Wednesday, January 14, 2009

So long "underweight", hello "normal" ... I'm up 3 pounds! I have to throw in here a question, why do total strangers (however well-meaning) feel compelled to comment on the weight of thin people? Jealousy is not a good excuse.

I brought up the various side-effects I've experienced: last week's nausea, metallic taste, acne (UGH). My options for nausea are a) wait & see if it goes away with continued use (doc has her bets on this one), b) reduced dose (doc doesn't want to do because of the severity of my disease), and c) self-shots instead of pills (EWW). The metallic taste wasn't really acknowledged, just that it goes with the nausea. Doc blames the steroid (from the infusions) for the acne. I don't buy that, I think it's the MTX, however, it has prompted me to change up my face-washing regimen and research some anti-wrinkle moisturizer (that stuff isn't cheap, but I feel the need to at least save my face since my joints are a lost cause). So, we wait it out.

I was also given an as-needed Rx for Tylenol #3 (which will have to be strictly safeguarded here at home since at least one of my kids has a known allergy to codeine like their Dad). If I don't find my missing right wrist brace soon, I fear that I will end up needing to take this. I don't like taking any more medication than I have to, so I need to find that brace!!

We discussed the deforming of my left hand quite a bit. I can be fitted by a physical therapist for finger/hand splints which won't be cheap and won't allow much use of my hands during wear. It won't "correct" the problem but may prevent further deformity. I'm going to think on that one a bit. I was urged to pay more attention to how my hands are used and to not do anything more than necessary with them. THAT'S practical advice for a busy mom of 3! I already conciously straighten my fingers and hands when "at rest" and I also take every opportunity when cleaning my hands to stretch the fingers under the warm water.

My labs were all good, so I have that to be grateful for.

I did have to sign an updated consent for the study. They added more specific information regarding infection risk. What choice did I really have? None, really. I signed it. If I could cross my fingers against infection, I would. Since I can't, I just have to keep avoiding illness.

Friday, January 9, 2009

ugh

This week I took the max dose of MTX I've been prescribed, and the entire next day I was nauseous. I had a nasty metallic taste that my toothbrush and paste would not cure. I eventually started checking side effects online, yes to the nausea, yes to the damned acne, but nothing about the taste. Hmmm. Gotta be sure to ask the doc about these things.

Tuesday, January 6, 2009

To apply or not to apply

Yesterday's mail brought my annual Social Security statement. Woo hoo, it's always nice to see just how little earnings I have had in the past 10 years ... not that I'm complaining, mind you, staying at home with my kids is a privilege. This spurred a conversation and some surfing about disability. My doctor told me 4 years ago to apply for it. I looked into it then and I'm pretty certain the fear of rejection is what's kept me from applying. (Mostly. I have made all sorts of excuses.) I went ahead and got the disabled parking placard last year, so I'm past the "pride" bit. The statutes and rules for disability are vague as ever, but I think there should be no denying it. If I could just send them a pic of my decrepit hands, that should do it, right? I did notice, during the conversation last night, that my left one is angling off now like the right one ... when did that happen, exactly? Tom, the guy who does my joint count at Dr. Z's asked me about the deforming last month ... was it gradual or did I just wake up one day like that. Gradual, I guess, or maybe like the left one, it just happened. I'm rambling now ... I need to just apply and get it over with.