I'm really sorry to be a Johnny-One-Note. But my life has turned into a merry-go-round of flares and infections and steroids interspersed with brief periods of "regular" pain and fatigue. Sometimes I hear of people who have RA and who have maintained regular work schedules into their 50's. All I can say is that their experience of their illness has got to be a lot different than mine. Because I would not make it through one shift of ANY job. I'm not a whiner or someone who is really thrown for a loop by pain. Last October following my second foot surgery, I had broken some stitches and the surgeon had to stitch me back up. She asked me if I wanted a shot of anesthesia and I said "For a stitch or two? No, I'll be okay." Well she did 4 stitches. I have a feeling that this was a test of my degree of pain tolerance and by that maybe she could gauge somewhat that when i tell her the pain in my feet is unbearable, then maybe she knows I'm no wuss!
So here I am back with a flare. It came on suddenly, like a stack of bricks falling from a scaffold above me and landing on me! The good news is that I've lost weight because of not being able to walk to the kitchen. In my last flare I lost 15 lbs and this time, so far, 5-7. But of course now I"m on steroids so we shall see. Really, the worst of the constant need to eat is with IV steroids. My daughter was here this weekend and she stocked my room up with what she could find of nonperishable foods (and some grapes). I'm finding I have really no appetite and this has been flare or no flare. Not sure why, but I am kind of happy about it.
I would really like to go to Prayer meeting on Wednesday. But I don't know if I can swing it....especially if my ride shows up again in his "monster truck" that I have to climb a step stool to get into! It's the getting out that is hard as I land HARD on my feet and that just doubles me over.
At the prayer meeting last night they encouraged me to "Speak Life" and not to "own the illness or symptoms" While I see what they are saying I kind of have a problem with it. I deal with constant symptoms and I am somehow supposed to get around that? It can't be right to "suffer in silence"can it? Maybe that would make other people more comfortable but for me, it would be difficult. It would also be a form of deception. I need to have this clarified to me. One thing that would probably be more comfortable for friends and acquaintances, is if I would not talk about it. But the thing is that I never just up and start talking about it (except maybe on FB - and I'm working on not reporting things there). Normally people ask ME about my illness and how I am faring. And I honestly do try not to go on a long involved response and I am never really sure if they want to know or if they are being polite.
One thing I have done wrongly is to talk about the doctor's initial and unofficial diagnosis of Parkinson's Syndrome or Disease. Probably it would have been better for me to keep my mouth shut about that until I knew for sure. So I apologize for that somewhat panic-stricken post about that. And I can see how that was "speaking death" because I do not know for sure what is true.
I will try to be more mindful about the amount of time I spend talking or writing about my illnesses. This blog was meant to be a chronicle of my life and the things that challenge me: such as schizophrenia, RA, and PsA and chronic pain. I want to educate people about these things and also be a support to readers who suffer similarly. I don't think it would be right to clam up here. But I can and will be more positive and encouraging --rather than being a mud pit that I suck everyone down into.
Thank you for your company on this journey. And it is that. A journey. A learning process. So please be patient with me. This is a road I've been walking on and it's the first time I've traveled this way. I'll get there eventually.
So here I am back with a flare. It came on suddenly, like a stack of bricks falling from a scaffold above me and landing on me! The good news is that I've lost weight because of not being able to walk to the kitchen. In my last flare I lost 15 lbs and this time, so far, 5-7. But of course now I"m on steroids so we shall see. Really, the worst of the constant need to eat is with IV steroids. My daughter was here this weekend and she stocked my room up with what she could find of nonperishable foods (and some grapes). I'm finding I have really no appetite and this has been flare or no flare. Not sure why, but I am kind of happy about it.
I would really like to go to Prayer meeting on Wednesday. But I don't know if I can swing it....especially if my ride shows up again in his "monster truck" that I have to climb a step stool to get into! It's the getting out that is hard as I land HARD on my feet and that just doubles me over.
At the prayer meeting last night they encouraged me to "Speak Life" and not to "own the illness or symptoms" While I see what they are saying I kind of have a problem with it. I deal with constant symptoms and I am somehow supposed to get around that? It can't be right to "suffer in silence"can it? Maybe that would make other people more comfortable but for me, it would be difficult. It would also be a form of deception. I need to have this clarified to me. One thing that would probably be more comfortable for friends and acquaintances, is if I would not talk about it. But the thing is that I never just up and start talking about it (except maybe on FB - and I'm working on not reporting things there). Normally people ask ME about my illness and how I am faring. And I honestly do try not to go on a long involved response and I am never really sure if they want to know or if they are being polite.
One thing I have done wrongly is to talk about the doctor's initial and unofficial diagnosis of Parkinson's Syndrome or Disease. Probably it would have been better for me to keep my mouth shut about that until I knew for sure. So I apologize for that somewhat panic-stricken post about that. And I can see how that was "speaking death" because I do not know for sure what is true.
I will try to be more mindful about the amount of time I spend talking or writing about my illnesses. This blog was meant to be a chronicle of my life and the things that challenge me: such as schizophrenia, RA, and PsA and chronic pain. I want to educate people about these things and also be a support to readers who suffer similarly. I don't think it would be right to clam up here. But I can and will be more positive and encouraging --rather than being a mud pit that I suck everyone down into.
Thank you for your company on this journey. And it is that. A journey. A learning process. So please be patient with me. This is a road I've been walking on and it's the first time I've traveled this way. I'll get there eventually.
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