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Tuesday, April 9, 2013

Best Week EVER!

So, the title may perhaps be an overstatement... but this week has been really, truly good!!!


A Recent Photo of Semi Colon
I feel like a different person! Well, actually, I feel somewhat like MYSELF, not the weird sick antisocial, unproductive Hannah who does nothing but sleep, too tired to get dressed or get things done or leave the bed, much less the house! It's WONDERFUL! I still don't have great stamina, but this week has been such a tremendous improvement!

I also am having a LOT less pain for the most part, although the last few days haven't been stellar. For the last week, I've been able to COMPLETELY ditch one of the hard-core pain meds that I have had to take almost daily for a year. I hope that God will allow the pain to continue to decrease so I can get OFF (or at least significantly reduce) my pain medicines! That would be amazing and would shock my doctors (in a good way)! It's been simply amazing and incredible to be in less pain!

Yeah, that's right... I was taking rat poison
Also, I got word this week that I can finally stop taking anticoagulants! I've been on them for seven months due to the blood clot that formed in my arm after PICC line #7 back in late September. This med required constant tweaking and weekly (or biweekly, if the doctor was feeling generous) trips to the doctor for finger pricks, as my blood levels NEVER seemed to be right. I am so thankful to be able to ditch that med!

The not-so-great news is that my tummy is still really struggling. I am continuing the liquid diet. Every few days I attempt some food like corn puff cereal in lots of almond milk (that's my healthy choice. My other choice has been Cheetos). I choose things that melt to practically nothing, so theoretically, they shouldn't block me up. Well, theory and practice have yielded different results - I have more pain and feel partially obstructed after eating pretty much anything that's not liquid.

Missed it by *that* much!
I called Dr. FancyPants' office (who, once again, was rapid in their response to me, which I GREATLY appreciate). Dr. FancyPants' nurse called back to say that he recommended a course of antibiotics - he suspects that I have bacterial overgrowth. I'm pretty sure that I do NOT have bacterial overgrowth... you really don't want to know how I can tell this, but trust me - I've had that kind of issue in the past and it makes its presence known in ways that are hard to miss or ignore. Since I'm not experiencing those symptoms right now, I am very hesitant to potentially mess up my internal chemistry with unnecessary antibiotics! I tried to tell the doctor through the nurse that I didn't feel bacterial overgrowth was my issue... but really, I need an appointment so I can speak with the doctor directly instead of playing telephone relay. I had the opportunity to see his PA right away, but decided to wait until I can see Dr. FancyPants himself. Obviously I don't mind PAs at all, but I really don't want to have to explain my story to yet another person right now when Dr. FancyPants and I are still getting acquainted.

The Ergonomic Cimzia Shot!
If only all injections were this easy to grip.
The other not-so-great news is that we have not been able to get the inflammation and swelling in my joints and muscles under control. So... this week, I started a giving myself a new shot, Cimzia, a biologic treatment similar to Remicade and Humira, medications I tried for UC and pouchitis, respectively. JP Dr has wanted me on this med since I first saw her back in June. I've been holding out for a long time, but I agree that we have more or less exhausted other options - dietary changes (gluten-free since late January), increased methotrexate, increased steroids, and changing the type of steroids. Despite all this, I continue to have pain, swelling, stiffness in my joints (my hands, feet and hips are the worst) and in the muscles of my neck and shoulders. I hope that Cimzia works! JP Dr. hopes that this will put my arthritis in remission AND calm down my immune response to stress and illness (you know, the scary overreaction that causes my body to go into shock when I have a surgery or get sick). There's some trepidation about the girl with the long history of serious intra-abdominal abscesses now taking THREE immunosuppressant medications, but JP Dr feels that the potential benefits outweigh the possible risks. If I'm not seeing marked improvement after 3 months, I will discontinue Cimzia.

Although things obviously are far from perfect, I am really, truly feeling SO MUCH BETTER! I am not really sure why... Could it be the gluten-free diet finally kicking in after a few months? Maybe it's the Manual Therapy called Airrosti that is helping my muscle pain. Or perhaps it's the increased steroids masking everything. Maybe the exercise I've been faithfully doing this year is finally helping after months of no change. Who knows why - I'm just thankful that I AM feeling well... and praising God for His kindness to me!

Hannah ;)

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