15 August 2006


Ahh some free time. I don't allow myself much of it to be honest. Lately, I've been busy trying to keep up with the email groups, although can't say as they are busy. Been working on the newsletter as well which can be time consuming. Although at least it's something I can do at my own pace. I feel productive but it takes me awhile to work on it because of my need to be up and down so much. And thankfully, when those fibro fog days hit, I can leave it alone and come back knowing it's still there. I have also finished (mostly) the website for the fibroknitters group. Need to work on the gallery and a few little things but they are "when it gets done" type things.

Bastian has been working on learning his letters and numbers and writing. Some basic math skills too. So that's been fun. He has such an imagination that it's not funny. He has "friends" who live with us. Lots of them actually..and sometimes their parents are here as well. He decided out of the blue to clean his room today. Without being told. He didn't finish but it looks better!

I've been ignoring some of my hobbies lately. Just not in me to concentrate on genealogy. I love doing it. Love the stories of the past, love seeing how families travelled. Love researching records even. But because I'm at a point where I need to make visits to repositories...well that's just not happening right now. I'm not physically up to it even if I were close to those places.

Right now my health is annoying me. I'm frustrated because for the first time in three years I'm being treated...and treated well. But...it's just keeping me from worsening. I know that nothing is going to make me pain free...that's ok. I'd just like to stop these flares where things worsen. It's just a cycle. And I know it's not going to stop...might lessen with treatment. But it just seems as if the treatments are not doing enough. Maybe it is just the current state of my back coloring everything. I've waited too long for my second series of nerve blocks. My back didn't start getting to the point I was ready until last month. I thought I could tough it out. But, I shouldn't have. It's not like the nerve blocks are painful (to me, others say they are) or complicated. Well there are risks but my doc does everything to minimize the risks. It's not even like it takes that long...less than an hour. No recovery issues for me either. My reason for putting it off.. I wanted to pay some on my current bill before adding to it. Well life has a way of biting you in the butt. Instead of being able to pay on that...we paid for vehicle parts. But such is life. I'm not going to worry about my bill if my doc is willing to let me pay slowly. So when I go for my monthly visit Thurs. we will discuss the appt for the block. I am hoping that like the last time, they are able to get me in quickly. After this wears off our next item in the fight against back pain is the radio frequency neurotomy. If you have a weak stomach...you may not enjoy the description of the procedure. Basically, you lay on a table, have sterile drapping and you are prepped. Using floroscopy, a needle is inserted into the nerve (or nerves) that is causing the pain (discovered through the diagnostic nerve blocks) and the needle is heated to 80-90 degrees C. In effect, it burns the nerve off. Which is how it was originally described to me. "Burn those nerves off" is the description I originally got. Through research, yep that's it. Good thing it didn't scare me. Course little my docs tell me can scare me.

I have found something that does scare me if I allow myself to think about it. Being cautioned not to fall. Normally, falls are nothing to people my age. But, when after discussing issues such as T scores, consequences of the low T score in my hip and back, getting meds to treat osteoporosis and all, my doc says to me..I'm really worried about you falling...don't fall. That kinda scares me. I just picture myself falling up the stairs. Yes, for those who have known me for awhile, you know that is possible. Or I picture the cat tripping me. Or slipping in the shower. I just don't want to fall. And for some reason, I fear it. I guess because not only do I have those bone worries, I know how much I hurt all over muscle wise when I fall. The last fall I had (in July, on the beach) set me up for a horrible fibro flare.

I am also frustrated because despite all the meds...new stuff keeps popping up. At least it might be new stuff. It might be plain ol RA. I have been having trouble with my ankle having pain. In general, it just hurts. When I step on it, it shoots pain up the inside of my ankle and then into my leg. But the bottom of my foot hurts too..mainly the heel but if I stay on it, the rest of it starts hurting. The NP said brace or wrap it, ice if I could tolerate it, heat, elevation. All the standard at home things. Rheumy confirmed those things and said that it might be RA or tarsal tunnel (my guess from research) or plantar fasciitis. Now..the at home things are good for all three of those. If those don't work..next would be a cortisone shot. That doesn't scare me in the least. I get 8 shots a week either from hubby or myself. The only thing is where the needle goes depends on which issue it is. RA would be intra-articular, tarsal tunnel would be near or on the tendon I think, and plantar fasciitis would be in the bottom of my foot. I really don't care where the shot goes. I just want relief.

I finally asked a question at my last visits to both the NP and the rheumy. I asked "do you see me going back to work?" The NP said it's too early to tell. The rheumy looked at me, looked away and then back at me and said he did not see me returning to work. He also said he'd sign what was needed for SSDI. So need to get working on that. It's going to be a long fight I think despite multiple diseases/syndromes. My age is against me. But even though most people would be almost crushed to hear those words, I'm ok with it. I felt that trying to find a job would be unfair to my family as well as make me worse healthwise. And plus, who is going to hire someone who is unpredicatble time wise due to health. I can't always guarantee I can work at a specific time. I'm slower than all get out it seems. I need more than the normal number of breaks to stretch which means I'm not so productive. If I deal with customers, well no matter how good a mood I might be in, if I'm fighting pain, I sound angry. So that's not good for customer service. Then there are the fog days where I don't process things normally in a mental way. Those days, I'm forgetful. I repeat myself constantly and even when I know I've done so, and am trying not to, my mind is stuck almost on what I repeated. Did that once to Gar on the phone..said the same thing at least 4 times back to back. On good days, those things aren't so bad...and I hate that I can't predict the good days to be able to schedule a job. But no one will hire me given those things.

Some days just getting out of bed is all I can manage. I may not accomplish much else that day. Reading maybe, but likely reading something I've read repeatedly so that if I miss something it's not confusing. 10 minutes of anything is about my limit before I have to move. Sit 10 min...get up and walk around a bit. Or I get too stiff.

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