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#161 jefa

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Posted 29 June 2007 - 05:26 AM

Welcome to the ISN Sclero Forums, Spanky. I am happy that you found us, but sorry about your diagnosis of limited scleroderma with Raynaud's Your input will be welcome on the subject as one who suffers in spite of living in a hot place. Please just get right out there and interact with the rest of the group. It is a hotspot of support and information.
Warm wishes,
Jefa

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#162 emmie

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Posted 29 June 2007 - 04:23 PM

Hi friends,

I've been posting for some time and yet, I've put off doing this; no clue why! First off, this forum is truly a great place for people with scleroderma and/or their loved ones; you can't beat the people here who really support each other. It is one of the silver linings in the "cloud". The ISN site is, in my opinion, top notch with all the resources they offer.

I started my scleroderma journey with raynauds in 1997 or so with an extremely severe attack as my husband and I were cross country skiing. Once you are out in the woods and the attack begins, it takes the same amount of time to get back to the car. Being clueless as to what was going on, I thought my hands were going to fall off! By 2002 the hand swelling was in full swing and I had 2 areas of skin hardening on my face. However, I put off telling my primary care physician about this until 2004 when he sent me to the rheumatologist. Presto: you have limited sclero. I have some mild GI problems; I just got a good report that cellcept use for 2 years has cleared up mild ILD; the skin on my hands and face has softened; my mouth is still shrinking. I have an overlap of lupus; Hashimoto's thyroid disease; Hashimoto's encephalopathy (a very rare neurological complication of the thyroid disease); seizures (related to the encephalopathy); degenerative disc disease; let's stop there, why dwell on this stuff.

The good news: I am 52 and have found that liberating! My husband and I have been married for almost 33 years. Yup we were babies when we got married. And then we had 2 baby daughters of our own. Our oldest will be 30 this year and has a 3 year old son; daughter #2 is 27 and has a 15 month old daughter. Being grandparents is turning out to be our favorite volunteer career! My husband and daughters are very supportive, helpful and understanding. (I'm the one who had the hardest time adjusting to not being the super achiever/get it all done/always organized person; in fact, I haven't seen her for a few years now!) One of my sisters is my best friend. She is super understanding, great fun and also a good driver. I don't drive except to a couple very nearby; some of my problems from the encephalopathy make that kind of dangerous for me and the other folks who might be out there when I am, so between them all I make it to my appointments and shopping, etc.

Up until this past year, I was an assistant prekindergarten teacher. I also develooped and coordinated an education program for the parents of the kids in our at risk program. I can't tell you how much I miss the kids and their parents. I feel so fortunate to have been able to have done work that I enjoyed doing and that I felt made a difference. Unfortunately, it's pretty high energy, brain draining, involved lots of out of the classroom hours....all things that I can't manage any more. So, I have applied for SSDI, been denied twice and next I'll have a hearing. Hopefully, better results at this level.

This is more than enough information. Maybe this is why I never got around to doing this. I knew it would take waaaaay to long! If you read all of this, you should get a prize! :P

xoxo emmie

#163 WestCoast1

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Posted 30 June 2007 - 06:01 AM

Hi there emmie,
I won the prize and I am so glad that you decided to post here! It is great to hear about your wonderful family.

I am always sad to hear that someone else suffers from Scleroderma (and the extras that sometimes accompany this Autoimmune dissorder). I do hope that you continue to enjoy life dispite this illness.

Welcome!!! :)
*WestCoast*

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#164 JerrysWife

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Posted 06 July 2007 - 06:42 PM

Hello Everyone!

I have only made a couple of posts because I have just been soaking in all of the help that everyone on this board has been so wonderful in posting.

My story begins with my husband Jerry and I on vacation in Pennsylvania at a family reuinon in July of 2005. We live in Southern California. Our twin baby boys had just turned one and we wanted to show them off. It was absolutely beautiful weather but my husbands legs were bothering him. He did not think anything of it.

Then in October (three months later) my husband had to have his wedding ring sized bigger because his hands were larger all of the sudden. We have been married 13 years at the time and so I thought, lets go to the Dr. and just make sure everything is ok. The Dr. said everything is just fine. You are a very healthy 37 year old. Nothing to worry about. Three weeks later we had to have his wedding ring resized again. I just felt I knew something was going on so we scheduled another appointment. They did a battery of tests and then two weeks before holiday, they found that my husband has Scleroderma.

With all of that said, it was pretty scary for us. I did a ton of research and then we scheduled an appointment with Dr. Clements at UCLA. He was wonderful in answering all of our questions.

Well now it is two years later and my husband is doing good for the most part. He will not take any drugs at all (my husband has never even taken an asprin if he had a headache in the past) but he does take natural supplements.

His fingers are bent and he has a hard time getting up out of his chair, he gets callouses on his feet really bad making it difficult for him to walk and has lost alot of weight. He is 6'2 and weighs 158. He has always been tall and thin but now he is really tall and thin.

We have our twin boys (who just turned three on Sunday) and they are the best distraction that we could ever have. They really keep us on our toes and most of our energy is focused on them. No time to dwell on the negative that's for sure.

My husband is a wholesale lender and I am a realtor. So we are very blessed in the fact that we both can work from home. On the days that I have to go out he stays with the boys and on the days he needs to go to the office, I stay home.

So that is a little about us. I just wanted to say thankyou again for all of you who have given me so much insight in helping my husband in any way I can.

Big Hugs to all of you! And many many thanks again. I hope I can really contribute in the future.

Best,

Nancy

#165 jefa

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Posted 06 July 2007 - 06:52 PM

Welcome to the ISN Sclero Forums, Nancy and Jerry. I am glad to hear that you have found so much help here and glad to see that you have decided to start posting. I recommend jumping right in wherever something interests you. We have several partners in the forum who regularly share their experiences. I am sorry this disease has complicated your life with the twins, but it is good that you are able to both work at home to share the responsibility. Two babies is twice the fun and work in the best of situations. :)
Warm wishes,
Jefa

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#166 VEGAN

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Posted 17 July 2007 - 03:24 AM

I'm 42 & just received my official diagnosis of limited scleroderma. doctors say I've most likely had a mild case since childhood, but now my hormone change is triggering progression.

I have a 19 year old son who was diagnosed with a genetic immune deficiency when he was 5. His immunologist says it's unrelated to my sclero. My rheumatologist, who seems to be a genetic specialist, says they are most likely related, that we may both have a genetic factor that makes us succeptible for immune issues, but due to environmental factors, ect. we manifest differently.

I'm vegan & into animal & earth rights. Been wanting to get rid of my car & start biking, but finally gave up & got a diesel car & had a waste vegetable oil (WVO) tank installed. Now I can get dumped oil from restaurants, pour it in my tank & spew out minimal pollution. Since I have my Master in Education, I'm considering offering presentations to classes on transportation powered by WVO.

Of all the symptoms I've had, the one that's throwing me for a loop is hip bursitis (whether this is sclero related, who knows). That's why right now as I type I'm sitting on an exercise ball. I even replaced my office chair with one too. Night & day difference. But the thing that's helped the most with this is stretches I learned at physical therapy. I'm the ultimate skeptic, so after my doctor gave me the referral I refused to go. But after a few more days of pain & no sleep, I caved, & really it's turned my life around.

The thing that hurts emotionally even more than my diagnosis is my parents reaction. None. I've had issues with my folks my whole life, but I thought they would at least express some words of care. When I was 20 they disowned me when I discovered I was gay. Their reaction now is flashing me back to that time of raw parental rejection. So on top of dealing with this diagnosis, I'm going to be dealing with their rejection again. I don't understand it, as a mother now I can't even imagine rejecting my child like that. I want to forgive & move on, but it's just so hard. That's why this forum means so much to me. You're almost like my adopted parent - always there, 24/7, always a caring word, except you also have the added benefit of your expertise. Thanks for being there for one & all.

Peace from Seattle,
Satya or VEGAN

#167 Shelley Ensz

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Posted 18 July 2007 - 06:27 AM

Hi Satya,

I'm delighted that you have joined Sclero Forums, but very sorry that it is because of your recent diagnosis.

Way too many of us know what it is like to not have any acknowledgement or acceptance or understanding of our diagnosis from family, friends, co-workers, and even doctors. I was totally dismayed by it when I was first diagnosed. I think a huge reason for it is that people simply do not respond the way we think they should or would, when it comes to illness issues. Although another big factor is the lack of awareness of scleroderma. Most people have no clue what it is, how serious it can be, or anything.

But most of us here know what it is like to be ill, and to encounter less-than-ideal responses. I know it hurts particularly bad when it comes to parents. Try to keep the focus on your own life and your wonderful activities and interests, since those who don't undertand will only serve to drag us down. And that is the last thing any of us need!

Warm Hugs,

Shelley
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#168 Clementine

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Posted 18 July 2007 - 03:29 PM

Hello!
My name is Jennifer and I am 40 years young. I have systemic sine sclerosis. I was diagnosed in 2005 but have had symptoms for at least 10 years before that. There was never much concern because the lung disease hadn't kicked in yet and I had no skin involvement, so all that time we just thought it was random sypmtoms that were treatable. Finally when the lungs became a problem, is when I went to the hospital. It took 3 weeks of being in ICU for the doctors. to figure out the problem. I have interstitial lung disease. I've been on disability ever since the diagnosis so I am a stay at home something. I am a newlywed and we have two adorable dogs that, in our eyes, are our kids. It's fun and it works for me!

A little about me...I was a hairstylist for many years, but retired as a deputy county clerk, as records manager. I am originally from Fayetteville, AR and grew up in Aspen, CO. I currently live in the mile high city, Denver! Some of you may know it as Bronco or Avs country.

I take Cellcept and several other pills to get through the day :). Cellcept seems to be working it's magic. The supplemental oxygen I could do without.

I am sure there's more to tell, but that's enough to bore you for now.
xo
Jennifer

#169 Candace

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Posted 20 July 2007 - 04:40 PM

Annie, I just joined this forum and was looking around when I came across your first message. I was excited to see someone who lives in Green Bay, has Scleroderma and lung involvement. I to live in Green Bay! I have been recently diagnosed with Scleroderma and I am scheduled to see Dr. M. E. Csuka in Milwaukee in two weeks for a second opinion. I actually was diagnosed with Interstitial Lung Disease a year ago. The Scleroderma symptoms just started to appear in November (Raynaud's). I keep looking for answers and find there are few. I hope you respond to my message. I would love to get to know you.

Candace

#170 Sweet

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Posted 20 July 2007 - 05:19 PM

Hi Candace,

Welcome to the Sclero Forums. I'm glad you are here! I'm really sorry to hear about your recent diagnosis of scleroderma.

If there are any specific questions you have, please ask and we'll help you as best we can.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#171 janeygirl

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Posted 23 July 2007 - 05:04 PM

My name is Jane. I am 43 and have been diagnosed with linear scleroderma en coup de sabre. I have been married to my beautiful husband for three years. Between us we have six kids one boy and five girls. We live in perth western australia, well I say that because that is where my husbands job is based, but we live in a caravan and go where ever work sends us, but only in western australia. so really our home is where ever our caravan is. We like it best when we are near the ocean as we are mad fishermen. we have a boat and like to be out on it as much as we can. Its not as nice when we go inland like we just did, we just came back from doing a job inland in southern cross (near kalgoorlie )for four months. At the moment we are in perth which is great as I have an appointment to see my dermatologist on the 10th of august so he can see how things are going and one of my daughters is also coming with me as we think she may also have the same as me but fingers crossed I so hope we are wrong. Im still trying to deal with this myself and get my head around it and still not really understanding it never mind having to try and explain it to my daughter when I dont understand it myself. But anyway hopefully I won't have too. If there is anyone out there who has the same disease or anyone who has some answers to all the questions in my head, feel free to contact me. So far the only symptons I have is two long dents on my head that go to my hair line. somedays they are both there, somedays theres just one dent, sometimes they feel flat as like they have gone and sometimes they are sooo deep. they can change many times through out the day. Anyway enough of this I only came on to introduce myself but got a bit carried away but it is nice talking to people that know what I have. It was really strange telling my local doctor what I have and he has no idea what I was talking about, so here I am the patient trying to explain to the doctor what I have, it seems weird. I wish everyone well and hope you have a good day.... :)

take care
~jane~

diagnosis: linear scleroderma en coup de sabre

#172 jefa

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Posted 24 July 2007 - 03:14 AM

So nice to get to know you Satya and Jane. Jennifer, it's nice to read a little more about you, too but it seems like I've known you forever. I look forward to running into all of you in other discussions.
Warm wishes,
Jefa

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#173 lizzie

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Posted 07 August 2007 - 12:01 PM

Hi I'm new to the forum , so thought I should introduce myself. I live in the UK ( N of England). Have been married 30 years, which is pretty good seeing I threw the wedding ring back at him the day after the wedding! We have 2 sons, both of who have just finshed university. I work full-time and am also doing PhD and don't seem to have much time for anything else, certainly not the house work!
Was diagnosed with Limited scleroderma last year - I was referred to the rheumatologist because routine blood test showed positive ANA and my doctor also thought my hands were a bit cold , and I received a diagnosis within ten minutes of meeting the rheumatologist! Can't get much more efficient than that. Could write lots more but its way past my bed time (its 11.30 pm here) and have to be up for work in 71/2 hours.
lizzie

#174 jefa

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Posted 07 August 2007 - 07:43 PM

Hi, Lizzie, and welcome to the ISN Sclero Forums. I am so glad you found us, but sorry it is because of your diagnosis of scleroderma. It is always good to have another UK member on board. I look forward to reading more of your posts in the forums.
Warm wishes,
Jefa

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#175 MrsZeke

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Posted 15 August 2007 - 05:18 AM

Hi. I am new here so I will give you a quick summary. I am a 40 year old mother of 2. I have been married for 5 years. I went to my doctor about 6 weeks ago. He sent me to a rheumatologist because he thought I had RA. The rheumatologist took lots of blood and xrayed every joint in my body. He then sent me for an echo of my heart and a pulminary?(lung) test. He has now told me that I have Crest Syndrome. I feel very lost and confused. I really don't know what this is, what it does or what I can do about it. My rheumatologist explained it (sort of) but I guess it went over my head or maybe I just didn't want to hear it. But the things he told me, that I remember, didn't really sound bad, but I have started looking it up on the internet and it sounds alot more serious than he made it out to be. So now I am confused and scared about what comes next. Any help or information I can get will be greatly appreciated.

#176 Shelley Ensz

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Posted 15 August 2007 - 05:58 AM

Hello Mrs. Zeke,

I'm glad you have joined Sclero Forums but sorry that you have scleroderma. As you probably know by now, CREST is also known as Limited Systemic Scleroderma. The only really "limited" thing about it is that skin involvement, if any, is limited to the hands and/or face. But it is a systemic illness and can affect any of the internal organs. Sometimes it is (comparatively) mild and sometimes, not. Everybody is different in that regard.

The most important thing is to become an informed patient, so you can take the best care of yourself. Diagnosis usually takes an awful lot longer for most of us, which is not good but at least it usually gives a bit of an opportunity to learn about the illness before being hit with trying to cope with the diagnosis.

Welcome!
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#177 Buttons

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Posted 20 August 2007 - 11:08 AM

Hi

I have been diagnosed with Limited SD just 2 months ago this was after approx 14 years suffering from Raynauds & always having a blood test which came back borderline with an autoimmune problem. Well the bloodtest have come back positive & my rheumatologist eventually diagnosed me. I hate my raynauds because I seem to react very quickly to anything remotely cool! I have some facial involvement & possibly my heart. I had a number of tests done & have recently had an Iloprost Infusion however this doesn't seem to have helped a great deal. I have also got Fibro & have had a number of health issues over the last 10 years which now make me wonder if some are related to SD. Still feeling in denial I think & keep thinking it will go away or they've got it wrong. My symptoms are thankfully at the moment mild compared to others on this site but not really sure what it will lead to. Oh and I also don't particularly like doctors, had some bad experiences in the past. Enough of that & onto a bit about my life.

I am 52 years old and have been happily married for 28 years & have 2 daughters who have both graduated one in Environmental earth Sciences & the other in History who is also about to go on to do Law. I am a teacher in the UK but have been off sick due to ill health this year but am hoping to return this coming term.
I enjoy walking, photography(still learning), reading fantasy novels and sewing etc.

Jen

#178 Sweet

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Posted 20 August 2007 - 12:33 PM

Hi Jen,

Welcome to the Sclero forums. I'm really glad you found us, but sure sorry it's due to you have scleroderma.

Sounds like you have quite a bit going on. You'll find a lot of good information here, advice and good ole friendship.

I look forward to knowing you better.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#179 jefa

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Posted 20 August 2007 - 11:19 PM

So glad to 'meet' you Mrs Zeke and Jensue. I believed I spoke to you in another thread, MrsZ, and I look forward to hearing more from you. Jen, this is your first post, but hope it won't be the last. Looks like our UK faction is growing steadily. My symptoms are also relatively 'mild' compared to some on the boards, but the impact on quality of life is all relative, isn't it? I look forward to seeing more of you on the boards. Hugs to both of you.
Warm wishes,
Jefa

Carrie Maddoux
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#180 jaxs

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Posted 21 August 2007 - 12:36 AM

my names jaxs I joined this group in 2006 just after I was dignosed with limited systemic sclrosis, didn't understand wot that was and at times still dont haha, sumetimes I feel very depressed, but I read a lot on this site and has giveing me much hope and courage to get on with my life , and just take one day at a time,
i live in the uk with my 5 kids and beautiful granddaughter, of 3 , I have 1 dog who is huge haha and 2 cats and 10 goldfish, my little boy of 12 has alopicia for 6 years now , but he's got a lillt bit of growth so fingers crossed... I sometimes do feel very not dizzy its like a strange feeling light headed and I fall over , I have to stop driveing at times like that coz my brain dont register traffic lights ...lol sounds mad but as my pals say the mad life of jaxsxxxxx
live life for today and not for tomorrow