversary and we are hoping for the perfect picture for our revised Adoption letter and website we are working. Intrigued?

7. I can't believe it's August already, where does the time go.

8. Our poor Charlie girl has terrible allergies. One of the worst cases our vet has seen in a dog her age. And to that I say, could she be any more meant to be my dog? She's on the mend now with some medicine.

9. I go next week to my GI to review my blood work and see how the iron infusions worked and also get the results of the above mentioned abdominal MRI.

That's the latest from these parts.

A Magical End

2011-07-19T10:16:00.001-07:00

Can you guess where I am today....Yup the good old infusion center. It's a great place for posting.

Anywhodle, if you are at all exposed to media you know that the 8th and final Harry Potter movie was released last week.

The hubs and I were lucky enough to attend an advanced screening on Thursday evening, preceded by a cocktail reception and some snacks from the gourmet concession stand at a lovely LA theatre to celebrate this momentous occasion. A fitting sendoff for our 12 year journey with the Boy Who Lived and his wonderful friends.

The movie was truly magical. I loved it. I cried through most of it, laughed out loud and felt heart sick when it was over. The creators did an incredible job capturing the emotions of the book.

12 years ago, we had just moved from Nor Cal to So Cal for college. When we left my mom picked up the first Harry Potter book on a whim, before the hype. She read it the week I left home. She gently encouraged us to read as well, there was something about this story.

So on one of our first drives back home to visit, we got the book on tape and we were hooked. The story, the writing, the characters -- all amazing. It made me fall back in love with books. Thankfully the second book was already out and we jumped on that one too. It was as if we were at Hogwarts, friends with these very real people.

My dad, always a book lover, read it too. The four of us forged yet another bond, over one very powerful story.

We waited in line for the third book at midnight, Hubs and I here and my parents in Nor Cal! The feeling I had seeing little kids out waiting for a book was one I will NEVER forget. It was amazing.

The sixth book came out the week before our wedding and it true nerd fashion we both devoured the book on our honeymoon. We even have pics of it. We wouldn't have had it any other way (except we would have bought two books so the hubs didn't have to wait for me to finish;)

The first movies were released in November, around my birthday, and even though I was in my early to mid 20s this is what we did for my bday for a few years. And I loved it! (Thank you to CRN, who powered through them, even though he wasn't all that into it, while the rest of us geeked out.) The movies were a great tribute to the books, which made it even more fun to be in the dance of movies and then books being released.

The 7th and final book, The Dealthly Hallows came out in July of 2007. Just weeks after, my dad passed away. One of my very first irrational thoughts after he was gone was that he wasn't going to get to read the final book! I said so to my mom with a tone of distress and she, in her warm way, reminded me that he already knew now how it ended;)

That book, that summer was a saving grace, but also bittersweet. It was also the end of a story. But reading it and thinking of my dad was so comforting.

So here we are, the final movie out. So much has happened in the last 12 years, but I've loved having Harry to look forward to whether in books or on the big screen. I knew going into it that I would be emotional, I love these characters. I love the morals weaved through the words. I love getting lost in the pages for hours at a time. I love that I can watch the movies over and over. I love what it means to our family.

But the true beauty of books, just like the people we love is that they are never totally gone. I will read the entire series over and over (I already have) and I can't wait to read them to our babies. I will buy the outrageously priced movie box set and I will always find solace with Harry, Hermione and Ron.

Summer Cold

2011-07-17T11:58:00.001-07:00

Yes that's what I have, so I'm at home doing absolutely nothing because that's what a little cold demands in this body. It was a very busy week, another one is coming, and I'm being TOLD by my powers that be that it's time to chill and it will force me to do so.

So although I have a very Magical Harry Potter post to do, my head is foggy, so I'm going to just post some happy recent photos and thought-provoking quotes (I'm addicted to Pinterest right now, that's where I'm finding all these lovely words.)

Pumping Iron

2011-07-12T10:32:00.000-07:00

Here I am again, posting from the Infusion Center. It's good, uninterrupted time to post and focus.

About two hours after my last infusion the worst body aches set in, like the fly x10. So today we are going to try and combat that with a dose of Tylenol when I leave. I guess it's a side affect that's not common, but can happen. Go figure right?

I have to say I didn't notice a big difference in energy after the last infusion. There is some debate on whether my body can properly absorb the iron. So we'll see what happens after this one. I have one more scheduled for next Tuesday and then I go back to the GI the second week in August. My big question is why the seemingly sudden drop in iron lately?

I also finally have my MRI of my left hip this afternoon. Hopefully that will show something as to why my hip hurts and my left leg in general.

Speaking of that left hip, I didn't let it hold me back from going on a small hike while we were away last week. With the help of crutchy and the hubs, I was able to take in some of the beautiful oasis' in the desert (not to be confused with mirages!) It was hard and I was very sore, but it was so worth it.

Lesson learned, using the help of the crutch might just allow me to do more and more;) UGH, hard lesson, but it could be so much worse.

You want to know the greatest accomplishment of last week, actually going in the pool. It has been a long time -- four years -- since I have been able to do so without worrying about poo problems or post surgical issues and what not. It was glorious and I found the perfect waterproof band aid/gauze combo to effectively cover my little stoma buddy. Woo Hoo.

Also, spending so much time in the pool last week was so great on the whole bod. I'm going to look into some water aerobics too.

So you see our vacay was offered a plethora of discoveries and relaxing moments. It's moments like these that I realize again just how lucky I am. That I will continue to persevere and do the things I want even though it's hard on my physically because the emotional benefits are so great.

So as I sit here pumping iron, fighting the nausea battle that's raging once again these last days, I'm going to close my eyes and think of that hike, the gorgeous scenery and those pools and smile.

Refreshed

2011-07-10T13:08:00.001-07:00

(Taken at an oasis in the desert, weird right?)

We just got back from a week long vacation to the desert! It was glorious and relaxing. I'll be back with a real post soon, just didn't want my regulars to worry too much;)

Hope you all had a fabulous Fourth, I know I did.

Infused

2011-06-29T10:02:00.001-07:00

This is not at the Infusion Center, but wouldn't that be beautiful scenery if it was.

Today's post is being brought to straight from the Infusion Center, sponsored by Al's doctor week extravaganza.

Do you feel like you are on a cheesy game show?

I really am at the Infusion Center getting my first of three iron infusions. More on why I'm getting them a bit further down. But I will say thank goodness for free wifi and a big comfy chair.

As I mentioned in my Planking post, last week I did my tour of doctors -- GI and Rheumatologist. Both were follow up appointments.

First up was Dr. GI. We had a lot to discuss since I hadn't seen her since my little visit to the ER last month. My heart rate, fever and blood pressure were all elevated when they took my vitals, which they noted and told me to keep an eye on.

We reviewed all the labs and tests I had while in the ER. My blood work showed my hemoglobin was down, she thinks due to low iron, blood loss. My CT scan, although it didn't show an obstruction (probably because it passed before the scan) did show some inflammation right above my pouch. It also showed a nodule on my liver, which all my other scans have shown too and it appears it's nothing, but she's the first dr that wants to look into it further so I'll be having an MRI of that soon.

But back to the GI symptoms, well as usual we just don't know. Is that all my scar tissue really inflamed and squeezed by bowel, is it actually more Crohn's like activity, there is no rhyme or reason.

The plan is to see how things go, if I get back to feeling very bloated, gassy pains, etc. I'm to call right away and get scheduled for a breath test. She is also going to talk to one of the top surgeons about doing a follow through series through my stoma to ensure I don't have a stricture somewhere. She asked me to talk to my Rheumatologist about a possible course of steroids -- NOOOOOOOOO. She said she knows that last resort, but it might help. Her goal with me is to not just throw a bunch of meds at me, because I'm not like everyone else. I liked that approach.

The next day I was off to the Rheumy. And again, my vitals were out of whack and they were concerned so they ordered blood work, which I did after my appt. We discussed my main source of pain these days, my left hip down to my left ankle (all other joints are stiff/painful but status quo of where they've been, which is good.) He said he wants to go ahead with the MRI of my left hip and leg to check for avascular necrosis and that we wouldn't do any Prednisone discussions until after we get those results. He said to keep using my crutch when I need to for longer walks, etc.

Rheumy called me this past Monday night with the results of the lab work he ordered and my hemoglobin and red blood cell counts were down still to 9.1 from 11 in mid-May. I have a message into my GI to see what she thinks the reasoning for this sudden steady decrease may be. I don't think that I have more blood than normal. So what is causing the anemia?

What I do know is that anemia can cause severe fatigue, rapid heart rate and low fever, but there are a number of causes for anemia itself. One of which is chronic auto immune issues. Just another chapter to fill out I guess.

To recap:

Waiting for a referral for MRI of liver
Waiting for a referral for MRI of left leg
Waiting for discussion on follow through series through stoma
Have two more iron infusions after today
Keep an eye on things from there

And there you have it folks, another update from the Chronicles of Crap. Never a dull moment and never a clear path, but we keep on trucking.

We Took Steps

2011-06-27T12:50:00.001-07:00

Yesterday was the CCFA Take Steps walk that I've been hyping up around here;) And it was a great day -- beautiful weather, wonderful people and an inspiring energy.

I was once again reminded in the most lovely way, how lucky I am to have the friends and family I do. I was surrounded by so many of the people I love most in this world! They really do help make my world work and I don't know what I would do without them. An old family friend even surprised me by coming with his wife and it made my heart swell.

My Little Buddy, J, sporting his Poo Crew Spirit.

My hubs takes such good care of me, keeps his eye out for me to make sure I don't need anything and reminding me not to push myself too hard.

My sweet mom was here from Nor Cal. She's been my biggest supporter every day for my whole life and I love her to the moon and back.

We love these kiddos SO very much.

My best girls and their girls (minus A and the lone boy J.)

I was able to walk a little further along the route this year with the help of my crutch and then I hitched a ride in the wagon again for the rest.

Thanks to so many of you, I was able to raise close to $2,200! And my team, the Poo Crew, will come in close to $9,000 when all the totals from yesterday are entered. Can you believe that! We sure did kick some serious IBD booty this year, while spreading education to so many more patients.

Being so empowered feels so good!

Planking

2011-06-25T09:02:00.000-07:00

I do have a few posts that I need to write. It was a busy doctor week around here, but we were without our little MacBook this week, he went to the Macdoctor too and just came home yesterday. You don't realize how dependent we are on computers until you don't have the one you love.

But for now I'll leave you with our first adventures in "Planking" (look it up online, it's the new phenomenon) We are gearing up to actually do it in public soon;)

Cutest planker ever, look at that form!

Straight as a board. Do you see that cute little blonde head peaking out too.

Super Plank!

The Press

2011-06-19T08:52:00.000-07:00

Hey guess what this here little 'ole blog was featured here and here this week!

I don't even know how the B.12 site found me, but hey if it spreads the word and it helps, I'm all for it.

Also, a lovely young woman from Canada contacted me this week -- Hi Jennie! She's a true inspiration to me and so many others. Check out the blog she has with the Youth Advisory Council for the CCF of Canada. Go here.

I am still astonished when people find and contact me through the blog. It makes me realize that reaching out, connecting and sharing stories really brings us closer together and encourages all of us IBDers to keep on fighting!

I'm as always humbled to be doing my small part to reach out to patients all over the world.

"Here’s what our doctors didn’t tell us - IBD isn’t the only thing that’s chronic. We can be chronically determined, chronically optimistic, chronically fighting for our lives. And who knows, maybe one day not too far away, our chronic fight will win us a forever of health."

-- Jennie David, my new friend from the North

Get to Steppin'

2011-06-14T10:42:00.001-07:00

We are just a week and a half from our Take Steps walk for the Crohn's and Colitis Foundation of America. I can't believe it's going to be our third time participating, I'm so excited.

This year, I'm so blessed that our great friends will once again be with us, supporting us, but my mom and her friends are coming too! I'm one lucky girl with lots and lots of love around me

If you can't be here, but want to participate, it's not too late to donate to this great cause.

I want to kick these diseases twice as hard as they've tried to kick my little booty.

Click HERE or on the pick of me and the cutie K above, to donate today. Any amount means that we are taking one more step towards a cure and in the meantime providing so many important programs for those suffering with IBD.

Go Poo Crew!

A Letter: Four Years

2011-06-11T10:23:00.000-07:00

Dear Dad,

How can it be that four long years have passed in the blink of an eye since we last saw you? I know I've said it before, but time really does play tricks on a person, especially one missing someone so very much.

People keep asking if it's getting "easier" to deal with this day and you not being here. I find that a very interesting and hard question to answer. Because no it's not easier at all, in fact sometimes it's harder. Yes it's not as raw and open a wound as it was in those first days and that first year. I mean I know you aren't here and yes I've had to adjust as best as possible to not being able to call you everyday. But now it's the fact that four years have gone by and that's so few years in the grand scheme of how long I'll have to wait to see you again. There's that time thing again, right?!

But I know you fought as long as possible in your body, who fought you at every turn. I know it was time for you to let go as much as you wanted to stay with us. And I understand that feeling more and more these days. And in that you continue to teach me lessons every day, and I find that absolutely amazing.

Although we've missed you physically here, being a part of all of life's adventures -- good and bad and indifferent -- I still fully believe you've never stopped watching over us from your vantage point.

I still see signs from you, especially when I'm most down and I'm thankful for that belief in faith.

I love you, I miss you. Here's to us down here making it through as many years as we can until we meet again.

Love,

If you'd like to read my posts from this day in the last few years go here and here.

Four!!!!

2011-06-07T10:48:00.001-07:00

(Ready to check everyone in.)

I was always proud to say my dad was a police officer. He spent nearly 30 years serving people and he was darn good at his job. He was about helping the underdog, making sure justice was fought for and Paying it Forward.

After he passed away, we set up a scholarship fund in his name that helps men and women who are putting themselves through the Police Academy. Many departments pay for their new recruits to attend the academy, but those who want to pursue a career in law enforcement but haven't been hired have to pay their own way -- this is becoming more prevalent in this economy.

This past Friday we held the fourth annual golf tournament to support our scholarship fund. It is held in conjunction with the retirees tournament from my dad's department.

It was a great day, seeing lots of old friends, people who loved my dad and who my dad loved. About 60 golfers enjoyed the relaxed 9-holes and we had a great BBQ. All in all, close to 100 people were there to support us. Plus our little family was all together and it was a peaceful and happy time.

One of the best parts was that we raised $6,000! It's exciting to think that we'll be able to keep providing scholarships. My dad would love all of this and that makes it that much more exciting.

It's hard to believe that this Saturday it will be four years since he passed away. It's nice to have this event so close to his anniversary to celebrate his life and keep his memory alive.

Four!!!!!

Totally Gleeky!

2011-05-29T09:56:00.000-07:00

Maybe if you know me in person, you know that I'm one of those people who absolutely LOVES musicals. I've often said over the years, that I really wish life was like that, you know break out into song randomly and then just continue on like you didn't just perform a huge musical number. You know what I mean, no?

Well two years ago, when the hubberz came home from seeing a pilot for a new show on F.ox, he simply said, there is show coming out in the fall that was MADE for you. I couldn't contain myself, and he was so right.

Yes my friends I'm a total Gleek. At first I loved it all, the music, the writing, the characters. But now, I will say they really keep me coming back for more, simply for the big show stopping musical numbers. I HEART them.

We had talked about totally Gleeking out and getting tickets for the tour, but then I felt bad spending money on that. But not to worry, because this past week the hubs got his hands on some tickets for the show last Friday. He rocks!

Glee Live in Concert, yes please!!!!

And so we went, and it was magical. We already had awesome seats, but it turns out they had a huge camera and moving arm right in our section, so they relocated us to the other side of the arena to even closer seats. Plus they gave us some free swag for the trouble (see above.)

We were in the first section to the right of the stage in row B! The below image of the stage is taken from our seats. To the immediate right of us was the backstage and crew, we could see the performers before they went on stage, A-MAZING.

My face literally hurt after from smiling so much, we had a blast (the hubby is such a good sport.) The singing was outstanding and the dancing, oh the dancing. Plus the hilarity of all the screaming people just added to the fun. I'm just bummed we didn't take a picture of us with the stage behind us (I had a totally cute outfit on and all.)

Yes I know I'm a total nerd, but I own that big time and I'm proud of it!

It was a Gleeking perfect night.

True

2011-05-23T13:19:00.000-07:00

(At the hub's cousin's wedding this past Saturday.)

"Hope is a talent like any other."

-- Margaret Storm Jameson, English Writer

I Floated Right Into Reality

2011-05-19T16:42:00.000-07:00

For the last few weeks, maybe even over a month, the cramping and nausea in my belly has steadily been increasing. I mentioned it to my new GI back in early April and we tried a gut-based antibiotic to see if it was a bacteria overgrowth, it wasn't.

Anywho, last week things started getting really "uncomfortable" shall we say. By Thursday I was saying to myself, "I should probably be calling the doctor just to talk about my symptoms."

Well of course I put that off and Saturday was a BAD day (which was unfortunate because we were at an informational adoption seminar gathering more info.) As bad as it was, I was still passing stool so I knew we didn't need to go the ER just yet. I was floating down the river de-Nile.

I left a message for my new GI on Monday and pushed on through the pain, with the ever nagging feeling that I most likely had a partial blockage. Monday night we were so close to going to the ER, but I was still not ready to face the music.

My doc called back at 5 p.m. Tuesday and she said it, "It sounds like you have a partial blockage. You need to come to the ER."

Ugh, I liked floating down the river, but I knew it was time to face reality -- my life's reality. And going to the ER every now and then with these types of things is just the way of life.

So off we went, to the new ER where Dr. GI works. She called ahead for us and it was a very pleasant ER experience. I got my big pain meds, some IV anti-nausea and a bag a fluids. Had and Xray and CT scan. There was some inflammation in the small intestine and although they didn't see a partial blockage they said it probably had passed by the time the CT was done.

Around 5 a.m. I was released to go home and rest, lay low and be kind to my bowels. I spent all of yesterday sleeping, literally, which even when I'm really sick doesn't happen. So I guess I needed it.

Today has been much of the same. I'm still feeling pretty crummy, I just need to keep an eye on it, call if it gets worse.

I won't lie, I was pissed about once again being faced with this part of my reality. I didn't want to go and I was in pain and I wanted to stamp my feet and throw a major tantrum. I wanted to run away from reality.

But that's not a choice now is it. The fact is, that this is how things are and will be. I won't know when something like this might happen and all I can do is roll with the punches, know where to go and move forward from there.

This wasn't a new reality, just one that I can sometimes push away. Does it make me want to stop fighting, sometimes, but not really. Do I want pity, no. I just wanted to explain that this is the life of an auto immuny. Totally radical and spontaneous;)

Sometimes I'll keep right on floating down that good ole' river De Nile, but I always jump out when I have to.

In Print

2011-05-16T12:03:00.000-07:00

A couple of weeks ago a reporter from the large paper in the county to the south of us, came to the Chronicles of Crap household to do an interview with little ole' me.

You see, I've become very active in the Crohn's and Colitis Foundation of America in Orange County. I'm on the volunteer leadership board and help co-facilitate a support group. It has been a great way for me to take control over some things this disease had tried to take away and I feel like I'm paying it forward.

My mission continues to be to ensure others with IBD do not have to feel alone in their fight.

Anywho, I've struggled with even putting this on here, because as much as I love to chat and speak in public, I do NOT like to toot my own horn or receive personal attention of that nature. And I don't participate in any of these things for recognition of any kind. But I have to see that it's in the name of spreading awareness of Crohn's and Colitis and the work of CCFA.

And in continuation of that, I am humbled beyond words to let you all know that the CCFA has named me their Honored Hero at the Orange County walk in June!!! And although hero is too strong a word, I won't let them down in this great honor. You can read more about it here.

Which brings me back to the reporter coming on over. She was here to talk to me about the walk and the honor. I was happy to share my story in hopes that somebody might read it, connect with it and find hope in it.

The online article ran last week, with some horrifying photos of me and some factual errors as to the name of my pouch in the photo captions. But hey whatever it takes right.

But the actual print edition ran this past Saturday. And although it was weird to see myself in the paper, you won't believe it, but three people have contacted me through my blog email address. Letting me know they've had the disease for years, that they were excited to see a real person sharing their story and to connect.

I'm flabbergasted! I find it completely incredible that an article in the local paper has made an impact in our community already and I really am so proud to be a part of this. My mission is working.

My faith in the printed newspaper was restored too. It really does work and people still read.

So if you're a new reader that found me through the article, "Hi and welcome!" Don't be shy, leave a comment if you feel inclined. I'm so happy to e-meet you all.

It's the Little Things

2011-05-13T17:17:00.000-07:00

Lest you think I am the queen of Debbie Downers, I thought I'd let you in on the little things that have been happily dancing around in my head this week. (Oh yes it's been said that this here blog can be a bit of a drag. And although I don't apologize for any of it, because I don't find it negative it's actually just my life, here's a friendly reminder that I'm pretty easily amused.)

I went to buy the hubs some hair gel at the beauty supply the other day -- that do doesn't do itself you know. Any who, I had a $5 off coupon but when I got there it was double coupon day. Woo Hoo $10 off, I was so happy and giddy for hours about it.

On a similarly surprise coupon thing, I went to get gas at our local grocery store's fill up station the same day as the hair gel score, where club card holders always get $.03 off a gallon. The night before, hubs had filled his car off with the $.10 off discount we had. So when I went, wouldn't you know I was so surprised when I also got $.10 off. We must have wracked up a lot of points. But what does it matter, when gas costs an arm and a leg, $.10 off is a Christmas miracle.

Yesterday I heard so many of my "sentimental" songs on the radio of all places, wasn't even playing my I.Pod. It was awesome and I couldn't believe it and I got more and more excited every time I heard one. Then the hubs called and at a different time in the day he heard one of the songs too, how cool is that?

My crutches arrived the other day, and although that's not exciting. The color of them is very entertaining. If I have to get around all limpy, I might as well do it in style right, but just in the house ok?

(yes I know this pic is sideways but I'm too lazy to turn it, save it, etc, so just tilt your head to the left.)

The little Cutie K is really into seeing my "owie." She says, "See Al, boo boo?" I show her (only if we aren't in public of course), then she gives me a kiss, sometimes on my cheek, leg, arm whatever and then she looks up at me all cute as pie and says, "Al boo boo getting better!" (I told her when she comes over she helps make my boo boos better with all the love she gives.) So you are dying of cute overload right? Yes me too.

I walked by our kitchen table (where we have a kiddie seat for the Cutie K) and literally did a double take when I saw this...

This has never happened before, that crazy cat!

Ahh see I'm still laughing/shaking my head over all of these little things. It's when you stop seeing the small things that you know you have a real problem. Happy Weekend.

Not Yet

2011-05-10T10:31:00.000-07:00

Sunday was a pretty hard day for me. Not because I care to have a day where people celebrate me or spoil me, or because I felt left out of a larger group, but because it was a very prominent reminder of what I am NOT, but what I desperately want to be.

Being a mother to me is not about crossing a goal off my life list, doing what everyone else is doing or defining who I am. It's about giving the unconditional/selfless love I have and know I can give to our sweet baby whenever/wherever they are.

Last year on Mother's Day I remember hoping it would be the last one where I woke up without a baby of my own to snuggle. But alas that was not the plan for me this year. And my patience and faith continue to be tested, both in my health struggles and in taking on my most coveted role.

Thank you to those in my life who acknowledged that this weekend was emotional for me. Allowed me to be sad and felt that sadness with me. It means so much to have so much love and support around me. I will never take for granted that so many others don't have this as they walk their dark and lonely paths.

I, of course have hope that on some second Sunday in May, I will be awoken bright and early by my own sweet baby and I will hold them just a little bit tighter, because for me, getting to that moment will have meant so very much.

But when I do get that moment, I will also be thinking of another mother, my baby's birth mother, and how out of her hardest, most life-altering choice, I was given the most precious gift a mother can receive.

I haven't been able to experience Mother's Day from that vantage point, Not Yet anyway...

A Royal Affair

2011-05-03T13:31:00.001-07:00

Last week, I was in Nor Cal, with my bro, sis-in-law and niece, Super G! My SIL had surgery on her ankle on April 22 so I helped her with G and some house stuff so she could try to recuperate as much as possible with a 1 year old;)**

Anywho, the girls and I decided we needed to truly celebrate the Royal Wedding in style. So we had our own Royal tea party. It was so much fun and made the whole experience that much more memorable. We can't wait to tell Super G when she's older what she was doing when the future Kind and Queen of England got married!

Our elegant spread. Tea sandwiches, crown-shaped cookies and tea in SIL's grandma's teapot.

The super cute and absolutely adorable Princess Super G! Look at those curls. We all wore these mini-tiaras.

And if you think the back of her is cute, if you could see that face you would absolutely melt. She's a total doll. And I may or may not have teared up when I had to go home.

I loved every minute with all of them!

Although it was a not-so-fun reason to visit (my SIL is a trooper for as much pain as she's in and all she's gone through), it was a great trip. I had so much fun spending time with these girlies and getting a little time in with my bro too.

**My SIL was hit by a car, yes her leg was literally hit by an SUV driven by a distracted driver, back in December. Unfortunately her ankle break was so severe that it didn't heal and she had to have a follow up surgery. Very scary as she could have lost her leg and her life and her family's life is changed forever. A warning to the wise, turning around to look in the backseat of your car, even for second, can have life altering effects!**

Living in Harmony

2011-04-25T11:28:00.001-07:00

Buddy and Charlie are finally figuring out exactly how to be friends!

Hey Rheumy Take 3 -- Crutch?!

2011-04-19T15:07:00.000-07:00

I went to see my buddy the Rheumy yesterday for my third appt.

I filled him in on how the Gabapentin made me Cra-zay! and I didn't even get any relief from my symptoms and he agreed it was good that I stopped when I did.

I let him know that new GI wonder has me on a new med to hopefully help if I have bacterial overgrowth, he liked that.

He was happy I hadn't started the second drug he had recommended last time since the prime side effect is nausea and since mine's been at a level 100 lately, we need to wait for a better time;)

I told him that all my other join issues had remained the same, no better, no worse, except for one...my left hip.

It started with sharp, random pain about three weeks ago and that has continued intermittingly throughout the day accompanied by constant throbbing.

Because he only had the right hip MRId back in January, we may now have to see what's up with old lefty. But we both agreed that before we do that we should see if it gets any better on it's own.

Are you ready for his suggestion on how to "rest" my leg?! Oh he suggested a cane or crutches, yes you read that right.

Now the funniest part of this story is that my mom was visiting when the hip started hurting and she suggested the same thing and I rolled my eyes at her and was pretty much not hearing it. UGH. Mom's really do know best, I guess;)

So my rheumy says I don't have to use it all the time, just to help lighten the load on my leg. I need to avoid a lot of stairs and use the heating pad. If it's no better in two weeks to call...

Could just be an arthritis flare, could me muscular, but what he's worried about is something worse, that whole avascular necrosis thing. We shall see, until then, I'll just be gimping around town hopefully with a sweet cane (he wanted me to get Canadian crutches -- the ones that go around your forearm, but they are $100! No thank you.)

Full Time

2011-04-09T11:43:00.000-07:00

I'm in a blah-blogging mood. Don't really have it in my brain what I want to say. Usually a title pops in my head and I go from there, not so today. So I'll just give you a quick update on my full-time job as a professional doctor visitor.

I went two weeks ago for the ultrasound on the lady parts. And yes I do have fibroids, they are around the uterus not in it. My uterus is tipped back and to the right (always new it was tipped, probably got pushed to the side from all the surgeries in the area.) I will eventually have to have a procedure to take care of the fibroids, of course it's more risky I learned because of the way my uterus is situated, I mean why wouldn't it be;) But like my nose surgery, which I've yet to deal with, it doesn't have to be done immediately.

The following week, hubs and I went to see the fertility specialist. He was great, but concurred what my other docs have said, that carrying a baby on my own would not be a good idea for a number of reasons. We already new it, so it wasn't a shock, just a final confirmation. We got more information on IVF to retrieve my eggs and gestational surrogacy. The biggest thing we learned is that GS is way out of our financial reach and will stay on the back burner.

The one question here is should we retrieve the eggs and freeze them so I can have the fibroid procedure (we have to get the eggs out if we want them before that happens.) Ahh the decisions we have to make in this household are crazy.

Last week I went to meet a new GI, she was recommended by the awesome Cleveland Clinic dr, plus everyone in our area says she's the one to see. I had sent my records prior and the nurse did call to say that Dr. P did say that she probably wouldn't be able to provide any better insight into my issues. I said that was Ok and that I was really just looking to build a relationship with a great GI in the case that I have an emergency.

So after going to the wrong office and finally making it to my appt an hour late, I met Dr. P and really like her. She wasn't warm and fuzzy, which is fine by me, but she was straight forward and interested in me. And I'm happy to know that if/when I have an emergency I can go to her and she will at least facilitate getting me the care I need. She also suggested that maybe my nausea is due to a bacterial overgrowth in my pouch so we are trying a med for that. But she also said it might me due to chronic and severe scar tissue/adhesions and there is really nothing we can do to make that better.

Next up, it's back to the rheumy on April 18.

It really is a full time job keeping up with all of these appointments, treatments, next steps, etc.

My Mother's Love

2011-03-30T10:37:00.000-07:00

(November 2010)

My mom's visit was this past weekend and although I say this every time, this time it couldn't be more true, but she came at the perfect time. Just when I was hitting the bottom, she was here to pick me up.

Last week was hard, really hard. I was already desperately counting the days until her arrival, but by Friday I was about to burst out of my skin with impatience.

I know that not everyone feels this way about their mother, and maybe society tells us as adults we shouldn't need our moms as much, but I'm not going to feel bad or guilty that I do.

Having my mom in our house feels as if a vibe of peace, safety and calm washes over it. We dial down, truly relax, rest and rejuvenate. We don't have to "do" anything. We are just here and go with the flow and it feels so good.

And this visit was the first in I can't remember how long, that my mom came to just be here -- not for an appointment, surgery or event. One on one time dedicated just to being together for the sake of needing each other. It was grand.

We napped, watched a few movies, she made cookies, we did some retail therapy, but most importantly I just soaked in the "mom" love. It's a special kind of love that I am so blessed to have in my life, unconditionally, no matter what, no matter when.

The weekend was perfect, although never long enough. But I'll see her again next weekend!

I adore the relationship I have with my mom, the mutual respect, need and confidence in us being there for each other is unique and awesome. We don't expect perfection from each other, or to always agree on everything, but just to be accepting of the souls we are. It's rare, but true.

I'm so very blessed to have the mom I have and that is one thing I will not ever take for granted. I'm thankful every day for her and what she has done for our family.

I love you mom, thanks for being here just in the nick of time...

Charlie Girl

2011-03-20T10:42:00.000-07:00

(In the car on our way back from Nor Cal, don't mind the mess on the seat.)

Who's been wondering how this cute face is doing? Maybe nobody, but I thought it was time for a little update on our Charlie girl.

She has grown so much, and is now 52.5 lbs. I honestly can't believe I have that big of a dog. If you don't know me, I'm not that much of a dog person;)

As of last week she was officially released from the dog orthopedist after five months of recovery. It was a little hairy there for a while, but the limp is finally gone and aside from a cool scar, her knee is back in working order.

My one wish for Christmas, was dog training lessons. That was two-fold, Charlie has a LOT of anxiety and energy AND I needed to be trained as well. So I did my famous research and found a great dog trainer, who we LOVE.

We've had six sessions, of eight, so far and things are definitely improving. We have some tools on keeping her focused and some discipline techniques that are really helping. We've learned that she's a working breed so she needs "tasks" to do, also she has anxiety especially around new men, so we have been practicing with friends and guests some techniques to keep her calm.

We still have a lot of work to do, but I'm SO glad we are doing this. It sounds a little hoidy, towdy to say we have a Dog Trainer, but we really needed it!

As crazy as she can be, we love this little face so much. She's so cute, sweet and pretty entertaining. We are so glad to have in our little family (even if the cats could do without her!)

Luck

2011-03-17T10:48:00.001-07:00

Happy St. Patty's Day. A day supposedly full of luck and of my favorite color...GREEN!

As you may have noticed I changed my blog template this week, I figured I can use all the luck I can get, maybe it will help. So enjoy the green and goldness of it all, until I decide to switch up.

Anyway, while checking my very favorite invisible illness support website, But You Don't Look Sick, I came across THIS article.

I hope you take the time to read the "Luck of the Spoonies," because it made me realize just how lucky I am and hope for what things will be like when I someday get the chance to be a mom.

Over the last four years I have had the opportunity to teach and learn from my family and closest friends how to live with a chronic, invisible illness. I'm lucky that those around me remind me in some subtle, some not-so-subtle ways to take it easy or be kind to my fragile body.

Even all the cute little people that I love so much, know about Al's boo boo/owie and ask or mention it often with concern and curiousity. And I believe we are teaching them compassion without even knowing it.

I know that when I'm a mom, I won't be able to have all the energy most other mothers do and I will probably need a lot of help and to adjust my ideas of what I "should" be doing -- and that will be hard. But I'm confident that good will come out of those struggles, and hopefully I can raise sensitive, kind souls like this woman is.

Hope you are all wearing green and pinching those who aren't;) May the luck of the Irish be with ya (said with a really bad Irish accent!)

** I first introduced you to But You Don't Look Sick HERE. Reading this never gets old.**

Here's the Thing

2011-03-15T15:38:00.000-07:00

I know a number of you have been wondering where I've been lately, anxiously awaiting updates and I'm so thankful for all the support. It humbles me how many of you really are invested in our journey.

The thing is, I've been wanting to post, I have a lot I need to say for myself. But then I have feelings of guilt because the things I need to say aren't pretty. And I don't want people to worry, or think I'm just being so negative and wonder where that cheery Al with the fighting spirit went.

I know that's all so silly, this is my space and being sad, frustrated, etc doesn't mean I'm not still an optomistic person.

But to be quite honest, my spirit has been pretty broken lately and that is very, very hard for me to get on board with on so many fronts.

So I said to my self, "Self, this here blog is for you. And the people that love you want to know the good the bad and the ugly. And if they don't, well then they don't have to read it. You owe it to yourself and your peeps to be completely honest, especially to those suffering chronic illness too so they know they aren't alone."

And here I am, about to lay it out on the line. As usual, I'm not asking for pity just understanding. There really is nothing anyone can do, no more answers right now that I or the hubs can give you, it is what is.

Here it is. I'm SAD, FRUSTRATED, PISSED, LONELY and TIRED of pretty much all the crappy situations. I've cried almost every day for the last month (but I will say the last few days have been better, until today.)

I am NOT accepting very easily the Fibromyalgia diagnosis. I thought for sure once we had some more concrete info, I would feel better mentally. But I don't. Realizing that chronic, wide-spread pain are words that will always be a part of my vocab are hitting me a lot harder than I thought. And I know there are things I can try to help lessen my symptoms, and of course I'm going to do that, but it's always going to be on my scale on some level.

I am now having some "lady part" issues. I have known I had fibroids in my uterus, but they weren't causing a problem until recently. So I went to a new GYN (referred by the fabulous Dr. A) last week. I loved her, but it brought up a lot of sad and hard feelings. I have to have an ultrasound on March 22 to make sure that it is actually fibroids and not something else, and then I will be making some tough decisions on how to treat them. Here are my issues with this:

Another ultrasound, this time of my baby-less uterus, not exciting.
I may have to decide to have my uterus cauterized to prevent further issues, which will officially close the door on me carrying our own baby (obviously this was already out, but you know it would be official.)
We will be meeting with a fertility specialist to talk about extracting eggs just in case we can ever pursue surrogacy.
Really, lady part issues to add insult to injury, was that really necessary?

It's just a lot to process, you see. And I have no more information, so when I know something on this front I will share.

Which leads me to the next situation that is bringing me down lately. Adoption. I'm feeling stressed and frustrated by the process. It is what it is, but right now it feels like it's not going to happen (ok, that's dramatic, but it seems like it's not happening any time soon.)

We want it so bad, so so bad! And the lack of control, coupled with all the other feelings we have about my health, etc is just getting to both me and the hubs lately.

And here's where I just get really bratty and stomp my feet at the following situations:

Having to clean the toilet multiple times a day and take the energy and time to empty my pouch. Don't get me wrong, I love my KP, but sometimes I just want to be "normal" again.
I miss my mommmy! Thankfully she's coming to visit next weekend. Yeah, so I still need my mom, what's it to ya?!
I'm tired of hurting all over all the time! My joints are on fire, my neck is sore, my hands get crampy, my abdomen/gas is out of control, nausea, etc. UGH! I need to schedule regular massages, check out some Thai Chi, etc but I don't feel like putting the energy into it. (OK I know that's dumb because it's to help me, but remember I said I was being a brat.)
I hate answering the question, "So how are you feeling?" with the answer, "I'm hanging in there." Or the "But you look so good," statement with a strained smile and a, "Thanks." I want to be able to say, "I'm having a great day" or I want to cry and say, "If you only could see the inside, good thing I have the outside looking good."

So there you have it, hope I didn't scare you. We don't need to dissect the lady part issues, they are what they are, and the hubs certainly doesn't want to discuss with anyone in detail;)

Remember these are just my feelings (and some of the hubs too) and all we ask is for you to be understanding. We know you'll continue to love us through it as you have for the last four years. Wow, four years already! Yikes.

Know that I am working on these things, I'm just not bouncing back as quickly as I'm used to. But in my true fashion, I pop out with my positive attitude on these things one or two times a day.

I'm going to try and be better at posting, even when it might not be funny or inspirational. Deal?

And if you are someone that is suffering chronic illness everyday, know that it's ok to have these feelings and to share them. I'm still working on it, but I know it's good to do.

A Letter

2011-03-08T09:56:00.000-08:00

Dear Grapes,

Oh how I love you, but man you are NO good for me. And even though I know this, when I see you, I can NOT resist you.

I tell myself that if I eat just 5 that is showing great restraint and shouldn't cause me too many problems.

I do it to myself EVERY time, and it never ends well. You and KP do not mesh well.

Will I give you up, probably not. Don't be offended, I stopped buying you a long time ago, but if we happen to meet in a fruit salad, I won't shy away dear friend...

I'll just pay the price for the five of you I eat for the following three days. What you do for love?!

Fondly,

You Makin Me Crazy!

2011-03-01T16:28:00.000-08:00

And by you, I mean my new med, Gabapentin. So I've cut that relationship off. Done, Finito, Fin, etc, etc.

One of this meds side affects is that it can alter your mood, and not for the better. And well, we all know that I'm crazy enough on my own.

So after two weeks with no improvement in my symptoms and some very unsettling moods, i've broken up with Gabapentin.

That's the update for now. "Normal" Al is slowly coming back. Thank goodness for the hubs that CRA-ZAY Al is on her way out;)

Aspiration

2011-02-25T11:24:00.000-08:00

"I accept the Universe."

-- Margaret Fuller, 1800's American Civil Rights Activist

(via the Keep Calm and Carry On desk/vanity calendar)

I'm working on it Margaret.

Nice to See You Again Rheumy!

2011-02-23T10:19:00.000-08:00

(This picture has nothing to do with this post, I just like it.)

Last Tuesday, I finally had my follow up appointment with my fabulous Rheumatologist. If you remember from this post, my first appointment was TWO months ago.

And as before, he was amazing. Although I had to wait an hour past my appt time to see him, he then spent an hour with me. This still just blows me away, he is truly a special doctor who treats his patient with such respect.

First Dr. W, pulled up his notes from my last appointment and went through them with me. I couldn't believe how thorough they were. And at the end it said, "Thank you for referring such a pleasant and delightful young woman to me." That made me smile.

Anyway, then we got to the results of my blood work, MRI and X-rays for the other things he was looking for. Anyone want to take a guess what they yielded, anyone, anyone?

Gold stars to those of you who said they showed a BIG FAT NOTHING! As usual, everything looked "favorable." Good news right?

Well of course that's good news in the sense that I don't want something horrible to be wrong. However, also super frustrating because obviously things still aren't the way they are supposed to be and we were back at square one.

I am not too proud to tell you that I cried a little in the office. But Dr. W was so compassionate and understanding.

And then he talked to me like an equal of his, not as some egotistical doctor telling me how things were going to be and sending me on my way.

His newest line of approach is that I have Fibromyalgia AND/OR IBD related Arthritis.

He went through the treatment options for both and asked me what I wanted to do. And to spare you all the things we talked about. I decided that I wanted to try treating the Fibromyalgia first, since the medications for this aren't as harsh as the ones for the arthritis.

Click HERE and HERE for information on what Fibromyalgia is. It really does sound very possible that this is one of my issues. I have all the symptoms and have had most of the triggers for Fibro. So I've started taking Gabapentin. The hope being that it will help dull my over active nerves and stop them from firing so many pain signals. I've been on it for a week now, just increased my dose yesterday and no improvements yet. But I have to increase again in five days so hopefully something will help.

For some reason, I can't explain, rationalize or figure out, I've had a very hard time with this information over the last week. Hence the lack of blogging. Maybe it's because we still don't know for sure and we are just throwing darts at things. Perhaps it's that I had to make a choice between medications and I didn't really want to take any of them. Or maybe it's the fact that this is very real, that these are things that I really do have to accept living with for the rest of my life -- widespread, chronic pain (whether it be one or both of the above diagnosis) in some form.

Now do I know that these things are totally manageable? Of course I do, I've been living this way for years and "managing." Do I realize that this is at least something to go with and that it could be so much worse? If you've read this blog you know that I'm not a pity partier and never take for granted that there are people suffering so much more.

So what's my issue? That I can't answer. I'm working through it, I'll hope the meds work. And I'll try to do some other natural things to help my situation (unfortunately I can't do yoga, which is one of the suggestions because I can't bend over otherwise the nausea will be a bigger issue.) And I'll go back in 6 weeks for a follow up with my favorite Rheumy. And we'll go from there.

In the meantime, I'm working on scheduling an appt with a new GI and I have an appt with a "Lady" doctor for next week. Because we still need to figure out what my nausea and other lower abdominal discomfort is due too, that's still the biggest of the many mysteries.

Scenes From A Wedding

2011-02-15T16:28:00.000-08:00

We went to a wedding last week where they had a photo booth for all the guests to take wacky, fun pics. It was so great. Here are a few of my faves. Enjoy!

(I think the hubs sees something the rest of us don't.)

(So scary!)

(Ah, so cute.)

(My personal favorite. The Zoolander Blue Steel.)

Simple and Sweet

2011-02-15T10:05:00.000-08:00

(This is the pizza we ordered Friday night. Yes it's HEART shaped!)

We are not big on the hoopla of Valentines day in the CC household, we like a more 365 showing of love in small and sometimes large ways. But we do like the spirit, a time to celebrate all the loving relationships in our lives.

But true to our style, we kept in simple and sweet. Friday night we ordered the "Valentine's Special" from P.apa J.ohns -- a heart shaped pizza and cinapie and played W.ords with F.riends (we are seriously addicted. dorky: Yes, crazy: Maybe) on our iPhones.

Last night the hubs made me dinner, all his idea. Grilled cheese sandwiches on fancy bread with fancy cheese and tomato soup. I literally teared up when I came out of the bathroom and he had an appetizer ready too -- salami, cheese and crackers. So simple, but so very thoughtful and sweet. I HEART that man.

We chatted at the table, we played our game on the phones and we just enjoyed each other.

I hope you all got and gave love to the people and pets that make your world go round and that you continue to do the same everyday. You never know what life will bring...

Today's Quote

2011-02-07T12:42:00.000-08:00

"Our greatest glory is not in never falling, but in rising ever time we fall."

-- Confucius, Chinese Philosopher

**Courtesy of the Keep Calm and Carry On desk (vanity) calendar**

Over the Rainbow

2011-02-05T08:49:00.001-08:00

(November 2003)

Here we are and another year has passed. Today would have been my dad's 57th birthday! You can read what I wrote on his last two special days here, 55 and here, 56.

As always, I want to celebrate today and remember that he lived a great life and I'm thankful for the 27 years I had with him here.

But instead of going on and on, as I like to do (one of my dad's favorite past times to,) I'm just going to hope you click over to this and enjoy:

"Somewhere Over the Rainbow," by The IZ (Isreal Kamakawiwo'Ol)

My dad LOVED this song and he also loved Hawaiian music. After we heard The IZ's version on the TV show "ER" on the episode where Dr. Mark Greene (Anthony Edwards) peacefully passed away, it became somewhat of a family anthem.

A song of hope and peace, that would always soothe us. The hubs and I played it as the last dance at our wedding and we of course played it at my dad's service.

Every time I hear it, I tear up because I miss him SO much, but it also makes me smile, thinking that at that exact moment he's letting me know he's right here with me.

Dad, Happy Birthday. I know someday we'll meet again, Somewhere Over the Rainbow. I love you!

Errands

2011-02-02T18:40:00.000-08:00

As it has many times over these last years, today I realized again that some of my errands, that seem routine to me, are in fact NOT routine to most my age. And with this realization I laughed again, because one of today's errands is just funny.

I had a yogurt date planned with a sweet friend. So I planned two other errands around the same area to minimize my effort and energy but maximize my to-do list. See, Type-A still lives on in my adjusted "normal."

Here were today's To-dos:

Drop stool samples off at the lab
Meet S and baby T for yogurt
Pick up dress for a wedding this weekend at the alterations place

Hmm, now which of these is not like the others? I had been putting off the poop samples, not because I was scared or didn't know what to expect, but because we have had a lot going on. But as I set to "collecting" this morning and then packed them up in their little bag and put them on my car seat, I realized that I went into auto-pilot mode on this task. That's the sign of a tried and true IBDer, right?

And I honestly got a really good laugh, not a sarcastic one. Which made me smile.

Then I scored a good stroke of luck at the lab. When I got there at 1:15 p.m., I saw it was still closed for lunch and I didn't know what to do, see second errand above, these clearly had to be dropped off because they couldn't sit in my car!

But there was a lady in there, who did an awesome job of not looking at me when I tried to open the door and then stood there for a minute. So I went bold and knocked, she couldn't ignore me now. She begrudgingly came to the door when I said I just had a drop off. Skeptically she asked if they were all labeled, including paper work and to her surprise I said "Yes!" So she took them even though she was on lunch. Hallelujah!

Ahh it's the little things in this life!

Sunshine Through the Rain

2011-01-26T09:11:00.000-08:00

The rage and frustration of yesterday brought on a very intense and stubborn migraine. It's a doozy, sleep was fleeting and the pain SO bad. I haven't had one this bad in ages and it seems to be hanging around for a while, although not as throbbing as during the night. (Yes I know sitting on the computer probably isn't the best thing, but of course now I can't fall asleep again. So here I am, in the dark and quiet with just the glow of the screen.)

I've had this post swimming in my head for a week now, and the perfect title came to me yesterday. Funny how that happens. And although I'm having a rough time on a couple of fronts and still frustrated, it's not as bad as yesterday, the acceptance is moving in, begrudgingly.

I did want to share the things that have made me smile lately, even when I've felt oh so lonely and mad and scared. My sunshine through the rain:

Skyping with my bro, sis-in-law and Super G last night. I got to see our sweet niece walking all over their house at just 10.5 months old! She also blew kisses and waved to me through the computer. It was awesome. She is seriously so darn cute. I can't believe she'll be one in 5 weeks.
My sweet hubby getting me a cool wash cloth for my head and then holding my head because the pressure helps at 5 a.m.
My little buddy J telling his daddy out of the blue, after I left his house one day that, "Al is my best bud!"
Reusable grocery bags. I have the cutest bags thanks to a lovely friend. Plus they hold a lot of stuff and make it so much easier for me to get the groceries in the house by myself.
Our Cutie K running up to the hubs the other day and saying, "Appy Birday Uck!" and giving him a big fat hug. Plus watching her gently hold baby M's hand and kissing it softly made me tear up. She's a doll!
Getting a pedicure. I know it's a luxury and not a need-to-have, but I love it and it's so relaxing, plus rejuvinating.
Having A ask her mommy if, "Aunt Al can maybe come spend the night for her birthday."
Knowing my mom is always there to listen when I'm down and that I'm there for her to do the same.
Watching little Miss V, who turned one last week, bounce around on her knees when she's SO excited. It's the cutest/funniest thing.
Charlie girl stepping on the stool next to my bedside and putting her head down and looking at me with her sweet face until I pet her.
Having my sweet friend check on me yesterday after reading my blog and being just as mad as I am about it all.
Cuddling with J's little sister M.
Ice cream sundaes!

Things like this really do help me through and I'm thankful that I can still see them.

"Say my name, sun shines through the rain

My whole life, so lonely

Then you come and ease the pain

I don't want to lose this feeling..."

-- Eternal Flame by Human Nature

(yes I love cheesy '80s music)

Bite The Dog

2011-01-25T15:52:00.000-08:00

My friend A, told me a story about her dad as a child. He would get so frustrated that he would bite his little plastic or wooden dog toy (you know that one you had with the little string that you used to pull it around.)

Well since hearing this story, when I'm super frustrated or feel that little kid type rage that makes you want to just throw a fit and stomp your feet, I say, "I need to bite the dog right now."

Well it's a "Bite the dog" type of day. Nothing that can't be overcome, but just more continual figurative slaps in the face of my situation and the ramifications it has for me and the hubs.

No need to worry. I'm just pissed at some injustices, the details aren't important, it's that it seems we can't catch a freaking break to save our lives. Sometimes it just feels like no matter if we do everything right and everything within our control to do the right thing, even with a crappy deck of cards, it just doesn't matter.

Nothing has changed with my health. It's just some IRS crap we have to do. Thankfully we know a tax expert extraordinaire so we'll just "Bite the dog," make the punch not as painful and move forward. But not before throwing a major fit!

So Much Wiser

2011-01-24T11:33:00.000-08:00

Today is the Hubby Man's 32 birthday. Can you believe it's already been two years since this post?!

You all know how I gush over him. If you know him, you should gush over him today too;)

I love you babe. I hope it's great day, where the focus is just on you for once. Happy Birthday you old man.

Fresh

2011-01-18T15:13:00.001-08:00

(Please excuse the bad self-portrait.)

Today I got a fresh trim on my long, flowing locks of hair and picked up my new reading/night-driving glasses.

I love fresh starts, whether it's a good hair cut every 7 weeks or new frames that hold the promise that I'll actually wear them when I need to (no guarantees here, I always pick glasses I like, but somehow the novelty wears off.) But I have hope it will be different this time;)

Love these mentally freeing days.

Also, happy 1st birthday to little Miss V and happy 30th birthday to my dear, puppet pal Mands. Two very special girls, celebrating milestone bdays today. Mwah!

Clarity

2011-01-15T09:35:00.000-08:00

I am a very loved girl. For Christmas I received a very thoughtful and oh-so-me gift, out of the blue and it was obvious that these people get me. What was it you ask? Well it was the "Keep Calm and Carry On" desk calendar (or in my case vanity calendar.) Each day there's a different quote -- sometimes funny, sometimes thought provoking and sometimes just so perfectly stated.

I HEART it!

Today's quote just had to be shared, especially in light of my last post:

"We must accept finite disappointment, but never lose infinite hope."

-- Martin Luther King, Jr.

So true and I think sums up our journey so well. Thanks J and H for the gift, it's perfect and I love tearing the page off each day.

40 Weeks

2011-01-11T16:45:00.000-08:00

For the "normal" expectant parents, 40 weeks is the ultimate finish line. In many cases, when a woman is pregnant and having a smooth pregnancy the goal is getting as close to 40 weeks as possible and at the end of that finite time, she will deliver their much anticipated bundle of joy and go home to begin a big new adventure.

Not so here in this household. Today it has been 40 weeks since we officially became waiting adoptive parents. 10 whole months! And not a single little nibble or contraction I guess would be a better analogy. Nope, no basic assumption that after a long wait we would ultimately get what we desperately desire. No big swollen belly waddling around, no baby room to look in on excitedly, no oh my gosh can you believe we've made it here, no anxiously awaiting a phone call, the phone call that it's time to meet our baby.

Instead we sit here wondering why hasn't anyone picked us, is there something not appealing about our letter or worse us?! What should we do next? Should we start looking at working with an agency AND our lawyer? Where do we even begin? How do we know if an agency is a good one, do they get a lot of prospective birthmothers? How much is that going to cost? Will this ever happen? How long will we wait? When it ever happens, how will I be able to take care of a baby 24/7 living in this body? Will we ever be anything but the fun and cool aunt and uncle/friend (don't get me wrong here, we LOVE these roles SO much, but we want to be Mom and Dad too)? The questions are endless and hard.

I HATE having absolutely NO control!

Now for the facts that we are well aware of and on most days believe:

There is no typical wait for adoption and it hasn't even been a year. Just another fact that reminds us that this isn't like what everybody else gets to experience.
And when it's our time, our experience will be ours and it won't matter what everyone else has gone through. But until then, that's very little comfort.
We are young. Yes we know that in the grand scheme we are young. But would that be comforting to you when you were trying desperately to be patient for one of your heart's biggest desires?
Our little soul will find it's way to us when the time is right. We believe this yes, but in the dark moments the "right" time seems like it will never get here.

Ok so this is all just a bit of rambling and really I just needed to type it and get it out of my head. It's that whole time thing, swirling around 40 weeks, almost a year and it just reminds me that like the health stuff, we just have no official answers or paths and this may just be the way it is. And that sucks. And wait did I mention I HATE that no control things.

It's hard staying positive all the time. Let's be honest that's really not possible. And although we don't think this way every minute of every day, or really even every day or every week, it's hard not to go there sometimes.

We do a darn good job of "Keeping Calm and Carrying On." Enjoying our life, because even despite it's MAJOR trials, it's a darn good life. But I also believe, it's good to let people know, and maybe mostly ourselves, that it's ok to be sad, scared, mad, overwhelmed, envious, annoyed and lonely.

We still believe adoption is the way to our child, but as we knew it would be, it's hard and tiring and we still wish things were different. But this is our path, windy as it is and hopefully our proverbial pot of gold is at the end.

Here's to not having to wait another 40 weeks. We have some research to do...

Hall Pass and Ear Muffs and Bones

2011-01-08T11:34:00.000-08:00

I want a hall pass! For what you ask? I want to be excused from colds and flus.

I know it sucks for anyone to be sick, especially with this nasty virus that seems to be swarming. You know the one that's causing people to be sick for 3-4 weeks with the full blown flu -- aches, sore throat, cough, stomach issues, fever, head pressure, etc. I know you know at least five people, probably including yourself who have had this in the last month. And boo on that, because feeling like you've been thrown to the ground and repeatedly punched is never a good thing.

What you ask makes me so special that I should get a hall pass from all that, I mean if others have to go through then I better suck it up, right? Well nothing makes me special, but I think all us chronic sickies just shouldn't have to deal with that too. I mean come on, really, we need to add to our daily ickies the blues of the flu!

Ok, I admit it sounds like I'm stamping my foot and screaming, "This isn't fair!" Because yes, that's exactly what I'm doing. Maybe that's because I have the freakin' flu/cold that I believe is transferring into a sinus infection. Blah. And I just don't want to deal with it. So I say, "Where is my Hall Pass?!"

I know that's ridiculously impossible, especially since this little immune system likes to grab a new virus about every two months. But I want some cheese with my whine! And to top it off, hubs has the same thing. Double Boo.

Anyway, on to some other random things. I had my MRI of my right hip and shoulder yesterday. Didn't get any results of course, those will come at my appt on Feb 15. But it was a pleasant experience. I, thankfully, am not claustrophobic so being pushed into a tiny tube doesn't bother me. And this time, instead of the standard ear plugs, which aren't very comfortable, they gave me ear muffs (like the ones that you see the guys on the airport runway wearing.) They were so much more comfortable. I was in the tube for a little over an hour with one 5 minute break. And I'm happy to say I fell asleep! Is that weird?

One last thing. Right before the holidays I got the written results of the bone density scan I had in November. The first scan I had was in October 2007, that noted I had osteopenia, most likely due to heavy prednisone use. It was time for another look, especially with all the joint pain I've been having. And although I haven't quite jumped into the osteoporosis category yet, the density of my bones has decreased since 2007, enough so to increase my risk of fracture.

So although I'm not quite ready to join Sally Field with her once monthly pill to help her build stronger bones and combat her osteoporosis, you better not push me, otherwise I'll be yelling, "Help I've fallen and I can't get up."

Enough randomness for one day, off to hack up my lung.

Still Hanging Around

2011-01-05T09:02:00.000-08:00

If you are wondering about my dear enemy, nausea, he's still hanging on tight and actually piping up a little more these last few days.

Nobody, not the GI, not the surgeon, not the ENT, not the Rheumy, not Awesome PCP, can figure out why. It's not a good feeling. Maybe something will lead to the answer. I know there are ways to try and mask this feeling, but honestly I'd like to figure out what's causing it and go from there. Is that possible, who knows?

An IBD Rebel

2011-01-04T09:02:00.000-08:00

(google images)

Yes that's me. For the first time EVER (and I mean in 12 years of living out of my parent's house,) I ran the reserve toilet paper rolls in The Chronicles of Crap household down to ONE!

Yes you read that right and don't think I didn't have heart palpitations over it. But with the holidays and other craziness (I was out of town for close to two weeks) it just got over looked. YIKES!

I usually have no less than 6 rolls, but typically more. I mean when you go through about 1 a day, you don't mess around, otherwise there would be a much more serious mess to clean up if you know what I mean;)

Of course my rebellion was short lived, because I was seriously concerned about this once I realized the situation and the hubs and I headed straight to T.arget! What can I say, I'm not a risk taker.

I will admit, living on the edge is kind of exhilarating, even when it's unintentional, but only for a little bit.

Have you been rebellious lately?

Hey Rheumy!

2011-01-03T11:50:00.000-08:00

(dorky picture, but it makes you laugh I'm sure of it, so it's worth it!)

Remember this post where I told you about my deformed nose and then said that my next date with another new specialist, the rheumatologist, was going to be on December 14? Well I had that appointment and it was a great first meeting.

I had heard from the sleep specialist that Dr. W was THE rheumatologist to see, but to be prepared to wait because he takes a lot of time with each patient. Most people might think, "Oh that's great (sarcasm.)" but I thought, "Oh that's great!!!" (excited) I will wait for days if the doctor is actually taking his time with each patient to get to the root of the issues.

But luckily for me, I had the first appt of the day so no waiting for me, but true to what I'd heard, Dr. W did take his time. He spent 2 hours with me!!! We went head to toe, physically and historically and he really listened to me. When I said my blood work hardly ever shows when things are obviously wrong, he didn't balk, he agreed that does happen. When I threw in all the random things, because at this point it may be something I think doesn't mean anything that is the key to it all, he asked more questions about those things. I felt so comfortable and confident with him

At the end of our full work up Dr. W said, "Well you are a difficult case to be sure and you've been through so much. I admire you for your spirit and attitude. We'll work to figure this out."

And the thing is, he meant it and that felt great. Of course I didn't leave the appt with any concrete answers just a list of what he thought it could be, a lab slip, an order for an Xray and an MRI, and a follow up appt to go over the results of the former.

So here's the run down of what he said:

I do have hypermobility syndrome. Basically my joints are loose and move around a lot, which can cause some pain, etc. He said I was born this way and cracked me up when he showed my how a "normal" hand is supposed to bend as opposed to mine, where I can bend my fingers to a 90degree angle.

As for all my other symptoms (joint pain, numbness, cracked lips, dry eyes/mouth, etc.) Here's what he's investigating first:

Sjogren's Syndrome. I would have secondary Sjogren's if this is what I have as I already have another auto immune issues. Check out the link for details.
Anykylosing Spondylitis/Enteropathic Arthritis . IBD related arthritis, which was the suspicion of the peeps at CC and subsequently my Awesome PCP.
Avascular Necrosis. This would have been caused from the prolonged high dose prednisone I was on for all of 2007.

All sound possible and of course all are manageable, but none of these will ever go away. But that's fine as long as I know how to manage it. I'm not getting my hopes up that the blood work I did will yield any answers, but we shall see. At least Dr. W knows of my elusive blood work.

He wanted to see me back in one month, which would have been Jan 14ish. Unfortunately because of the time he takes with each patient, he doesn't double book so the soonest appt I could get was February 15! UGH. But I'm on the cancellation list and maybe, just maybe I'll get in sooner. I hate the waiting, waiting and more waiting.

So another big "treasure hunt" so to speak is on for my little body. I'm confident Dr. W won't give up on me easily, so even if the first round of tests prove nothing he'll dig a little deeper. That's all I can ask for.

And on the nose front, I'm just debating on when to schedule my surgery. To be honest, I'm not wanting to deal, but with a cold and sinus infection weaseling their way in right now, I know I need to figure this out soon.

More to come, it's always a health adventure around here. But I'm loving my new Rheumy, that's for sure!

It's A New Day, It's A New Year

2011-01-02T11:02:00.000-08:00

We have some catching up to do, the last two weeks of December posed some unexpected hurdles for our family, but first I want to say, "Welcome 2011!"

As I said last year, we won't be giving this year a tagline. If we've learned anything these last four years (yes this weekend marks four years since the downward spiral of my little ole' body,) it's that, at least for us, we just have to take each day as it comes.

Of course we hoped for a much different outcome to 2010: final answers to my squirrely little body and the news that a small person would be joining our humble abode. But although those big dreams of ours didn't come true, 2010 still gave us many wonderful gifts.

Our niece Super G was born in March (Plus we got little V in January and baby M in November.)
Our sweet Charlie girl came to live with us in May.
We Took Steps for CCFA and were surrounded by our dearest friends in June.
We celebrated five wonderful years of marriage in August.
My mom and I went on a big eye-opening adventure to the Cleveland Clinic in October.
The Giants won the World Series in November (and I turned Thirty Fun!)
The hubs ran the CCFA Rock and Roll Half Marathon in Vegas in December.
We got to spend time with Super G on her first Christmas!

So here's what I have to say to 2011, "I hope that I can see all the small gifts along the way, while I hold on to the faith that we'll get the big ones too."

Hope you all had a wonderful and healthy holiday season. Here's to finding the smiles in each day this year.

A Great Man

2010-12-29T11:27:00.000-08:00

(Dr. Dana Launer. He often wore buttons of his kids on his lab coat!)

In life there are people who impact your life, whether you know them well or not, who without them your story would not be the same. As my dedicated readers know, Super Surgeon Dude is one of those people in my life. The man who gave me back so much freedom by giving me my K-pouch.

You can read about our first meeting here. From the very first meeting I knew he was a special man, not just in surgical skill (he was one of the best) but in bedside manner too. But most importantly our personalities just clicked. He was funny, quick witted, sarcastic but so kind and compassionate and passionate. I always felt comfortable with him, even through the whole infection/abscess ordeal. I've never once regretted my decision to trek on down to SD to have him give me back my freedom.

Unfortunately throughout his life, Super Surgeon Dude battled his own serious health issues. Most recently stage 4 stomach cancer, even having his stomach removed and a new "stomach" created from part of his small intestine (ironic isn't it) at the end of October.

Knowing of his constant struggles makes me realize why he always seemed to truly "get" what his patient's were going through, mentally and physically. It's because he had lived it to.

Sadly, Super Surgeon Dude lost his battle last week with cancer at the very young age of 62. The world has not only lost an amazing surgeon, dedicated to giving his patients the best quality of life and investing himself in our well being, but from the very little I knew him a wonderful man.

I'm so saddened by his passing. The hubs and I know he was the first person in a long string of disappointments that believed me and believed he could help me in the best way for me. And he was right.

To Dr. L's family and friends, our thoughts are with you as you deal with the loss of this great soul. And to Dr. L, now our k-pouch angel as my k-pouch mama, J has dubbed him, thank you for making each of us feel like you cared for us as you would your own family. I owe you so much!

If you'd like to read Super Surgeon Dude's obituary, click here. Want to see his funny side, click here (yes he's the singer!)

Another amazing man, taken way to soon.

ProSpectators

2010-12-15T09:55:00.001-08:00

While The Hubs and J were busy running their booties off, C, K and I were busy being the best Pro Spectators there could be. We worked that race route;)

K was not so happy to be getting her picture taken at 5:45 a.m. but it's still a good group shot. We were all up and at em' to support these two before they took off!

The three of us left Mandalay Bay and took a cab over to the three mile mark, The Wynn. While we waited to see our runners go by we were approached/accosted by a street pirate. Yes, C is wearing his hat and K has his dirty parrot on her shoulder. The pirate also posed us for this pic. So while I was scared to death of the dang bird (I am beside myself with fear around birds), C was scared to death that the pirate was going to run off with his nice camera and poor K just froze like this until that dang bird was gone. Ahh the things we do waiting for the ones we love!

Ok this is out of order, but look at the cute N family supporting mama after she crossed the finish line!

K and me waiving our signs along the strip.

K helps mama stretch "it" out! Such a good coach;)

Me and my babe after the race. I seriously was/am so in awe of him. I just wanted to shout, "That's my guy he just ran 13.1 miles!"

I still can't truly express how proud I am of her for completing this. I know it was hard, but she crossed that line looking good and at ease and with the biggest smile. It was the best scene and one that's etched in my mind forever. You go girl!

C, K and I made an awesome Team Challenge cheering section. We moved around the route with ease. We worked together to make seamless transitions and had a lot of fun along the way. Maybe next year we'll get medals for being professional observers;)

They ROCKED Las Vegas!

2010-12-11T10:16:00.000-08:00

This past Sunday was the Las Vegas Rock and Roll 1/2 Marathon for CCFA. We had a great trip, full of lots of love, inspiration, entertainment and fun. But the most exciting thing, and of course the reason for the whole trip, was watching these two rock those 13.1 miles with grace and style for a wonderful cause.

Enjoy some pics of the runners!

Ahh, victory! Don't they look awesome for just running a 1/2 marathon.

Before the big race, bright and early at 5:45 a.m. (Wun = walking and running)

Just about to cross the finish line, she wan the whole thing in an impressive 2hr56mins! Well below her goal time:)

Looking cute and pumped just steps from the finish line. The hubs ran the entire way in 2hr17mins!!! Can you believe it!? I can:)

I could not be more proud or humbled by these two very special people. They took on this challenge to help make the lives of all of us suffering from IBD better. They each raised $5k+ towards education, research, support programs and awareness for Crohn's and Ulcerative Colitis (and they both became chapter VIPs by raising so much.) Plus they both accomplished personal goals of completing the actual run.

I've said it a million times before, but I am one of the most blessed people. I'm surrounded by such love and support and souls who want to do anything they can to lighten my load.

To the Hubs and J, thank you for all you did to get to Vegas, but more importantly what you do for me on a daily basis to carry me through my tough spots and cheer me on during my victories. Hugs and Love!

Oh Nose!

2010-12-03T08:23:00.001-08:00

So one of the new specialists Dr. GI Amazing from CC said I needed to see was an Otolaryngolist (Ear, Nose and Throat dr.) He of course was surprised I hadn't seen one with my chronic cough and sinus infections. I of course thought well no one ever suggested it so why would I have seen one.

So when I got home I talked to Awesome PCP and he referred me to an ENT. I saw him for the first time two weeks ago and loved him and his office. They are all state-of-the-art, even take a picture of you (awkward like a DMV pic) for your file and ask for your email address to send info to. I love that efficiency. Plus the dr was straight forward but so good at explaining everything to me and very interested in me understanding what he was saying. LOVE it!

On my first visit, Dr. ENT took one look up my left nostril and said, wow has anyone ever told you your nose bone is totally bent and deformed (yes those are the words he used!) I said, "um no, I guess nobodies ever spent a whole lot of time looking up there."

He wanted to use his nasal telescope to go through my right nostril, since the left wasn't an option because it's blocked due to the "deformity", and look down at my vocal chords. I said, "You are going to do that right now?!" He said, "Yes, it's really easy, I'll numb it first and then just go right ahead. You do need to sign some papers because they technically consider it a surgical procedure because a foreign object is going in your nose, but it's no big deal."

I laughed and said ok sure. I really just couldn't stop shaking my head, seriously my life is FUNNY!

He numbed it up and in he went. But he got about half way up the right and said that side was very tight as well and "this might hurt a bit, just let me know if it's too much." Too which I wanted to say, "pshhh this is nothing, but I just said ok."

And really it wasn't bad, a bit uncomfortable but that was it. He said my vocal chords were inflamed and they shouldn't be since I didn't have a cold or allergies. That's when he said we needed a CT of my sinuses to look for blockages and to come back in two weeks. Luckily they had a CT appt open that afternoon, so check, check that off the list.

I went back yesterday for my follow up appointment. And drum roll please...good news is, right now my sinuses aren't blocked, (again his words) bad news I have a big problem with my nose!

Basically the bone deep inside my nose is bent like an elbow (basically a 90degree angle) and is almost totally blocking the left side and making the right very tiny. This effects all of my breathing as it blocks my airways through my nose, and he said I probably rarely breath through my nose (that explains the excessive drooling at night, yuck!) He showed me exactly what he was talking about on the CT images and there it was clear as day and bent nose!

He said it's been like this for a very long time and my problems with sinuses, coughing, etc will get worse with time because it will get harder and harder for my sinuses to drain when I am sick, etc.

Can you guess the only way to fix this?.....You got it surgery. A septoplasty and turbine resection to be exact (he said it won't affect the outside appearance of my nose at all, it's not a rhinoplasty) and it's out-patient. Basically if you cut off my nose now it's back there that's the problem, that's why my nose doesn't look bent on the outside, weird!!!!

And if I don't get this fixed in the next 6 months to a year, things will get worse like I mentioned above. So I'd have to have the septoplasty and also a sinus surgery too.

So obviously this has to be done and yes I know that in the grand scheme of things and all I've been through this is no big deal and it will hopefully alleviate my coughing and maybe even some of my headaches, but with all that I'm still kind of ticked about it.

It's another surgery, I was hoping 2011 would be free of surgical procedures. It sucks. Again in terms of recovery and all that, it will be a peace of cake, but really that's not the point for me right now. I just don't want to do it. What else is "deformed" with me? Will it ever stop.

And yes, I'm so thankful that Dr. ENT was so easily able to see that. But then I guess that leads me to the point of why did I have to go across the country for someone to suggest this seemingly easy solution. But also, I don't have the best track record for issue free procedures. This is my face and I'm not saying I'm hot stuff or that I have the best nose, but I don't want anything to happen to my face, I like it the way it is!

So there you have it, sometime in the new year I'll be going in to have my "deformed" nose fixed. Ahh is sounds so glamorous. At least I can actually say I really do have a deviated septum, and quite a doozy of one at the sounds of it. Just call me A.shley S.impson:)

Oh yes and I also saw a sleep specialist, for two weeks I was not allowed to take naps and I made a sleep journal. I went back yesterday and the long and short of it is, my nose is probably causing my lack of quality sleep, my body obviously needs a lot of sleep because my energy reserves are so low and I can resume my naps. WOO HOO!!!!!

Next up, I see the Rheumotologist on Dec 14 and I'm actually really excited for this appointment. I'm hoping for some direction on my other autoimmune issues, especially all my arthritic type symptoms.

Oh Thankblog -- Thanksgiving Day!!!

2010-11-25T12:46:00.000-08:00

I hope you are all enjoying your holiday in whatever way you are spending it. That you are feeling love or giving love or hopefully both. We've had a great day so far and it's only noon time.

So here's what I'm thankful for this week:

The opportunity for the hubs and I to donate goods and time this morning, preparing meals for the homeless. It was a truly energizing and humbling experience. The organized chaos and the shear number of people out giving their time on this holiday was AMAZING. We hope to make it a tradition from here on out.
The fact that although we still don't have a baby of our own in our arms or even an idea of when that might happen, that we still talk about the future believing someday that will be our reality (this isn't easy all the time, but that's not a topic for today.) Until our time finally comes and our miracle is here, the hubs and I are soaking in all this time we have just the two of us, knowing that one day (hopefully soon) we'll be making plans for three.
Our loving families who are celebrating elsewhere today but are close in our hearts. We miss them so much, even though know we are all in the right places today. Happy 1st Thanksgiving to our adorable niece Super G -- we'll be there for Xmas.
The internet and this blog. May seem silly, but I have found so much support and peace-of-mind out here on the world wide webs and I'm thankful to live in the time we do.
The outpouring of support our friends and family and strangers have shown my sweet hubs as he prepares and fundraises for the CCFA half marathon next weekend. It's been such an empowering experience for him to have so many people behind him.
Going to see Harry Potter this evening at a new, fun theatre in the area.
For the many blessings I sometimes take for granted -- the resources to even go to the movie and do so many other non-neccisity things; a warm, snuggly house; the comfort of knowing we will have warm food to eat and a bed to sleep in; a giving, kind husband; medical technology and so much more.

Happy Thanksgiving to you all. In the midst of your food coma and hopefully at some point everyday, find at least one thing you have to be thankful for. I promise it will lift your spirits even just for a minute.

Lots of love from the Chronicles of Crap household.

This Guy...

2010-11-21T15:11:00.000-08:00

Ran 10.1 MILES this morning!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

It's the farthest he's ever run and I honestly could not be prouder of him right now. Plus he's so darn cute and pumped up by it, it's awesome.

Just two weeks from today he'll be running the CCFA 1/2 Marathon down the strip.

It will be hard for sure, I mean running, walking, skipping, whatever -- 13.1 miles is a long stinkin' way -- and crossing that finish line will be a major accomplishment.

Want to help him with his fundraising and give him a final push. Click HERE or on the picture of us in my right sidebar.

You are a rockstar hubby man.

VIVA LAS VEGAS!

Oh ThankBlog -- Week 3

2010-11-20T09:02:00.000-08:00

Just a few days late, but still worth the wait for me. This week I am giving thanks for:

A new picture with my brother and my mother. I loved being with them last weekend. Don't we clean up nice?
Fall, rainy weather. This weekend a storm is a brewing here and I love it. It's chilly and overcast and rainy and perfect for hot cocoa and cuddling and warm blankets.
Wonderful girl friends who lift me up, make me laugh, get me and let me be me, not just sick me. I'm so so lucky to be surrounded with so much love from my girls.
Our Charlie girl finally returning to her normal self. She's still limping a bit, but she's got her spunk back, she's out of the corral and hopefully in a two weeks she'll be completely released from the confines of Operation Charlie's Knee program.
New doctors, new alternative healing opportunities and refreshed avenues to getting me well (more on this next week.)
T.arget. Oh how I HEART that store and it's ability to provide me with what I'm looking for and calm me as I walk the aisle. Weird I know, but it can't be denied.
Lunch with an old friend today. I'm so excited:)
Examples of true, real love in my life. Especially that of my parents. Today would have been their 34th wedding anniversary. I've said it last year, here, that their love was not always easy but it was lasting because they worked VERY hard for it. It's the best example I could have ever had on what it is really important in life. I'm beyond grateful.

Have you stopped to give thanks for the little and big things in your life this week?

Oh ThankBlog -- Week 2

2010-11-11T09:02:00.000-08:00

I'm back with week 2 of oh ThankBlog on Thursday. Here's what I'm giving top thanks to this week.

All the birthday love I received on Monday. I'm honestly so blessed to have had so many people take time out of their day to remember me on my special day.
That the stomach flu is gone. I'm slowly making my way back to my normal state of nausea, and the poop is almost back to normal (TMI, sorry you shouldn't read this blog then.)
That little M joined the world safely on Sunday. Congrats to her mommy and daddy, M and M (Yes that's 3Ms now!)
Conversations with my little buddy J. His new favorite line, "Al, What -- A -- Day." (said with a sigh!) Talking to 3 year olds might be one of my all time best ways to spend time (seriously the under 5 set in general have me smitten.) They really do say/do the darndest things.
Fall weather, oh how I love thee chilly night.
OMG, Harry Potter and the Deathly Hallows Part 1 comes out ONE week from today. I seriously can barely contain my excitement. This book series makes me so happy, makes me think of my dad and just plain warms my little reading heart.
That my husband kisses me good bye and says he loves me everyday before he leaves for work and comes home and gives me a kiss and hug after a long day. It's not a habit, it's all real and I love the little things like this that he does to let me know he loves me.
Ok, couldn't narrow it down to 7. I get to see my brother tomorrow (he's the best man in a wedding down here this weekend) Yee Ha! Bonus, my mom will be here Saturday for that same wedding:)

There you have it, what are you thankful for?

Thirty Fun

2010-11-09T12:46:00.001-08:00

(August 2010)

Yesterday was my 31st birthday! I've been saying for months that I was going to be Thirty Fun this year. Here's my bday post from last year, the big 3-0. Maybe things didn't turn out exactly as planned, but I'm still holding to those wishes and thoughts. I always have hope for a better year, I'm no longer Thirty and Flirty, Thirty Fun here I come!

For my Thirty Fun year, it is my goal to believe and live by this simple, yet profound statement:

"There is a difference between Acceptance and Resignation. I have accepted that this is my situation, but I'm not resigned to the fact that is has to be this way always."**

-- Michael J. Fox

I have to admit my Thirty Fun day wasn't all that, as I got the awful gift of the stomach flu, hence being a day late on this post. Nothing says Happy Birthday like barf and diarrhea;) So we'll just pretend that Thirty Fun starts today as I'm on the upswing of the nasty virus. Acceptance right?!

Thank you to everyone who sent me birthday love yesterday, you really did make my day when I was otherwise feeling quite crummy.

**Thanks to the Rikster for sending me this quote. He watched Mr. Fox on David Letterman a few weeks ago and caught this statement. I love it and it's so inspiring.**

Running For Bootys Everywhere!

2010-11-06T20:24:00.000-07:00

The hubs always pulling my weight. Take Steps walk, June 2010.

The Crohn's and Colitis Foundation of America has numerous fundraising events throughout the year. You might recall the Take Steps walk we participated in during the summer. They are a great way to mobilize the community to raise money for research, education and programs to help patients fighting these yucky diseases.

Well the hubs will be participating in another one of these events on December 5th and it's a doozy. He'll be running the Rock and Roll half marathon (yes 13.1 miles) down the Las Vegas strip, raising awareness and money for CCFA as part of Team Challenge.

Can you believe that!!???? Is that cool or what?

He's been training since early September, working through a knee problem (a patella disfunction, yes just like our dog Charlie,) getting up early on Sundays to run with the team and not giving up on his training even when he's worked long days and is exhausted.

It's been so neat to watch him get so excited about this.

Both he, and my dear friend J (who is participating too) have also been working hard to raise funds for this great cause. So far between the two of them, they have raised more than $8000!

I'm so proud of both of them. Not only are they doing this to raise money to support me and IBD patients everywhere, but both have had on their list of life things to do to run a half marathon and what better place to do it that in Vegas. This will be a major physical accomplishment and really I'm in awe. I wouldn't want to walk/jog/run 13.1 miles even if I was feeling good.

For me, I love that this is something the hubs can feel empowered by and I love the support through positive messages and donations he's received so far (thank you to all of you.) It's been so amazing to see him get the spotlight and focus for once. My heart swells when I think about him and all he's gone through as the mostly silent other half of the ridiculousness of the last four years and how amazing he is.

Now is the chance to support him as he continues to support me! As he keeps runnin and runnin and runnin just like Forest, you can help him keep that fundraising number moving forward too. (He's so cute when he gets a new donation. Always a big smile and an element of surprise that people actually donated!)

Click HERE (or on the picture in my sidebar) to find out more information on how to donate. If you can't donate, no problem, please leave him a comment of support here. Words are just as powerful. He is raising money for CCFA, but he is also doing this for all those caregivers who support us patients.

He's working his booty off to save ours. I love you babe, thank you!

Go Team Challenge! Viva Las Vegas...

Oh ThankBlog!

2010-11-04T17:42:00.000-07:00

(via google images)

My favorite month is here, November, hip hip! The month that should remind us to be thankful everyday, all year long. With that said, each week this month I'm going to do a post with seven things I'm thankful for (I thought a post a day was a little bit of an overkill!)

So here you go, oh ThankBlog Week 1:

The GIANTS winning the world series!!!! My brother has literally waited his whole life for this moment, a die hard fan, the kid had a life size cut-out of Will-the-thrill-Clark in his room when he was younger. My dad is beaming up in heaven. Hummmmm Baby!
Having a girls trip with my mom last week. Although it was for some serious reasons, we still had fun just being together.
My awesome PCP! Dr. A is amazing. He listens, he's informed and he takes action. Plus he is funny and sarcastic.
Good books. I'm reading the G.irl with the D.ragon T.attoo series. Love it!
Sharing a mini ice cream cup with the hubs at night.
Pictures. It's so fun to look at them and remember the good and the bad;)
Campaign ads are OVER!!!!!!!!!!!!!!

Happy Thankful Thursday.

Now What?!

2010-11-01T10:03:00.001-07:00

A very fun reason to get home yesterday -- Trick or Treating with Tinkerbell!

Well I'm back in very sunny So Cal. It's so nice to be home, I was so happy to see the hubs and my Charlie girl. The last few days have been a little whirly.

Sorry for not updating sooner, but I've had a lot going on in my head since my appointments on Friday. I'm still trying to process everything so for now, I'm just going to list what did and did not happen and where I go from here.

First, I'd like to say that the CC was amazing. The efficiency in which they operate there is amazing. It really should be like that in the whole health care world. The GI team was able to make appointments in other departments, when I got to those departments they could just jump on the computer and see what had happened over in GI. I didn't have to fill out hours of the same old paperwork, it was great. Plus all the doctors I saw were passionate and compassionate. They all took me seriously and nobody made me feel crazy.

But with that said, I did not leave there with the ah-ha moment I was desperately hoping for.

I had my pouch scope on Friday morning (no upper GI scope though.) After three tries, the nurses finally got my IV in and then I was wheeled in, given the magic drugs and from there things are pretty fuzzy.

I only remember seeing the dr standing over my bed talking to my mom and me, not what he actually said, and then when they closed the curtain I remember starting to cry. That's it. Apparently I asked my mom three times what she had for lunch, I vaguely remember getting back to the hotel and really nothing in between. Ahh the magic of chemistry!

Anywho, Dr. GI Amazing basically said:

* My pouch looks good (which we knew, but was nice to have confirmed since I have some naysayer Drs here in So Cal who don't believe in my pouch.)

* My pouch is large, which could be the reason I have so much gas and pain from food getting in there and being trapped with all the air.

* They think the blood in my stool is coming from a suture line inside my pouch.

* No signs of anything going on inside my pouch -- fistulas, infection, etc.

So you are saying this is all good, and it is, BUT and it's a big BUT, that means no solid answer for my issues that are very real. Hence the reason for the tears. I do have a whole list of things to email Dr. GI Amazing now that my head is a little clearer, so I can have a better understanding of exactly what went on.

I also have to email Dr. Surgical Brain and find out what the radiologist said about the review of my CT scan. Plus I need them to send me my discs back.

Friday afternoon, we went off to see the Pain Management specialists. Dr. Peppy was awesome. She explained right away that the pain I have around my stoma and in the front of my right hip, is different than the pain I have on the back of my right hip down to my butt cheek area. It was nice to have somebody actually explain this. She said the pain in the front could very possibly be scar tissue/adhesion pain and really there isn't anything they can do for that. LOVELY.

But she then pressed on spot just above my right butt cheek and I about jumped off the table. She said, "yep your sacroiliac (SI) joints are inflamed. We can take you back right now and give you a steroid shot right into the joint. It may work, it may not, but it's worth a try to relieve some pain." So of course I said, sign me up and off we went.

Thankfully they gave me a nice numbing shot in my toosh and a nurse to hold my hand and explain everything that was going on behind me. Because in true Al fashion, the Dr. had a heck of time getting the needle in the right spot. She kept saying what is going on here, this doesn't usually happen, my needle seems like it's bending:) But she finally got it in the spot and now we wait and see.

So what does that exactly mean, well when we got back to the hotel (after my mom took a Zumba class, her favorite!) she was looking up how to spell sacroiliac and came across and article on enteropathic arthritis. The funny thing is that I had looked up some info on this probably a year ago, because I have a lot of the symptoms.

***This type of arthritis is a form of chronic, inflammatory arthritis associated with the occurrence of IBD! Each individual tends to have their own unique pattern of presentation and activity of the illness. The initial inflammation may be a result of an activation of the body's immune system, perhaps by a preceding bacterial infection or a combination of infectious microbes. Once activated, the body's immune system becomes unable to turn itself off, even though the initial bacterial infection may have long subsided. Chronic tissue inflammation resulting from the continued activation of the body's own immune system in the absence of active infection is the hallmark of an inflammatory autoimmune disease.***

Just to be clear, I was not officially diagnosed with this, but I'm seeing another pattern. I've had a feeling for quite a while, I may have mentioned it here, that my current main issues may not be directly GI related and that seems to have been confirmed by my trip to CC. Good news!

But here's the now what part. Dr. GI Amazing and Dr. Peppy recommended I talk to my fabulous PCP about the following:

* Scheduling a bone density test (I had one three years ago, that showed osteopenia) need to recheck to see if things have continued to deteriorate

* Have an X-ray of my hips

* Get a referral to a Rheumatologist

* Get a referral to an ENT (to discuss my chronic cough, which Dr. GI thought was caused by sinus issues)

Dr. Peppy gave me the name of a pain management doctor here in my area and also gave me a prescription for something that may help with the extreme numbness I have in my lower extremities and fingers. I need to do some more research on this before I take it.

What didn't happen during my trip that I was hoping for:

* A concrete, singular answer with a course of treatment that will definitely work (ok so maybe that was a little bit of a stretch to expect, but I still had hope.)

* An answer to my ridiculous nausea and lack of appetite problem (I'm now hoping that the ENT will say it's because of post nasal drip and that will be solved. See I still have hope.)

* A complete reassurance that this isn't all in my head (although I know it's not and the doctors really did NOT make me feel this way.) But irrationally I can't help feeling this way a bit, I know that may be ridiculous but it's how I feel so there.

I was really just hoping that we actually would be closer to a final answer and I know we ruled things out which is good, but it seems a little daunting to have new things that are totally foreign to pursue. And maybe what's most daunting is that I won't ever have an answer, I'll just have to live with the level of pain I'm in and figure out a way to still have the things I want in life within these parameters.

I do have a lot more in my head swirling around. But with the craziness of Friday, a full travel day on Saturday, flying home to So Cal yesterday and doing some trick-or-treating with our adorable god daughter, Tinkerbell -- I've spent all the spoons I have for now.

I'll be taking the next couple of days to rest, make my next appointments and continue to process.

Again, as Drew Carrey used to say, Cleveland really did Rock! At least we aren't at a total dead end yet. So I'll just carry on as usual. Thanks for following along and supporting us through this continuing windy road.

Surgical Brain

2010-10-28T09:33:00.001-07:00

My mom and I before this morning's appt, we've got to document this experience.

Day two of the big Cleveland adventure started early this morning with a visit to the colo-rectal surgery department.

First I must say that EVERYONE here has been so nice, friendly and helpful -- maybe I'm jaded from living in selfish, annoyed So Cal, but it's surprising and refreshing to have people be so happy;)

Anyway, we were greeted by a lovely nurse this morning who got us all situated and took all the necessary information. Then the surgical fellow came in (this seems to be the way with the big teaching hospitals) to get the gist of my story and then he returned with Dr. Surgical Brain.

Dr. SB was young, probably late 30s and very to the point, very much a surgeon. Not too much banter with this guy not even a smile, but he was so smart and he knows his stuff and I liked him. He asked great questions and assured me that here at CC they are committed to continuing to train their surgeons on the k-pouch because they know it's becoming a lost art and they know people are nervous that someday there won't be anyone who knows what we are talking about (I was one of those people, so this is a HUGE relief!)

He thinks that there is probably inflammation/infection still hanging out in there and festering since my symptoms are the same minus the drainage. He said it's still soon after surgery and that things are still angry. His preliminary suggestion is that he write a prescription for me to take home for a six week course of IV antibiotics. (Uhhh thank you, have I not been saying this for almost a YEAR?!) He said that these stubborn things take a long and steady course of strong antibiotics. At this point it's too soon for another surgical expolration, which is good news to me.

Dr. SB is going to review my latest CT scan, the one from late July, with their GI radilogist this afternoon. Unfortunately he will be in surgery in the morning and won't be able to be in when Dr. GI Amazing does the scope. You could tell he was a little perturbed by this, but he said to just have Dr. GI page him when we are done, they would talk and come up with a plan for me. I'm really hoping that all happens tomorrow.

My only issue with Dr. SB was that he directed most of his talking to my mom, which bugged me and even though I was piercing him with my eyeballs to make him look at me, he just couldn't do it. Hello I'm not 16. My mother is awesome, but I am an adult and I was the one doing all the talking on our end. Maybe he was uncomfortable with my straight forwardness, who knows. It was actually kind of funny because my mom noticed too. Oh well, that's really minor in the grand scheme right.

We again left there knowing without a doubt. that we are in the right place. That they don't think I'm crazy, they will work to help figure me out and have already given me some good out-of-the-box thinking.

Cleveland continues to Rock for us. Hopefully tomorrow will bring it all together.