| Postits Archives 1 May, 1999 -
March, 2000 Postits Archives 2 March, 2000 - May, 2001 Postits Archives 3 May, 2001 - October, 2001 Postits Archives 4 Oct , 2001 - October, 2002 Postits Archives 5 Oct, 2002 - December, 2002 Postitis Archive 6 Jan, 2003 - March, 2003 Kate's original Postits 1996 - May, 1999 |
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address: jenary@hotmail.com
type: localized (Morphea/linear)
Date: 03/15/03
Time: 11:22 PM
HI I HAVE SCLERODERMA I BELIEVE I HAVE MORPHEA/LINEAR. I HAVE SPOTS ON MY LOWER LEGS AND SOME ON MY ARMS AND ACROSS MY NOSE AND CHEEKS. I ALSO HAVE RAYAUNDS,BUT IN MY FEET. MY LAB RESULTS ARE WEIRD,BECAUSE ITS ALMOST AS IF I HAVE CREST,BUT NO SYMPTONS AS OF YET,OR PROBLEMS WITH MY INTERNAL ORGANS,BUT MY DOCTORS CAN'T TELL ME FOR SURE SO IT'S ALWAYS IN THE BACK OF MY MIND.
address: Caszsalaz@aol.com
type: systemic (diffuse or CREST)
Date: 03/15/03
Time: 01:58 PM
Hi!My is Cassy I am 11yrs old.I have had Scleroderma for 4yrs going on 5 in September.I do not have the exact same Scleroderma as some people in the Scleroderma web page.My Rheaumetalogist is very HAPPY for me.He never thought that I would be doing as good as I am now.I have 4 younger brothers & sisters so I have to be strong.To get through Scleroderma you have to have faith & a good attitude.CASSY
address: hfdtry@adelphia.net
type: systemic (diffuse or CREST)
Date: 03/13/03
Time: 10:41 AM
Hello every one it's Sam again. I had to go back to the hospital last Friday. I had to have colonoscopy done. I have ulcerative colitis. This was not fun for me. I'm just gald they found out why I was bleeding and vomiting again. Does anyone have this with scleroderma please email me. Thanks for reading. Sam
address: KimVargas21@Yahoo.com
type: systemic (diffuse or CREST)
Date: 03/11/03
Time: 06:29 PM
Hi my name is Kim I just recently found out my one of my best friends has scleroderma I hadn't seen her in years, she was diagnosed three in half years ago. It will be four years in August. I'm so scared for her. She has three kids and a husband, Her doctor says she is going to die. Does anyone know what can help her to live longer on this disesase? m Or if any new cures are out there? She is so wonderful and takes care of her family I am haveing a hard time excepting that there is no cure. Please let me hear ffrom anyone on this horrible disease. Please submitt it Scleroderma so i know i can open it. Thank you so much for reading my post it . God Bless, Kim
address: nanalfk@hotmail.com
type: systemic (diffuse or CREST)
Date: 03/10/03
Time: 09:34 PM
HI! My name is Linda I have Lupus. My now 18 year old daughter was told she had Lupus now the specialist says she has Crest Syndrom but has not started treating her.I dont know anything about it and Im really scared she is so beautiful she could be a model. I dont want to loose her can anyone tell me anything about it? What are the symptons ? She has puffy fingers and is tierd alot.If anyone can tell me or send me imformation PLEASE Linda Kennedy 1404 Pine Terrace Winfield Kansas 67156
address: angeleyesz23@yahoo.com
type: localized (Morphea/linear)
Date: 03/09/03
Time: 08:34 PM
hi everyone i really wish someone would write to me to become pen pals or friends -sarah
address: bunnyrabbit@yahoo.com
type: localized (Morphea/linear)
Date: 03/09/03
Time: 12:03 PM
i have had scleroderma for 7 years. i am twelve.when i was 6 i had to get a biopsy.it hurt.i took prednizone and triamcinilon. i would love to hear from anyone who has scleroderma and has some information.
address: tshaw005@maine.rr.com
type: localized (Morphea/linear)
Date: 03/08/03
Time: 08:56 PM
Hi I am actually writing to find out information my dad was diagnosed last year with localized Scleroderma. However we have had a hard time finding a doctor who knows how to treat it. We live in Maine and are willing to travel just about anywhere to get good treatment. We have already traveled to see a doctor in Washington, DC. I am not sure what meds. he is on at this time but it started as a small spot on his arm and has affected his hand and entire arm to the shoulder. However yesterday while at the doctors the said it had moved to his chest not effecting his breathing but the muscles and tendons there. He also had a operation quite a few years ago for a herina and that spot has begun to bother him so they think that my also be realted. This is all on his right side. He has had tests done to check for damage to his lungs and throat and there is none. If somone can please help us out I would appreciate it. Please send me an e-mail Christi tshaw005@maine.rr.com
address: Scheetzie308@hotmail.com
type: systemic (diffuse or CREST)
Date: 03/01/03
Time: 04:49 PM
Hi, my name is Donna..I have had health/emotional problems for quite some time..I do suffer from anxiety/depression/panic disorder since my early 20's..I'm now 49yrs old..Other problems that I have are osteoarthritis, fibro, degenerative disc disease, irritable bowel syndrome, tachacardia,AIH (autoimmune hepatitis), the Raynold's and everything that goes with CREST..I was diagnosed with the AIH in 2001 and ever since then it has been down hill..I finally got a firm diagnosis of CREST about 2months ago..My PCP & my rheumy knew something else was going on, but wasn't quite sure what is was..They were also thinking about the possiblity of Lupus..I have been doing a lot of research on the net, and also reading other's stories, and this has me scared to death..So far, my hands are affected by skin hardening, just recently the back of my neck feels like when you get sunburned, it feels tight and itches..ITCHING is one of my greatest problems right now..They tell me to keep moisturizing and I do, but I still itch..Dr. even prescribed a steroid type of cream, but told me not to use it everyday..My joints and my muscles really give me a lot of problems, but then again, I have the fibro, and the OA..I do have shortness of breath at times, but always wanted to attribute that to the fact that I'm overweight.. I have a husband and soon to be 17yr old son..My husband is very understanding, but have not gone into details yet with my son..I also suffer from fatigue really bad.. My mother lived with us after the death of my father for 5yrs, until she took seriously ill 2yrs ago..She needed 2 very serious surgeries and then was sent to a nursing home..Up until about 2months ago she was really bad, having dementia, not being able to walk too well at all..She keeps asking me if she can't come back home, but she still needs 24/7care and there is no way, I could do it..This also makes me feel guilty & I don't feel I should tell her everything about what CREST/Scleroderma can do to you..Even when I try to explain my fatigue, she just doesn't get it..Anyway, I'm looking for someone to communicate with that has CREST/Scleroderma and can be an email friend, as this is so scary to me..I know I had some of these symptoms for years, but never but it together or thought to go to a dr..But once I was hit with the AIH, then they kept checking me and know see that I do have some real issues here.. If someone decides to email me, please put CREST in the subject line.. Thanks to everyone for listening to me.. Take Care.....God Bless........Donna
address: lirpashowers3@webtv.net
type: systemic (diffuse or CREST)
Date: 02/26/03
Time: 01:55 AM
April again, think I will just live here:-) Does anyone know where I can get a copy of the movie "For Hope"? Amazon doesn't have it, anyone have it or a copy maybe? Thanks! Love and hugs, April
address: GIBSONFLO@AOL.COM
type: systemic (diffuse or CREST)
Date: 02/25/03
Time: 06:39 PM
HEY THERE EVERYONE....I NEVER KNEW SO MANY MORE PEOPLE COULD POSSIBLY BE OUT THERE WITH SCLERODERMA I HAVE RECENTLY STARTED A SUPPORT GROUP HERE IN WINCHESTER KENTUCKY AND I HAVE MET 2 OTHER LADIES THAT EITHER LIVE HERE OR NOT THAT FAR AWAY..I LOVE IT --IT JUST REALLY HELPS TO TALK TO PEOPLE WHO KNOW EXACTLY WHAT YOU ARE GOING THROUGH OR JUST FOR SUPPORT[THAT IS A MAIN THING TO ME].I HAVE MET SO MANY REALLY GOOD FRIENDS ON THE INTERNET AND ONE THING THAT I HAVE DONE IS CREATED A SCRAPBOOK OF ALL OF THE PEOPLE THAT I HAVE MET AND THE THINGS THAT I HAVE BEEN THROUGH SINCE I HAVE BEEN DIAGNOSED 41/2 YRS. AGO.IT REALLY HELPS AND IT HELPS ME NOT TO FEEL SO DEPRESSED EVERYTIME I THINK OF A "CHRONIC ILLNESS".I JUST REMEMBER ALL OF THE REALLY COOL PEOPLE OUT THERE THAT I WOULD HAVE NEVER MET WITHOUT IT...IF ANYONE OUT THERE WANTS TO TALK JUST WRITE TO ME AT GIBSONFLO @AOL.COM, I WOULD LOVE TO HERE FROM ANYONE... TAKE CARE AND BE STRONG KIM GIBSON
address: kellyb27@dmcom.net
type: systemic (diffuse or CREST)
Date: 02/22/03
Time: 04:47 AM
Hi, my name is Kelly. My mom has had scleroderma for years. Little over a year ago, my dad pasted away from a heart attack. This has taken a toll on my mom and myself. She has always depended on him. She has been going down hill since. Anyway, she was just in the hospital last weekend, choking, gaging and throwing up. All was to do with her throat. There is a lump in her esophagus that needs to be removed and her esophagus needs to be stretch. She has alot of trouble eating. She has trouble walking and using her hands. She is in alot of pain. Her lungs are not bad, yet. She is very weak. I'm not sure what to do anymore. I live only blocks from her. I gave her my cell phone because if she falls she can call me and I can come running. If anybody has any suggestings, please write me. Money for her is super, super tight. I help her all that I can. I love my mom and I'm not sure what to do anymore. I hate to see her suffer.
address: lirpashowers3@webtv.net
type: systemic (diffuse or CREST)
Date: 02/22/03
Time: 03:41 AM
April again! The Gi doctor wasn't in my insurances network so I see another one in March, the rhuemy in April. My regular doctor isn't happy with my mitral valve and heart, sending me for an echo next week, had one in November! Wants to send me to another cadiologist, a pulmonologist. She put me on a stronger Zanax, stronger Elivil also. I went to pick up my meds and asked the pharmacist if he was familar with ANA tests and he said....you have scleroderma....I said yes, not official but I know, you can tell by my face, he said yes! Still want to be in denial but when it slaps you in the face, what cha gonna do?...lol! He said to fight hard and he thought I was brave, I smiled a lot, he said I made his day after smiling with what I face:-) Still have to STOP smoking, I have to but they......relax me, too much stress, what an excuse right!! Will update as things happen. I just ache and feel horrble right now. Hugs, April
address: ward327skid541@yahoo.com
type: systemic (diffuse or CREST)
Date: 02/19/03
Time: 01:11 AM
It has affected my hands since the beginning but it has crept into my lungs and I have been in the hospitol twice since then.(April,2002). I also have Raynuard's Syndrone. No more ulcers on my fingers since I stopped working. I refuse to give in to something that wants to take over me but at times i wonder why I fight so hard but then I look at my children and grandchildern and I don't wonder anymore.They give me the will to go on and say, no you don't.
address: hfdtry@adelphia.net
type: systemic (diffuse or CREST)
Date: 02/17/03
Time: 10:32 AM
Hi it's Sam again. Well I had to go in the hospital Feb. 11th my birthday. The night before I decided to drink some liquid laxative because I was a little consipated. Not knowing I had an infection in my instinal track and that made me have vomiting and bleeding come out of my bottom. I had seen a GI doctor and he wants to see me in two weeks. I had gotten to come home Thursday afternoon because I could tolerate regular food. Now it's Monday and I'm waiting for my doctor to call because I broke out in a rash from my face on down to pelvis area. I do get my staples taken out later on this afternoon. My knee looks real good and I'm not using my crutches anymore.Well I'm going to go now, you all take care. And thanks for reading. Sam
address: lirpashowers3@webtv.net
type: systemic (diffuse or CREST)
Date: 02/15/03
Time: 04:42 AM
Hi, April here! Did my story up there and have had some nice responces, thank you all!! I cannot believe I did this but I missed my rhuematologists appointment! I could of sworn they said the end of Feb., it was in Janurary and had to wait since November so I go in April! Memory is bad. I am always so tired, I either have insomnia at night and go to bed late, wake up fatigued and have to lay down every single day, it overwhelms me! When I read my story, I couldn't believe all the typos so I call myself the typo queen! My eyes feel puffy and sore all the time, I ache, feel weak, my spastic colon is at the extreem stage as anything (most anything) I eat comes back out like litteraly within 5 minutes! Not throwing up. I hae trmors in my hands, I hae no energy, my doctor lays it more on my heart condtion. Who knows anymore. I am fighting for disability, a hearing is next but am hoping the specialist will have a final diagnoses so I can say....my heart, lungs GI tract and possiblely kidneys are affected. I had a pulmonary tes in January...lung damag, some from smoking, some from hardening, my doctor isn't sure, I guess the rhuematologist may be able to tell me more. I hands and feet are always cold, my feet seem to swell but not show it. I have trouble breathing. Bending my fingers seems harder, tighter. I have headaches a lot, lower than normal tempature (like 95.6), chills, my head itches. I rarely have good days, I am a mess and know I have he posstive ANA test but not sure exactly if it is lupus or scleroderma but I think the latter. I get mad easily, am on Zanax now but it is not strong enough!!! If yu red my story, you will know more but heres the rest so far.....lol!! I get depressed, cry, feel like doing nothing. I am more sick of this than anything...other than the exteeem fatigue and breathlessness. She has me on the Advare inhaler to help with the lungs, see the Gi doctor next week finally and the rest soon! Ain't life grand....lol! I feel guilty not doing more with my kids, said when I found out I had this I would live life to the fullest but it is kind of hard when you feel horrible and sleep all the time. Twelve hours isn't enough even. I could sleep like rip van winkle!! Backaches, shulder aches, elbows, hands, legs......AHHHHHHHH!!!.....lol. Will update as more developes!! Hugs, April email@lirpashowers3@webtv.net
address: sylviastaton@mybluelight.com
type: systemic (diffuse or CREST)
Date: 02/13/03
Time: 08:16 PM
My husband was disagnosed in June 2002 with lupus. Since then his hands completely broke open. They looked rotten. And as now his muscles has weakened so much he cannot hold his head straight. This week his lost function in his right hand. They give two months to live right before Christmas. His doctor said today she did not know how he was still living. He is 61 yrs.old we have been married for 6 yrs. But it is so hard toi see someone you love so much lose their way of life. If anyone has input please I will except any advice. I know God is the only way I have strength to take care of him. His name is Doug.
address: hfdtry@adelphia.net
type: systemic (diffuse or CREST)
Date: 02/07/03
Time: 01:58 PM
Hi! It's Sam again, my surgery went good. I'm alittle sore today. I gotten a email from a lady name Tammy Wood would you please send me your email address. My surgeon said he had gotten all the calcinois out of my knee. That's good. Well you all take care and thanks for listening. Sam
address: kari_ontario@hotmail.com
type: systemic (diffuse or CREST)
Date: 02/05/03
Time: 03:29 PM
Please Read..moms in hospital undiagnosed for a week. She had been diagnosed with lupas, and then they said it was scleraderma, she had it for abour 20yrs now. its mostly in her fingers.. and she is having lung problems, She see's a specialist ever few months to check on her condition and she does the prednesone thing once every about 2 years. recently.. she has been feeling sick, and dizzy, and cold.. last wednesday, my dad called me up to her room, she had gone to bed at 10 and had to throw up, it was all over the bathroom..dad gave her a bucket..and this time she threw up blood.. hard time breathing and dizzy..i called ambulance..she is still in hospital and not diagnosed really.. first they treated her for bleeding ulcer, now they don;t think its an ulcer.. she is on antbiotics..her trip in the ambulance also gave her a mild heart attack, and sometime yesturday (today a week in hospital)she had a stroke they say.there has been no more blood.. she is going for a cat scan as we speak.. anyone here seen any thing like this?? kinda hoping there is an answer. I know she is suffering..she is on oxygen and still not breathing well. I am afraid she isn't going to make it.. The doctors seems so clueless to this disease, i called her specialist and she says the hospital hasnt contacted her. we think that one of the pills she took as well as the aspirin may have done this. still i am hoping someone has has this symptoms and may shed some support.
address: hfdtry@adelphia.net
type: systemic (diffuse or CREST)
Date: 02/05/03
Time: 08:18 AM
Hi my name is Sam, well tomorrow I'm having surgery on my right knee. I have calcinois on that knee for along time and every three years they seem to want out. Boy does it hurt. And I have had infection in it since July 2002. I recently had gotten married and now I have health insurance so I can see my doctor like I should. I'm alittle nervous though I really don't know why. I wished I had someone to talk to that also has scleroderma (crest). I've had raynauds since 21 yrs old and had found out about the scleroderma in 1996. Alot of times I pretend there is nothing wrong with me but lately my feet are bothering also my hands, Well it doesn't help that I work in a grocery store. I hope some one will want to talk soon. This is my husband email address so please also put for Sam. Thankyou and have a nice day!!!
address: gibsnflo@aol.com
type: systemic (diffuse or CREST)
Date: 01/20/03
Time: 09:05 PM
hi everyone it has been a while since i have been here to read the post-its. i just want everyone to know that i finally got the winchester kentucky support group up and running and i am so excited, but at the same time so very nervous.i cannot wait to get a group of people together that actually have scleroderma and know how it affects our lifes not just some days..but everyday!family tries to help out a lot but noone would know more than a person who has the disease.take care and be strong everyone- kim from kentucky:0)
address: skategirl813@aol.com
type: systemic (diffuse or CREST)
Date: 01/20/03
Time: 05:10 PM
HI my grandpa has scleroderma really bad. It so far has not affected his organs yet, but they do want to put a pase maker in him becasue his pulse is off. Is there anyone out there who has had this problem? Could you please email and tell me what you did. Thankyou
address: Mrsluvtea@aol.com
type: systemic (diffuse or CREST)
Date: 01/14/03
Time: 05:45 PM
I have diffuse systemic slceroderma. It is progressing rapidly. I am taking Methotrexate to slow it down and surpress the immune system from attacking. It is slow, not working well yet. Dr. wants me to take Penicillimine and I am hesitant. What do you think out there? I already deal with side effects of Methotrexate which he wants me to continue with the new one. Nausea, hair loss et. I take meds to help with those side effects, but they do not comepletely rid me of them. Penicillimine also causes blood disorders so I want your opinion. Laurie from MI
address: DINKIDO45@AOL.COM
type: systemic (diffuse or CREST)
Date: 01/14/03
Time: 04:04 PM
Hello My name Is Judy - i have the Progressive Systemic Sclerosis and understand what I am told but scared none the less. I know this is a fatal disease and there is no cure. Why it is out there I don't know. I sit around the house and just wonder who all out there has this and can talk to me. I realize I am not alone but then again, I go on line daily just in hopes of finding someone who is on line and can relate to all I am going through. My children are 21 and 12. I am so upset that I have to watch them watch me and see the confusion in their faces. They want to help and they do try. There is just no one I can talk to about any of this. Go to the doctor - How are you - then you tell them - you get thanks to be here - take this new medicne and see me later. Does anyone really care. Just The Good Lord. I have been denied disability and do not have any medical insurance - don't have the energy to fight for any of it anymore. I can't even mop or sweep a floor - do laundry or anything. It STINKS. If there is ANYONE who is willing to keep in touch with me just so I can keep going. It wouold be appreciated. I am tired of having to explain why I feel down because I have no one I can relate to about this. Take Care and Tanks For Listening
address: bargar10@hotmail.com
type: systemic (diffuse or CREST)
Date: 01/12/03
Time: 10:13 PM
Iam an Oklahoma Choctaw indian. Does anyone know who are the five Choctaw families that the genes have been traced to?
Barbara Garland/Folsom/Dukes
address: lisa_69_88@yahoo.com
type: systemic (diffuse or CREST)
Date: 01/10/03
Time: 08:50 PM
HI MY NAME IS LISA , MY FATHER HAS THE WHAT THEY CALL DIFFUSE SCLERODERMA WHICH IS THE WORST THAT ANY LIVING PERSON CAN HAVE, I HAVE LIVE WITH MY DAD THROUGH THIS DISEASE FOR 15 YEARS, AND I DO KNOW SOME THINGS THAT WOULD HELP SOMEONE THAT IS IN THE FIRST STAGES IF IT, FOR ONE YOU HAVE TO MANTAIN A HEALTH DIET THE WHOLE TIME YOU HAVE IT BECAUSE IN THE LONG RUN YOU MAY LIVE A FEW MORE YEARS LONG, MY DAD WAS TOOK TO THE EMERGENCY JUST LAST NIGHT, HE HAD MASSIVE HEART FAILURE, FLUID ON THE LUNGS, AND ALSO HE HAD NO PATTASIUM, NO MAGNESIUM, AND NO CALCIUM, THEY PUT HIM ON AN I V AND HE HAS BEEN IN THERE FOR ABOUT 6 DAYS NOW, HIS STOMACH IS NOT ABSORBING ANY OF THE NUTRITION FROM ANY OF THE FOOD HE EATS, IT WILL NOT GO IN HIS INTESTINS, BECAUSE THE DISEASE HAS PUT IT TO SLEEP, HE CANNOT PUT ON AN IV FOR THE REST OF HIS LIFE OR IT WILL CAUSE THE LIVER TO SHUT DOWN, SO THE DOCTOR TOLD US TODAY THE IS GUTS DO NOT WORK, SO HE REALLY IS JUST STARVING TO DEATH, BUT HE HAS A GREAT DOCTOR, THEY ARE REALLY JUST TREATING THE DISEASE AS THE PROBLEMS COME ALONG, IF ANY ONE WOULD LIKE TO ASK ME ANY QUESTION AT ALL ABOUT THIS, E-MAIL ME AND I CAN JUST ABOUT TELL ANYTHING YOU WANT TO KNOW, I LIVED THROUGH IT, IT IS NOT A FUN RIDE, IT IS ACTUALLY A VERY SCARY THING TO SEE SOMEONE GO THROUGH, BUDDY THOMAS WILEY IS HIS NAME PLEASE KEEP HIM IN YOUR PRAYERS, AND COUNT YOUR BLESSINGS, THANK YOU, LISA WILEY
address: angeleyesz23@yahoo.com
type: localized (Morphea/linear)
Date: 01/04/03
Time: 08:32 PM
I am 12 years old and have had morphea since i was 5 years old. i have it on my right arm in two places on my right hand on the right side of my back and on my stomach. the doctor treated me with prednizone and triamcinolon cream and he beleives this has stopped the growth.i went to childrens hospital in portland oregon for periodic check-ups now the doctors say i don't need to come back unless there is some change.
address: Newyorkst@aol.com
type: systemic (diffuse or CREST)
Date: 01/02/03
Time: 02:52 AM
Hi my name is Douglas...I have had this disease for over 8 years. At this point it is in remission. I went to an herbalist in a small store. The little Chinese lady told me that she had seen this in some old people in China. By the time I had met her, I could hardly swallow, eyes were drying out and feet and hands had all but lost mobility. She was very compassionate as that I didn't have any money of any consequence left. She would pick them up down town and give them to me at cost. A couple months later, I went by and found that her little store was vacant. I recently went through a bag of herbs that I had left over from years and found that she had put an herbal perscription in it....I bought the herbs again downtown myself, just to make sure that no matter what I have them. Buying direct in downtown L.A. with the persription is very inexspensive. Until I can put up a Web page myself, I feel a responsibilty to my own healing to give this information to anyone that wants it. If you yourself have the talent to put up a web page it would help me to fullfill my obligation to this planet. My Scleroderma has been in remission for years now. My CK levels have not been elevated in years....I hit 1250 at on time and was told I had 30 days to live. My doctors reluctantly told me that they believed that my disease was in remisson and asked me for the formula....will give the formula to anyone who contacts me, providing that you "pass it on" and get back to me and let me know how you are doing.....All Blessings and Love to all of you....Have a pleasant life....Regards Douglas...Newyorkst@aol.com
address: Foxy_Roxy_202@hotmail.com
type: localized (Morphea/linear)
Date: 01/01/03
Time: 05:00 PM
Hi my name is Roxanne and I have linear scleroderma.When I was in Grade 4 I had this patchy brown mark on my arm. My mom thought that it was eczema. When I went to the doctor after it started growing and nobody knew what it was. So the doctor gave me cream after cream after cream and none of them ever worked. Finally he took a biopsy, he shoved a needle in my arm and then took this round metal thing and dug out a huge chunk of skin. After they diagnosed me with Linear Scleroderma I saw so many doctors. I went to vancouver and Kelowna British Columbia to see Dermatologists and I was have never been so scared in my life. I seriously thought that I was gonna die. I have had it now for 10 years. It is on my left arm and it has spread from the top of my shoulder to my fingertips. My left hand has gotton so sore sometimes like I can't bend my fingers. People have looked at me strangley when they see this huge mark but most people think that it is a burn mark. I don't hide my scar theres no point. Its who I am and I have no choice but to live with it. I was always scared that in was going to progress. It hasn't spread for a couple of years. But I get really bad muscle spasms and I can't move my arm sometimes. I really don't know much about my disease but i am trying. Thank you for listening to my story I hope it makes sense. If anyone who reads this has linear scleroderma please e mail me back and educate me a little more.
address: samanthapink@hotmail.com
type: localized (Morphea/linear)
Date: 01/01/03
Time: 04:58 PM
I'm currently (12/21/02) a 13 year old 8th grade student in Las Vegas NV. I live with my loving and supportive mother and father and with a very annoying little brother. I recently (in Aug) moved to sin city from the cold state of MN and am loving it here. I was diagnosed with morphea a few years ago. I had patches on my leg for over a year before being taken in to see a doctor. My aunt had told me it was sun spots so we thought nothing of it. My doctor had no idea what it may be so she sent me to a dermatoligist. The derm then took a biopsy (and a very painfull one at that) off my left foot. The derm knew what it was but didn't know much about it so he had an appointment made for me at the Mayo Clinic in Rochester MN. When there they treated me very well and knew how to deal with everything. I sometimes feel bad for feeling sorry for myself about my condition...esp after reading others stories...for my morphea gives me no pain or itches. I take a pill every morning (a stong one so i have to get blood drawn and my eyes checked every few months) and I am supposed to apply a speacil bleaching cream to my patches twice a day. I was going to be taken off my meds (for the spreading stopped) but asked to remain on them in fear of getting new ones and i was moving and didn't want that to happen. I have one faint patch on each elbow and a few on my tummy and hips. I have one on my left upper leg where the hip and thigh connect and then lots on my shins and one large spot on my left foot...all looking like bruises. I do not like to tell people about my disease and when asked what happened to my legs when i wear shorts or skirts (which took me a long time to start doing again) i say i fell down the stairs or something of the sort. I am very self consious about them. Only one friend here in Vegas knows and that is my best friend i have made here Chris. He somehow was the only one could tell i was lieing when i said i fell and bruised myself so he quesitoned me about it constantly (he was concerned-the sweet boy).
address: Hella_Shibby@yahoo.com
type: systemic (diffuse or CREST)
Date: 01/01/03
Time: 04:56 PM
I was recently diagnosed with Scleroderma about 2 months ago. When everything started my parents and I thought that I was just dealing with a second round of Mono. After several visits to my family and many blood tests we discoverd that I indeed did have Mono along with Acid Reflux and a bacterial infection in my stomach. Little did we know that all of these illnesses would soon lead to the discovery of Scleroderma. After many weeks of the aches, pain, and vomiting, we started to notice some not so normal symptoms. My fingers and toes were always freezing cold, achey and turned colors. Sometimes they would turn pale white as though I was dead and other times they were nearly black. After one more visit to my family doctor they refered me to a rhumetologist. On that very same visit the doctor expressed his concern and the potential of Scleroderma. One visit later I was diagnosed with CREST/limited Scleroderma. Along with this, I do have Raynouds. At first I didn't accept what was going on and I tried to ignore what I knew I was going to be dealing with for the rest of my life. The saddest and hardest part of finding out I had this disease was that I am only 17. I began to realize that I was not going to lead a normal life like my friends, and I started to cry... all the time. I am currently on several medicines for my stomach (due to the constant return of bacteria) and for my pain. In a few days I will have to start giving myself weekly injections. These injections will not only help with the pain, but will help to slow the tightening in my finers and toes. As of right now, I have to have a teacher come to my house to tutor me, because I can no longer go to school. There are days when I feel great, but it doesn't last very long, and then there are days when I don't want to leave my couch. I feel very alone as I try to deal with this disease. Most of my friends no longer talk to me because they don't understand, and my parents are having a hard time deling with it themselves. I would love to hear from more people.
address: pennygj34@yahoo.com
type: systemic (diffuse or CREST)
Date: 01/01/03
Time: 04:54 PM
Hello all my name is Ruby / Penny I am 36 years old and have scleroderma. I was a waitress and Manger in fast food for the last 15 years (loved my job) but as of February of 2002 I am unable to work. I have 2 boy's and a great husband who have been here for me from the start. My symptoms started with pain and big patches of hard skin on my right arm, moving fast to the left arm and now my leg's. It's so hard to get out of bed sometimes but I do cause I have to keep going my family need's me and well I just don't give up that easy. I keep telling myself I have scleroderma it dose not have me and someday I will be cured. I have taking lot's of different med.'s and really get no relief from any. My finger's swell so bad at time's I cannot even hold my coffee cup (and I love coffee). Before getting this decease I never heard of it and no of no one els who has it only what I have read here. Let me just say the story's I have read here have been a big help for me so thank you all. It's been almost a year now and thing's are getting worse but I will not give in to it. I am a fighter and I have God on my side, he knows my family need's me around. I love living, life has been so good to me so to any one who might want to give up PLEASE DO NOT THERE WILL BE A CURE then we can go back to our "normal" life. Bless you all and if you would like to talk to me please feel free to E-mail me at any time. your scleroderma Buddy Penny
address:
type: systemic (diffuse or CREST)
Date: 01/01/03
Time: 04:52 PM
I,m a 42 year old black male who has the "crest" part of scleroderma. I was diagnosed in 1985 and have been living with this illness quite well, until this year. In 1985 through 1988 I was told that I may not live to be 40, well I,m still here! At frist I noticed that my hands and feet were swelling up every morning,then my joints (all) began to ache like hell. I went to cook county hospital where I was diagnosed with Pss with disfusse scleroderma. I was treated with D- penicillamine, Nifedipine, prenidsone. These medications offered little or no help at all. I stopped taking all of my meds. (don't try what did it might be dangerous for you). to make long story short I been in remission for over ten years and my skin has softened up around my neck, arms, trunk, hands except i have contractures on my right 2nd ,3rd,4th, fingers. Raynaunds phenomenon still affects my hands and feet, but I look and feel better than I've have and years. This disease is progressing very slowly and I hope it stays that way. I also have severe Tendonitis in both of my elbows both medial and lateral. for more information contact me at sedrickpace@sbcglobal.net
address: tworedroses@earthlink.net
type: systemic (diffuse or CREST)
Date: 01/01/03
Time: 04:51 PM
My name is Delphine Duncan and I am Deaf with Scleroderma. I have systemtic scleroderma for 13 years. I m looking for Deaf person, female or male with scleroderma to talk, share, write, e mail and so forth. I have been looked for and asked for and around for Deaf with scleroderma for a long time and it did not happen. I hope and pray that it will happen real soon. Deaf, are you out there?
address: jenniez007@hotmail.com
type: localized (Morphea/linear)
Date: 01/01/03
Time: 04:49 PM
HI, MY CHILD IS 8 YRS. OLD SHE WAS DECLARE WITH ESCLERODERMA LINEAR LAST YEAR ON NOVEMBER, SHE WAS ON QUIMOTHERAPHY ALMOST FOR THE WHOLE YEAR, DOCTORS TOLD THAT PROBABLY SHE WILL NEED A TRANSPLANT (HER OWN BONE MERROW) IF THE MEDICINE DO NOT WORKS, BUT THANKS GOD WE FIGHTING TO MUCH DOING SWIMMING EXERCISES, TAKING HER MEDICINES ON TIME AND SHE IS DOING GOOD, SHE HAS ALMOST A MONTH NOT GOING TO THE HOSPITAL FOR QUIMOTHERAPHY, SHE STILL DOING A LITTLE BIT BUT WITH A LOT OF MEDICINE, BUT SHE LOOKS MUCH BETTER, SHE IS HAPPY AND FEELS GOOD, GOD IS THE BEST HE IS THE ONLY ONE WHO CAN HELP YOU,TRUST ME, GOD BLESS TO ALL, BY THE WAY MY DAUGHTER NAME IS CAROLINA. THANK YOU SO MUCH, JENNIE (MOM)
address: pahdopony@aol.com
type: systemic (diffuse or CREST)
Date: 01/01/03
Time: 04:47 PM
Hello all,I am 55 years old; Scleroderma diagnosis about 3 years ago. About the time I think I have things figured out about this disease. It changes up on me! Propping up my pillow and 6" wood blocks under my headboards helps my reflux and eating before 6:00 pm. If I crave spicy foods like pizza, I learned to eat those things in the midday. I wear gloves--aways in the winter and sometimes thinner gloves in the summer because Raynaud's affects my hands (swelling, tightness, thin, shiny skin) and my nose gets cold easily and changes color. It feels as if the skin on my nose is very thin. I try not to let myself get upset because if I do, I immediately have visible knots under my skin with red patches. I have tried to be proactive about my condition. I read everything I can and try to learn ways to live with my condition. It seems that there are very few American Indians with this condition; most have never heard of it. nita
address: mdsohio59@aol.com
type: systemic (diffuse or CREST)
Date: 01/01/03
Time: 04:46 PM
(I am posting this letter hoping to find someone that has some encouraging information that I can pass along to my friends) Two very good friends of mine are a set of identical twin sisters that were just diagnosed with Diffused Systemic Scleroderma at the Cleveland Clinic. They are just beginning to get into various Doctors (heart, lungs, etc.) that KNOW what they are talking about, since the girls have the official diagnosis) They are 30 years old, Both have husbands and 2 small children each. They are truly amazing young women who WERE full of vigor and energy striving to be upstanding citizens who have the who world ahead of them. They've gone thru the ups and downs and, etc., etc., with the misdiagnosis's and so on. They have both had the symptoms for several months and have visited the doctors numerous times, only to be told something much less severe were their problems. We live between Dayton and Cincinnati, Ohio. Both are willing to participate in studies on this disease. The fact they are identical TWINS is very interesting right off the bat. I love these girls as if they were my sisters and am trying anything that I can to help them THROUGH this disease. If anyone knows anything or anyone that might be of assistance, PLEASE WRITE ASAP. PLEASE put SCLERODERMA on your letter "subject" so that I know it's safe to open. Thank you very much, God Bless you all, Marty Snyder
address: SHARONA357@HOTMAIL.COM
type: systemic (diffuse or CREST)
Date: 01/01/03
Time: 04:44 PM
I WAS DIAGNOSED WITH CREST WITH OVERLAPING CONDITIONS A YEAR AGO. I HAVE FELT TERRIBLE FOR SOME TIME NOW AND NEVER NEW WHY. PEOPLE WOULD COMMENT OF THE COLORING OF MY HANDS THEY WERE ANYWHERE FROM BLUEISH TO RED AND PURPLE IT WAS VERY EMBARRASING. THE DOCTOR I AM SEEING TOLD ME THAT WHAT THAT IS RAYNAUD'S AND HE HAD A INTERN VIEWING ME AND LEARNING AND THEY WERE JUST SO AMASED AT HOW DISTINCT MY OUTER SKIN WAS I BEGAN TO FEEL LIKE A FREAK. I HAVE TROUBLE WITH CHRONIC ISHEMIC COLITIS AND HAVE BE HOSPITALIZED TWICE FROM IT WHICH THE DOCTOR SAID IS FROM THE SD ATTACKING MY INTESTINES. I HAVE TROUBLE SLEEPING BECAUSE OF BODY PAIN AS I HAVE ALSO HAD 6 BACK SURGERIES SO I TAKE AMBIUM EVERY NIGHT. I HAVE ALOT OF NEAUSEA AND IT COMES ON WHEN YOU LEAST EXPECT IT. I ALSO TAKE COUMADIN FOR A BLOOD CLOTTING PROBLEM CALLED ANTIPHOSOPOLIPID ANTIBODY. I HAVE SHORTNESS OF BREATH SO I HAVE TO TAKE THINGS SLOW. I AM JUST REALLY GETTING INTO ALL THE LEARNINGS OF THIS DISEASE AND I AM STARTING TO UNDERSTAND IT NOW. I FOUIND IT TO BE VERY DISABLING AT TIMES AND KNOW I COULD NEVER HOLD A JOB ANYMORE I CANT EVEN OPEN THINGS WITH MY HANDS. THE MOST IMPORTANT THINGS TO ME IS HEAR FROM OTHERS WITH THIS CONDITION AND THAT WE CAN ALL KIND OF SUPPORT ONE ANOTHER.
address: sassybankgirl24@yahoo.com
type: systemic (diffuse or CREST)
Date: 01/01/03
Time: 04:40 PM
My best friend Gabriel was diagnosed on November 15, 2001 with Scleroderma. A year before her diagnosis she began to feel ill. I watch her struggle every day to feel as normal as she can. Walking is a chore just as opening a pop can. Her and I live in a small town so there isn't many resorces or support. I have tried my hardest to make her feel her best every day and I know that many times she doesn't even disscuss the pain. She knows that in time this disease will be fatal but still she has faith. Her doctor has given her 600 mg of ibprophin and a pain medication. It sems like because there isn't many cases and people are not so educated on this disease that finding relief is difficult. If anyone has idea's or knows of other medications that could help please let me know. I know I can't take the pain away but I would like to do what I can to help. Because Gabriel is my best friend and an angel God wanted in my life. God Bless
address: Vicki@modernmgmt.com
type: systemic (diffuse or CREST)
Date: 01/01/03
Time: 04:28 PM
I was diagnosed at 37 with scleroderma/polymyostis, so was my sister 5 years earlier. My mother died a year before my diagnosis with complications from Lupus. The females in my family are doomed. Within months of my doctor pulling up a chair, holding my hand and telling me I had the same as my sister, I could not bend my arms, open up a can of pop or reach into the cupboard. I was a prisoner in my own body. Within the next 3 years most of my organs were involved. In the Dr's words, I would not live much longer. Then one wonderful visit to the Dr., he said Vicki, I think your skin feels not as tight, what do you think? You know what? He was right. It has been 3 years since that day, and I am now in remission. My improvement is truly a miracle. My doctors have never seen one come from the point where I was at to where I am now. And I am truly grateful. I do have some tell tale signs including heartburn that bring you to your knees, a few bent up fingers and a few wrinkles around my mouth. I like these reminders...they are constant reminders to NOT take life for granted. During my illness and recovery I lost my husband and several friends. They could not deal with the changes I was going through. All I have to say is so long. I am so thankful for a second chance and I am a better person because of it. I recently remarried, and he is very aware of my disease, his Aunt also suffers with scleroderma. In closing, my sister was not as fortunate as I to go into a remission, but she is still living (thank God) and dealing with the disease on a daily basis. This disease is awful. I love my sister, miss my Mom and think of everyone this horrible disease has touched. Thank you God and Dr. Ray Morris.
address: millerpile34@hotmail.com
type: localized (Morphea/linear)
Date: 01/01/03
Time: 01:34 AM
I recently went to a couple doctors about patches on my neck - they said it was morphea and they didn't know much about it yet. After doing some personal research, I came across a dietary supplement called Colostrum. After taking around 1000-1500mg per day (two capsules) the spots began to itch pretty bad. Then after about two weeks there had been significant improvement and it is getting better and better every day. I bought my at a local GNC store. Please respond to me if anybody tries this and it works or even if it doesn't.
address: hfdtry@adelphia.net
type: systemic (diffuse or CREST)
Date: 02/05/03
Time: 08:17 AM
Hi my name is Sam, well tomorrow I'm having surgery on my right knee. I have calcinois on that knee for along time and every three years they seem to want out. Boy does it hurt. And I have had infection in it since July 2002. I recently had gotten married and now I have health insurance so I can see my doctor like I should. I'm alittle nervous though I really don't know why. I wished I had someone to talk to that also has scleroderma (crest). I've had raynauds since 21 yrs old and had found out about the scleroderma in 1996. Alot of times I pretend there is nothing wrong with me but lately my feet are bothering also my hands, Well it doesn't help that I work in a grocery store. I hope some one will want to talk soon. This is my husband email address so please also put for Sam. Thankyou and have a nice day!!!