Tuesday, April 20, 2010

I carry a cane

"I carry a cane 'cause I tried to change and I tried too hard so I hurt my leg and well, overall, I just stayed the same.  Now I carry a cane."  --Mother Mother

Pain level: 6
Dislocations so far today: left elbow

Subluxations so far today: Right shoulder a couple of times, left index finger three times
Meds: Ketoprofen-- 1 twice a day. Unless I get sick and puke it up.
Major complaint:  more stiffness/pain/swelling/itching/tingling in my fingers, hand, and wrist (R MUCH >L)

It hasn't been an easy day.  I haven't really felt like going into it, but I've started seeing a counselor to help me cope with everything that is going on.  She is kind and crunchy and a little astounded by the extent of the situation I'm in.    

I saw her again today and, while she acknowledges that there isn't much to be done until we know for sure what is causing these problems, she wants me to do three things.  

--She wants me to remind myself not to feel guilty about my situation right now.  I can't work and M is supporting me.  M takes me everywhere, calms me down when I panic, helps me dress, etc.  I feel bad about this, like I'm making everyone's life harder.  But I need to remember that this is not my fault.  This is not something that is happening because I am not working hard at fixing it or because I am doing something wrong.  There is nothing I could have done to prevent this and there is nothing I am not doing that I should be doing.  I am doing everything I can.   We didn't sign on for this, but this is what we have and it isn't anyone's fault.

--She wants me to cry more.  Which I think is ridiculous because I feel like all I do is cry.  When I'm not in a public/friend setting I'm a pro at being a blubbering mess.  But because I don't want to be thinking about it, when I do think about everything that is going on I start to lock it down.  I'm angry (like really pissed off) and scared (yup, a lot of that too) and she's concerned I'm not letting that out enough.  That it's just sitting around in my head waiting like the rest of me for news.  She says that being strong for everyone else and trying to get on like there is nothing the matter is just another burden I'm heaping on the rest.  I'm not sure what to do about this one.  I'm sick of crying.  I don't feel like it helps anymore.

--She wants me to be more upfront with my friends.  I have been feeling sort of isolated recently because I feel like no one really understands what is going on with me.  I have been told all my life by doctors and family that talking to anyone about my health problems was just looking for attention.  That my health problems were all in my head and I was just making them up to get the attention.  After 13 years of that even though doctors now confirm that I have serious conditions, when I feel like I really need to talk to someone about these legitimate problems, I suddenly feel like I can't because they can't possibly want to hear about it and will think I am just looking for pity.  Well, sure.  I feel like I need some attention, because--as M put it--attention is the opposite of being ignored.  It's not that I'm doing this FOR the attention, I just feel like shit and like I can't do this alone.  

M says that I have presented my situation to our friends for so long as being a person who doesn't want pity and will only talk about my health-shit in a joking matter and so no one thinks that I want someone to come up to me and ask, "Hey, how are you holding up?  Exactly what is going on?"  But I do.  I feel like if they ask and I do anything besides joke that I'm pretty shitty, if I break down, that my friends would regret talking to me about it.  I feel like I've got so much right now and even though our friends are expressing concern to M, I rarely hear it.  And that makes me feel very alone.

But I feel like a complete asshole freaking out so much right now because we don't even know what it is I have!  There's a slim chance that this is just an atypical presentation of Rheumatoid Arthritis and then sure I'll still be pissed and scared about what the future will bring, but that would rank pretty low on the HOSHIT Meter of answers I could get.  (Which is pretty sad on it's own.)  But then I'd feel like a total fool for panicking so much and for worrying my friends for "nothing."  But while Lupus and Scleroderma are still the main suspects, I can't help but freak the hell out.  

Anyway.  Got a letter in from Social Security today.  Apparently on the documentation of the closed accounts, my mom's bank wrote the wrong number for the bank account number that I was taken off of, which would explain why Social Security is still under the impression that my name is still currently said bank account and why they are confused as to this documentation that my name has been taken of a bank account that I did not mention to them and that I have never even been on in the first place.  Why can't everyone just get their shit together?  I'm doing my part--what the hell, people?

Also squirrels dug up my bonsai out of their pots today.  They dug up all but the one I'm pretty sure didn't survive the winter.  I put them back as best I could and I guess we'll just have to wait and see if they survive.  I know they are just trees but this really upsets me.  What the hell, nature?

My right hand was a mess today.  I couldn't use it until 7PM.  It was hurting more than usual and was bending even less than normal. 

10 more days. 

Hand stiffness using middle finger has measure
Time: 8:38 PM
Can touch forearm? Holy crap! Yes! just barely
Angle of extension of the center joint of finger: 40º
Angle of extension of the last joint of finger: 110º OW!
Can touch forearm? Not even funny how much this isn't a possibility
Angle of extension of the center joint of finger: 25º
Angle of extension of the last joint of finger: 70º


  1. Hello my bendy friend,
    It looks like we've got a TON in common, too bad it has to be the crappy stuff.I've been there and it sucks. I was feeling exactly what you're feeling. I will tell you, that it does get better, I promise.
    Keep your chin up my dear!

    Sending lots of positive thoughts xx

  2. Thank you so much, Bendy Friend. While it sucks that there are other people in the world who have to go through this horrible, scary waiting game--it is at least comforting to know that it's not something that only I am living with. And I know that things will get better. As soon as I know what disease/condition I'm dealing with, I know I can kick its crummy little butt! It's just the wait and the mystery that's killing me. Thank you again so much for your kind words.