Guest guest Posted August 10, 2002 Report Share Posted August 10, 2002 I know exactly what you mean! It is hard when you KNOW something is wrong, but no one can find out what it is. Take care! Love, squeek (At last we know something about you....you have a pink nose!) --- bluewhite97071 wrote: > Visiting this site was well worth the effort. > > Being sick and looking well is sometimes hard. > > After 7+ years with a dx of Fibro, Would I " welcome " > a dx of RP? > Certainly NO! But I could almost see myself: > holding up my > aching head with pride; sticking my pink nose in the > air; and > telling the world---I told you so! > > blue > > ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2002 Report Share Posted August 10, 2002 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 12, 2002 Report Share Posted August 12, 2002 LOL I love you Blue! You make my day! I think we would get along fine. I like your description of your self. I have been told a little dab will do you, about myself! I can't help it...just take life as it comes and have to have fun doing it even if it isn't a lot of fun! Yes this is the one and only Glenda of the group. I live in Springfield and Squeek lives in Eugene. We have gotten to meet Dagny once since we all joined the group. Of course we all didn't join at the same time but were able to have a get together last summer. Gish has it been that long???? Maybe you can join us when we get together in Salem. Don't have to but if you would like that would be fun too. What is the saying the more the merrier! ) Sounds like you are as shy as I am!LOL I know what you mean about the insurance thing. It is the pits. It is like they control you no matter what you do anymore. I was just trying to give you options so maybe if you do get a dx your dr. might refer you. Take care! Lots of love Glenda(eyeoreluv) GlendaThere is more than one Glenda in the group, right? (Can't find the e-mail Re: to Glenda I wrote a few days ago) You're from Oregon too I think.I live close to Portland but closer to Salem. We moved to Woodburn from Portland 2 years ago last May. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2002 Report Share Posted August 16, 2002 --- bluewhite97071 wrote: > Or-e-gen Folks, > > Had a good day Tuesday (in Salem, Or-e-gen) at the > " shrinkS. " > Yes, I have two! and probably need more! I guess > maybe I have a > split personality??? cRaP (I love that) will do that > to you and I > don't even have a positive dx yet! Anyway, we > laughed... we cried > .. we upped my Zoloft by 50%! > > Then my husband and I ate our faces off at OLD > COUNTRY > BUFFET (in Salem, Or-e-gen) It's on Lancaster and > Center NE. > Should you ever want to do the same!!! It is the > place, I call it food > heaven and/or food hell. I'm not sure??? Food > everywhere, lots > of fat people, old people and " gimps " (*) so you > feel at home. It's > a very good excuse to go see Salem! > > Keep it secret from the WORLD RPs. Don't let anyone > know... > > blue, the Or-e-gen WHISPERER > > (*) words used lovingly w/respect. > Well, Blue, since you know where food heaven is maybe you can direct myself, Glenda, and Dagny there....of course you too! Glad you had such a great time with your shrinks! Have a great weekend. Love, squeek ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2002 Report Share Posted August 16, 2002 > > Keep it secret from the WORLD RPs. Don't let anyone > > know... > > > > blue, the Or-e-gen WHISPERER > > ............................................ > Well, Blue, since you know where food heaven is maybe > you can direct myself, Glenda, and Dagny there....of > course you too! Glad you had such a great time with > your shrinks! Have a great weekend. Love, squeek ............................................ Glenda has an e-mail from blue... for you two too blue who? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2002 Report Share Posted August 17, 2002 >> > I was SO fat BEFORE Zoloft, that I begged to take > it so I would > have an excuse! and YES YES YES YES YES YES YES YES > YES! > I've been caught with my pants > down!!!!!!!! > > blue, to you > > blue > Now here's an interesting visual...a fat lady with her pants down!!! For shame! HA!!! Love, squeek ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2002 Report Share Posted August 21, 2002 wrote: " Oh, no, this poor girl has so many medical problems. " No , I don't have all that many medical problems. What I have is a single puzzle with plenty of putrid piles of pieces, pain, pills and physician procrastinations. With each new symptom, I feel as if I take one step forward and two steps back! This is the diagnosis dance. When the signs aren't matched up, there's no diagnosis, no real treatment and no progress. You're in limbo. " ... how low can you go?'' The diagnosis dance reminds of an old song called: Ball in the Jack First you put your two knees close up tight. You swing `em to the left and you swing `em to the right. You step around the floor kind of nice and light. Then you _ around and _ around with all your might! You spread your love'n arms way out in space. Then you do the eagle rock with style and grace. Put your left foot out and bring it back. That's what I call, ball in the jack! All that " Jack'n " around ain't no fun alone! If I'm to " partner " with RP, I will embrace it! Then we'll see who's balls get jacked! When you know what it is ... maybe you can start to kick it's ass!!! I've heard that often depression is anger turned inward. When I get a chance, I let it out, big time! Enough of my dark side! , I want you to know I look forward to your posts too. It's wonderful to have the opportunity to read all the messages on the board. Each one is important. I'm learning how you guys manage with the cRaP diagnosis cope with side effects of meds and all. I like the way you encourage each other to stand up for your rights, refusing certain procedures and insisting on others, etc. I'm thankful for all the information and help I have received. * I like to write to this group and feel appreciated already. Thanks for all the comments. I'm glad to add a smile to someone's day. yours true, blue * and if it turns out that I don't have RP and get the boot from the group. the ass kicking will resume! : ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2002 Report Share Posted August 21, 2002 --- bluewhite97071 wrote: >>> > > > > > > I like to write to this group and feel appreciated > already. Thanks > for all the comments. I'm glad to add a smile to > someone's day. > > yours true, blue > > * and if it turns out that I don't have RP and get > the boot from the > group. the ass kicking will resume! : ) > > Oh, no, you don't get out that easily! Even if you don't have RP you are still part of the group!!!! Also this group appreciates you!! Love Liz __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2002 Report Share Posted August 21, 2002 What if I have bad germs and stuff like a " normal? " What if I have to be a different kind of " gimp? " Will you still like me if my nose doesn't run?!!!!!!!!!!!!!! boo hoo! blue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2002 Report Share Posted August 23, 2002 Blue Well today its time to see sunshine and roses, smile a little smile, stop thinking the grass is greener on the otherside(been to dry for green grass anyway), look on the brite side, don't worry, be happy, there's a lite at the end of the tunnel. Hummmmmmmmmmmmm lets see what other nonsese can I write, well now I know I'm tired, took me 3 try's to write, write,right, wright, see what i mean. Smile someone in WV cares so don't be bashful or blue. There is life after cRaP love ya dawn bluewhite97071 wrote: --- In Rpolychondritis@y..., Dawn one of the things she wrote was:'... Blue please keep up the post, i absolutely love to hear from you, its always interesting.dawnThanks for including me in your post. It is hard to keep up. There are a lot of posts that have to go w/o a immediate reply these days. I enjoy writing although, like many of you, I don't always feel like it Once I get going I sometime get carried away. Occasionally, something good comes out. Posting to the boards is so rewarding because of the feed back. Thanks again.today I'm extra, blue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2002 Report Share Posted August 23, 2002 > Talked to my sister, she was having a rough day so we both cried on > the phone and resolved that tomorrow would be a better day. > > You take care and I hope tomorrow is better for you too. > Love, Marilyn I cry with you hope it's better for you too! blue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2002 Report Share Posted August 23, 2002 > only got dog food, but he had to have Monterey Jack Cheese about 4 times every day in order to get his pills down. Maybe that's why he farted so bad. Marilyn I think CHEESE will do it too! I was born ('n aged ) in Wisconsin. I was a " Cheese Head " before... Bret Farb Monday Night Football The Superbowl and before time Is this true? blue P.S. RP sucks! (to stay on subject) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2002 Report Share Posted August 29, 2002 Hi Blue; Thanks for the poem. It really cheered me up. As for your other poems, you are a real riot. I really enjoyed them. Keep up the good work, you keep us laughing. Luv ya, Susiecue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2002 Report Share Posted September 14, 2002 Got me! and so Quick! Who writes your " shtick " ? PS looked it up too! want to spell it right for you! blue ________________________________________________ shtick PRONUNCIATION: AUDIO: shtk KEY VARIANT FORMS: also schtick shtik NOUN: Slang 1. A characteristic attribute, talent, or trait that is helpful in securing recognition or attention: waiters in tropical attire are part of the restaurant's shtick. 2. An entertainment routine or gimmick. ETYMOLOGY: Yiddish shtik, piece, routine, from Middle High German stücke, piece, from Old High German stukki, crust, fragment. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2002 Report Share Posted September 16, 2002 " Ability will never catch up with the demand for it. " --Malcolm S. Forbes " Dem that writes, do. Dem that don't quotes! " --blue 09/16/02 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2002 Report Share Posted September 22, 2002 Blue, Good to see you posting again. I was wondering if you had gotten sick on us. Was going to start the worry thing again!LOL Take care Lots of love Glenda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2002 Report Share Posted September 22, 2002 In a message dated 9/22/02 6:27:15 PM Pacific Daylight Time, kwhite@... writes: << He knows my heart has never been great Says he's interested in the heart involvment too! I would like to get the informatiom you have? That's the reason that I am rhyming to you! >> Blue, do you need info on the heart? If you do, I will get the info that I sent my cardiologist. I'm in the process of writing to the surgeon who did my surgery to see if he will write a paper on what he actually saw when he had my heart in his hands. LOL He said it was not normal damage to a valve, it was DEFINATELY destroyed by RP. Let me know if you need anything. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2002 Report Share Posted September 22, 2002 > Blue, > Good to see you posting again. I was wondering if you had gotten sick on us. Was going to start the worry thing again!LOL > Take care > Lots of love > Glenda Worry all you want! Arn't we all sick? So I'm sick! What are you guys going to do about it? Pick me up and take me to lunch? blue P.S. If comes to lunch in Or-e-gen she get's to order the blue plate special SLUG SANDWICH! She goes back on the plane! And she can enjoy her lunch on the way! Get Well! Then fly, eat, laugh, wet your pants! anything shewants. I'm right! Have a PB+J in front of the " putter " and call it LUNCH! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2002 Report Share Posted September 23, 2002 <Blue, do you need info on the heart? If you do, I will get the info that I sent my cardiologist. I'm in the process of writing to the surgeon who did my surgery to see if he will write a paper on what he actually saw when he had my heart in his hands. LOL He said it was not normal damage to a valve, t was DEFINATELY destroyed by RP. Let me know if you need anything. > hugs > > My Reply................ Have followed your posts for a time now.(I bet you're waiting for a rhyme now?) I'll take it easy on my self and put the rhyming on the shelf! Think I need a rest! That's what I do best! Back to your heart " thing, " May I ask? What actually went wrong and your symptoms/signs etc.. I'm concerned because I've had troubles all my life with heart " something " that never gets treated, comes back in another form or ? You know the story. Always trouble with fevers,infections; High Bp since I was 26! Paricarditis in '77; Cardiogram always messed up; Murmur comes and goes, Been on Beta Blockers for several years now and it does control my BP! Great but hard to take (slows heart down = heart doesn't work so hard = body doesn't work so well!) I said all that to say Yes! Thank You! I say all the time it's easier to rhyme! blue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 Lu use to do it all the time. Now she says she can't think of a single rhyme? See, it's easier than it seems! Soon she'll be rhyming in her dreams! ©blue/02 ............................................................... Oh Blue you are so good at this! lol I just love it. Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 > GEE Blue where did you learn to rhyme like that? I use to do that all the time, now I can't think of a single rhyme. lol > Lu Lu use to do it all the time. Now she says she can't think of a single rhyme? See, it's easier than it seems! Soon she'll be rhyming in her dreams! ©blue/02 ............................................................... blue's husband says to tell you she learned it in state prison! It was rhyme or die! blue says that rhyming is just in her jeans(genes) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2002 Report Share Posted October 29, 2002 Blue, you know you have us worried.. We haven't heard much from you. I hope all is well and you know we want updates... Not just on your double chins. We all have those. But I guess you donated yours first so you win. LOL Know I'm thinking of you often. I'm still working on my rhyming. lOL Not doing too well. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2002 Report Share Posted October 29, 2002 Thanks for the reply! You'll hear from me by-and-by! Been working on some stuff! Just can not get enough! I write and write and write! I write most all the night! And then I do some more! And then I'm out the door! ©blue/02 I do read most of the posts everyday. I had to go off the daily digest because it messes up my mail box when I get large digests, clogged with repeated copies of old digests. Perhaps I mentioned before that I'm a MAC USER! We think different! I spend a lot of time on my iMac and I try to keep a " clean ship " so-to-speak. Also, I have been working on some web sites. One is a group for my kids and granddads. Another is for blue's stuff. Did I mention that I have been working freelance since 1965? White Productions. That's me! There are few careers where you can make a living in your PJs! blue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2002 Report Share Posted October 29, 2002 > Blue, you have my kind of job.!! I LOVE PJ's ... Keep up the good work. Do you have site you can share with us? Would love to see it. > ............................................................................= ......... JOB? WORK? Never! I earn my way by being cleaver! I went to school It did no good! I don't do stuff " the way you should! " I'm not a " Beat " I'm not a " Hippy " If you ask me... I'm just dippy! I sit back .... " do my thing " Maybe? I'll earn my chance To catch " the ring! " ©blue/02 ......................................................................... blue's site = SOON! Not promoting here, nor will I. White_Productions group, WhiteHouseHome = restricted to family members by invitation. Right now my son Larry is running a poll on the group: " Is our MOM really insane? " So you see, it's not for public viewing! White_Productions home site = under construction as we speak. Quote Link to comment Share on other sites More sharing options...
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