Tuesday, July 21, 2009

Bubbie-itis

Bubbie-itis.
That's what I've decided I have.

"itis" denotes inflammation as opposed to "osis"which implies pathology that is chronic or degenerative but without inflammation.


Sorry this post is seriously dated. I was too symptomatic to think about it let alone post about it at the time. And then I took off for a few weeks on a road trip.



Since my RE-diagnosis of Sjogrens CNS Vasculitis (see...another itis) and Mixed Connective Tissue Disease, (isn't this all the same?) I have been sent to a different specialist for every part of my physical body. My shrink hasn't seen me yet, but I'm waaaaay overdue. I have been getting a crash course in autoimmunity. I thought I knew what I could expect when I only had MS and actually got to a place where I was alright with that. I think I managed to integrate a life for myself that didn't always revolve around the disease.



Did you know that there are over 100 different autoimmune diseases? I knew about Rheumatoid Arthritis, Lupus, Scleroderma and Multiple Sclerosis, but there are tons more. I read somewhere (sorry can't find the source) that the four most common autoimmune diseases are more prevalent than cases of cancer and cardiovascular disease combined, yet only receive a fraction of the budget for research from NIH.



Before, I had a picture in my mind of rouge white cells munching on my myelin. As varied and unpredictable as the outcomes of those munched wires were, I still thought I pretty much knew what I could expect.



All of the standard MS disease modifying agents had been of no use. I continued to have new lesions and had the added benefit of all the nasty side effects. Having been off all shots for some time now, I had resigned myself to just treating symptoms on an as needed basis, while keeping a look out for any new promising treatments should I be in the mood to be a Guinea pig again.


Now I have an image in my head of thousands of white cells that somehow resemble a cross between Don Quixote and Mr.Magoo on crack. Blind, and crazy, they are mistaking windmills for dragons, friend for foe, good cells for bad. Not happy with their steady diet of myelin, my Magoos are raising hell with my joints, stomach, esophagus, and skin, hence the "itises".


So, I have been under the care of Dr.Chicken Little. (the brilliant doctor who has no internal censor. Whatever he's thinking comes directly out of his mouth without delay. It was unnerving at first because I always get to know what the worst case scenario might be. It's also humorous when he looks at your chart and declares 'your getting fat' or 'old', and I get to reply in kind.

He started me on weekly Methatrexate injections. And I thought interferon's were hell...
I have a new found empathy for those undergoing full strength chemo treatments. Even with leucovorin (folinic acid) to counteract the side effects I was miserable. Ask anyone who had to be in my presence. I ached, hurt, threw up, developed new infections, moaned, groaned, bitched, and cried.

What a wimp! I know people who take this drug regularly and deal with it . But then I know people who happily took their interferon shots too. My tolerance for such poisons are obviously below the norm. It's kinda funny when I think of all the 'poisons' that I happily endured recreationally at one time in my life.....long long ago. But, there was nothing funny about this and after 3 months Dr.C.L. gave me a reprieve.


Since MTX is not something I ever want to repeat, it was suggested that I look into (he knows I take nothing without researching it first) trying Arava. Leflunomide.



During this time Bubbie's Hubby was planning his well deserved vacation, and looking forward to getting away. The idea of driving for miles and being overjoyed to be here or there taking snapshots and making memories made me want to puke some more. Luckily the ill effects started wearing off and totally dissipated by the time we left our first stopover on our trip.

We had a great time... check out pictures in next post. I feel great! WTH! I drove some. Hiked some. (yes! hiked!) Walked a lot. and the kicker.....WITHOUT A CANE!

I'm still taking meds for the various itises. Plaquenel for the major one., but I haven't taken a pain pill in over 3 weeks. Knock wood. Throw salt. Do something.

I have no idea what to attribute this miraculous change up. It could be the ups and downs of flares associated with autoimmune diseases, it could be that the MTX knocked the shit out of those errant T cells or it could be that I need to get away more often.

What do you think?







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