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WestCoast1

Getting To Know You - Archives

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Hi, Connie, and welcome to the forums. As I mentioned to Patti, Pulmonary Hypertension isn't a stranger to scleroderma. It can be very scary when you first start hearing all the words being bandied about. If you can, try to relax and wait to hear the news from your doctors before jumping to too many conclusions. You will find a wonderful support structure on the forums. I look forward to hearing more from you soon.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hi. Glad to have found this post. Facing some uncertain changes in my status and need some support and info.

 

About me, I am 38 and was diagnosed when I was 16. Had many years of Raynauds before that, but no one knew what was the matter. My dentist, of all people, was the one who brought scleroderma up to my mom and made a referral for us. He had seen a presentation about the disease and had thought instantly of me. Finally, a diagnosis and then fear. I remember wondering as a teen, if I would get to be a wife and a mommy. At the time of diagnosis, my status was really good. I started having some esophogeal problems at age 21 and now go every 6 months for dilation because of stricture. Around age 26-27, I started having lung involvement and blood pressure problems. I have been married for soon to be 12 years and after 2 miscarriages, was blessed with 2 boys, one is 7 and the other is 4. Up until about 5 years ago, I had felt fairly good. Now, I feel like I am falling apart fast. My lung functions last month had decreased significantly after being stable for about 3 years. I am having some more problems with my pulse and blood pressure. My rheumatologist wants to talk about starting me on Cytoxin this month when I see her. I am scared. I work 2 part-time jobs but average 20-25 hours a week. My husband is on disablilyt himself because of depression. I really don't get much support or help at home. Like I said, I am to have found you all. I live in Indiana. That is just a bit about me. Look forward to getting to know you all and hearing about your health and stories.

Michelle

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Hi everyone. I've been browsing the site off and on for a while now, and I've finally decided to join the forums.

 

My name is Jessica. I'm 20, and was diagnosed around age 7. A lot of the early developments are hard to remember, since it all happened when I was too young to really understand what was going on. Anyway, I've got some type of morphea running from the top of my foot up to my hip on my right leg. Depending on which dermatologist you ask, it's either generalized, linear, or localized. I think they tend to go with linear these days, but either way, it's definitely not systemic. Of course, there's probably always a chance for it to change later, but all my blood work has been coming back fine so I try not to worry about it.

 

(For what it's worth, my dad was recently diagnosed with rheumatoid arthritis. Some people tend to believe there's a connection between the two.)

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Hi Michelle,

 

Welcome to the Sclero Forums love. We are so happy you have joined us. I'm sure sorry it has to be because of illness.

 

You've come to the right place for support. We all "get it" and will be here for you. So, join in, post often, ask questions and we'll help each other out.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hello Everyone!

 

It's very hard to read the tough stuff that so many of you are going thru ... some of it so familiar to me and some of I am not familiar with at all so I am getting quite the education! I thought I knew this disease well but it turns out, not so much!

 

At 16, I was told (by a gyno of all things! LOL) that I had Discoid Lupus (yup ... had the butterfly rash with the fatigue and the joint pain). Several years later, that went into remission and I was told that I now have Fibromyalgia and should stop working and file for Disability. I fought my rheumatologist on that issue for 5 years but then it became obvious that I had no choice. It took another 5 years to GET the Disability. Before that happened, I was diagnosed with Systemic Lupus. Had that for 6 years.

 

It was at that time that I was diagnosed with Mixed Connective Tissue Disease at the Johns Hopkins SD Clinic (Dr. Wigley). He told me that when the Lupus goes away and likely it will with MCTD, it won't come back. Unfortunately the SD took it's place. Now, seven years later, I have the SD active with occasional bouts of the FM, the always present Raynauds and the most prevalent symptoms of fatigue in the extreme and all the GI stuff giving me six fits, plus the anemia and the PAH.

 

Just had my first endoscopy. DXd erosive esophagus, same with stomach so bleeding in both (hence the constant anemia). Have had blood transfusions for that and am getting monthly B12 injections, had them weekly for awhile. Taking omeprazole 2x a day, Tracleer, Levothyroxine, Megace to help the appetite (yes have a LOT of trouble swallowing and without the Megace, don't eat enough to keep a bird alive). I also have the spontaneous vomiting about 2 hours after laying down (if you can call it laying down as I have to sleep near-sitting up using a foam wedge and 3 big fat pillows). I freeze even in summer and use the heating blanket and heating pads to try to keep warm.

 

So that's pretty much me. Oh yeah. And I have Osteoporosis and fractured a hip last year. So I use a can and the wheelchair as they tried to fix it but she won't fix. No good bones to attach a prosthesis to so I'm waiting it out. It takes the soft tissue years to heal esp. what with having MCTD.

 

In a couple of weeks I'll be 55. I had some years there in the middle when I was in great shape physically and I enjoyed that tremendously but it's been a very long time ago now. I'm glad to have found this group. I'm learning a lot and it's great to know that there is a community out there that UNDERSTANDS!

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Danceswithcats, weclome to our forum. I am glad that you have decided to join us. We all are learning so much about the disease process, effects, medication reactions, an learning to bond with others in the same boat. We are come from different walks of life but can relate and help each other through difficult times. I am also 55 and at the moment only have Sestemic Sclerosis with Crest. No Lupus or Fibro. I haven't heard anything about Megace. It helps you to want to eat or to eat more? I think there are several people on this board who might wish to learn a bit about how that works for you. Since, they never appear to be hungry or just don't have an appetite. Jump in and tell us a bit about yourself whenever you are ready. Sheryl


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Sheryl thank you so much for the welcome. I have noticed that several other posters have trouble with eating. I looked up the Megace and it is an appetite stimulant. It is used even in the care of AIDS patients as malnutrition is a constant concern with them. It really does help me to eat something. Without it, food just makes me go 'ughhh' LOL I know ya'll know just what I'm saying. For a very long time, the only thing I was surviving on was cans of Ensure, four a day. It did help and it got me thru and I didn't mind the taste but then they changed the recipe! I HATE when they do that! And now I can't stand the taste of the stuff so I'm very glad for the Megace. I can't eat a lot, still eat such small amounts but at least I'm eating 3 meals a day.

 

 

I wish all here blessings and good fortune and better health!

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Hi Danceswithcats -

 

Welcome to the Sclero Forums. Boy I a so sorry to hear of your multiple diagnoses. It's hard enough to deal with just one! You've come to the right place to find information and to network with others who are just like you.

 

Again, Welcome!


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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j3ss, I just want to welcome you to our group. I was ready to call it a night when I came across your post. I didn't want to miss welcoming you to our little family. We have a great bunch of people here. You will get to know most of us quickly. Sheryl


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Hi my name is Rachel, I am 43 years old and just recently diagnosed with Raynaud's (about 7 months ago). So far, all of my testing has shown negative for the other indicators that come with Raynaud's but my doctor is watching me carefully and following up with testing in case there may be "more to come" because I am currently exhibiting chronic joint hip pain (that has not been fully diagnosed yet), low iron and low energy and some inflammation in my blood tests which could possibly point to other autoimmune illnesses. I found this group because I am very interested in managing the Raynaud's. It started initially in my fingertips and now it has progressed down the second joints in my fingers and now my toes. This is my first winter with Raynaud's and I live in Northern Virginia area. I am very challenged with learning how to "stay warm" and finding solutions that work for me. I have also found that air conditioning, slight room temp fluctuations and moving from one room to another, as well as stress (and I got plenty!) sets off an attack. Your forum has been outstanding in finding helpful tips. I am very open to natural remedies, diet (if that can help) and possibly meds that can assist when the normal methods do not work. Thank you for this forum and I will be reading frequently, it is so wonderful to find a place I can get more information on my new diagnosis and coping with Raynaud's. Thank you!

 

~raelan~

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Welcome to Sclero Forums, Rachel! I'm sorry you have Raynaud's and an uncertain diagnosis. But I'm glad you've found us as you'll meet many caring people here and get some of your questions answered, too.


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.

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Hi, My name is Sadie,

 

I have had Diffuse SD for 18 years now. Started getting sick when I was a junior in high school. Its in most my organs except for my kidneys. I'm very thankful that it has stayed out of them! I have a feeding tube. I am a fighter!

 

Sadie

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Hi, Sadie, and welcome to the ISN Sclero Forums. I am sorry to hear about your long experience with sclero, but hope you will find some support among this great group of members. I look forward to reading more of your posts on the forums.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hi. I am not really new here as I was previously an ISN Support Specialist when the forum was on the MSN Boards. I have just rejoined now that I have a little more time to post. I was diagnosed with Diffuse Scleroderma and a host of other ailments in Februsry 2002. You can actually read my story at http://www.sclero.org/scleroderma/support/stories/engl...cee/a-to-z.html.

 

I'm just glad to be back among friends both new and old.

 

Much love,

Kim


Much love,

 

Kim

 

 

Be yourself...everyone else is taken.

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Thanks for the welcome. I feel at home already since I already know so many of you and those I don't, I am eager to get the chance to know you. I've been taking some time just trying to read some of the newer posts and get caught up so be patient with me if I don't post much at first. Just glad to be back among friends.

 

 

 

Much love,

 

Kim

 

 

 

PS. Pam, glad to see you here, too, as a Support Specialist!


Much love,

 

Kim

 

 

Be yourself...everyone else is taken.

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Jefa, I have posted a few times, but just now discovering this thread!

:rolleyes: I eventually get it ha ha! I did post on the the where we live thread. I am from Kentucky and have been dealing with what I thought was arthristis for many years, taking non sterioidal medicines. I was still working and gradually things started going south. Fatique, pain, Reynaud's and finally consulted a rheumatologist. I did not have the typical lab work abnormals. ANA has always been negative, no high sed rates and on and on. Did have a skin biopsy with very vague diagnosis as suggestive....so my rheumatologist has made diagnosis on clinical presentations. I am taking methotrexate and predinisone. Dealing with pain in my bones and muscle aches and Reynaud's has been quite a challenge. I did have an episode of atrial fib. in 2006, but that is being controlled with medication. I think I have been lucky at this point not to have more problems. I do have skin thickening on my left leg around and below the knee.I am learning my way on this wonderful website. Hope I have not rambled too much!

 

Thanks,

Vicki

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Hello, Vicki

 

I have seen your other posts and want to welcome you to this very supportive group. I am sure you will enjoy the forum once you find your way around. By the way, I used to live in Kentucky - Petersburg, population 400. I am now living in a slightly larger town in Scotland. :D


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hi, My name is Leslie Rutherford and I live in New York. I am 35 years old, married and have 3 boys. I was diagnose with Scleroderma, Vitiligo, Lupus since June 2007. After suffering with these disease over 1 year and a half, had 8 biopysies, many test. I am not going to any meeting as yet, mainly because of my illness. I am glad I found this group to get more information and support. I am currently under 10 doctors care, several medications that help a little. My condition now is that my skin is tightening, itching, Raynauds Phenomenum, ulcers on my finger tips, pain in my feet and hands, acid reflux, coughing in my sleep.

I am still keeping my faith that someday my disease will go into remission and I can live a normal life.

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Leslie, Welcome to the board! I am so glad that you found us! This board has such wonderful people here and you'll get great info too! Feel free to send me a PM!

 

Sadie

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Well Hi all I'm from southwest La.you know the home of Hurricanes Katrina and Rita ,we're about 2 hours from New Orleans,but our Huricane Rita was Sept.24th and we didn't get all the publicity that New Orleans did.I have a husband of 44 years 4 grown children and 9 grandchildren.I love La.its the only home I've ever known we have wonderful food here,great people and I'm proud to say that I can still speak Cajun French.Just sorry I didn't pass it on to my kids.Its so nice to see where we're all from.I love this place! Mary-La.

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Hi,

I am brand new to this site and waiting to be diagnosed. I am afraid I am scleroderma sine sclerosis. Have had positive ANA for 6 years,along with various aches, arthritic episodes. Only recently, in 2008, following the death of my mother did more symptoms show up: swelling fingers, reflux, and dyspnea. I've had Reynaud's for years - long before the other symptoms. Recent (1 week ago) CT scan shows interstitial lung fibrosis. This shocked me. Monday, Dec. 1 - an echo is scheduled to rule out pulmonary hypertention. A week or so after that I see a pulmonologist for the first time. Everyday chores are now making me slightly out of breath.

 

My mother died of scleroderma sine sclerosis. She was diagnosed a week before she died of heart and lung failure (PAH and lung fibrosis). Her death was somewhat quick, unexpected, and the reason was shocking. I am trying to stay positive but don't know how to get my mind around this. Saw a rheumatologist just once so far, in Sept.; took this long to get these tests scheduled. I am scared and dreading the next few weeks of diagnostic tests. I seem to be following in my mother's footsteps. I have no supports in place, other than my husband who is also trying to come to grips with this. This is all happening too quickly. Advice?

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