Guest guest Posted August 11, 2002 Report Share Posted August 11, 2002 Blue, you are a Blessing. The way you joke around is great when you're feeling so miserable. Take care and know that you are in my Prayers. Your symtoms sound so familiar???? Love, Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2002 Report Share Posted August 11, 2002 Gee, thanks for all the infor, Blue! Sounds as if you have a lot going on and I understand your frustration at not knowing exactly what it all means. I went through a long, long time of the same nonsense. The good part of all this is that I can see it hasn't detracted from your sense of humor! That's important...at least to my way of thinking. You say that you live in western Oregon.....so do Glenda and I. I live in Eugene and have for nearly 36 years. Love it here! Take care and keep posting! Love, squeek --- bluewhite97071 wrote: > Sharon King and others. I have already posted this > message on > to another group but think you don't 'cause you're > all so nosey! > Remember, I told you I'm shy? RIGHT! > .................................................................................\ .................................. > > Some of you asked for this info but I didn't plan to > go into it. I > have no positive diagnosis of RP yet. However, I > feel comfortable > letting you know me a bit better. > > Then, for now... my name is just blue, `cause I'm > blue, sad, and > all that. Maybe you can tell by now I AM, however, > certainly NOT > bashful. But I am completely frustrated and looking > for some > validation for the way I feel. > > I have been sick with " THIS " since 1995. Dx of IBS, > Fibro, > Arthritis, some sort of Autoimmune... whatever! > Won't go into the > aches and pain that go with all of these. Tested > negative for > Rheumatoid factor, ANA, ACE, and ANCA. > > Have been Hypertensive since 26. Have > had...sand-like Kidney > stones, Endo, Pericarditis, Bronchitis many times, > Allergic > reactions to meds, Laryngitis several times a year. > Etc........ > > But, in the last 2+ years things have changed. My > pain is > different. More like electric shocks, cramping in my > legs. > Weakness and ache in my arms and pressure first > behind my > left ear. (now in both ears.)They only get red and > hot when I > sleep on them. > > My eye problems started with a " optical migraine. " I > was in a > brightly lit grocery store and I couldn't see the > labels. Like there > were shadows on things. Then I couldn't see much at > all. It > lasted less than an hour and happened only twice. > After that I > had a summer of dizziness and " optical apparitions " > (my doc > called it that) I didn't exactly " ...see dead > people! " But things > close to my face appeared like " ghost " images on > TV...lines and > shadows around things, especially stuff that moved > quickly in > front of my eyes. This happened only each morning, > in bright > light. I was dx with low pressure Glaucoma in my > left eye. (now > both eyes.) Optic nerve damage, not much pain though > but dry > eye and redness. I have had a " twitch that > comes-and-goes in > the left eye lid for several years, > > My nose has been: running or " crusty " green (big > time!) My nose > seems to be GROWING ...no lie!!! (get it?) One doc > sees a sepal > perforation, one doesn't (?) I cough a lot a night. > Sleeping siting > up helps. I cough when I bend over and have trouble > swallowing > (pills especially.) I can see a yellow lesion in > the back of my > mouth. There are " dents " in both cheeks! (?I have an > idea my > parotid glands have been removed by aliens? ha! ha!) > > > The SKIN THING... > Started with a few " spider " veins on my arms. then a > light spot on > my middle finger, left hand. Now much larger > pink/white scar-like > marks on left hand and arm and and a few smaller > spots on the > other arm legs and neck, chest etc. I am a very fair > skinned > Caucasian with dark hair and dark blue eyes. I stay > out of the > sun. It's not hard, I live in western Oregon! The > surface of the > skin doesn't hurt, but it hurts deep down (muscle? > bone?) > " Puffiness " (edema?) hands, arms, legs feet. " ...and > the beat > goes on. " > > Now you know why I didn't go into it before. I joke > a lot about this > stuff, but I crave support and understanding from > those who > know it could be dead serious stuff. I'm less and > less willing to > " ...wait and see! " > > THAT'S ALL FOLKS (not!)... TO BE CONTINUED... > > blue > > > ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2002 Report Share Posted August 11, 2002 In a message dated 08/11/2002 12:53:20 PM Central Daylight Time, Rpolychondritis writes: Now you know why I didn't go into it before. I joke a lot about this stuff, but I crave support and understanding from those who know it could be dead serious stuff. I'm less and less willing to "...wait and see!" Blue, Ohmygosh! I didn't realize I was holding my breath while reading your post until I had finished. You poor girl! (I say "girl" because most men wouldn't share so much about themselves.) First, don't feel like you ever have to tell us your name. We use full names, first names, nick names, email addys, just whatever feels comfortable for you. What kind of doctors have you seen? What has been their diagnoses? I hope you have gone to our web site and read up on RP to see if perhaps you fit into this category. Although I'm not certain there is a "fit." We all seem to have different symptoms.... and different drugs that work, somewhat, for us. Ask all the questions you want of this group. Fortunately, I have been a part of the group for several years, and I can honestly say I have gotten most of my information from these wonderful people.....not the doctors. That's sad because we would expect our doctors to have the answers, but these people have LIVED this rare disease. If you have researched RP, you know it takes a TEAM of doctors to handle all phases of RP. We welcome you with open arms, so please don't hesitate to jump right in with questions, problems, emotions, venting, etc. As Heidi says this support group is for the WHOLE person, not just the RP part of the person. (She says it better, but you get the gist of what I mean, I hope.) Oh and by the way, yes, we are nosey but it's only because we care. Take care. Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2002 Report Share Posted August 11, 2002 Blue Thanks for posting your info with us. We really do care! It sounds like you have a lot of stuff going on at the same time. There is a lady in the group who lives in Portland and she goes to the Oregon Medical Hospital for care. Also goes to Dr. Buckner in Seattle. Have you tried either of these places. Dr. Buckner specializes with RP. If you would like I will post the lady in Portland and find out who she goes to? Take care and don't give up hope. At least you have a sense of humor which always helps with darn cRaP! There are a lot of people in the group who have joined without a confirmed diagnoses and we help everyone not just RP's. Please don't feel you shouldn't post because that is how we all learn. Lots of love Glenda Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.