Guest guest Posted August 7, 2001 Report Share Posted August 7, 2001 In a message dated 8/7/01 9:40:20 PM Pacific Daylight Time, hiacynth1@... writes: << During my down days or hour/minutes, I go into the bathroom and cry my heart ou >> , I think we all go through these ups and downs.. It's a normal process... a grieving process is the way I look at it... Anger, depression, guilt, etc. I don't know what I would have done without this group... It is so good to vent to someone and get some input... They make you laugh, cry and there are over 200 shoulders to lean on... Yes I think it can be as hard on the family members as it is on us and sometimes harder... They feel so helpless... I lost my mom 2 years ago and I miss her something terrible, but I am so glad she isn't here to see what we go through. She was a worrier......(glad I didn't inherit that...NOT) LOL It hurts me to see Rich hurting because of me or my girls worrying... They are too young to have to worry about me.... I'm still worrying about them!!! I too have totally changed in my appearance and it does cause pain when someone says " Gee,.... I didn't even recognise you " . I don't even recognise myself. LOL But I am blessed with a wonderful family and friends and this group... What more could I ask for... I am doing really well right now with the Rp and count my blessings daily.. I will just take one day at a time and if I have a bad one... for me it is just best to go with it...If I need to cry I do, if I need to sleep I do.. etc.. I am on disability, but I didn't go out for RP... I miss work terribly.. I truly loved my job... But I do find lots to fill the space ( NOt ironing Heidi, I save that for you). LOL Glad to see that you are posting and getting your feelings out.. It really helps alot... If I do get over your way, I will let you know... We have alot of friends still in San Leandro... And I'll take you up on that donut...Ummmm... hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2001 Report Share Posted August 7, 2001 In a message dated 8/7/01 9:40:20 PM Pacific Daylight Time, hiacynth1@... writes: << I wish I could attend the chat (what time is it, Pacific?) but I work. >> our chat times are on Wed at 9:30am (pacific) and on Fridays at 6:30pm at http://clubs.yahoo.com/clubs/relapsingpolychondritis Also if you are ever on line and just want to chat... Post that you will be in the chat room at ? time and I'm sure someone will show up... We are a real bunch of talker. LOL hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2001 Report Share Posted August 7, 2001 Hello everyone, I didn't know that I sound " happy " in my emails. I try to be positive, because I don't want to put myself in a dark corner...I many never come out. My drs have been calling me a " good sport " all along, but lately I've been tearing up big time in their offices. I think it's time for me to see a therapist who specializes on chronic diseases. I do have my up days and down days. During my down days, I usually try to keep the socializing down to minimum. Since I've gotten fat from the high doses of prednisone, I've been avoiding social events. The trip to Ireland was something I was looking forward to, even though it was social. I have another wedding to go to, locally, in September but I think I may end up nlot going and " feeling sick " if I'm still as fat as I am. I haven't seen these people in over a year, so they will be shocked to see me in this state! Call me vain, but I feel I don't have much dignity now. During my down days or hour/minutes, I go into the bathroom and cry my heart out and damn God because he/she let this happen to me. I also wonder why my late father, who I was hoping he'd be my guardian angel, isn't helping me manage this disease. But maybe he's helping? The shortness of breath episode at the dr's office last week probably helped me, because I would have had a terrible time in Ireland. A blessing in disquise. As it stands, I have a pulmonary lab appt, chest x-ray and appt. with a pulmonologist this Thursday, so maybe I'll get the help I need for by breathing problems. Signs, guardian angels, etc... my husband hates to hear about these things and calls them superstitions, but to me, they're something, even though I'm not a nut about it. I wish I could attend the chat (what time is it, Pacific?) but I work. By the way, how many of you work? When I went to my PCP last week, he mentioned the D-word (disability). You know, I never even thought about it. I try to stay active as much as I can and I guess the thought of being on disability is the same like " giving up " to me. (Sorry if you're on disability....no insult intended. This is just for me.) It was really difficult to go to the DMV to get an application form for a handicapped placard, but I did it and now I look forward to getting the placard. I check out pkg lots for the blue spots, thinking that this is really going to be a saviour for me. I hope I don't have to go on disability, at least for a long time. Oh, and my family is having a hard time of it because they can't see me (they're in a diff. state) but they hear me, and I don't sound so well to them, all raspy/hoarse, pausing in between breaths). My mother wants to fly up here, but I tell her she won't have anything to do since I'm not bedridden. My aunt says my mother sometimes can't sleep or cries because she thinks of me. Sometimes I think I shouldn't tell her what's going on with me because it will only make her feel worse. --- Rpolychondritis wrote: > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2001 Report Share Posted August 8, 2001 Hi , Lucy here, it is really amazing at how your post sounds so much like me it is scary. I, too, say that my Daddy is my guardian angel. He passed away in 1989 and I have had just about everything he had. He had just been diagnosed with Diabetes just after his stroke, he had Sleep Apnea, Osterarthritis in his knees mostly, and there is no telling what else he had that I now have that we just did not know about. I am no longer on Prednisone, I take 50 MG of Dapsone daily for my RP. I am taking Vioxx but am getting off of it since it is causing me some problems with levels of uric acid, causing kidney functions to be off. I can take aleve for pain instead. Email me sometime. L10@... Love and Prayers, Lucy Re: Digest Number 1896 > Hello everyone, > > I didn't know that I sound " happy " in my emails. > I try to be positive, because I don't want to put > myself in a dark corner...I many never come out. > My drs have been calling me a " good sport " all > along, but lately I've been tearing up big time > in their offices. I think it's time for me to see > a therapist who specializes on chronic diseases. > > I do have my up days and down days. During my > down days, I usually try to keep the socializing > down to minimum. Since I've gotten fat from the > high doses of prednisone, I've been avoiding > social events. The trip to Ireland was something > I was looking forward to, even though it was > social. I have another wedding to go to, locally, > in September but I think I may end up nlot going > and " feeling sick " if I'm still as fat as I am. I > haven't seen these people in over a year, so they > will be shocked to see me in this state! Call me > vain, but I feel I don't have much dignity now. > > During my down days or hour/minutes, I go into > the bathroom and cry my heart out and damn God > because he/she let this happen to me. I also > wonder why my late father, who I was hoping he'd > be my guardian angel, isn't helping me manage > this disease. But maybe he's helping? The > shortness of breath episode at the dr's office > last week probably helped me, because I would > have had a terrible time in Ireland. A blessing > in disquise. As it stands, I have a pulmonary > lab appt, chest x-ray and appt. with a > pulmonologist this Thursday, so maybe I'll get > the help I need for by breathing problems. > > Signs, guardian angels, etc... my husband hates > to hear about these things and calls them > superstitions, but to me, they're something, even > though I'm not a nut about it. > > I wish I could attend the chat (what time is it, > Pacific?) but I work. > > By the way, how many of you work? When I went to > my PCP last week, he mentioned the D-word > (disability). You know, I never even thought > about it. I try to stay active as much as I can > and I guess the thought of being on disability is > the same like " giving up " to me. (Sorry if you're > on disability....no insult intended. This is just > for me.) It was really difficult to go to the DMV > to get an application form for a handicapped > placard, but I did it and now I look forward to > getting the placard. I check out pkg lots for the > blue spots, thinking that this is really going to > be a saviour for me. I hope I don't have to go on > disability, at least for a long time. > > Oh, and my family is having a hard time of it > because they can't see me (they're in a diff. > state) but they hear me, and I don't sound so > well to them, all raspy/hoarse, pausing in > between breaths). My mother wants to fly up here, > but I tell her she won't have anything to do > since I'm not bedridden. My aunt says my mother > sometimes can't sleep or cries because she thinks > of me. Sometimes I think I shouldn't tell her > what's going on with me because it will only make > her feel worse. > > > > --- Rpolychondritis wrote: > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2001 Report Share Posted August 8, 2001 In a message dated 8/8/01 9:24:41 AM Pacific Daylight Time, jasidan@... writes: << everytime I go in a plane I get sick when I get back home, and that usually means 4 months of flares. >> le, we have had alot of reports from people on flying... Some say to try not to be on a plane for over 2-3 hours at time ( pretty hard when going to England. LOL ) some wear masks, and have heard that some drs. recommend a course of anitibiotics before an during the flight... Hope some members reply, because I can't rememeber for sure... I am taking antibiotics while flying to okieland. Have an aisle seat so I can get up an walk every so often.. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2001 Report Share Posted August 8, 2001 Hi , When I said you sounded " happy " it was for wont of a better word. To me, you first email seemed like you were desperate to talk to someone who would understand, and I think when you realized that the group really does support and try to help you, it helped your spirit. I know it did this for me. I was so down when I wrote my first post, but I couldn't help but feel soooo much better when I got a reply, and felt so much support. I know about the crying thing, my friends will tell you I am a very controlled person, who does not show her feelings. It's crazy, I now cry at movies.. so I have decided to only watch action movies now! LOL I keep thinking of visiting my parents, I haven't told them, but am so worried I will have a flare while I am there, they live in England, and it will be a whole day of planes to just get there, then I have to drive for 8 hrs, and it is really strange, everytime I go in a plane I get sick when I get back home, and that usually means 4 months of flares. I have noticed that people don't understand rp at all, I have sworn my husband to secrecy, and here is the only place I really talk about rp, except my best-friend. My hubby really pushed me for him to tell his cousin, and her comment was.. " that isn't that bad, what are you so worried about? " . I nearly slapped her, luckily she lives in another state. I had the pulmonary breathing tests done, they put you in this booth, and you have to breath in this tube. I had a very strange lady who did the test, she wanted to know what I had, so I told her rp. So she started telling me about eating ginger as it helps nausea, and how I should be pickling it and eating it raw. Then she started telling me don't believe the doctors get my " butt " on the net and start figuring it out. I felt about 5 yrs old!! She was actually hysterical!! I hadn't laughed so hard in ages, it made doing the tests kinda difficult. le Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2001 Report Share Posted August 8, 2001 I work from home. I'm an arts critic for English publications. I just found out about this disease--I don't know what the future holds--I worry about my mother's capacity to cope with the truth as well, and wonder why my dead father didn't protect me, and dread getting fat frm. steroids, wonder how to keep my dignity if I wind up looking like Quasimodo (floppy ear, saddle nose), am losing my Catholic certitudes (what little I had of them)--and my heart goes out to you, 1896. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2001 Report Share Posted August 8, 2001 In a message dated 8/8/01 6:46:26 PM Pacific Daylight Time, cmz212@... writes: << I work from home. I'm an arts critic for English publications. I just found out about this disease--I don't know what the future holds--I worry about my mother's capacity to cope with the truth as well, and wonder why my dead father didn't protect me, and dread getting fat frm. steroids, wonder how to keep my dignity if I wind up looking like Quasimodo (floppy ear, saddle nose), am losing my Catholic certitudes (what little I had of them)--and my heart goes out to you, 1896. ---- >> Please don't give up hope... RP is not a death sentence... Most of us live pretty normal active lives... Please tell us a little about yourself, your name and what symptoms you or who ever has RP are having... This is a great support group.. You will find lots of information... Please.... hang around and ask all the questions you want... we will give you information and also alot of laughs to cheer you up.. claudia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2001 Report Share Posted August 8, 2001 Dear le and , My diagnosis is fairly new--but in the last two years, I've blown up on every transatlantic flight (work takes me frequently to England). The last time I flew to Europe was February and I came home with wheelchairs either side of flight. Regards, Cristina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2001 Report Share Posted August 9, 2001 Dear , You are not alone....we all have our really down days and even months. I'm on the month thing...therapy may be the way to go or even a group that specializes is pain management. Please try not to feel alone and locked up in the bathroom to cry...cry here. In my family I was always the "up" one, the bond so to speak. Now their thrilled I'm on an antidepressant when they know almost nothing about our disease and when I bring it up they don't want to hear about it. Families normally can't handle it or hover over us. Not sure whats the best thing. Be honest with your family but let them know your handleing it as best you can. I also have gained about 40 pounds on the pred and don't feel real good about myself but...tough shit...plus I had a bout of dermatitis so the arms and legs are scared. I am also very self image conscience. We both need to check into disability. I also have been putting it off but it takes a long time so lets just get at it... There are guardian angels I truthfully believe that but yours might just be on vacation and besides that God does have a plan for us and lets face it, he has the last say... Take care of YOU...Sue Marth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2001 Report Share Posted August 9, 2001 In a message dated 8/9/01 12:21:38 AM Pacific Daylight Time, cmz212@... writes: << My diagnosis is fairly new--but in the last two years, I've blown up on every transatlantic flight (work takes me frequently to England). The last time I flew to Europe was February and I came home with wheelchairs either side of flight. >> , I'm so sorry to hear about this... I do know that some dr reccommend an antibiotic for flights... I don't fly too much, but I KNOW alot of members do.... Hopefully they will have somemore imput on this.. We were once told not to take flights longer than a couple hours at a time, but I think this was changed... Memory lapse. LOL I'm sure you will get lots of input from the group. Hope you have a nice weekend . hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2001 Report Share Posted August 9, 2001 Hi Cristina, It is weird, I don't usually get sick while I am away, it is always 2 weeks to the day I get back home, then wham.. I get a flare that will last for 2 - 4 months. It makes me really not want to travel, and my husband loves to travel. If he hasn't gone somewhere in 6 weeks he gets twitchy. LOL le- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2001 Report Share Posted August 17, 2001 I work from home. I'm an arts critic for English publications. I just found out about this disease--I don't know what the future holds--I worry about my mother's capacity to cope with the truth as well, and wonder why my dead father didn't protect me, and dread getting fat frm. steroids, wonder how to keep my dignity if I wind up looking like Quasimodo (floppy ear, saddle nose), am losing my Catholic certitudes (what little I had of them)--and my heart goes out to you, 1896. what exactly do you do for the arts critic? We might could use your help in some way? If you are willing to help? Lu Quote Link to comment Share on other sites More sharing options...
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