There are many different kinds of falls-economic, mental, physical & spiritual.I was labeled a "Fall Risk" the first time I went to the hospital for what was eventually diagnosed as Chronic inflammatory demyelinating polyneuropathy, a progressive, auto immune disease.In a few weeks, I went from healthy to being an invalid and eventually almost completely paralyzed. With the help of God, loving family and friends, and modern science, I have begun to recover.
Monday, November 14, 2011
A Simple test
I discoivered a great test to find out if I am being listened to; If the person speaking to me continues to talk after I have told them I agree with them, they have not been listening to me. I asked my new doctor for a percocet refill, he agreed. When I told him my last doctor had wrote a 90 day prescription, he freaked out and began to lecture me on why he refused to do that. I never asked for a 90 day supply, my old doctor gave it to me and being new to the community of prescription narcotics consumers, I thought nothing of it. I certainly don't have a problem with doing it monthly and I told this guy that, but he continued to lecture me about the inapropriateness of asking for a 90 day prescription.
And when all was said and done, he doubled my dosage. What a jack ass.
I've been sick for the last couple of weeks. It happened so slowly that I didn't notice it, but my symptoms started to come back. I began to notice it when started napping more often and longer every day. Then I began to get that weird, tingleing feeling in my legs, just like what I was feeling in March, 2010.
I usually try to make myself a see the glass as half full, but even though it was over three months since my last IVIG, I am disappointed. If I was able to go for six months without IVIG, I could continue backing off the steriods. Once free of them, my diabetes would go away and I probably could also lose the anti-depressants and mood disorder drugs. That would be six less pills a day I would have to take.
Then, I would start to get off the cellcept. Another four pills gone. Plus, I wouldn't break into a cold sweat every time I got a scratch or someone sneezed around me. And I could get tattoos again. There are two I really want-my fall risk bracelet from my stay at Jewish Hospital and Natasha's portrait.
I get frustratated with people who tell me that, hey, at I can walk again (and drive, and toilet myself, etc). Because I still don't feel like me anymore and I miss that. When I went one month, then two months without IVIG, I quit trying to reimagine my new self and started dreaming that I could be my old self.
That didn't work so well.
I feel guilty for indulging myself in wanting what I can't have instead of accepting what I do have. What if today is the last good I have for a while and i spend it sobbing about my rotten luck? Again, I start believing in my magical thinking; believing that I will be punished for my impertinacne. I guess I had forgotten that I have very liuttle control over this stuff.
Anyway, good news, we found a church that we really like anbd we are getting ready to buy a house. Unfortunately, buying house reminds me that Natasha will never see the inside of it and I just want to turn off the lights and go to bed.
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Hi Michael ~ Robin here ~ OUCH !! . . . and then do you feel guilty for feeling guilty ??? . . . guilt, the gift that just keeps on giving. I just wanted to check in to say I keep you in my tho'ts even when things are pretty dark . . . and I was especially thinking of you guys yesterday with it being the first Thanksgiving missing Natasha. No words. Just, that I care.
ReplyDeleteThanks again for checking in with me.
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