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#61 Heidi

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Posted 21 November 2006 - 04:11 AM

Hi again,

Wow! You two really do have a lot on your plates right now! It sounds like things are pretty scary and frustrating...especially not really sure who to be asking what questions of since it seems like the transplant started things off.

Is your husband seeing a scleroderma specialist? Even though it was brought on by the transplant, and therefore, somewhat different then other forms, I am wondering if a specialist might have more answers for you.

Please do keep us posted on what you learn...and know that we are all here for you to provide encouragement and support (and when we can, advice and information).

Warm wishes,
Heidi

P. S. I live in Lincoln

#62 HazelTree

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Posted 21 November 2006 - 05:07 AM

Hi Heidi,

My avatar is actually a photo I took of myself after drawing leaves and designs on my face with an eye pencil (I know, its a strange think to do, haha..), I changed the colouring in photoshop! I uploaded some of my art to the Photo Gallery if you want to have a browse! Some of the names got mixed up when they were uploaded but I will correct it soon.

HazelTree

#63 Bird Lady

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Posted 21 November 2006 - 05:53 AM

WOW This is great, getting to know everyone. I only recently found this site and have found it terrific. My husband has scleroderma, with lung involvement. My husband won't even look at the website ( it depresses him to see the problems)(then agian everything these days make him sour) but I have found it very helpful and informative. We own a small retail store. Lately he hasn't been able to work much. Thinking about selling it. Hats off to all that suffer with this awful disease and their spouse's.
Birdmans Wife
Hugs for All,

Julie (Bird Lady)

#64 Shelley Ensz

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Posted 21 November 2006 - 04:16 PM

Yes, Birdmans Wife, it is really delightful getting to know people in this thread, isn't it?


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.

#65 teeceekg

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Posted 21 November 2006 - 05:13 PM

Hi Heidi,

So we're neighbors! Yes, my husband has seen a scleroderma specialist about a year ago. I didn't care for him at all - he was very arrogant and talked down to us and didn't really provide much help. I was very disappointed to say the least, especially since I was so excited to find someone in town who was well known for his work with scleroderma and in transplant patients as well. My husband's oncologist has done very well with his treatment up to this point and he has always brought in other specialist as problems arise. Is there a specialist there in Lincoln you see or do you know of one Omaha by chance?

TeeCee

#66 jefa

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Posted 21 November 2006 - 11:04 PM

Hazeltree, your uploaded artwork is amazing. Thanks. I also think your avatar idea was quite original and very striking.

Peanut, I love your kitty, too. I smile every time I see it.

#67 Heidi

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Posted 22 November 2006 - 06:16 AM

Hi Teecee,

I don't know of any specialists in Nebraska (that is why I asked you). The rheumatologist I see here in Lincoln was trained at Mayo and I believe he is very competent and I have come to appreciate him very much. After coming here and reading all the different posts, I realized that he was providing me the best treatment. However, if mine progressed and became a lot more severe, I probably would seek an expert opinion from a Scleroderma Specialist at one of the centers known for their research and work in Scleroderma. I don't know if you have considered that route or not, but here is a link to finding a Scleroderma specialist Scleroderma Expertsl

Please do keep us posted on how you and your husband are doing!

Warm wishes,
Heidi



#68 Shelley Ensz

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Posted 25 November 2006 - 03:31 AM

I'd just like to remind all of our new members that this is a great thread to post your first message in. Just tell us a little (or a lot) about yourself, just to break the ice and get your feet wet with posting in the forum.

I remember being so scared to post my first message in a forum. I worried about whether I would be able to do it right, how it would work, whether anyone would ever reply to my message, etc. I can't exactly say my first message was met with thunderous applause, actually probably none of them ever have been, but the world did keep revolving on its axis and eventually I got used to it.

So just jump in and try it out. Our support specialists will make sure your message fits all our Forum Guidelines, if you haven't studied them extensively yet.

My name is Shelley. I live in Minnesota. We celebrated Thanksgiving on Thursday and I made turkey stock for soups yesterday. I love to do artwork and crafts and sewing.

What's your name? Where are you from? What do you like to do? Why did you join the forum? It doesn't much matter what you say...the important part of your first message is just getting it over with. :blink:
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.

#69 DBHYGRELL

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Posted 25 November 2006 - 11:33 AM

Hello,

I am Denelle and I am from Minnesota also. I was diagnosed with Diffuse in February of this year. I thought I knew what to expect, but then something happens and I am off kilter. ;) I have been trying to find a doctor that I respect and that I feel respects me... and it has been a challenge. I work at the University of Minnesota, Fairview hospital in the lab. I have also been accepted to nursing school, but have deferred for a year. I live by myself with 2 cats - Otis and Callie. I have learned to lean on my friends for support. I often feel others ignorance regarding the severity of this disease...

It's nice to meet you all,
Denelle

#70 Heidi

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Posted 25 November 2006 - 12:46 PM

Hi Denelle,

Welcome to the Forums! I am glad you found us here, but sorry it is because of your diagnosis of sclerderma. I do hope you can find a good rheumatologist soon. I hope you will come here and post often. I am sure you will find everyone here very encouraging and supportive....and willing and able to provide you with information and advice when we can.


Again welcome,
Heidi

#71 Shelley Ensz

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Posted 27 November 2006 - 07:44 AM

Hi Denelle,

I'm delighted to meet you! I'm also in the Twin Cities, and my husband Gene is on the lung transplant list through Fairview University. They have a wonderful transplant center.
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.

#72 MaryFanPhilly

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Posted 29 November 2006 - 12:33 PM

Wow, how did I miss this thread? I'm here all the time! What a great idea. It's so good to hear that we have lives outside scleroderma. I truly cherish this message board, since I've never met anyone with diffuse in person. I'm sure many of you are in a similar situation.

I was diagnosed a year ago at 43. In fact, I diagnosed myself since my doctor was sure I had a rash and was just reading too much when I told her what I suspected I had. Then I found a great rheumatologist, who has been wonderful to me through thick and thin (no pun intended.)

I'm lucky enough to live outside Philly, where I was born, home of Rocky and cheesesteaks. For over 20 years I've been in the dental field as an office administrator and insurance specialist. Since I've been on disability, I've been doing some consulting here and there, and temporary work, which works out great for me.

I've been divorced for 10 years and have two sons, a 22 year old (in his 5th year studying architecture) and a 16 year old (a junior in high school who drives me insane.) We have two cats, Caesar and Cleopatra, and a crazy lovebird named Duncan. She bites! Hard! Lovebirds are the biggest misnomer in the animal kingdom, so now you know the truth.

For several years I owned my own paint your own pottery studio, where I taught ceramic classes. I still paint ceramics and do other crafts when my hands let me. I have a big, loud, crazy family, who are always there for me and for whom I am forever grateful.

My favorite quote is 'Life is a banquet !' which pretty much sums up my philosophy.... thanks to you all for posting, glad to know you! Love, Mary in Philly
Diffuse sclero; diabetes; hypertension; GERD with Barrett's

#73 Shelley Ensz

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Posted 04 December 2006 - 03:03 AM

Hi Mary in Philly,

What a delightful introduction! It sounds like you have a wonderful and rambunctious household, what with the cats and birds and crafts -- plenty to keep you happily distracted and involved in life!
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.

#74 LizzyC

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Posted 11 December 2006 - 12:18 AM

Hello everyone!

I live in Washington State, with my husband of 28 years. We have 4 sons ranging in age from 27 to 17, and we are soon to become grandparents for the first time.

I just was approved for disability in October, and before that was an administrative assistant. Now I stay home and be a mom as well as enjoying my hobbies, which are reading, crafts and painting. I love country music, and decorating shows on tv.

Some of you might remember me from a few years ago, when I was much more involved in the board, and I remember a lot of you too... I went through a difficult year caring for my terminally ill m-i-l, who passed away at the end of this summer. Now, I am back and more in the mood to share and be involved again in the board and all of you.

I have Limited Systemic Scleroderma, and Pulmonary Arterial Hypertension. I was on Flolan for almost 4 years and tried Tracleer without success. I have recently switched to IV Remodulin which is working very well.

Hope to get to know all of you better. LizzyC

#75 Shelley Ensz

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Posted 11 December 2006 - 03:59 AM

Lizzy, I'm very sorry for all you have gone through the past few years, but it is absolutely delightful to see you back again!

For those of you too new to know, Lizzy used to volunteer as an ISN Senior Support Specialist, and she helped out in some administrative areas as well.
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.

#76 Heidi

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Posted 11 December 2006 - 04:03 AM

Hi Lizzy!

Welcome back! It is so good to see you join us here on the forums! We have missed you. I am sorry to hear about your mother-in-law. I am glad to hear that the IV Remodulin is working for you. That is great news!

I hope you will come and post often.

Warm wishes,
Heidi

#77 ShawMJ

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Posted 11 December 2006 - 07:22 PM

Hi I live in south La.I think I'm probably the oldest on here as I am 61.Was diagnosed with diffuse sd in 1998,also have had ulcerative colitis for 24 years now.I also have osteoporosis,sjrogens,mild raynauds,hiatal hernia,herniated disc,peripheral neuropathy and other stuff.Take lots of meds.I'm a grandmother of 2 boys,and 6 girls,but we're waiting for another girl any day now.It shows on here that I'm a newbie but I'm not have been around since 2002.Have 2 boys and 2 girls,husband of 42 years that I'd be lost without especially now,and he is on Aricept for dementia.He does work however and its helped him alot.I don't know what I'd do without him as many days he has to do everything for me.We also have pets,3 cats 2 dogs (small ones) a teacup chihuaha( spelling) and a little mixed breed one.I have just finished wrapping all the grandkids gifts for the holiday.Can't wait for the new baby to get here her name will be Kourtney Nicole.I try to stay positive about my diseases and know there are pople worse off than I am.Right now I'm fighting fatigue and it seems like I've been fighting it forever.Took our flu shots Monday of last week.Hoping to do something about my weight gain after the new year,I want to indulge in the holiday foods and goodies before I have to give it up.Well thats my little dialogue about myself,its interesting to read about everyone,where you're from etc,I am enjoying this.Take care everyone and my favorite saying is to SMILE. Mary-La.

#78 Heidi

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Posted 12 December 2006 - 03:35 AM

Hi Mary,

It is so good to see you posting on the new forum! And, of course you are not a newbie to us.....just to the forums!

Wow! Another new grand-daughter. I am sure you are so excited. Please keep us posted and let us know when she is born.

Warm wishes,
Heidi

#79 Jody

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Posted 12 December 2006 - 06:38 AM

Hi, my name is Jody and I've been reading this board for a while, but decided I needed to post. My husband was diagnosed with diffuse scleroderma 2+ years ago at the age of 46 and we've been on the familiar roller coaster since then.

We live in the Twin Cities, Minnesota and as we both work at the U of M, my dear husband started seeing a rheumatologist at the U. We felt it was important to see a specialist in scleroderma and after some research decided to visit Dr. Wigley at Johns Hopkins. We made our first visit at the beginning of 2005 and it was a big relief for both of us to talk to someone who really knew the disease and had ideas for possible therapies.

My husband was put on Cellcept and a number of other medicines. Our sense was that the disease process slowed down through 2005 but continued to march forward. His symptoms included the hand tightness, which spread up into his upper arms as well as tightness on his torso and into his face. He continued visits to Baltimore approximately every 3-4 months.

We visited Dr Wigley in April of this year and he was concerned by the continued progression of the disease. He encouraged us to consider IVIG therapy. My husband started exploring the feasibility of this with our insurance company and once he got the go-ahead from them began treatment in June.

He had monthly treatments for the 1st 6 months and is trying to stretch it out to every 2 months. It has truly been a miracle drug for him. We have seen the symptoms slowly decrease and the tightness in various parts of his body lessen. He has gained back some weight and has energy to pursue his usual activities. He still suffers from Raynaud's fairly badly and although the tightness in his hands has become less, he still has limited flexibility.

We know that you can never know what scleroderma might throw at you next, but at the moment we're more hopeful than we have been since he started with the disease.

I see that a few others are receiving IVIG treatment and wanted you to know what a great thing it has been for my dear husband. I feel very lucky that it has not been questioned by our insurance and hope that with more documented success that more insurance companies will cover it and make it available for more patients.

I've blathered on for long enough but wanted to share our story with you.

Jody

#80 Sarah

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Posted 12 December 2006 - 11:20 AM

Hello all,

It has been quite some time since I wrote a post on this thing. I have been SO busy keeping up with my son who is now a toddler. He is 13 months old and the light of my life. His name is Eli, but he is also called mouse.

I am a teacher and worked for four years as a subisitute teacher in special needs classes and for a year as an ESL kindergarten teacher.

My husband and I have been married for almost four years now. He is my best friend, except when he gets on my nerves-lol.

I am Canadian, and just moved to the US-Seattle speifically, just six months ago. It has been afairly major adjustment. I have travelled a bit, done some hiking in the Candian Rockies, been to the maritimes and Egypt.

I began having health issues just after my son was born last year. It started with chest pains and body aches. Then I got sceritis in my eye that has been ridiculously stubborn and then worsening body pain. I am undiagnosed as yet, but the eye thing is enough for me to deal with really.

I have been told everything in the past year. I have been told I could have RA, lupus, eye cancer, vasiciltis, Sorjen's syndrome, and even post partum depression! Nothing firm yet in that area though. As of now it is scleritis, celiac disease, undifferentiated autoimmune disease and I am obese from massive doses of prednizone. Has been a scary ride! Anyway that's a little about me and how I ended up here...should I even be here? I do not have slceroderma- but the people are so nice!

I am going to celebrate the holidays at home in Canada soon, and in the new year I will be attending a very intense weight loss program avaliable in Seattle so I will be busy getting at least one of these diseases ( the obesity) knocked off the list!

Have a Happy Holidays everyone. It has been great reading your posts. If you have scleritis, uveitis, or another inflammatory eye disease please contact me.