Guest guest Posted March 29, 2002 Report Share Posted March 29, 2002 Ray, I am so, so sorry. I really don¹t what to say other than that. I do understand what it feels like; the never ending cycle of the new diagnoses, a new surprise in the road. I've had my share of them with ReA. I'm just so sorry this is happening to you. I agree with you about acceptance; just because we accept our disease doesn't mean we have to like it one bit, nor does it mean that we can't rail against it. So, no lectures from this corner, my friend. ReA IS an unfair thing to go through. It's a genetic roll of the dice, and ours turned up snake-eyes. The hardest part (for me, at least) of living with ReA is that, unlike most diseases where docs will say, " This this and this will happen to you, in this order " , our disease is sneaky and elusive. We never really know what's coming next, or when, or in what intensity. I hope the best possible for you bud, and of course, all my thoughts and prayers... Robbie in FL, moderator chronic_pain. AS, RS (ReA), FMS, CFS feralelf@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2002 Report Share Posted March 29, 2002 Thanks for the encouragement everyone. One of the nicest side-effects of these diseases is the rapid weight loss that happens with a flare-up. I'm down twenty pounds since Christmas. My all time low for the last 20 years is about 5 pounds away! Perhaps I can get to my " perfect " weight according to the charts...only 20 pounds to go! Sorry, but I don't have to even try to lose the weight with a flare-up, it just melts away. Ray, 52, male, Reactive Arthritis, Sjogrens Syndrome, Fibromyalgia, and now add Advanced Chronic Asthma. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2002 Report Share Posted March 29, 2002 In a message dated 03/27/2002 10:10:17 PM Eastern Standard Time, hrn@... writes: > Today I was blessed (perhaps I should say condemned?) with the news that the > inflammatory processes of Reactive Arthritis and Sjogrens Syndrome have > overwhelmingly added a new organ system to my distressing physical > condition. It's been developing over several years, but I had hoped to > escape the escalation of symptoms for a few more years. No such luck. < > snip> Now the inflammation is affecting my lungs and bronchial passages. Ray: I'm so sorry to hear that this has happened. And, NO, you do not have to like it at all. Thank goodness you have a good doctor and a supportive family [even though your DW might complain some about money]. You just hang in there with us, your family, and your faith. I will have you in my thoughts and prayers. {{{And Angel Wishes}}} Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2002 Report Share Posted March 30, 2002 In a message dated 03/29/2002 3:22:50 PM Eastern Standard Time, hrn@... writes: > Sorry, but I don't have to even try to lose the weight with a flare-up, it > just melts away. > You dog! That is no fair. 'Course what any of us have is not fair either. I wish I could lose some of the weight I've put on as result of medications. Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2002 Report Share Posted April 1, 2002 Ray, As I read your post, I too got upset. As if living with all that chronic pain encompass' isn't enough then we get hit with another wammy! I certainly understand your feelings. When I was on disability for many years due to spinal disease I eventually had to come to terms with feeling like I wasn't carrying my share. The pittance that SSDI gave me was laughable. Then came another roller coaster ride. My husband and I separated and eventually got divorced which meant that I had to go back to work. But doing what?! I had loved my working career until because of pain I had to stop. Who would hire someone like me now? As they say...God doesn't close one door without opening a window. A friend suggested that I become a one on one behavioral teacher for a student at her school. It was only 3 hours a day and very little money but it got my foot in the door. I was able to do this work because there was not a lot of sitting or standing. I was moving around which is best for my back unless I'm in a flare. Gradually this student went into another class and I went with him per his parents demands. They saw the improvements their son was making and insisted I continue with him. To shorten this some I am now teaching in a class for kindergarten age children with a variety of challenges. With good pain care and trying to keep within my physical boundaries I am able to continue to work and it's only a 5 hour day. Some days when the Fibro and Myofascial goes ballistic I am unable to work and my colleagues understand this. Now for another kicker. The state is going after me to pay them back saying I was over the allotted amount of money you are able to make while on disability. We're going to court soon I hope. They waited for 4 years after I went back to work and after I told them how much I made to send me a bill for $1200.00. Any way..... Ray would it be possible for you to tutor children? I know I'm looking for someone right now for my 10 year old for math and I'm having a difficult time finding someone who is also affordable. Just a thought. Kathleen in Calif. Quote Link to comment Share on other sites More sharing options...
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