| 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: mobsterwoman@hotmail.com
type: localized (Morphea/linear)
Date: 12/29/02
Time: 05:37 PM
I am diagnosed with Morphea. I have it from my neck to my thigh including my arms. My mom took forever to bring me to a doctor. Maybe if I went earlier they could of slowed it down a bit. I was getting treatments but it only got worse. The PUVA was making my skin even dryer and harder. They gave me more cream none worked and then they gave me a different one but didn't work again and again! All this was getting me depressed. So I quit going. I quit caring. I lost hope in everything. :-( I'm a monster!
address: jmw@jennieward.fsnet.co.uk
type: systemic (diffuse or CREST)
Date: 12/22/02
Time: 06:32 AM
My friend suffers from Raynaud's and scleroderma [I'm not sure which type] and has recently had a mastectomy due to breast cancer. She needs now to have chemotherapy and radiation therapy. Is there anyone out there who has experience of this? She needs some support urgently.
Jennie
address: FLETCHER245@SUSCOM.NET
type: systemic (diffuse or CREST)
Date: 12/11/02
Time: 10:31 PM
HAS ANYONE OUT THERE BEEN DIAGNOSED WITH MIXED CONNECTIVE TISSUE DISEASE AND NOW HAS LYMPHOMA AS A SECONDARY DISEASE?
address: keturah_fuller@mbile-da.org
type: systemic (diffuse or CREST)
Date: 12/11/02
Time: 10:51 AM
My daughter has systemic scleroderma and She is 30 yrs. old now with a husband and 2 yr. old son. she began having symptoms about one month after giving birth. She has been a diabetic since she was 15 yrs. old. She now has neuropathy in her legs and is in a wheerlchair. Her skin has hardend over 80% of her body. She has a port to receive chemo treatment for pulmonary hypertension. She has a leaking heart valve, and ulcers on all fingers and sores on her heels. She has had so many complication, they are to many to mention. This week she is starting to take the new medication, TRACLEER, and I would like to know anyone who is taking this drug, if you have had good results, and also what side effects have you experienced. This drug is very expensive and will cost her over $500.00 a month (after insurance) but it will be worth it all for her to have a few more years with her young son and husband. Thank you for listening and I would love to hear from you.
address: sweetwizler28
type: localized (Morphea/linear)
Date: 12/09/02
Time: 05:47 PM
hi, my name is brittany thompson. i had had this disease since about the 3rd grade but doctors could never figure out what it was. i have lived with this for a while and its hard my left leg has atrophy all over it and on my arm my left leg is smaller than my right one and i have trouble finding pants its hard for me. but i have lived with it when i was 13 they finally figured out i had linear scleroderma and i have been treated since then the treatment has helped and my leg has cleared up and as long as i work out and exercise my leg muscle can grow the diffrence in sizes is hardly noticlble but i can still see it. i want to everyone out there who just found out they have it that i was scared i felt diffrent i cried wheni had to go shopping and i felt like i was a problem to my family but i realized that if you talk to people it helps and they one day you feel normal as i am getting closer to. so dont become mean and sad and seperate your self stay with friends and family and you will be fine thanx brittany
address: Zsworldallme@aol.com
type: systemic (diffuse or CREST)
Date: 12/04/02
Time: 02:30 AM
my name is heather, im 31 live in evansville,in. was diagnosed in april 2002. it affects all my joints hands arms face neck,really my whole body! i itch and hurt most every moment,i'm scared. i'd love to talk withsomeone who gets it. may God lay hands on all of you,happy holidays!
address: leslies@comcast.net
type: localized (Morphea/linear)
Date: 11/27/02
Time: 01:08 PM
My name is Leslie, I am 33 years old and the mother of a beautiful 13 year old daughter. I was diagnosed with Morphia about a year ago, I had a spot on my left breast, it started out pink and shiny with a dark ring around it, I had a biopsy done and it was confimred morphia, since then I have gotten another spot on my right arm. Both spots now look like bruises. My right arm is starting to bothing me a little as if I pinched a nerve. Doctors don't seem to have any answers. I have had arthritis since I was a young girl, my daughter was also diagnosed with arthritis when she was 10 years old. We are both very active and take no meds. It is just something you deal with. I also have raynaulds in my fingers and toes. My biggest concern is that this may be systemic, it seems the older I get the more arthritic conditions I get. Doctors just seem to want to say there is no cure and send you on your way. Can anyone out there tell me the symtoms of systemic morphia.
address: moe2mary@aol.com
type: systemic (diffuse or CREST)
Date: 11/26/02
Time: 10:48 PM
My daughter in law is in last stages of this terrible disease. She is 43 years old and has three young children. This is a nightmare disease. She is in a Morphene Coma and will not come out of it. Please pray for her family.
address: teesizzles@aol.com
type: systemic (diffuse or CREST)
Date: 11/21/02
Time: 08:30 PM
My sister-in-law lived with scleroderma for 5 yrs. In that 5 yrs, I've never seen a more strong, loving, and determined young lady. She has 4 beautiful children and she live every moment of her life for her children. Everyday she was in pain, but she always put on a brave face for her family. She didn't want us feeling sorry for her. We lost her April 13, 2002 to a massive heart attack. She was 34 years old. I still am having a hard time dealing with the fact that she's gone. It made me reevaluate my own life. I am 34. I have 3 children and a beautiful husband. I still couldn't imagine the strength and courage it took for her to hurt every day of her life and still have a smile and a place in her heart for everyone she knew. Deloris Michelle Hammonds is at peace.
address: hogan62002@msn.com
type: localized (Morphea/linear)
Date: 11/15/02
Time: 05:06 PM
hello my name is brian and i am an gulf war vet that had developed linear morphia. I possibly now know more than all the doctors ive seen toghether about the subject. It started on my had and spread to my arm and my back. Where it spread ne tissue turned white and hard, then stared to loose hair. Because of the spreading i had to seek help which made me non deployable, and they nonre-enlistable. I am now out of the service and have fought this problem fot five years. We have tryed several diferent meds and each was more adverse than the next,couseing bad side affects. my doc andd i finally tryed dilantin which heart patiant use for seizures but had a very good side affect of softening the skin. the spreading has stoped and the skin has turned dank brown now. the only problem i faced was rumatoid problems with my hand and arm, i cant open it, or close it all they either. my grip strength is half and range of motin is way off. Ive allso experianced kidnny problems ans had an opperation for sticture making me pee blood.now Im stable and just dont let it defeate me, I have gotten on with my life and have a beutifull family. To everyone with these problems, dont let it rule your life. Find soeway ti kick its butt, and remember your not alone in the fight.
address: raumer@willapabay.org
type: systemic (diffuse or CREST)
Date: 11/08/02
Time: 09:17 AM
I am literally sitting here with tears streaming down my face as my husband who is 55 has just been diagnosed with Scleroderma. His hands swell up so big whenever he is in a relaxed state that his wrists wrinkle up and a yellow substance pushes out of his cuticles. His hands become like ice and white. Then they start to swell and get red and he has an excruciating pain, like a burning sensation that is so intense he cannot have even a sheet touch his hands, sores do not heal up on his hands, and the backs of his arms feel leathery. We have been married thirty years and have four daughters and I want to keep him another thirty years. Does anyone know how much time we have together?
address: haley_may01@hotmail.com
type: systemic (diffuse or CREST)
Date: 11/05/02
Time: 09:54 AM
Actually I am not really sure if I have Scleroderma, I went to London when I was 13 and they told my mother and I that I did have it. But just a year ago a different doctor told me I didn't have it. So if any one can help me out I would really appreciate it. thank you. Crystal Pickering
address: Nursemary8302@aol.com
type: systemic (diffuse or CREST)
Date: 11/03/02
Time: 09:48 PM
My mom was diagnosed with scleroderma when she was only 22 years old, and has had it now for over 20years,she never went to a doctor farmiliar with the disease until recently,her new doctor told us that she may need a lung transplant, 11/05/02 we find out if she definately needs one. -Mary 19
address: mamadollar38@aol.com
type: systemic (diffuse or CREST)
Date: 11/02/02
Time: 02:28 PM
I'm a 38 year old mother of 2 sons, 11 & 14. In Sept of 2002, after taking an antibiotic for a sinus infection, experienced some sort of "relapse" in which my hands and feet tingled and grew pale, my muscles in my arms and legs ached and twitched, my vision blurred and sever fatigue. After 4 weeks of doctor and 2 ER visits, I was told I had MS (probably)and am currently being tested for MS and Lupus (because of a rash I got on the back of my legs while taking the antibiotic). I had a period of "just fatigue" for about 2 weeks and now my symptoms are Intermittent pale hands, cold feet, red spots on my face, increase urination (on and off), unusual looking nails, skin itching and tightening (turns red at times and burns), unusual dark spot on my leg, still blured vision, tightness in chest and odd looking urine. My Aunt had scleroderma and rhuematiod. I'm sure I have scleroderma, after everything I've read, I'm pretty positive. I just wanted to know if anyone else had a sudden onset like this. And what medications and home treatment they would recommend. I love my sons and husband very much, and would love to be a productive member of our family again. I am so glad there are people who understand, thank you for reading and God Bless you all!
address: BorgenM@cshgreenwich.org
type: localized (Morphea/linear)
Date: 10/27/02
Time: 10:43 PM
Hi, my name is Mary-Charlotte and I am 14 years old. I was diagnosed with linear scleroderma when i was about five. I get so sick of feeling like I am the only person who has to cope with this, even though I know its not true. I was so happy to find this website and hear from all of you. I would love to talk to anyone who reads this. You can email me at borgenm@cshgreenwich.org, or IM me at Firefli238@aol.com. Hugs and support, Mary-Charlotte
address: kandalo@zahav.net.il
type: systemic (diffuse or CREST)
Date: 10/26/02
Time: 12:03 PM
my name is orly. i am a 32 yr old, mother of 2 boys 9 and 5 yrs.i was first diagnoised with scleroderma in 1994 i also have raynauds my hands turn purple and blue and the are very tights too. i live in israel. i thought that there were not many of us and it really helps a lot to know that there are a lot more people out there than i had ever imagined.please feel to e-mail me if you want, thanks orly.
address: DINKIDO45@AOL.COM
type: systemic (diffuse or CREST)
Date: 10/20/02
Time: 05:56 PM
Hello Everyone, My name is Judy and I was diagnosed back in 1993 with Raynauds Disease. A few years later my middle finger tip turned completely black and had to have it removed. That was horrible. The pain in my hands when they would turn white to blue to black was awful. Laid awake many nights un able to sleep because it hurt so bad. I had had a digital sympathectomy done to both my hands. Since then they can turn blue or black and it DOESN'T hurt anymore. Anyway, about 1995, I was diagnosed with crest. I dealth with that by using lotions and peroxide to avoid infections. Sept 13th 2002, I was put into the hospsital to have fluid drained from my heart. I was experiencing shortness or breath and heart palpatations. During that week, I was told that my lungs have started to show signs of messing up. I have since been put on oxygen 24/7. And am now filing for disability because I can not work anymore. I have found that the use of the Aveeno creams and body washes have helped with the itches all over my body. I am still in the dark about sleroderma. Every time I try and find out something, I hit a road block because it turns out to be the same ole thing. I will say this though, I am going to down fighting with every ounce I have. I will be around to see my children grown and married. Hopefully the 2nd part anyway. Gods Speed Everyone Take Care - Remember You Are LOVED. Thank you for your time Judy
address: skategirl813
type: systemic (diffuse or CREST)
Date: 10/19/02
Time: 12:01 AM
Hi is there anyone who has heard of or tried a new self shot called KINERET? or heard of CUICEOSTOXIN? If so could you please e-mail me- or if your also in remission. Thankyou
address: GIBSONFLO@AOL.COM
type: systemic (diffuse or CREST)
Date: 10/17/02
Time: 11:47 PM
HEY THERE EVERYONE I HOPE THAT ALL IS DOING WELL. I HAVE ANOTHER CHEMO TREATMENT ON MONDAY AND I HAVE NOTICED THAT SEVERAL OF MY OTHER FRIENDS ON HERE ARE ALSO STARTING THE TREATMENTS. HAS ANYONE GONE THROUGH THE CYTOXIN CHEMO TREATMENTS FOR YOUR LUNGS AND HAD ANY SUCCESS WITH IT?I AM STILL LOOKING FOR MORE PEOPLE AROUND THE KENTUCKY AREA FOR THE SCLERODERMA SUPPORT GROUP..LER ME KNOW IF YOU ARE OUT THERE-LETS GET THIS THING GOING-TAKE CARE AND BE STRONG- KIM GIBSON
address: mojobean_18@hotmail.com
type: systemic (diffuse or CREST)
Date: 10/15/02
Time: 11:47 AM
I am 20 years old and trying to balance school, work, and helping out my grandmother. About a year ago she was diagnosed while living on her own having medial trouble with daily tasks. Today she is in a Lodge with little help from home care and a lot from family and friends. The sores on her fingers (bith index and one pinky) are infected and open to the bone. Her skin is so tight that she has barely any movement in her hands and forearms. They are constantly covered with little sores and are always itchy. The doctors know nothing and she has visited specialists across the country. I found this site on the search engine looking for Edgar Cayce and plan to search a little more as I have heard so many positive things about his works.
address: jhein_98@swbell.net
type: systemic (diffuse or CREST)
Date: 10/11/02
Time: 05:58 AM
I hope I have the type right. I'm 20 years old and my mom was diagnosed with scleroderma several years ago. I would guess about 10 years ago. Maybe less. Everything with mom goes up and down usually. She'll be in pretty good health for awhile and then she'll sink down into horrible health and have to be hospitalized for a week or so. Sclero took hold of her esophagus(spelling) a couple years ago, and they had to go in and enlarge it. It did it a second time, but the size of it was okay, just the muscles that controlled the passing of food was essentially giving out. They found this out only after her being hospitalized because of mal-nutrition. Not to say she didn't eat(or try to)..however the food would just come up..it wouldn't stay down. So, the doctors installed a feeding tube, as a way of getting her nutrition when her esophagus(spelling) acts up. Growing up, my mom was never right. She has schizophrenia on top of this. So every since I was 5 years old or thereabouts, almost as long as I can remember, I've watched my mom's health degrade. One of the last times my mom was in the hospital, she was in such bad shape the doctor said she would probably be lucky to make it through the next year. She's in good health right now though, so hopefully that will continue for awhile. Her doctor has been wonderful. Her doctor is new to the profession, just outta school w/ his degree. I bet he never intended to have a patient so soon in his career w/ her rare illness. I would like to say that he has been wonderful. He takes real good care of her and has her do checkups every month. He's the only doctor in town with really any knowledge of this illness. Every other doctor bounced her around between each other because they didn't have much knowledge with the illness. I think she has lived as long as she has because of this doctor. He's made all the right decisions everytime some weird thing came up. Like when she got pnemonia(spelling again?) awhile back. Her lungs were about half-full of fluid and the machines she was on wasn't ridding the fluid fast enough. He decided to go in and remove the fluid from her lungs. Him and another doctor scheduled an appointment and fixed her up. I guess what I'm trying to say in all this, is that she's had a tough journey with this disease, and it's certainly fatal. I think what the weirdest part about it is, when you read information about this disease, nowhere does it say that it's a fatal disease. That to me is a disturbing aspect of it. Every site I've visited w/ information about it basically says the same thing 'arthritis of the skin affecting kidneys, heart, etc.' but it doesn't say, that the illness is terminal. I honestly believe everyone needs to cut the crap and post it straight out, like 'If you have this form of sclero, more than likely you're going to die'..why BS ppl? If you're going to die of something I would assume that you would want to know it. There's too much politics involved in it to give the truth I guess. It does really anger me that all these 'foundations' and what not can't give you the straight up facts that you're going to die. Maybe that's one reason why it's one of the less known terminal illnesses. Because, with AIDS it's said that basically, you're going to die, cancer says you're going to die. I mean come on now..start giving the facts rather than some politically correct understatement about the seriousness of the illness. Anyway, this is prolly too long. Thanks for your time.
address: HolderzRus@aol.com
type: systemic (diffuse or CREST)
Date: 10/09/02
Time: 10:38 AM
My name is Deb. I am a 35 yr old mother of 3 boys. I haven't been diagnosed yet, but my dr. told me he thinks I have scleroderma. After recently having foot surgery to remove a cyst and bone spur, my foot dr. noticed that my feet and hands were blue. My mom was with me and urged me to tell him how I had been felling. We all know that when this first starts you feel like you're becoming a hypochondriac, so you quit telling people how bad you feel. After telling him about the last six months or so, he said "I think you have scleroderma" you really need to see a specialist. When I went back to see my famly dr he seemed alot more concerned. I have since had shortness of breath and problems swallowing. The ironic part of all of this is that I had an eating disorder (anorexia and bulimia) for 10 years and all I wanted to do was to destroy my body.Now all I can think of is how to live. I don't know how things will go in a few weeks. I do know that I have been watching sunsets and sunrises, sitting outside just to feel the fall breeze, and just really trying to enjoy today. It makes me take stock of what is really important in my life. I don't mean to ramble on, I just felt like I needed to post this. Please feel free to e-mail me if you want. thanks, Deb
address: shadowjunior@worldnet.att.net
type: systemic (diffuse or CREST)
Date: 10/08/02
Time: 09:54 PM
My name is connie. i am still learning new stuff about whats going on with me. i could use your help this a depressing disease and i get very depressed need someone that somewhat understands too. its great to have a husband that will stand by my side but i realize not everyone can be as lucky, this is one good thing i see from my health problems it has seemed to bring us closer.
address: keshias@peoplepc.com
type: localized (Morphea/linear)
Date: 10/08/02
Time: 08:35 AM
I was diagnosed 2 years ago with Morphea. I had gone for a pap smear and I had mentioned to doctor that my stomach was thickened and hard. They did a biopsy and I was diagnosed with Morphea.I was put on steroids to help with itching but it has gotten worse. from belly button on down. In a circle. It's really thick skin and hard.My hands are also starting to be affected my skin has dry hard patches on top. I'm scared and not sure where to turn to right now. I'm also dealing with other serious medical conditions. I also have neurological disorders arnold chiari malformation type 2,hydrocephalus,syringomeliya and 2 shunts. I have been through 7 operations for this. I'm now 3 months post op from 2 of them. Between Morphea and my neurological disorders and only being 28 years old I'm dealing with alot right now. I need someone to help talk with to get some information cause not sure where to turn. I had been getting treated by my PCP for Morphea I couldnt find a doctor who specializes in Morphea. I'm from Ohio but willing to travel for a good doctor. If someone has any information for me please help Thanks
address: shadowjunior@worldnet.att.net
type: systemic (diffuse or CREST)
Date: 10/08/02
Time: 08:34 AM
I have tried to get help for my raynauds for several years. It seems i have found a doctor that really thinks something is wrong with me he is sending me to a rheumatologists next month because something is going on. my hands refuse to move and they go from cold to hot to cold as if i were puting my hands under hot and cold water. At night my feet will be cold and then a minute later i be sweating. it seems it goes to on extreem to another i don't know whats going on. my chest hurts and i have trouble swallowing. it feels like i have a knot in my throught that just wont go away. well thats enough can anyone help me on what i should say when i go to that doctor, seem to me from what i read they don't care what you feel, but only what the blood work says. Oh by the way i read that this is not a inherited disease. Well i have a feeling they are WRONG my mother died after fighting this for 23 years. i have a feeling that it can be passed to the child if the mother has the disease while pregnant. do write please.
address: bmowery@connectu.net
type: systemic (diffuse or CREST)
Date: 10/06/02
Time: 01:03 AM
Is there anyone who has taken interferon for lungs and if so, was ther any change-good or bad? Did you suffer any side effects?
Belinda
address: dollybhagat@yahoo.com
type: systemic (diffuse or CREST)
Date: 10/04/02
Time: 05:28 PM
My name is Dolly i live in India was diagnosed with scleroderma in 1988 was a very bad attack i went to the US for my treatment.Over the years my condition has improved tremendously, even though it hasn't been easy. i was on prednisone 40 mg a day for a long time and methotrexate. i was lucky i gave up prednisone 4 yrs ago have lost all the weight i had gained and more. My lungs are 52% capacity i have raynauds lot of deformity in both my hands, i don't work so its not very hard i have a wonderful family they have supported me in my fight against scleroderma now my doctor feels my disease has receded and i feel normal. i am a very positive person would love to help anyone who is going through the trauma of this disease.medically there is not much one can do but just think it could have been worse.
address: cynthiadtate@aol.com
type: localized (Morphea/linear)
Date: 10/04/02
Time: 05:27 PM
im a 23yr old and i have been ill since 1995, now that i think about it i spent 2 weeks in the hospital in 1996 and they didnt even know why. after doctor after doctor i now have morphea, ra with deformity in my right hand, a heart murmur, and migraine headaches. but one thing i can say is GOD has kept me. it was so many times that i wanted to give up because this is not an easy battle. i was blessed to have someone to stand by me. me and my husband i have been together for 4years and we recently got married on june2002. it feels good to have someone to receive you the way you are. its hard when all other people do is stare, instead of asking a question they might have. for a long time it was such a severe change in my looks that i didnt even want to go outside and be around other people. no one understands, they always tell you that you'll be alright, and/or they think that your faking something. i am so use to just keeping the hurt and pain to myself because they dont know were we are coming from. i also think that its hard for people to accept us because we might look different or maybe it because they just dont know. we have to be strong for ourselves and our health. live and take one day by day. i have not been taking any medications due to the fact im allergic to most. i only take medicine for my headaches. the morphea is covered over my face, arms, legs, feet, neck and back. i just accept it for what it is and if my doctor thinks that i need it i will take it, right now he says its in remission. so maybe we will try some skin lightners. but until then i just try to lookup and research any new information that i can.
address: pennygj34@yahoo.com
type: systemic (diffuse or CREST)
Date: 10/04/02
Time: 05:23 PM
Hello My Name is Ruby, I am 36 years old and was told 2 months ago I had SCLERODERMA, I remember that day so well I looked at the Dr. and said what doma (LOL) then he went on to tell me what it was. I started to get sick about 8 months ago and keep getting worse. I still don't understand what's going on with my body, everyday something changes. I went to so many different Dr. before someone finely told me what was going on. I have been working for Dunkin Donuts for about 12 years now and really loved my job, I just can't do it right now, Someday I hope to go back I miss the people so much. I love being around people. I have 2 boy's 5 and 19 (God has a great sense of hummer) Gill Jr., Branden. my husband is a wonderful man who is trying very hard to understand what is going on. My body hurt's so much and nothing takes the pain away, I itch a lot also. My left shoulder,arm,leg and right arm look just horrible and feels the same way. the Dr. out here have me on coalchcine, plaquniel. I have been taking them for about 2 months but thing's are just getting worse. I am scared but I am also a fighter so let's go scleroderma , this may be the hardiest fight I had to ever take on, not sure I am ready but I will put up a good fight. Well, I am here if anyone want's to give me advice or just talk please E-mail me. I have been so moved by the story's I have read here. God Bless to all and I will pray for a cure. Ruby
address: modsquadwv@yahoo.com
type: localized (Morphea/linear)
Date: 10/04/02
Time: 05:19 PM
My story is different than many others. I was involved in an auto accident in 1998 and broke the cartilage at several ribs. as the ribs healed and stopped clicking I noticed a small scar in the center of the area where I hit the steering wheel. As time passed it grew now it is the size of a youth football. I also have this same disfigurment in areas where the seatbelt held me and where I hit the dash and brake pedal. I didn't have a mark when the accident first occurred but now it covers most of my left side. It hurts as I type this letter because I have severe joint pain, intestinal problems, facial pain, neck and back problems. There is nothing that does not hurt me. People don't understand because with my clothes on I look like any other Joe on the street. Doctor's have diagnosed me with Reflex Sympathetic Distrophy, Lupus, Scleroderma, linear scleroderma, morphea, Eosinophylic Fasciitis, but since no one knows what causes these problems the woman that hit me, her insurance does not take responsability. My lawyer thinks we should settle for far less that my pain and disfigurment feels it is worth. I don't know why me, but I can say that with out a doubt this was a direct result of the trauma I received in that accident. My doctor says I definately have Morphea but when I mention symptoms that don't support his diagnosis he fails to put their mention into his notes in my medical records.
address: rainnwach32@aol.com
type: systemic (diffuse or CREST)
Date: 10/04/02
Time: 05:17 PM
hi. 4 months ago i lost my sister to scleroderma, lupus, and raynauds. She was only 36 yrs. old. She battled this crippling desease for 7 yrs. It was devasting to her and to the rest of the family. I sympathize with any one who has this desease and their families. May god bless all of you, and may a cure please be found. My mother who is 56 yrs. old has also been diagnosed with dermato myositis, which is also a connective tissue desease simalar to scleroderma. Upon request of my sisters doctor, we were all tested and thats when my mom was found to have this desease.
address: mvc9955@msn.com
type: systemic (diffuse or CREST)
Date: 10/04/02
Time: 05:16 PM
I have been suffering from scleroderma for about 6 years now. I have recently been reading about various stories from other suffers. I am trying very hard to live with the symptoms and it gets depressing sometimes..I am a mother of 3 girls. Jennifer is 21, Sarah is 19 and Kelly is 18(all in college!) I have learned that we all have to deal with what the good Lord have given us. Although I wish it were something different!! I truly enjoy reading your stories, wondering what the next bridge to cross is somewhat comforting, although everyone has different steps. Thank you all for your stories it makes me feel alot less alone. Mariann
address: kayesi53@hotmail.com
type: systemic (diffuse or CREST)
Date: 10/04/02
Time: 05:14 PM
Hi
My name is Caroline and i have had scleroderma since 1996.I am from a beautiful country called Kenya and as i write i am very humbled after reading the stories on this site.This is because, coming from a third-world country where medical facilities are not available,i think God is good for i have not taken any drugs for my condition since 1997.However after reading i realise i have diffuse scleroderma and my whole wrist and thumb is affected it is dry and parched.I have never seen a doctor since 1997 and this is due to my lack of financial capability.I do not know how serious my condition is now and if anyone out there knows of anyone who can assist me get medical attention it would be appreciated. I have two lovely kids and not knowing of the dangers, i gave birth to one when the disease was in its formative years.He is healty and i pray he stays that way.
address: skiing4life430@aol.com
type: systemic (diffuse or CREST)
Date: 10/04/02
Time: 05:13 PM
Hi I was just wondering if there is anyone out there who is in remission? or who has had any positive results to please email me!!! Please thankyou
address: marilyn.phillips@verizon.net
type: systemic (diffuse or CREST)
Date: 10/04/02
Time: 05:11 PM
Marilyn-64-I have had raynauds since 30 which went into scleroderma at about 58. Was told by a doctor there was nothing to help me and I went home and started looking for alternative treatments. I started chelation three years ago, which helped my raynauds and still have treatments. Started the antibotic treatment 9 months ago and am very pleased with both treatments.
address: M.MORENO@SBCGLOBAL.NET
type: systemic (diffuse or CREST)
Date: 10/04/02
Time: 05:09 PM
Hi! My name is Maria, and I'm 30yrs.old. I was dignosed when i was 24yrs of age. All i can do for now is hope and pray someday there can be a cure for all of us with these rare condition. Until then i just tske it one day at time, trying to fight as much as i can. There's just times were i just want to give up, But then again i turn around and see my little girl standing there. She's my little ray of sunshine, the one who keeps me hanging in there. For her i will fight these illness until the end. Has anyone out there thought of taking our stories to a TALK SHOW,I have. Have faith my dear friends, We should all come together fight these illness that is our troument. Let it not get to us, it easier said then done. Anyone who would like to share your story with me , I'm here a friend at heart. God Bless You,Maria
address: Smallfeather109@aol.com
type: systemic (diffuse or CREST)
Date: 10/04/02
Time: 05:08 PM
My name is Sally, I am 43 years old. My father passed away from Scleroderma 6 years ago. I recently went to the doctor, and they might think that I have the same disease. Could someone please email me to let me know a little more about this disease.
address: ruth_knoer@msn.com
type: systemic (diffuse or CREST)
Date: 10/04/02
Time: 05:07 PM
Hello. My name is Ruth and I am 38 years old. I was diagnosed with scleroderma June 2001. I had symptons 2 years before I realized something was really wrong. Raynauds was really working on my hands and feet. (I live in Iowa). My neck is tightening and I feel the changes is my hands as well. This has been an emotional roller coaster for me. I cry all the time. I'm still not sure where to start on how to accept what is happening to me. I have a hard time eating & swalling foods and drink lots of water. I am cold ALL THE TIME (even if it is 75 degrees outside) and I tire very easily. I have wonderful family and friends around me but I feel like they do not understand. I get the feeling that this is only the beginning of whats to come. Any suggestions?
address: theblan@yahoo,com
type: localized (Morphea/linear)
Date: 10/04/02
Time: 05:05 PM
Well I can't remember the first time I noticed the large scar-looking patch, I was some where around ten or eleven. I had no pain but just did't know what it was.Every time I ever had to go to the doctor, I would ask "Do you know what this is"? One doc asked me did I prop my elbow on my knee, others just said they did'nt know.I felt I would never find out what it was.Inside I felt maybe nobdy cares. As I grew older the so-called scar grew with me.I even went to a dermatologist last year in another town and said I don't know!Finally after not giving up, I decided to see another dermatologist.Immediately he gave me a biopsy. Later he determined it was morphea.It took me 20 years to find out.Most of my right leg is covered. Now I've made an ap-pointment with a rhemotoligist. My fingers are always swollen and I don't know why.they hurt too. The is quite devastating.
address: angelmae_8@hotmail.com
type: localized (Morphea/linear)
Date: 10/04/02
Time: 05:03 PM
Hello! I'm 23 years old and diagnosed to have a localized scleroderma as per biopsy. I had a lot of skin patches all over my legs and arms, and I had consulted a lot of doctors and always i was given a wrong diagnosis, even with leprosy. But I got the chance to see a good dermatologist and she had me biopsied and the result proved to be what i've got now. I'm under a good rheumatologist now but up to this day, i still don't have a clear idea of what this illness is. I tried to research about it and that's how i come across this page. I realized i'm not alonein my battle. SOme of my friends can't understand why i always feel irritable and always feel tired. I've been taking steroids for more than a year now, and methotrexate for almost a year. I could feel my body deteriorating and people seem not to understand my case. Well, me either. My doctor is silent about my case or about the possibilities that might happen. Please help me, enlighten me about this disease because at times i'm being surprised of how my body reacts and wonder if this is still part of the "package"? It's indeed a struggle not only physically but also emotionally. Thanks and May God Who is the Great Healer be with us always in our battle against this disease.
address: jlopezat7cities.net
type: localized (Morphea/linear)
Date: 10/04/02
Time: 05:01 PM
Hello, my name is Jessica Molina. I am 19 years old, and I have had linear Morphea for a year and 4 months on my right arm. It goes all the way up my arm, and to the middle of my back. I noticed about 3 months ago, when my son Isaac was just 2 months old a circle of white spots on the right side of my chest. I am wondering if it is going to spread all over. I really hope not. It never bothered me in the begining, except the way it looked. But lately, it has been hurting, and going numb, and feeling weak. I know there is no treatment that will take it away, but I know there is Jesus Christ, and he is the only healer that will completely heal you. I have had it prayed for, and even though it is not physically gone, but I know my God has healed me. Thank you for reading my story. God bless you!!!!
address: tmilyn@aol.com
type: localized (Morphea/linear)
Date: 10/04/02
Time: 04:59 PM
hi mystory is probaly familiar to some of you.I first noticed dark spots on my stomach and hips and wondered what I had done to bruise myself,but when more started appearing I was a little concerned.After several trips to the doctors I was finally diagnosed with scleroderma,that was about 5 months ago and I have learned alot since then about this disease I had never heard of.I am feeling great more spots keep appearing but I think it may be slowing down.I have seen a specialist who is recommending uv light and vitamen d therapy to my dermatoligist .I guess this is something that you just deal with as problems arise.I would like to hear from people who are going through the same thing as I am,although my family is wonderful I think talking with someone going through the same thing would be helpful.I have many interests including, gardening,reading,animals,anything outside.travel and spoiling myself,but mkost of all I love to laugh.take care !
address: kimbo21kc@aol.com
type: systemic (diffuse or CREST)
Date: 10/04/02
Time: 04:55 PM
My name is Kimberly Celestine, Diagnoised in 1989 at 28 years old. My symptoms were swollen hands and feet hardley making it day to day. I seeked medical attetion about a month down the line thinking I had just over done myself working. After a year of testing for everything under the sun they finally came back with a diagnioses. After which I was sent outside of my medical group for a second opinion. Also came back as the same. The two hospitals of docters were to work together to get me straighten out. They worked on a medicine regimen for me: 90mgs Prednisone,100mgs Imuran,800mgs Motrin, Eight days after the final diagnioses I was back at hospital emergency room. Stroke! They went on to tell my family to call everyone who needed to see me because I would not make it through th night. Needless to say they didn't have the last say. I pulled through went to therapy and brought myself back walked again in 7 months and returned to work in 3 years. Since then I have had many little flares but, life has been good to me. The diseases progress is really slow moving at this point.. However I lost a baby in 1999 due to High Blood pressure caused by the disease.