| 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: dalmatian10101@hotmail.com
type: systemic (diffuse or CREST)
Date: 10/05/01
Time: 04:50 PM
Hello. My name is Dianna, I'm 24 yrs old and my father has Scleroderma. He appears to be getting worse and it has really taken a toll on him. Mentally and physically. He used to be into everything. He worked out, rode his dirtbike, jogging, everything. He worked for many years at a mine until being forced by this disease, to retire. His life changed, and changed rapidly. Within a years' time, he had to retire, he lost 25lbs and he was little to start with, his hands don't work right and are swollen all the time, and he can't do anything vigorous like he used to because his lungs have been affected by this. He's about 5'10 and before he got sick, he was about 170 lbs. He only weighs 149.8 lbs now. I think he's even lost more. I just don't like it. In the winter his hands, fingers especially, crack open and bleed and they won't heal. He's tried everything from lotion to super glue to mend them, but the skin just can't bear the swelling. He sat in the house all winter last winter, alone, and bored to tears. I just can't bear to watch him be so sad anymore. I went to his last doctor's visit with him, and the doctor was, to say the least, discouraging!!! He made me mad! He gave my father no feedback, and very little hope. I'm writing this in hopes that someone will read this and get back to me. I'm really searching for ideas, ideas that will keep him busy and keep his mind off of this painful and nasty disease. It's just hard to watch someone who used to do everything, be able to do nothing of the fun things he used to do. If anyone out there reads this and has this disease, could you maybe write to my e-mail address and give me some suggestions. Tell me what you do to pass the time. Tell me your fun hobbies. I'm at my wits end. I can't think of anything for him to do when he's sooo limited. Anything would be helpful. He's so lonesome. If you'd like to meet him, or contact him contact me and I'll let you know how to reach him. I would appreciate greatly anything you have to offer. I thank you sooo much.
address: icolleenb2@aol.com
type: localized (Morphea/linear)
Date: 10/05/01
Time: 04:49 PM
Hello, My name is Renee. I was recently diognosed with Morphia scleroderma. I am waiting for blood results to see if it has effected any organs. I am a little scared. I only have a patch on my torso, right under my breast, about the size of two hands. it feels tight and aches somtimes. I feel very moody most of the time. I have 3 children ages 13, 8 and 6. I wish I knew more of what to expect. I am greatful that there are sites like this, for people to share. Thanks for reading this.
address: jrscats@webtv.net
type: systemic (diffuse or CREST)
Date: 10/05/01
Time: 04:46 PM
I am 54 y/o RN with limited scleroderma (CREST). I have had Raynauds since age 19 and intermittant figertip ulcers since age 32. Recently i have had 2 fingertip amputations for osteomyelitis (1) and protrusion of the bone through the end of the skin (1).. I would like to email someone with similar surgeries and/or someone who has avoided amputations by the use of Hyperbaric Oxygen or medications or____? I have been on a calcum channnel blocker (Cardene) for 16 years and have had 4 digital sympathectomies. I wish to continue working and I remain searching for answers. Thanks, Judy.
address: rsyro@netscape.com
type: systemic (diffuse or CREST)
Date: 09/29/01
Time: 11:11 AM
I have been working with different types of essential oils and with varying degrees of great relief. They do not affect my medication and since they are natural just go through your body. Some thin your blood so read up and good luck. I have also been unable to find a doctor that would recommend or comment positively on natural oils, I have to believe that it is because it is a danger to their profession... because some of the relief i get they cant accomplish. Please note that these oils have varying degrees of worth when it comes to medical usages, and while most of them are all pure, it is the pureness of what is left of the medicinal value that should concern all that use it for just that. A good guess is that the more expensive are the more potent..... you will have to shop around, even online, since i myself have found many oil sites, and many good and weak oils. Like i said, the more expensive the more likely it is less the "trash oil" but the real thing.
All the best, Love you.
address: jbrissler@yahoo.com
type: systemic (diffuse or CREST)
Date: 09/23/01
Time: 02:17 PM
address: jbrissler@yahoo.com
type: systemic (diffuse or CREST)
Date: 09/23/01
Time: 02:07 PM
Hi! my name is Beverly, I am 44 years old and have a wonderful husband, two boys and the most wonderful family anyone could ask for). I was diagnosed with Diffused scleroderma and Raynauds in 1995. It took a few doctors to finally diagnose me with correctly, but just to conferm the doctor's diagnoses in Oklahoma, my Dad took me to the Scott & White Clinic in Temple, TX. They also confermed the diagnoses of diffused scleroderma, he also added a comment that my Dad and I didn't except, he (the Doc.) said my life expectence is about five years. My Dad and I just did not accept this. You see I come from a family of very determed family and who also has a very strong faith in the Lord above. You see shortly after I was diagnosed, my wonderful Mother told me the the Lord had spoken to her and said I was going to be allright and not to worry. I don't know about you, but when the Lord and your mother both tell you are going to be allright, I tend to believe it. I will not say it has been a great journey, no it hasn't, I have been very sick, well you know the problems: Hurting swollen, tight hands,arms, feet, chest, and legs. Also, gastro problems, esophagus, fatuge, depression. And now, the main reason I am writing this note. For the past two years I have been animach. The Doctors cannot understand why, they just keep having me do that wonderful test, I am sure you know the one (the dreaded Hemicult test, which by the way always comes back normal). And recently I have also developed something new, which is, I cough a lot at night. Is there anyone out there who has anemia and also who coughs at night, please contact me. Also, I am in Oklahoma and would like to start a local Scleroderma Support Group. Please, if you have any information that may help me to start this group or are in Oklahoma and would like to help, please E-mail me. God Bless You All and if you have any questions about diffused scleroderma , please contact me ane between all the family scleroderma people on the net. and mysely maybee we can help you.
Again, God Bless you all.
address: ronda@xmission.com
type: systemic (diffuse or CREST)
Date: 08/31/01
Time: 07:43 PM
I am experiencing a terrible "burning" sensation on my upper back. It feels like I have been scalded. Along with this is very sharp periodic pains, like needles piercing me 2 to 3 inches deep. My back itches constantly. I don't feel any tightness, nor is there any difference in color or texture. This has been going on for over a month and I am going crazy with it. Has anyone else had this and if so, what didi you do? I have had Scleroderma since 1992 and have been very lucky to have had problems that aren't too serious yet. Help with this would be greatly appreciated.
address: amy@martinglass.com
type: systemic (diffuse or CREST)
Date: 08/29/01
Time: 02:47 AM
I am the mother of four children. My second daughter, Raychel, is 16 years old and has diabetes and recently diagnosed with scleroderma, which form is unknown at this date. I am desperate for someone to talk to. I have e-mailed several people from your site - with no response. My husband is in denial and will not accept the faith of diabetes, much less scleroderma. I need some support, stories, STRENGTH, from another parent, child my daughter's age, anyone.
I feel I should do more, ask more, do more, do something, but I am lost. I have read all there is to read on the internet, but that is so impersonal. I feel there is nothing more real than hearing real stories or support from real people- doctors not included. I am at the point, that I don't even trust what they tell me. I feel so alone in this fight against this disease with no real place to turn. I know I MUST remain strong for my daughter - who has limited knowledge about this disease, but I don't know where to go from here.
Please e-mail any information, doctors information, treatment or therapy information, support group information, anything. I live in a small town - Waxahachie - 30 miles south of Dallas - and the closest support group meetings are in Houston - almost 2-3 hours away. I need a "neighbor" close to home to communicate with, that has first hand knowledge of my pain and frustration.
I hope and pray for everyone that reads this message. I always hope everyone gets the bumper sticker offered on this site "I have scleroderma" or the bumper sticker on the scleroderma.com site that says "stop scleroderma".
Amy Ortiz amy@martinglass.com
address: Rainlover067@aol.com
type: systemic (diffuse or CREST)
Date: 08/15/01
Time: 12:54 PM
Hello, My name is Karen. I have been to so many doctors and specialists, that they still can't give me a straight answer. I have 2 large morphea sites on my stomach and breast. They have been biopsied and that is what they came back as. Morphea. My sed rate is in the 90's, and I feel just awful most of the time and getting worse. My rheumotologist doesnt want to give me any medicines until it becomes systemic. The morphea site on my abdomen hurts deep inside and especially in the mornings, I wake up with an awful burning deep, deep inside my stomach. Not like heartburn at all. Deeper. I was wondering if anyone else has these same symptoms? My eyes are starting to become dry but could be from the oxcontins I am on. Both my hands and wrists are getting weaker everyday and they hurt worse each day. I am 34 and a wife and mother of 2 beautiful children and I am so scared. My dr. keeps giving me pain meds, but even that is a fight. I am in pain most of the time either my stomach or something feels like it is growing in my back. I keep telling them and they do nothing. I have had these sypmtoms for almost 4 years now, and the only medicine they have given me is the pain meds. I am getting worse each day and I can feel how sick my body feels inside. I only have 1/4 the strength I used to in my hands/arms. I have thickening spots all over my body. The tops of my feet, my legs and all over on my stomach. There is even one right under my ribs, under my heart. My hands have thicking between my fingers and I get sores on my tongue. I can't drink pop anymore because it burns too much in my throat. Sorry this is so long, but this site is very helpful and I would really like to hear if these symptoms are Crest. My rheum doesnt think I even have scleroderma right now even with all these symptoms, but my regular dr. thinks that I do have it. I definitely have morphea, and my dr. doesn't understand how bad the morphea hurts underneath the skin. They burn and ache. Is it normal for them to hurt me so badly deep under them?? My e-mail address is: Rainlover067@aol.com if anyone could offer any friendly advice. This site is wonderful and it is so sad that they do not know very much about all these autoimmune diseases. I just feel so badly and down. My Rheumot. even told me I was a hypocondriac, which I am not. I am very scared that there isn't anything they can give me to at least help my symptoms. I feel so hopeless. My children are only 13 & 4. I want to live to see my grandchildren some day and now I am afraid that wont happen because I am getting worse everyday with no hope in site. I am worried and confused and have panic attacks more often. Any advice would be greatly appreciated, and god be with each and every one of you that has this awful disease. Thank you, Karen Askins
address: DJspaceturtle@yahoo.com
type: localized (Morphea/linear)
Date: 07/11/01
Time: 03:14 PM
My name is Robert Young and I recently turned 27. I just graduated college with a degree in music composition and audio production. I play bass, drums, guitar, and DJ on the radio. I was first diagnosed with linear morphea when I was 21. In all this time I've yet to meet anyone with morphea. I am anxious to get out of my isolated bubble and exchange stories with anyone who is willing. I think the hardest think about this disease is that so little is understood about it. Cause and cure unknown. I'm just trying experience life as fully as possible while I'm still here. This disease has definitely given me a wake-up call to what's really important. Carpe Diem! PEACE, brothers and sisters
address: Rainlover067@aol.com
type: systemic (diffuse or CREST)
Date: 06/28/01
Time: 03:03 PM
I am a 34 year old female, and have recently found out that I have CREST. I would just like to add some friendly advice. I have been following the readings of Edgar Cayce, and have done some of the treatments in his books, and I must say they are truly healing. I massaged castor oil in my hands, and the pain deceased almost immediately. I am also now doing the castor oil packs on my stomach and back. His work is truly a gift from God. He was a true healer, and Scleroderma is even in his readings. Please consider trying them. The castor oil is miraculous. Thanks for listening. Peace.
address: lacy@oz.sunflower.org
type: systemic (diffuse or CREST)
Date: 06/26/01
Time: 10:17 PM
MY NAME IS SHERRY AND I HAVE CREST. I RECENTLY WAS SENT TO A RHEUMATOLOGIST. HE KEPT ASKING ME IF THE SKIN ON MY FACE WAS TIGHT. I KEPT TELLING HIM OVER AND OVER THAT IT WAS JUST DRY. HE MUST HAVE ASKED ME FIVE TIMES OR MORE. I THINK HE SAW SOMETHING THAT I DIDN'T. ANYWAY AFTER LEAVING HIS OFFICE IT HIT ME THAT MY FACE DIDN'T FEEL DRY IT FELT TIGHT. LIKE IN THE WINTER AND YOU WASH YOUR FACE WITH SOAP. IS THAT WHAT IT FEELS LIKE ON THE FACE? I CAN'T BELIEVE I DIDN'T REALIZE IT BEFORE NOW. I THINK WHEN YOU LIVE WITH SOMETING FOR SO LONG IT JUST SEEMS NORMAL. I HAVE HAD IT OF THE ESOPHOGUS FOR EIGHT YEARS SO I WAS FEELING PRETTY GOOD ABOUT IT NOT SPREADING. I WOULD APPRECIATE ANY FEED BACK ON THIS. THANKS SHERRY
address: kate71620@hotmail.com
type: localized (Morphea/linear)
Date: 06/18/01
Time: 03:01 AM
I was diagnosed with scleroderma in 1981 when I was 21. It started as a greyish/whitish patch on my forehead. I figured it was from hair removal cremes. It thickened and turned yellowish/orange. It would hurt when I bumped it. It is the length of my forehead to to top of my nose and into my scalp about an inch. The hair fell out where it grew. I also have a patch on the top of my head and the hair is gone. I try real hard to forget it's there. I used to try to cover it with makeup, but finally gave up. The doctor then said the two spots may eventually connect, but it hasn't, and it's been 20 years. The skin seems to have regained some of its normal softness. When I think about it too much, I become overwhelmed with worry that it will progress and attack my organs. The doctor said 20 years ago that the localized does not progress to systemic, but I still worry. Does anyone out there have both kinds? I haven't asked a doctor about it in years,and I'm surprised no doctor asks me about it. Does anyone know any treatments for it? I read long ago it could be related to a vitamin difficiency, and I was on a starvation diet in high school. But no doctor has told me that. All the doctors did say is they don't know what causes it or how to get rid of it. Kate kate71620@hotmail.com
address: akunzman@aol.com
type: localized (Morphea/linear)
Date: 06/05/01
Time: 08:00 PM
I was diagnoised with Morphea about a year ago. It started out like a black bruise and started to indent. I had been taking Metabolife and somehow I feel it is connected. At least thats what I want to blame it on. I would like to hear from anyone that has found a treatmeant that has worked or helped in any way. My email is Akunzman@aol.com
address: dplaxe@juno.com
type: localized (Morphea/linear)
Date: 05/27/01
Time: 06:27 PM
I am writing this to hopefully share some information about the possible causes of Morphea (Scleroderma morphea) as well as my personal experience. I was diagnosed by my dermatologist about 5 years ago. At first she had no idea what the bruise-like lesions on my leg were. After performing a biopsy, the lab results confirmed that it was Morphea. She did some blood testing to make sure no internal organs were affected and when everything came back o.k. she sent me on my way saying that no treatment was available to stop the progression. A while later after returning from a conference on dermatology she had told me that they had done some research to suggest that there could be link between scleroderma and Lyme Disease. That was interesting to me because I did suffer from unexplained fatigue for some time prior to that. I agreed to be tested for Lyme disease (even though I was not sick at the time) and much to my surprise the test came back positive! At that point I was able to remember back to when I had first noticed the skin lesions. I was very young (4/5 at the time) and was very sick with a high fever and bed ridden. My pedeatrician had finally decided to put me on antibiotics as a last resort before hospitalizing me for further testing. We now believe that the antibiotics were enough to begin to treat the Lyme but were not a long enough course of treatment to completely treat the problem. A short while after this whole incident had occured the skin lesions had started. The first one was on my right ankle and for a while it seemed to stop there. Years later I noticed that I started getting more of the spots on the same leg. This was the point when I had the biopsy done. After the results had indicated Lyme Disease the Doctor had put me on antibiotics for about a months time and rechecked my Lyme titer. The titer had gone down significantly. Some people might think that this was simply a coincidence but once I was treated for the Lyme disease the Morphia stopped in it's tracks. Since that point I still have the lesions however they have gotten a little lighter in color and I have not gotten any new spots in the 5/6 years since the treatment. I am happy to report that I never had any symptoms (aside from fatigue) indicating the scleroderma had affected anything aside from my skin. I hope that this information is a help to someone. I also read on one web site that Addison's disease can cause skin problems very similar to morphea. You might find that researching that disease might give you the answers you are looking for. I had no idea until I found this site how many people are affected by this disease. I have never met anyone else with this problem or even someone that has heard of it! If anyone is aware of any treatments to correct the discoloration associated with this disease please let me know. I suppose I should consider myself lucky that the only reminder of this disease is someone asking me how I got all of those "bruises" on my leg or if my boyfriend has been hitting me!
address: chelseayrose@yahoo.com
type: systemic (diffuse or CREST)
Date: 05/24/01
Time: 10:42 PM
I'm not sure how to start this quest. Right now I'm confused, lost and not sure exactly what to think, feel or expect. I'm 32 years old, and have recently gone to the Dr's for a long over due visit. My fingers were losing color and turning white. first it was just the middle finger, but now it's all four on each hand. the numbness has been going on for over a year now. and it's also affects my toes as well. I have had ulcers on my toes but not on my hands. anyways...a friend at work begged me to go to the dr and check into this...I did, because I started getting ache thru the joints of my hands, wrists, elbows, fingers. my hands swell up and the pain is unbareable. that I can't even lift a glass to drink. Well my Dr told me that I have scleroderma. And personally I didn't know what that was, and she didn't have alot of knowledge about it either. So like anyone else...I started to research it. And I have to tell you, I'm shocked. I just quit smoking and it's funny how something like this can make cold turkey sound good. Well what scares me the most is that there are alot of other signs of this disease that I have as well. I have difficulty swallowing always feel like I'm gagging. very dry irratated tingling skin. the that drives me insane. A cough without a cold. poor facial skin, with dryness, and red spots, tight feeling. problems with heartburn, and my limbs falling asleep and not being able to lay down, or sit to long. without feeling the tingling. At frist I just wrote most of these off to smoking. But now I'm wondering. I am scared, and the waiting to find out the answers to all my questions is not going over very well. I am scared, and I want to know how this disease is progressing, how long I have been with it without knowing, and how serious is it, and if what I am going thru will get worst. I wish I had someone to talk too, someone to help me adjust to this. I'm a mother with young kids, and I can't image that I won't be able to continue being the active mom I have in the past. I feel like I am fighting something that I can't see, and it makes me angry. The joint pain is getting worst, and I can't seem to control what's happening to my body...I don't know if I'm ready for this...I sorry for such a confusing letter..thanks for listening...
address: revjim@netINS.com
type: systemic (diffuse or CREST)
Date: 05/19/01
Time: 10:29 PM
hello, my name is Glenna Bisher my mother Agnes Miller died April 7 2001 of scleroderma. We only found out 6 months ago that is what she had. My mother was 69 years old,6 years ago she had breast cancer and beat that.About the time she had breast cancer she went to see a specialist for her body was itching the specialist gave her some cream and said it was all in her head. Now we know that was caused from her disease if they would known or told her of her disease maybe she could have beat this before it was to late. Please let me know if this disease is hereditary or more information on this. We live in a small town and the doctors did'nt seem to know to much about it or they did'nt want to go deeper since my mother was on welfare. We watched our mother die of this and it is a very hard way to die. Thank you for listening to me .I hope I hear from someone Glenna Bisher p,o, box 204 Menlo, IA 50164
address: Kelseyt7@cs.com
type: systemic (diffuse or CREST)
Date: 05/19/01
Time: 10:28 PM
Hi. My father was diagnosed with schleroderma in 1996. This disease is very new to our family & we don't know that much about it. So far, my father has trouble with his hands and joints. He is currently disabled. This has been very hard on him because he has always been a hard working man. If you have any information on this disease or would just like to talk please feel free to email us. We would love to hear from someone who could give us some incite on schleroderma. Sincerely, K. Thompson
address: silly_dog524@msn.com
type: systemic (diffuse or CREST)
Date: 05/19/01
Time: 10:27 PM
My name is Kam, I will be 31 in May this year. I am a college student, studying Theatre Arts. I will recieve my degree in Directing and Dramatic Writing. I was diagnosed with Scleroderma about two years ago. I also have Fibromyalgia. These stories break my heart, and it is so strange when you think that your pain is unbearably worse than that of someone else's, you are wrong. In about 1992, I was admitted into a hospital for severe abdominal cramping. It was so painful, that I could not even walk. Every doctor that came into the room, treated me as if I were lying, because due to fault of their own, they could not figure out what was wrong. I was mis diagnosed several times. One doctor told my parents that I had Pelvic Inflamitory Disease. He came to this conclusion by giving me an unauthorized exam while I was heavily medicated on demoral. He was wrong to violate me like that. Another doctor decided that it was my gall bladder and preped me to have it removed. He too was wrong. Best, Kam Hervey
address: yberrio@msn.com
type: systemic (diffuse or CREST)
Date: 05/19/01
Time: 10:25 PM
Hi, my name is Yolima, I have 34 years old, a daughter and a wonderfull husband who are the lights of my life. I live in New York, and since Nov. 2000 being diagnosed with diffuse Scleroderma, but I think I had it since 1997. For the same reason that it is very difficult to discover it I was misdiagnosed and treated for Asthmatic bronchitis, Arthritis, Asthma, and then rheumatoide arthritis. I went to different blood test,X rays, Galium Scan, MRI, but never anything unusual came out, The Pulmonary Doctor back then told me that all he saw was some scarring in my lungs, but he says that it was nothing to worry about that it seems it was from and old pulmonary problem when I was a child. (I don't remember any problem with my lungs as a child, though) meanwhile I was taking pain killers and went to work as usual. It was in January 2000, when I first felt the seriously it was because I went to open something at work that needed for me to bend my knees and I could not because they where swell up like the triple ocause I'm glad I found you here it makes me feel good and to see all the pictures I said whoa! that is a big family and I want to be part of it. Can I? please :(
address: Cadenza65@aol.com
type: systemic (diffuse or CREST)
Date: 05/19/01
Time: 10:24 PM
Hello! I am 35 year old female. I am a professional violinst and work as a payroll administrator 3 days a week. I am currently being tested for Scleroderma. My rheumatologist's initial diagnosis is that I do have it, but will wait for a conrete diagnosis pending the outcome of blood tests and a skin biopsy.
The question I want to throw out there is: Has anyone been diagnosed with SD and had negative ANA levels? My first set of blood test from a hand specialist (I thought my carpal tunnel had come back) showed negative ANA. It is my understanding that ANA levels are almost always positive in SD.
I have reddish-looking rashes on the inside of both of my lower arms & lower legs; brown splotches on top of my hands; stiffness and swelling in my fingers, hands, wrists & feet; shiny brown skin on my chest, feet & upper thighs; a large patch of brownish-yellowish on my upper arms, as well as being very tight skinned there and on my lower arms, legs, toes, feet, ankles, fingers & hands. My fingers, hands, wrists, upper arms, ankles, feet & toes ache ALL the time. My elbows pop all the time, too. I itch all over all the time and have shortness of breath sometimes, especially when I'm overly excited or angry.
Would love to hear from anyone who is/has experienced the same problems. Feel free to email me.
Cheryl
address: cbaldwin37@home.com
type: localized (Morphea/linear)
Date: 05/19/01
Time: 10:23 PM
I have been a very active adult, walking 4 to 6 miles a day and loving exercise. Last summer my right ankle started swelling, and by December my entire right leg was covered with dark red blotches and hardening of the skin. A naturopath thought that the condition was caused by eating too many carbohydrates and not enough protein. I disagreed with this, and finally went back to more traditional medical professionals. My regular doctor tested me for rheumatoid arthritis, lupus, scleroderma, and lyme disease, and all tests came out negative. A dermatologist took one look at my leg and said "morphea." So far I have had 9 PUVA treatments with no noticeable improvement. I'm told that the PUVA treatments are more to prevent the spread of morphea, and it may be 10 years before it subsides enough to make my right leg look like my normal left leg. I lack the energy I used to have, my foot itches and burns, and my leg throbs constantly. Advil helps sometimes. When I reported this to the dermatologist today, he thought it interesting, but didn't have any suggestions. I guess I have to live with this and the reduced functioning. The first I had ever heard about morphea was when the dermatologist mentioned that I had it. I'm hoping I can learn more about the condition through this www site. Christine
address: Tmrrwsnglbpbaker@aol.com
type: systemic (diffuse or CREST)
Date: 05/19/01
Time: 10:21 PM
My name is Pam and I am 50 years old. I was diagnosed with scleroderma in 1987. They told me then that my life expectancy was 7 years but I am still fighting. The scleroderma has caused many other health problems but I refuse to give in to it. My family has adjusted well to the fact that I am not the person I was. I have 2 grandchildren that are the light of my life. I love to read Christian books, my flower garden and my golden retriever "Abbe". The scleroderma has caused me to have heart problems, problems with swallowing, I have lost most of my own teeth, I have sleep apnea, I am diabetic and rheumotoid arthritis but the only way that I will stop fighting this horrible disease is for the Lord to take me home. I know someday there will be a cure and that is what I am waiting on. God bless and keep each and every one of you out there with this terrible disease and remember we need to support each other along with our families and friends.
address: Southerngrl20@hotmail.com
type: localized (Morphea/linear)
Date: 05/19/01
Time: 10:19 PM
I would just like to say that this is one of the most frustrating things I've ever had to encounter in my life. I'm 23 years old and I've had this mess since I was 8 years old. I'm covered head to toe with dark spots, most recently it has begun on my face.. As a college student it is sometimes hard to deal with. I don't really tell anyone except close friends or boyfriends. I rarely think about the fact that I even have something because there is nothing that can be done. Doctors never know anything and it became pointless to hear the same, "Yep, it's still there," year after year. I now have blood work done every Spring in order to make sure it is not systemic and there is no arthritis or lupus. My grandmother had a blood disease and my father has lupus, I have scleroderma. That's quite odd. Anyway, I don't let it get me down. The only pain I ever encounter are the leg cramps that I've had since I was very young. Upper arm cramps have now begun, but BenGay and a massage from a good friend takes care of it for me. Sometimes I want to cry because the pains are so bad, oh and the fatigue!! That's what drives me the most insane! I'm so unbelievably fatigued all the time and that is sooooo hard being in graduate school. But all in all, it's part of me....
I'm from Louisiana, and if any of you have heard what's going on in South La. with Scleroderma running rampant, it's quite odd.
If any of you ARE from Louisiana and would like to talk through e-mail with me I would like that. I am interetsted in meeting people in my area with Scleroderma. The only woman I ever knew with it passed away in 1993. I really would like to meet some people with what I deal with. I think it would help :)
Thanks and good luck to all of you who do deal with so much more than I will ever encounter in this battle. My prayers are with you ALL.
address: kidscloset@amigo.net
type: systemic (diffuse or CREST)
Date: 05/19/01
Time: 10:18 PM
Do I have scleroderma?????
I am a very healthy(until recently) 38 year old woman with 2 small children and my own business. I exercise every day alternating weights and running and am on the go from the minute I get out of bed until my head hits the pillow at night. About 3 months ago I began to experience extremme pain, swelling,& sores on my hands. I knew I had Raynauds for about 10 years but never had this kind of problem before.
I have been to 3 doctors now and had all the blood tests and everything is negative. I am soooo frustrated I can't stand it. My index finger on one hand seems to be twisting. I have white splotchy skin on one arm(gross). I have difficulty swallowing and have very dry eyes. My hands continue to swell so much that I can't hardly button my own pants let alone help my 2 year old. I am really slow getting up in the mornings--I used to gladly get up and run or do my workout. Now it takes an act of God it seems. I am able to exercise and I feel better after I'm done although some days I have trouble holding onto the weights and my hands swell more after.
>From what I have read so far, most people go through alot of doctors before some cause is pinpointed. How do you do it? I just want to throw in the towel and pretend it's not happening--maybe it is in my head! Compared to an earlier time in my life when I was married to an abusive alcoholic, I really don't have any stress. I left a stressful job a little over a year ago and only have your run of the mill daily stuff so what' up with that? I can identify with many who have posted their stories here but I wonder if I even belong here?
Would love to hear from others in this situation or those that started out this way. I don't want to contribute to a problem but I'm not even sure I have one according to the experts!!!!
My thoughts and prayers go out to all of you who are struggling with more advanced and more severe symptoms. It is extremely difficult when you look fine from the outside. Thanks for listening....I feel better now!
address: bbbruce90@hotmail..com
type: systemic (diffuse or CREST)
Date: 05/19/01
Time: 10:16 PM
I was diagnosedwith Scleroderma.The Raynauds Syndrome made my fingers and toes turn blue and crack. My doctor was upset about how advanced my condition had progressed. He placed me on massive doses of Prednisone and Culpramine. My weight ballooned over 100 pounds.Old friends did't recognize me. The mood altering affect strained my relationship with loved ones. Awful calve pains denied me sleep. One wonderful day my doctor told me at last we werte in a state of remission. He began to reduce my Prednisone and the swelling began to subside.However,I was still 100 pounds overweight and practically immobile. I was also using Percoset because of a spinal injury. One day my husband said enough is enough no more Percoset. No more surgery its time to get moving. You know what I do for a living, now we'll try it my way. He took me to the gym and began to work me out with weights. My weight fell 50 pounds from the workout and diet my husband Bruce suggested. My doctor approved wholeheartedly. I was never stiff or sore because he worked me out so gradually. I work out 3 days a week, I no longer need a cane. My calf pains are gone. I no longer need Percoset. My fingers and toes are pink and healthy due to improved circulation. Raynauds Syndrome is not visable. The Rheumatologist said becauseof his medical knowledge and medication, my attitude,determination and willingness to follow instructions and my husband 's personal training we are keeping Scleroderma at bay. My doctor said so little is known about the disease we may be on to something and should let people know. My husbands website is http://www.bodiesbybruce.com
address: athomas@utinet.net
type: systemic (diffuse or CREST)
Date: 05/19/01
Time: 10:15 PM
My nameis Alesia I have Crest Scleroderma, Iam being treated @UNC Chaple Hill N.C. if others with my type, would the best care anyone can recive ,request,Dr.Beth JOnas ,Nick Shaneen,without their support I Feel I would have given up great DR.s can give you hope to keep going, Athomas@utinet.net
address: keisha_g_@hotmail.com
type: localized (Morphea/linear)
Date: 05/19/01
Time: 10:14 PM
my name is lakeisha and I am 20 years old and I have Scleroderma I was dignost about 6 months ago I had simptoms like swelling of feet, skin truning darker, and when i found out I didn't think much about it, and my thoughts were" nothings going to happen to me" and then in periods of time I had blochy skin, pegment on my chest and it scares me because the doctors are perscribing me medication and the side effects are more harming than good. It scares me because I am very pretty and now sometimes I feel like a monster no one can see the physical scares becasue i hide them, but now i think about when the summer comes i can't hide the scares as much then, and it hurts me because the medicine that the doctors want me to take I won't take and they say well if you don't then my guess is in about 5 to 6 years I will probably dialosis or something. I think and I cry almost every night because I am so scared of what might happen next I don't want to die I am only 20 years old I am too young no one else my age has this why me? is this god's punishment to me? I hate this so much this
address: hhealy@shawneelink.net
type: localized (Morphea/linear)
Date: 05/19/01
Time: 10:12 PM
My name is Heather Healy and I am 18 years old. I am a senior in high school in Southern Illinois. I like to ride horses, and hang out with my friends. I was diagnosed with Morphea Scleroderma when I was in 5th Grade. It all started out with what my mom and I thought was a sprained ankle. Then my arch dropped and my foot started to turn inward. Then there we yellow looking patches that appeared on my skin. We didnt know what was happening. We went to many different doctors who only thought it was a rash or said I looked like i had been burned. I have been on many different medicines that never helped it at all. I have been to wide ranges of doctors. Anywhere from dermatologists, medical doctors and podiatrists and orthapedics. When I first got the disease, I was afraid that I was going to die. I went and had blood tests every month at the St. Louis Children's Hospital to make sure that my organs and my blood count was ok. My Scleroderma is localized. I have a few patches on my right hand, up my right are, all down my right leg, it messed up my right foot and deformed it a little, but that was corrected through surgery. I also have patches of it on my back, stomach and down one side of my left leg and a little patch on my neck.. I was very ashamed of it and I never wore shorts. My friends didnt really notice it at all, but I explain to anyone who asks what it is. When I was in 7th Grade there was one girl in my class who told everyone in the class that I was going to die. That was the most upsetting thing that has ever come out of it. I made sure that everyone knew I was ok. Now, everyone who knows me, knows what it is and I am accepted. There are still times when I am really ashamed, but it has gotten so much better in the past feAlthough it is still there....I dont let it bother me like it used to.
address: enterprise32@juno.com
type: systemic (diffuse or CREST)
Date: 05/19/01
Time: 10:11 PM
I am writing for my mother Lillian, who was diagnosised with scleroderma and raynauds about 20 years ago. She has suffered for a long time and is still suffering. My mom has scaring on her lungs burning in her chest, problems digesting her food and has had to be on oxygen for a time. She has been seen by more doctors than I care to count. and they all say the same thing. We have done all we can do We don't know what to do for you. One doctor even went as far as to tell her that it was all in her head. The worse time for her is at night. She has the heavyness in her chest and the buring sensations as well as aching in the top of her head. It has been hard on my family but we all pull together to support her. I know sometime she gets lonely because she feels like she is the only one out there going through this. She is looking for a email penpale /support someone out there who has gone through this or is going through it. please feel free to email her at enterprise32@juno.com thank you her daughter deborah
address: Crushing@home.com
type: systemic (diffuse or CREST)
Date: 05/19/01
Time: 10:09 PM
Picure this, Phoenix ,Arizona ,September 1993, Mother and daughter having lunch on a balmy afternoon. Mary is drinking her iced tea and notices that the tip of her middle finger is white. She holds her hand up to show her Mom her funny looking finger. Mother is shocked at such a strange thing." You should get that checked out', she says. Yeah, oh yeah. San Clemente, California, October,1993. I am sitting in the Doctors office finally getting the diagnosis I should have a year ago. I have Crest Syndrome, I will not die from it he says. I thought I had diffuse at first! Since that fateful day I have had countless finger ulcers, tons of maalox, a little prilosec, swelling of my hands and feet , several months taken off from work, and drawers full of gloves. The doctor originally put me on Adalat but i found that it had made me feel very sluggish so i decided to stop taking anything until I absolutley had to. I have always loved to exercise. Especillay running and swimming. I finished several triathlons and 2 marathons from 1984 to 1992. After 1992 I just continued running. I am not a fast runner. I am not a winning triathlete either. I just love being outside and exerting myself, enjoying the comraderie amoung fellow runners and swimmers alike. i have never won a race and never will. I am one of those people you see in back of the pack. It does not bother me in the least. At least i get out there and give it my all,well, I think I do. Oh yeah, I am also the only, and I mean only one running in 75 degree weather with gloves on! I am also the only one wearing ski gloves to ride my bike! Earlier this year I suffered from something called a Molar Pregnancy. Ever heard of it? I did'nt think so. It is a pregnancy that develops only placental tissue and can become cancerous if not removed completley form the uterus. The way to make sure that all the tissue is gone is a standard HCG test or blood test for pregnancy. After a Molar Pregnancy you levels should go down to below 5 within 6 weeks. Mine did not. I was treated with a chemotherapy drug called Methotrexate. I had 2 shots once a week for 9 weeks. I had to be taken off after that because my liver tests were coming back to high to justify keeping me on the drug. Liver damage is permanant. I can live without my uterus. I am 37 years old 150 pounds , mostly muscle, I hope. I have been Married for 7 years and my husband and I are going to try to get pregnant again in October. I can't help but wonder if the scleroderma had anything to do with the molar pregnancy. I am a flight attendant but I find work hard sometimes because of the cold. I wear my gloves constantly, and recieve numerous remarks from strangers about my gloves. I am very sensitive about my Raynauds. People just dont understand do they? I wear my gloves everywhere! Just trying to save a little tissue here!!! I have come to the conclusion that if I try as hard as I can to see how lucky I am to be alive I can overcome anything and acheive my ultimate goal(for now), The Ironman Triathlon in May 2001!!!! P.S. I am pretty darn sure I will be the only with gloves on!!!! I will need all the help and support I can get! I would love to hear from you all!
address: alg_66@hotmail.com
type: systemic (diffuse or CREST)
Date: 05/19/01
Time: 10:08 PM
My mother recently died of Scleroderma. She was diagnosed with the disease in 1996. She suffered from Raynaud's Phenomenon, which would cause her hands to turn pale white. In the fall of 1999, the disease got worse, and my mother experienced shortness of breath, due to the Scleroderma affecting her lungs. She died on December 1, 1999, from Coronary Pulmonale caused by Scleroderma.
address: slashmaster_us@yahoo.com
type: systemic (diffuse or CREST)
Date: 05/19/01
Time: 10:07 PM
My name is Dave i am 40 yrs old i have been living with this problem for about 4 yrs now the severe coldness in my fingers and intense pain almost all the time i have tried many different things to ease the pain and to relieve the ulsers under my left index finger nail. if there is anyone that can suggest what i should try please let me know. i was told that removing the finger tip might be the answer not a good enough answer for me HELP!!!
address: lilnegrita2@mail.com
type: systemic (diffuse or CREST)
Date: 05/19/01
Time: 10:06 PM
Hi, my name is Gina Hernandez and my father has scleroderma and reynaud's phenomenom. At first when he was diagnosed, the doctor prescribed him a drug for it but it wasn't helping him for nothing so he stopped taking it. The disease was affecting him outside of his body. It affected his hands skin on his legs and face. However, my cousin told him about a doctor in New York who is a doctor but specialize in alternative medicine and supplements and also specialize the brain. Well anyway, My father started going to this doctor and since he been going to this doctor he had got so much better. His skin started to become more soft instead of hard, the marks on his face had gone away, he gained like 25 pounds more since he been going there. The treatment the doctor is giving him is vitamin drips;which is an IV that is vitamins, also he is taking many vitamins that his body needs and that is that has him alive. If it wasn't for that natural and safe treatment that he is receiving, he may not be here know. thank you.
address: gralspaugh@aol.com
type: systemic (diffuse or CREST)
Date: 05/19/01
Time: 10:05 PM
At the age of 24 (1963), I was diagnosed as having scleroderma. During 4Q62 my hands and feet were swollen at the end of each day. I was examined for causes of water retention, heart conditions etc. I was finally directed to a dermatologist who sent a biopsy sample from my forearm to somewhere in PA, which confirmed scleroderma. I do not recall the "type", but at the peak the illness during 1H63, my arms and legs were very hard and felt like wood to the touch. It was impossible to "pinch" any skin in those areas. Although I never had any pain, I could not reach behind my head to button those small buttons on men's collars in those days. I could not make a fist as the tightness prevented my fingers from completely closing. My family doctor prescribed Alphadrol (brand name?), a cortisone medication, and had me go to Mayo Clinic for a complete internal examination. Luckily, only the outermost portions of my extremeties were involved. I did have some slight "browning" areas of skin on my upper torso, and I was to take the medication in intervals, so many days on, so many off. I noticed some softening of the skin after each round of medication, with some hardening during the "off" times. However, over a period of nearly two years, all symptoms had gradually disappeared, and my doctor at the time could only say the illness had gone into remission. That was 36 years ago. I still have some slight discoloration of skin here and there, but no "hard skin" or other symptoms. It was only years later that I truly understood that my "cure" was something of a miracle. I turn 62 this month, am in very good health for my age, and going on a ski trip next month.
Now that I know the agony this illness causes many people, I wish that there was some "magic bullet" in my blood that was the antidote for scleroderma.
address: PVMSO@aol.com
type: systemic (diffuse or CREST)
Date: 05/19/01
Time: 10:04 PM
My grandmother had adopted me when I was born. She was my true love of my life. When I was in second grade, they diagnosed her with Scleroderma. From that point on I took care of her. As every year went on I saw the illnes taking over her body. But I stood by her side 24-7. I took care of her like she had taken care of me when I was little. But the one thing I will always remember her by is that she was the strongest women in the world. She never gave up and most of all she never lost faith in GOD.. Her name was Concepcion a native of Mexico. When she found out she had this disease her only words were " God gave it to me so God will take it away." The disease handicapped her a lot, though she never wanted to be considered handicapped. She spent most of her last months in the hospital. Then on December 8th, the day of her patron saint in the catholic religion, she passed away. But not without a fight and not without a prayer. My days now are spent remebering her. I know my grandmother is watching
address: emerald522@juno.com
type: systemic (diffuse or CREST)
Date: 05/19/01
Time: 10:02 PM
My mother was diagnosed with scleroderma about 5 or6 years ago. She let us know and I really didn't know what sclerodema was do she gave me some information about it. I wasn't until recently I began doing research on it though. she went through many idfferent diagnosis's, much like the ones that I read in the stories on this page. The doctors would tell her that she had mixed tissue disiease, raynaud's phemonenon, rheumathoid arthritis, etc. Because of these problems we moved to a warmer state, Arizona. When we were there she got ulcers on her right hand and was constantly wrapping them up with heataing packs. She would always compalain of the pain and that would make me sad to know that i couldn't help her. after about 6 months the ulcers went away and she would get really cold easily. I remember sitting in chuch and rubbing her hands back and forth through mine but they would never really get warm. About this time there was a movie on tv about scleroderma. My whole family sat there and watched it.
address: timkarla@hotmail.com
type: systemic (diffuse or CREST)
Date: 05/19/01
Time: 10:01 PM
Hi! My name is Karla. I'm married and a mother of two beautiful babies. A little girl, 2 years old and my boy is 10 weeks. My mother has Scleroderma. She is a wonderful 52 year old who has always been hard working, fit and active and fiercly independent. My parents have been happily married for 32 years and have a beautiful relationship that any couple would be proud of. My dad is very supportive with mum, probably too supportive, but this is because of the love he has for her. I can't remember how long ago that it was that mum was told she had Scleroderma but it seems like forever that she has had trouble with cold hands and feet. In Northern Victoria where we used to live it would be a day of 40 degrees celcius and mum would head off to do the shopping with gloves on. She did get some strange looks. More recently the tiredness, pain and frustration of not being able to do things for herself have caused more concern. But as always mum is still smiling. She takes no special medication although she is in constant pain but is more positive about life than most people, even me. One thing that seems to help her cope is the thought that no matter how much pain she is in there is always someone worse off than her. We are a close family and I believe that helps mum. We don't baby her, she lets us know when she needs or wants our help, otherwise it's life as usual. I find it humbling to be around her and I'm proud to call her MY MUM. If only we all had her strength and outlook on life. Karla
address: sixpack@mcn.net
type: systemic (diffuse or CREST)
Date: 05/19/01
Time: 09:59 PM
I don't know how to start.. I was diagnosed about a year ago I'm a male 56yrs and counting I don't know much about this didease but feel I have a good doctor.... the raynauds is the worst part so far can't seem to stay warm especially this time of the year./..thank god for electric blankets...guess what I want to ask is what to expect I'm not frightened just really don't like pain got some good stuff now but just take it at bedtime seem to sleep all nite.... really need toi talk to someone ine the early stages so I know what to expect am seeing my doc wed. so will probably have more tests anyhow really want to thank EXTRA for this channel caught the last 30 secs of this last nite just enough to get the Email address... any how would like to know more... THANX BOB