Anky..Spon…What?

Living with Ankylosing Spondylitis can be difficult but I manage one day at a time!

The End or Beginning of the Road?

funnycatA great wind is blowing, and that gives you either imagination or a headache. Catherine the Great

2013 started off with a pain, not a bang. Well I guess it was a bang or maybe a bust, anyway I ended up in the ER with severe nausea, aching head and pain from noggin to toes. Of course the ER was so busy so I slept most of the wait after being given Benadryl for pain. I now know never to take Benadryl again. As I lay on the bed jerking and scratching I found that was more miserable than the headache I was suffering from. Eventually a CT scan was ordered and results ensued. “You just have some minor Lacunar infarct; you should be fine, just take some ibuprofen to control the pain”. Wow… really! But again he wasn’t a neurologist or anything, just a physician’s assistant.

Working in rehab I know you shouldn’t take these types of thing lightly. These infarcts never showed up before, so why now? Well it seems that when you try to eliminate yeast from your body using Nystatin it only works in the gut and not the whole body. So as I was going through my elimination all the fungus migrated to my brain… Really I don’t know but I do know that when you have yeast overgrowth is does affect the brain tissue as well.

I did go to my doc and she gave me some stronger new med for headaches and I took one pill and haven’t had a headache since. But the headaches were the least of my problems.

I tried relentlessly to get off the steroids, I didn’t like what it was doing to my body, not that I could really tell, but I just knew it wasn’t pretty.

In February I bought a juicer and started juicing all of my foods in hopes of controlling my colitis. That crap is nasty but you get used to it the more you drink. It helped for the most part in keeping the constipation at bay. My doc changed my pain meds and I started doing water exercises in the pool at work. I was on my last leg before the biologic route, which I so didn’t want to do.

I tried several other products to help me that were loaded with nutrients which worked to some extent; at least it gave me some reprieve from the pain at times. Other times all the pain meds in the world didn’t help.

In March the stiffness began to set in more frequently. I just wasn’t stiff in the mornings; I was stiff anytime I didn’t move for more than 5 minutes. It was getting harder to get out of the chair, off the couch and out of bed. But the sacrum pain began to diminish… hum why would that be? I had been taking these products called Xyngular which really was helping with the pain and some of the other products were helping with the colitis. So maybe this was helping?

I wish I could say that the products helped and fixed me, but noooo. Just like everything else it’s only a temporary band aid. In April everything went back to “normal” in the sense the UC and sacrum pain and now I had plantar fasciitis from hell. Working was getting more difficult and I was spending more of my time just trying to get through the day. The first part of May I made my decision, the decision that I had been avoiding for the last year… the time was now, and the time was biologic time.

I went to my doc appointment with really no thoughts to what I needed to do. She told me I needed to face the fact that I had led a pretty good life in remission from this disease and that I was one of the luckier ones who wasn’t debilitated by 30. I agreed, now what do we do? She explained I needed to get off my high horse, I put myself on that a lot lately, take some time off and “we are going to start you on Humira”. Ok off my high horse, “ok” I told her bowing my head like a scolded child.

Getting the Humira was not difficult, getting the time off was. I put in for FMLA but still had to work every day as much as I could, but not a full 8 hours. So I worked the afternoons for a few hours a day, as it was easier to get to work in the afternoon vs the morning.  I started my first injections at the end of May, which is funny because I really don’t like needles, but knowing this is what I have to do make giving myself shots much easier.

By the end of June and 3 shots under my belt, I noticed that the sacrum pain was gone, however, the foot pain and stiffness was much worse. Most days I couldn’t walk without a lot of extra time, couldn’t get off the couch without scooting to the edge and leaning as far forward as possible. One time I almost fell completely over but caught myself right before my head hit the ground.

The nice PT and OTs that I work with commiserated with my plight as far as my “foot” pain and began kinesio taping both legs and feet and got me set up on exercises to help with my new diagnosis of “plantar fasciitis”. It really helped a lot and by the end of July I had help at work and began working only 2 days a week. Fabulous and even more fabulous was the fact I could actually get short term disability pay. I wish I could say this fixed me as well but I can’t.

It’s now August, I’m on full FMLA leave and working on application for full time disability. I have 5.5 weeks of FMLA I can take and have decided to take all of it off. I may not have the pain, the Humira is working on that thank goodness, and foot pumps and Achilles stretches are helping with the fasciitis but the stiffness is still there as is the colitis. I cannot walk very far before my hips give out which means walking is out of the question for more than a few hundred feed and I began to feel more pain just swimming.

I haven’t given up… NEVER, NEVER, NEVER Give up! My new mottos as well as “This isn’t acceptable to me at this moment” are words that run through my brain every time my body cries out. I won’t stop trying to cure myself if it means I have to see every guru or quack out there, and I haven’t given up the hope that maybe stems cells will cure me. Now you know my entire life story, a boring one at best but it could be worse, I could have told it all in a love song!

2 comments on “The End or Beginning of the Road?

  1. Jim Weatherhead
    August 9, 2013

    I “enjoy” reading your blog if I can dare use that word and have often wanted to reach out a share my own story as one who’s been on the AS road a long time…this is my story, i hope you find it worth reading. Peace/love/joy – Jim.

    http://www.hopeandapples.com/?page_id=293

    • Joyce
      August 9, 2013

      Jim, thank you for sharing your story. Reading it I suddenly was overcome with relief that I’m not alone and that others who came before me have persevered. Thank You.

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