Tuesday, June 14, 2011

Up's and down's = Middle ground?

I have been awful about keeping this up.  Apologies.  I'm sure the rest of you bendies/spoonies know how it is.  Also, hugs and good juju to everyone out there having a hard time this month. 

It's funny, my hands still don't look like my hands.  It's been over a year since my fingers went all wonky.  They don't look like they used to.  Even on good days they're red and swollen and knobby.  Mottled with reticularis.  The skin is loose and shiny from being stretched out during flares.  You'd think after almost a year and a half I'd be used to the look of these new hands, but I'm not.  They're still weird hands. Bad hands. It's strange.

I finally received word that I have been approved for medicaid!  Again.  After their screw up.  But it's back!  So I have my back up insurance and that's a good thing.  There have been a few other insurance debacles that I just can't even bare to go into.  They involve hours on the phone and a bunch crying from me because I'm a wimp and get overwhelmed.  Bottom line, I think things will be okay.  

My condition has been pretty stable.  Joints pop out, joints pop in.  Muscle spasms.  Standard EDS junk.  Brain fog is in full force and nasty.  It's hard to find the words I mean to say.  It's like suddenly English is my second language and the vocab is hard to remember and everyday is a pop quiz.  I've had a few flare ups of my autoimmune disease.  At least I know now how to predict them.  If I start getting splinter hemorrhages, I know I've got about a week until I lose use of my hands.  

I think I've got Beau's lines on my fingernails that showed up during my last flare and that's weird.  You know in cartoons when someone's hand gets slammed in a door or car trunk and when they take it out they've got this big dent in their hand?  That's what my fingernails look like, except I didn't shut a door on them.  I took pictures for my doc.  I don't know what that means, but at least it's growing out.

I've lost weight.  Not on purpose.  More like I'm slightly concerned that I've lost weight.  Nothing drastic, just 10 pounds but not on purpose.  My appetite is riding pretty high.  Sometimes I feel like I did on prednisone: I COULD EAT EVERYTHING!  I try to keep things reasonable, but I'm not trying to drop more pounds even though I'm technically "overweight" and I bet my docs would probably like me another 10 pounds lighter.  But whatever.

The point is that by dropping weight I'm now right on the edge of the dosage amount for Plaquenil.  At my weight I should probably be taking half of what I'm on now.  So, as I said before, my Rheumy has instructed me to drop down to half my normal dose at the end of June and see how it goes.  The plaquenil has been working wonders for me.  My last blood workup had me at almost normal ANA levels.  It's really suppressing the disease.  I'm worried about what will happen. It's a little scary.  I'm worried the disease will come back on full force.  I just want to stay the course I'm on.  You know, without liver and kidney toxicity from too much plaquenil.  That'd be great, thanks.  While we're making requests, I'd also like some cheese fries.  (See, there's that appetite thing again.)

 I have a deck garden now.  M is so good to me.  She financed it and let me do all the dirty work.  It's nice being a kept woman.  It looks great and I love it.  I am pretty content actually.  I mean there are SO many things that I want to do that I can't: work, run, hike, drive, knit, etc; but still.  With what I have, I feel so content and happy.  The things that I want are out of reach for the time being and I'm starting to accept that but not in a way that I feel defeated.  More in a way that I feel zen.  So ignoring those wants and ignoring my ever present want for good health, I don't really want for anything right now. 

I used to feel like I was missing huge chunks of my self.  Like EDS and UCTD had taking big raw bites out of me and run away with them.  But I don't anymore.  I feel whole even with all my limitations.  I used to feel like not enough of a person when I couldn't dress myself or open a bottle, but for the most part I just feel like a good, whole person.  I still have my bad days, my bad moments when I mourn how dependent I am, how I just can't work a job no matter how hard I try or want to,  how I just want to be well, but they pass.  It's not like if I could do those things, I wouldn't--just that I can accept that there are things that I cannot do.  I know all this sounds contradictory, but maybe you just have to live through it for it to make sense.   I acknowledge that I am broken, but I also feel whole.  I guess it would be more succinct to just say: I am thankful.