Tuesday, August 3, 2010

A Day in the Life - Living La Vida Sclero

The Beatles. Love them....... A Day in the Life.

Woke up, fell out of bed, Dragged a comb across my head
Found my way downstairs and drank a cup, And looking up I noticed I was late.
Found my coat and grabbed my hat, Made the bus in seconds flat
Found my way upstairs and had a smoke, Somebody spoke and I went into a dream

Scratch......Rewind. My song would go like this, by The "I'm Just Beat"...les

Woke up, sat up in bed, took my pills and cleared my head
The swelling goes down, I finally get up, And wobble downstairs I know this is my fate.
Found my coffee and grabbed more pills, Made it to the couch and there I sat
Fight my way upstairs and their no joke, and the dream part... I wish it were.

Upside, inside out it's Livin La Vida Sclero - where every day is a new adventure. It's like a box of chocolates, you never know what your going to get, but you smile because any candy is good.

Same with Sclero. It is always changing and every day is different. Sometimes I wish it were more consistent because I think there would be less judgement and more understanding, but again - smile and make do with what you got. And this is what I got.

Lately my hands they are a changin....  

My hands seem to be swelling more in the am. Not a huge amount of swelling, but with the mild swelling comes a new feeling of numbness and although I can...it "feels" harder to make a fist - if that makes sense. I am not really sure how to articulate what it is that I am feeling in my hands now. They feel like when you have a lot of swelling and it itches, feels puffy, tight, hard to bend - only they are not that swollen to sight - they only feel that swollen. It takes a while for that feeling to dissipate. Longer than it used to. The swelling is staying longer in the morning, as is the pain. I need to open and close my hands a lot to get the blood moving into them. I don't know if that is really doing anything or if its placebo - but its part of my new morning routine. 

The joint pain is still there, but now I have a pain in my thumb and at times it seems to stick. The index finger on my right hand is still in a constant state of mild swelling and pretty much does not work anymore. It's my quitter finger. For a while I was having trouble with my grip. The doc said it was tenosynovitis and it's par for the course. I don't like this course. I don't even play golf!.

I feel soreness on the actual bones of my fingers. My right wrist is still weak and unable to sustain my weight anymore, so bye bye push ups. When I bend it there is now a physical deformity where a large dip has formed at the joint space. The dip is so deep I could store salt in there and be ready for spontaneous tequila shots at any moment. The doc said he does not see it as a dip, but that a nodule has formed on the bone at the joint space... and nodules are a part of the party.

I put a shout out on the Inspire Site to see if anyone can remember what their hands felt like before they changed. I haven't gotten any response back yet - but in my gut I am wondering if these new feelings in my hands mean that things are changing which scares me. Just when you thought it was safe to go into the water........

Things go changing again. So that's the latest with the hands. They are not working as well as they were a few weeks ago, so we will see what time brings. The MD says to stay on the Methotrextae injections as it takes about 8 weeks for them to work, so we will see. They scare me. I hate putting toxic chemo into my body, but I think that these recent changes have sorta scared me straight. I think I got a little too big for my britches and felt pretty safe for a while with my disease. These new changes are a little reminder that this beast evolves and things will progress. 

Again - I know I have said it before, but I wish that more people understood that aspect of this disease. It is not a constant. Sometimes we can and sometimes we can't - but I don't think people get that. 

For right now I do better from mid morning (feet and hand swelling has dissipated) to mid evening around 6:30 - I get a little tired and dizzy around then, like my body is reminding me not to get too cocky. If I rest through it, then I am good until bed. Unless I have a bad day or flare. 

But what I would like people to understand most, is that we don't just wake up, jump out of bed and drag a comb across our heads... 

There is real fatigue that makes getting up early very difficult, there is true swelling that makes jumping out of bed impossible, the mornings do not belong to us anymore and if we have an appointment or work, we need to plan accordingly and get up early enough to be able to rest before we start our day. As silly as that sounds, that is Livin La Vida Sclero.

The only other news from my recent Rheumy appt was a need for follow up CT scan. My last CT scan showed enlarged liver and spleen which is pretty normal for autoimmune disease with our crazy (or should I say Loco) immune system and bladder wall thickening.

Apparently I need to follow the bladder wall thickening as it IS the Big S. Who knew? I didn't. No joke. No one told me. So I guess the beast really likes my innards because it is now in my urinary system as well , feeding on my bladder. The collagen /fibroblasts are causing the bladder wall thickening which, per the MD, may be why I always feel like I have to go pee. So that mystery solved.

I will get the CT scan and keep you updated. Good Times.

I guess that's all for now.

So long, fare well,  auf Wiedersehen, good night -

Adieu, adieu, to yieu and yieu and yieu







3 comments:

  1. My hands have been changing too, a lot of swelling and stiffness, weird sensations, burning, and bone pain (especially with the raynauds) but the skin score remains the same. They have been swollen for years, but it has increased the last few months, and they fatigue very easily now. I am having trouble writing, cutting vegetables, holding a coffee mug that's too full etc...the hands need frequent rest breaks as they are very sore, and swell more with the tiniest bit of activity (within minutes). They get indented and red and hold whatever shape I am in. No nodules, and the joints are not inflamed. Just swelling. I thought once I survived fall, winter, and spring with the severe raynauds and ischemic pain paired with osteonecrosis, summer would make me feel better. It just fatigues and swells me that much more. If you are interested in pics, send me your email.

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  2. If it helps, I know EXACTLY what you are describing/feeling as I have scleroderma too.

    It first started with my hands in 2006 where they were swollen and making a fist became harder. Then it hit my joints and then my skin. The good news is after 3 years on cellcept, it seems to have stopped. The damage that was done is still there, but there is no progression for me at the moment.

    For me, the swelling in the hands has not improved. I don't have any "claw" type disfiguring and only mild turning of a couple fingers, but the swelling is always there. What helped for me a bit is getting the therapeutic putty you can purchase in medical supplies stores and squeezing it. There are different hardnesses to try, each seem to be associated with a different color putty. But the strength in my hands is gone. I can still play gold, but things do fall out of my hands if I don't concentrate and grip hard. Any extended use, such as lots of hamming, sawing, using a screw driver or even carrying something heavy for a while becomes uncomfortable. I'm lucky - my wife massages my hands almost every night and it helps not just at that moment, but even lasts for when I wake up in the morning.

    My feet/lower leg swelling has stopped for th most part. It was extremely painful at times when the disease was active. The fibrosis in my forearms and lower legs made walking/standing near impossible when it was at its worse. Now, that is all behind me, though I still worry it might return. When it was bad, my wife massaging my feet would be so painful at first but feel so good after a few mins. She even got me something like http://www.brookstone.com/foot-massagers_usqueez-lite-calf-and-foot-massager.html which helped at night after coming home from work. I wish someone made something similar for the hands.

    Every once in a while, for a short time during the day, all the pain might stop. It wasn't most days, but once it would happen. For that one moment, it felt weird and made me remember what it could be like again. And then some pain somewhere came back. Like you, answering the question of "how do you feel" is a tough one. The new "normal" for someone like us is pain. So do they want to know what normal is for them or normal is for us? Keep smiling and keep hoping!

    http://sclerodermablog.blogspot.com

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  3. Hi there. For a while now. I've been tuning into open blogs/diaries by people with chronic illness... Scleroderma and Myositis, in particular. It's a quiet connection I've learned to appreciate. Because it can all be so challenging...

    Just want to say hello. And thanks for putting your words - and yourself - out there!

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