Monday, June 8, 2009

Brought to You by the Letter “A”

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Wowza. You people know how to alliterate.

I was hoping to have a couple of ‘a’ ideas to choose from, but I never expected the comments last Monday to be so entertaining! I have to admit I originally intended to choose the most fun and wacky topic suggestion, but then a few of you commented about wanting to know more about my illness [Ankylosing Spondylitis] and things associated with the disease.

A couple of you asked straight up:

* Any new research, medications, etc for Ankylosing Spondylitis? Well, it does start with an "A"

* I second the idea to talk about your illness and research, etc. related to that topic for "A". I know it would help us all understand your day to day struggles.

Another asked about the emotional side:

* "attitude" I would like to talk to you about how you keep such a good attitude. Is it something you just are or do you work at being positive? And how do you achieve it each day, moment etc. And do you ever find yourself in the dark place of a bad attitude?

And one of you pulled out some rheumatic alliteration:

* Okay, finally got one...
anticlimactic antics in annoying arctic air around associated arthralgias...

It would have been appealing to put all artistically articulated alliteration attempts one-after-another in the post and leave it at that, but I figured it would be cheating a bit if I let you guys do all the work for me!

As it turns out, you’re asking about my disease during a week where it’s making life even more difficult than usual. I’ve been half-tempted to take the week off, but I decided instead we may as well just attack it head-on, right? The next few days will be posts answering some of the questions/topics you have asked about this illness, and since I know I’ve gained a lot more readers since my one post explaining the disease a year ago, I thought I’d take today to explain the basics.

I have a disease. It sucks.

Ok, maybe that was a little too basic. ;) Let’s try that again.

My disease is called Ankylosing Spondylitis. It’s a genetic, systemic, autoimmune disease… which means it’s hereditary, it can affect pretty much any system in my body and it all stems from my own immune system attacking me.

Good times.

The way I explain it to kids is that when they have a cold, their body sends little Pac-Man cells to eat up all the bad germs so they can feel better again. My body gets confused and can’t tell the difference between the bad germs and the rest of my body, so the Pac-Man cells just attack everything. And that ends up making me feel sick and in pain.

To grown-ups, I simply say my immune system is ignorant. The Pac-Man [also known as the HLA-B27 antibody] started out by attacking the joints in my sacrum [low back], spine and neck. As the joints are attacked, inflammation occurs and scar tissue forms around the joint. The goal of the disease is to keep attacking until that scar tissue forms into bone and fuses the joints together. The process of attacking/fusing is what causes a great deal of pain.

There was a time, not long ago, when doctors believed this was purely a man’s disease, but there is more research now about the affects of the disease in women, and they are discovering that the disease can progress differently in the genders… but the truth is that it’s different for every person. Some people fuse quickly, and after fusing the pain burns out with the disease process. Some fuse slowly or not at all, some have many systems affected, some only have certain joints that cause problems. There’s really no rhyme or reason and there is certainly no predicting it.

I’m one of those people who deals with inflammation all throughout my body and systems. I have pain in my joints 24/7, feeling them every moment of the day. Some days certain areas are worse than others, and different joints flare more at any given time. There are days where I can be walking behind George [my walker] without a problem, and the next moment I can’t put pressure on one of my ankles. That may last 10 minutes, that may last 10 days. I honestly never know and never count on anything, just dealing with what comes as it does.

I can have inflammation in my eyes [iritis], inflammation in my lungs, problems with my digestive system, fevers, chills, night sweats, nerve pain, you name it. I have leukopenia, which means my white cell count is low and goes lower when I’m sick, so if you come to my house with a sniffle I could get pneumonia. I take medication so I can eat, breathe, sleep, move, go to the bathroom, deal with pain, migraines and a host of other issues. My lungs have become more of an issue because my ribs don’t expand as much as they used to, which means my air capacity is [at maximum] around 60%.

The other problem having to do with my lungs, which I’m dealing with now, is that allergies are directly connected to the immune system as well. As my disease has progressed I have found myself allergic to almost everything… smells, allergens, cleaners, wool, flowers… and now I’m simply allergic to the air, hence my confinement to my home. No open windows, no going outside, no warm sunshine on a beautiful day.

The pup can’t go outside anymore either, as he carries the air in on his fur and causes reactions for me. It’s definitely an on-going process and I am constantly learning to adapt to each new thing that arises, but I will say that as time has gone on the adapting process gets easier and happens faster. Acceptance comes more naturally with practice.

Now that you have a general idea of the illness, I’ll address the million dollar question: why can’t they fix it?

Well, there are a lot of new medications out there that have made huge differences in people’s lives. Some that have been living with the disease have seen improvements, and patients who are just developing the disease are able to take medications and avoid a lot of issues, or at least have the development slowed down.

I have tried every medication at my disposal, and I am only able to take one medication that has any impact in fighting the disease. The n-saids, which help with inflammation, nearly destroyed my digestive system. I took methotrexate, which is a chemo drug, and withstood migraines three days out of every week for as long as I could, but eventually my rheumatologist pulled me off of it. [Thank God.]

There is a newer class of medications, you’ve probably seen the commercials for them: Enbrel, Humira, Remicade, Orencia. These are fantastic drugs that have made a huge difference for a lot of people. I have allergic reactions to them… the kind where my throat starts to swell shut. So, those are out.

The one medication I take for the disease [other than the pain killers] I can only take in a limited amount before my white counts drop to a level the doctors aren’t comfortable with.

In other words, I’m stuck. And I’ve exhausted every option. And yes, I’ve tried homeopathic things that were worse for me than any drug I’ve ever taken. I spent years fighting, and I will always try what I can in the future, but accepting what is, living with it, embracing it and finding joy in it is the only way I know how to live a productive life. And as much as this disease has taken from me, it’s also given to me and taught me and strengthened me.

But I’ll tell you more about that over the next few days. This post is plenty long enough already. :)

Now, since you’ve made it through all those fun details, I feel it’s my duty to provide you with a photo to leave you smiling for the day:

_MG_7533

You just gotta love that ‘hawk.

a to z

Alright now, blog peeps… don’t forget that you still have work to do. Next Monday will be brought to you by the letter “B” … and you have to come up with the topic. Now go to the comment section and fire away!

87 comments:

  1. i just love you so much. i hope you know.

    ReplyDelete
  2. I do, kiddo. Love you back and praying for you while you're in Africa. Just remember I'm only an email away. :)

    Recent blog post: Brought to You by the Letter “A”

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  3. Christina J. WerdebaughJune 8, 2009 at 1:31 AM

    I can't tell you enough how amazing I think you are. Our experiences are alike in many many ways. Your transparency with your readers is such a gift, and helping others to understand what it's like to live everyday with chronic illness is priceless. I,too, take meds to eat, digest, bm, pee, see, breathe, walk, crawl, stop seizures, etc.etc. on top of supps and alternative treatments out the whazoo. Sometimes I feel like my life is on pause or slow motion while everyone elses is on fast forward. People take for granted simple things like being able to eat the things you like and go to the bathroom without assistance of medication, catheters and enemas. Or just being able to walk outside on a sunny day. You remind them of what a blessing life is in the simplest ways. I, too, have tried everything under the sun, and learned FINALLY after surrendering to God that I handle life much better when the prognosis worsens around every turn. I'm so proud of your strength and courage. Keep up the good fight. Thanks for giving of yourself and your gift. Wishing you many many good days, my friend.
    Blessings,
    Christina W.

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  4. Robynn's RavingsJune 8, 2009 at 2:38 AM

    I do not know how you keep from being overwhelmed, Gitz, and I know you must be at times. But your faith, joy, and humor shine through all you do. Thank you for giving us a look at what you face and deal with everyday.

    I would like to know when your symptoms started, what they were in the beginning, and how old you were. My son suffered a major bout of iritis for no apparent reason with an accompanying low white count. Probably an anomaly but not something I'd want to miss if I should be looking closer. They checked him for R.A. but that was negative.

    Recent blog post: Weather On The 8's - From My Bra

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  5. house on rancheroJune 8, 2009 at 5:01 AM

    Amazing...that's what you are!!! Oh, and sometimes a pain in the _ss....you can add the letter of the day to complete :*
    Love ya

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  6. Robin~All Things Heart and HomeJune 8, 2009 at 6:42 AM

    Thank you for talking about this. I knew before but feel I know better now. I pray for you already Sweet Girl but this post helped me understand how to better direct my prayers.
    I'm always humbled by your attitude today more than ever. Love and gentle hugs~
    Robin

    Recent blog post: Never Underestimate The Power of Paint~Part 2

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  7. Bathtub. Brothers, Banister - you could choose one or put two or more together. ;)

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  8. Brains. You're obviously very intelligent. Who in your family passed on their smart genes? :)

    Hugs to you today, friend!

    Recent blog post: gabe’s other woman (and other juicy weekend details)

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  9. Bible - your favorite passages and the ones where you find the most sustaining hope. Or bravery. Unless you want to save it for "C" and courage. I so admire that Attitude of yours. Your faith and hope are such an inspiration, Sara. I'm so blessed to have "met" you.

    Recent blog post: The Hummus Among Us

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  10. Its overwhelming to me to just read about it. I can only imagine this long and most difficult journey you've traveled. I think you will help a lot of people by talking so openly about it and working so darn hard to live such a productive life. I hope you fully know and feel just how productive your daily life truly is and how much you showing up here everyday is so motivating!! Love that hawk about as much I love our Gitzen Girl ;)

    Recent blog post: Schools Out...

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  11. Thanks for sharing your story. I think it puts a lot of things in perspective for people.

    For B, I think it should be books and blockbusters. The best and worst of your movies and book picks.

    Recent blog post: Lets see how you do

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  12. Just found this on my storytelling listserv and thought of you.
    "there is a buddhist saying that recognizing that everything is already broken, liberates the mind to be joyful"

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  13. Praying for your healing ... He can do it ... and I know He is proud of your walk and how you share it and encourage others.

    Brownies, Bible verse, Banana's, Bandana's, Boxes, Bra's, Boys, Boredom ... there's a few b's. Have a great day Sara!

    Recent blog post: Tadpoles and Budding Frogs

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  14. Is there anyone else in your family that has this? Or extended family? I ask, because our youngest has some genetic issues, but we have been told his was caused by a fluke mutation. You are so not a whiner! And because I am a whiner, you inspire me to try not to complain over every little thing!

    We have some campus outreach students this summer and the first thing the young lady noticed yesterday was your canvasses. She really liked them. I am going to show her your site eventually......yesterday it was just getting to know them!
    Prayers!

    Recent blog post: A wonderful find and other ramblings.....

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  15. Thanks Gitz for another amazing post!
    I liked the earlier mentioned idea of books and blockbusters. Would love to know some of your favorites!

    Sorry to hear this has been a rough week for you. Hang in there...and also don't be afraid to take a little break if you need to. One thing you can count on...we'll all be here when you get back. Big (gentle) hugs to you today!

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  16. You are truly an inspiration. Makes me realize how small and simple may pains are.

    For B - I like Bible (favoite verse), the Beautiful things you enjoy or Blessings you've had

    ReplyDelete
  17. I am also interested in Bible passages, or quotes from any books, that help you deal with life. I know you use your favorites for your canvasses. Do you consciously seek out a particular verse, depending on your mood?

    Do you brew coffee or tea with your meals? Which is your favorite blend?

    Of course seeing Riley in a black bandanna, which would really bring out his bad self, or perhaps even a babushka, would be neat. Don't tell him, but I think he would look as cute as a button.

    Do you ever get him any bacon flavoured dog biscuits? Does he like blueberry pie from the bakery, made with lots of butter? Make sure they don't burn the pie.

    I am going to guess that Riley may sometimes acts like a bully, but he is never a burden. I know he shines a lot of brightness in your life. Does he have any brothers? Does he come from a large brood? He really is your best friend.

    Bravery, beauty and brains are the three best words to describe you. Now I am starting to babble.

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  18. i know you didn't share your story so that we would tell you how wonderful you are. BUT...you really do amaze me. when i start to think that my life is limited by my illness, you often come to mind. your attitude and your joy are contagious. i know they come from Jesus.

    the letter "b", huh? bras, bugles, bandanas!

    Recent blog post: 525,600 x 2

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  19. I know that you and others go through your own daily struggles, which is why I decided to answer the questions... everyone has something and knowing others make it work definitely helps.

    Hoping your day was a good one...

    Recent blog post: Brought to You by the Letter “A”

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  20. AS usually starts in your early 20s [which I was], but there are juvenile cases. I wouldn't say iritis is a big cause for concern, but it's good to keep filed away in your memory banks should other things arise. I was tired, having a lot of aches and pains, getting sick easily and was developing symptoms when I was in a head-on car accident. They believe the trauma sped up the disease process and it went downhill quickly from there.

    Recent blog post: Brought to You by the Letter “A”

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  21. oh leslie... i hear that everyone born on May 13, 1973 has that pain in the _ss =-X tendency. :-P

    Recent blog post: Brought to You by the Letter “A”

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  22. thanks, friend... i tried to be pretty straight-forward about it; i know it' a lot to take in, but i have been getting more questions lately and thought it would be a good time to talk about it again. As always, your prayers are appreciated :)

    Recent blog post: Brought to You by the Letter “A”

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  23. SO FUNNY... all three of those things together brought up a specific memory. Go figure :)

    Recent blog post: Brought to You by the Letter “A”

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  24. Oh, I don't know if I got the brains as much as the bull :)

    Recent blog post: Brought to You by the Letter “A”

    ReplyDelete
  25. Thanks, Candy... it's so fun knowing we've met through this blog world and yet you live down the road and are connected through friends. The world just gets smaller, doesn't it?

    Thinking about you and the pup today. Sorry again for your loss...

    Recent blog post: Brought to You by the Letter “A”

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  26. The hawk has been keeping me going this week :) Thanks for always showing up here... you're one of the best by-products of this blog!

    Recent blog post: Brought to You by the Letter “A”

    ReplyDelete
  27. Oh, I like that suggestion a lot...

    Recent blog post: Brought to You by the Letter “A”

    ReplyDelete
  28. I LOVE that, Gail. The more I read it, the more I absolutely agree. That might need to go on my wall :)

    Recent blog post: Brought to You by the Letter “A”

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  29. Thanks, Debra... and thanks for all the "b" suggestions, too. I think I'm going to like these challenges...

    Recent blog post: Brought to You by the Letter “A”

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  30. I'm so glad she liked the canvases... that's so flattering!!!

    When I was diagnosed, mom remembered that my great-grandpa was fused into the position of his wheelchair when he died; they had to break his bones to lay him flat in the coffin. They didn't have a name for it back then, but I'm sure he had AS. My oldest brother was diagnosed with psoriatic spondylitis a few years after me. Where mine started in the larger joints/spine and moved elsewhere, his started in the smaller joints and moved bigger. He has slowed down some, but is living a very productive life and able to take the medications, which is a huge blessing. He has three kids to keep up with and it makes me incredibly grateful he's able to so well.

    Recent blog post: Brought to You by the Letter “A”

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  31. So funny to have you call me gitz :) I like it!

    I can't tell you how long I've been wanting to call you and catch up, but just can't find the voice or energy. Thanks for showing up here all the time so I can see you anyway :)

    Recent blog post: Brought to You by the Letter “A”

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  32. We all have small, simple pains and big pains. But I've learned we all have big joys to look at, too. That's the most important part.

    Recent blog post: Brought to You by the Letter “A”

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  33. I can always count on you, Ed :)

    Recent blog post: Brought to You by the Letter “A”

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  34. And the joy comes back from all of you... it's why I try to do this every day whether I feel like it or not!

    Now, as for the bra... does it count that I barely need one?!??!?! :-P

    Recent blog post: Brought to You by the Letter “A”

    ReplyDelete
  35. Robynn's RavingsJune 9, 2009 at 1:02 AM

    Thanks Sara,
    It certainly isn't something I've thought about a doubt that it is a concern
    but he got sick from everything for about a year, had sore joints and deep
    tissue, and then the iritis. Seems to have resolved mostly but I always try
    to stay informed. I'm so sorry you have had to walk this road.
    Hugs.....
    Robynn

    ReplyDelete
  36. Robynn's RavingsJune 9, 2009 at 1:03 AM

    P.S. Do you live in Ames, IA? For some reason I was thinking that. One of
    my cousins who was just here lives there.
    On Mon, Jun 8, 2009 at 11:02 PM, Robynn Reilly <robynnsravings@gmail.com>wrote:

    ReplyDelete
  37. Oh, you're a good mom to check every avenue. I hope whatever it was is something that's behind him, but you're right to stay on top of it!

    Recent blog post: Blog Peep Questions: Round 5

    ReplyDelete
  38. I don't... I live in Cedar Falls, but I do have some family in Ames. Those were fun pics on your blog with your cousins...

    Recent blog post: Blog Peep Questions: Round 5

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  39. Just like everyone else comments- you are amazing and inspiring!

    I agree with the others too about favorite Bible passages or Books that have made a difference in your life.

    ReplyDelete
  40. Is it even possible for him to be more precious?! You are one lucky girl. Just love that little boy of yours. Thank you for the pictures too.

    ReplyDelete
  41. B- boy. tell us about your first boyfriend.

    :-P

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