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WestCoast1

Getting To Know You - Archives

255 posts in this topic

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

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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.

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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

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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

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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.

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Hi Jody,

 

Welcome to the fourms! I am glad you found us, but sorry it is because of your husband's scleroderma. I am so happy to hear that the IVIg treatments seem to be working so well for him. That is wonderful news! I hope you will come here and post often and let us know how he and you are doing.

 

Hi Sarah,

 

It is good to have you joining us here on the forums. It does sound like you are quite busy.....hard to believe Eli is already 13 months! I hope you have a wonderful holiday as well and the treatment program in Seattle is all you hope it will be. Do keep us posted.

 

Warm wishes,

Heidi

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Hi Hazeltree,

 

Now I don't feel like the only weirdie out there (lol). It's funny that I always enjoyed painting my face and did a tree growing up one side and the branches and leaves spreading across to the other side. I could never yell at my kids for writing or drawing on their clothes--or even on walls--since they got it from me. There are some ways that we'll never grow up, but at least it's in a good way!

 

Best wishes to you,

Elehos

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Hi all,

 

I see that we have had a lot of new members join us since the last post on this thread. I hope all of you "newbies" with think about posting here and letting us all get to know you a bit better.

 

Warm wishes,

Heidi

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Hi All,

I haven't visited the forum very much recently because I was finding living in denial to be so attractive! Now, with some tendon rubs, and lessening range of motion, its tougher to deny.

 

I was diagnosed in 3/2006, 6 months after I had my daughter and 2 days after I had my carpal tunnel release surgery. I was living in Portland, Oregon at the time but have since trucked across country to live closer to family in upstate NY. We found a great farmhouse on 10 acres where our Golden Retriever and Burnese Mtn dog can run free. My husband is a middle school teacher and I, an at home mother for the moment. I am really enjoying the time to spend with my daughter, Libby and now that I live closer to relatives, more time with family. I was hoping to get started on selling some of the artwork I have been working on while at home (I'm always into something artsy), but with the recent hand mobility issues, I am hesitant to move forward on it. We'll see....

 

Anyway, thanks for starting the thread so we could get to know one another and thanks for all the great posts.

 

Heather

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Hello everyone! I've been reading everyones postings, and finnally decided to post. My daughter is the one with systemic sclero. She was diagnosed 2 years. ago. She is 18 now. The only reason we found out was her finger was bothering her for about a year. We were seeing an orthopedic dr. and he couldn't fix it, so he sent us to a Rhemuy. Who then did blood tests...and a diagnosis. She has Raynauds, this finger thing, hypothyroidism and a hiatal hernia. The only thing physically that bothers her is the finger. Mentally, that's another thing! My father passed away 6 mo. after her diagnosis, she was very close to him. My best friend 3 mo. later, she was her friend too. So trying to keep her on a up swing is a constat factor in our lives. I also have a 13 yr. old son and a husband that works out of town a lot.

 

We live in sunny So. California. With 2 dogs, 3 birds, and 2 cats. Both kids are active soccer players. We have very supportive family and friends. Though no one knows better about what's going on than all of you. This is such a great site. I read often! Thank you!!!!!

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Hello to all! Still a newbie but I have posted on a few forums and I thank you all for great feedback. I live in Escondido, CA, San Diego County. I began having symptoms in May 2006 and was diagnosed in September 2006. I have two kids a daughter 19 and and son 13. I am still working. My husband and I have our own company and provide software and accounting consulting. I also complete my training and testing as a real estate appraiser in June. I have a mentor and am persusing that as well.

 

My daughter is in her second year in college and doing spectacularly. We are very proud of her. She is planning a semester abroad in Ireland, spring of 2008. We are planning to meet her when she completes her semester and have a holiday. It's an exciting trip to look forward to.

 

My son is in his first year of high school. He tried to join the cross county running team but his body had other plans. He grew 4 inches in one month. Then, after a month off to strenghtened muscles that were causing knee problems, he grew a few more! He passed his dad in height so has been grinning for months! He expects to tryout for baseball (his love) but also wants to swim, golf and run track. Just to many sports during spring. He has been my greatest help thru this. Began by him opening my water bottles but now we have meal prep times together as I can't use a knife well. It's giving us conversation time in the middle of a hectic schedule.

 

My husband has been extremely supportive thru this. He travels a few days a week, but takes over all the cooking when he is home. We had plans to retire on a sailboat in Caribbean after seeing our son off to college. We may need to speed that time table up now that we have this diagnosis. I have let him know he will need to be crew, because I can only be captain! He has taken this suggestion? with good humor. He takes the time to attend some of my doctor visits and will make time to go with me to UCLA when that appointment is confirmed. It's great to have an extra mind and pair of ears. Sometimes he hears things I just didn't get and asks about things I haven't thought of.

 

I didn't realize, until reading this forum, how lucky I have been in my doctors. Although my reg. doc wanted to pat my on the head and continue the prednisone, I wanted to find/treat the problem. I just KNEW something was wrong. I called the insurance nursing advice line and they suggested I see a rheumatologist. the first one I chose assured me he would keep looking until we found what was wrong. He kept saying he BELIEVED me, when I described my symptoms. (they weren't always visible). After about a month of testing and weekly visits, When I dropped in one morning, without an appointment, he took the time to see me and immediately said (I know what you have!). Although not a happy result, I was relieved to have a direction to focus on.

 

Well....guess I had a lot to get out. Have a Happy! Laurie


Laurie906

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Hi Laurie and welcome!

 

I am so glad you posted on this thread and told us more about yourself. You sound like you have a very active life and it is always good to hear when a person's family is as supportive as yours sounds. Your seemingly positive attitude is sure to carry you far!

 

Warm wishes,

Heidi

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Hi Everyone....I am the Mom of a DS/Autistic son, Gareth, who is 18 years old and being worked up for sine Scleroderma. We live in Lancaster Co., Pa. Our 'adventure' started last Oct. when a swallowing study showed esophageal dismotility. Followup Anti-RNA Polymerase 1/111 blood work was positive, his ANA was positive.....along with his high sed rate. Other issues we are having include the 'zoning out', loss of voice or weak voice at times, fatigue, sloooooowwwwwww walking (evolution goes faster!!!) esphageal/throat pain, and drop in cognitive abilities at school over what he had been able to do. Personally, I don't think it's a drop in ability, I think it's because he just feels so badly and doesn't want to do the work!!! So far, X-rays have showed no Pul. fibrosis and we are still waiting to get in to see a pediatric cardiologist to r/o any problems there. His ped rheumatologist wants me to take him to Pittsburgh to Dr Medsger. He is having another series of blood work the beginning of Feb to see if the test results show the same. He's living on OTC pain meds....the only thing the rheumatologist wants him to have....for now. I have learned so much from this site and appreciate the friendliness of everyone.

Take care, Everyone.

Margaret

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Who am I?

 

I am a 41 year OLD stay at home mom of two beautiful, precious boys ages 9 and 4. I have been separated from my husband of 11 years since last August. We live on the Olympic Peninsula in Washington State.

 

As far as my health history goes, I started having weird symptoms when my first born was 6 months old back in 1998. My hair started falling out, then came muscle aches, fatigue, loss of range of motion and depression.

 

I had a horrible doctor who didn't take me seriously, and made me feel like a hypochondriac. I was emotionally fragile and lacked any confidence or self-esteem to stand up for myself or even dump him! Pathetic.

 

Anyway, my very first visit to him for depression he ran some blood tests and when I went back to see him he says, "I took the liberty of running an additional blood test and it came back positive for lupus."

 

He expalined what an ANA test is but that's it. That's all. No other information. I had no idea what lupus was or anything. So, I educated myself and from then on everytime I went to him with another symptom or in trying to get some pain relief, he would blow me off in an almost ridiculing tone.

 

Then he said, "If you have lupus, it's only mild." I was like, "What do you mean IF?! YOU diagnosed me!" I later got my records from him and he had written "probable lupus"

 

After he misdiagnosed my Raynaud's as Buerger's disease, then sent me to a sports medicine dr (for my finger ulcer) who wanted to chop off the tip, I said okay, I'm finally done here and switched to the doctor who delivered my second son.

 

Within 6 months of switching doctors I had a referral to a rheumatologist and a Diffuse Systemic Scleroderma diagnosis.

 

Now is THAT SO HARD? A simple referral? Would it have taken any skin off of doctor #1's nose ?

 

I get so angry (at doctor AND myself!) thinking about it sometimes because I could have been diagnosed YEARS sooner and started treatment then, maybe saving my organs some wear and tear or at least prolonging their life (and mine) a little while longer.

 

Okay, I'm done venting about doctors - I think.

 

On the brighter side, hubby moved out in August and it has been so peaceful around here. Too bad I can't get divorced without losing my health insurance and therefore my health or what's left of it.

 

I have a BA in Sociology which I have never used. After college I worked at a golfing/boating resort, first at the front desk and then for 8 years in banquets. Very long hours and hard work physically. My parents were so proud that I went college to become a food server. ;) :blink: :lol:

 

I met my new "family" there and had a lot of fun. But management changed many times and the place became too stressful to work there anymore and so I HAD to quit. The decision was as agonizing as a divorce because I knew I would be losing touch with some very special people.

 

I was in the process of applying to grad. school to get my masters in early childhood education when I was diagnosed one year ago. Since then I changed plans and opened an in home preschool. I absolutely LOVE it. Could use more than 2 students (bedises my own 4 year old) though. Getting started has been tough.

 

I love the GREAT outdoors. In my younger, healthier days I skied, played soccer, swam in countless lakes, river rafted, camped primitively, and took long hikes. All that is left for me now is cheater camping and short easy, level hikes.

 

I still get outdoors as much as possile and I love taking long weekend road trips with my boys. I am lucky to live in one of the most beautiful places on earth.

 

In spite of all the bad stuff, I am truly blessed.

 

Well, that's me I guess. You asked for it, you got it. ;) :lol:

 

Now I've got to go back and read about all of you.

 

Take care everyone,

Barefut


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Hello everyone!

What a great way to find out about each other.My name is Alex, I am a 40 year old woman living in Haslemere in Surrey UK. I have diffuse systemic Scleroderma,with pulmonary fibrosis(in the middle of chemo)dermatomyositis,raynauds and Rheumatois arthritis.A wonderful combination!I am most definitely surviving,and after 17 years still have moments of pretending I am not ill at all!

I am an artist and I live by myself,which is really hard.I was married once,and have had a series of rather disastrous relationships,so have been put of a little!I do so want to have a husband who is my best friend like so many of you have!So if there are any going spare someone send me one!

I am also a Reiki Master and Aromatherapist.And spend hours making myself lovely oils to keep skin soft!

I have a wonderful group of friends as well as family who support me and give me lots of love and laughter!

Now my elbows are sore on the desk,so much love to you all!

Alex

xxxxxxxx

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Hello Everyone!

 

I'm so glad I found this forum. I was diagnosed 2 days before Thanksgiving with CREST (I have all the symptoms plus some. I didn't know where to turn. You all seem to offer such a great support system here.

 

My name is Karen. I'm 48 and I live in Las Vegas, Nevada. I'm the City Clerk for one of the cities in the valley and I've worked at the City for 15 years. Las Vegas is not my favorite place to live (I've also lived in Alaska and California)but right now this is where my job is so this is where I am. I'm looking forward to retiring in about five years and moving somewhere else. Somewhere warm, definitely.

 

I was not surprised by my diagnosis as I had been having calcium deposits in my fingers for about 10 years. I did my own research on the internet and when I was pretty sure I knew what I had, I went to a general practitioner. She confirmed it with the blood tests. I'm still learning to live with the disease but it seems as though I, along with all of you, will have good days and bad days. I seem to be in a fairly 'good' cycle right now except for the Raynaud's. I have one finger that will not warm up and is incredibly painful. I'll be calling my rheumatologist tomorrow for an appointment. I recently had a calcium deposit in my pinkie finger and when all the treatment was done, I was left with a bent and deformed digit. I hope it's not that way permanently but I'm losing hope. I was a classical pianist before this and I hope I don't have to give that up. I'm on Felodipine and Nexium and my rheumatologist gave me prednisone for really bad days but I haven't had to take it yet.

 

Now for the fun stuff. I live in my dream home here in Vegas with my two best friends, Tallulah and Sachi, my two 4 year old Newfoundlands. They are big lovable cuddle bugs that I don't know what I did without before I had them. They are rescue dogs and I've only had them a few months but I have fallen head over heels in love with them already. They also have Mom wrapped around their little fingers. They aren't spoiled - much.....

 

Just before I was diagnosed with CREST, I took an amazing trip to London and Paris. It was a worldwind two weeks that I will never forget. One thing this disease has done for me is that it has convinced me to live my life now because I don't know what shape I'll be in tomorrow. I'm planning a cruise to the Bahamas this holiday season and next year I'm planning on visiting Egypt.

 

Well that's enough about me for now. Any tips and suggestions about dealing with these health issues will be greatly appreciated.

 

Yours in Peace

DesertStorms

Karen

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<<Now for the fun stuff. I live in my dream home here in Vegas with my two best friends, Tallulah and Sachi, my two 4 year old Newfoundlands. They are big lovable cuddle bugs that I don't know what I did without before I had them.>>

 

Hi Karen.....welcome to the forum. We have one Newfie left....out of two!!! Maggie, was our 8 years old black Newf, and she died a year ago May. We also have a 10 (!!!) years old Landseer named T-Rex. He's nothing but a 150# rug anymore and sleeps all day sprawled on the kitchen floor!!! Best dogs in the world.....except for the fur balls!!! We are new to this forum, too, and our bio is a couple above yours.

Take care, Everyone.

Margaret and Gareth

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hey there im also from the uk and I think your idea is a great one , i know no one else with crest syndrom and sum times it gets so lonely alo in the last week I have just found a cusin near where I live with the same condition as me if any one in the uk is intrested in meeting up or even just chattig on here please let lme know as I think it will be helpful to others and not just me thanks for reading jaxsx


live life for today and not for tomorrow

 

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Mike, you were asking what the "best posts" were on this forum. I'd have to say this is my most favorite thread of all, where we've been able to get to know many of our new and old members.

 

And it's the ideal thread for new (or old) members to try posting their first message. It can be about anything you want -- hobbies, pets, families, medical challenges, etc.

 

Reading the forum guidelines can be helpful before posting. But they are a lot to remember, so it is okay to just post away and let our team of support specialists modify your message to fit all our peculiar guidelines.

 

It can take anywhere from just a few minutes to a few hours (sometimes longer) for your message to be reviewed and posted, so don't despair if it doesn't show up right away, it doesn't mean you've done anything wrong. If you type something and then hit the "Send This Message" button, odds are very good it will get posted on the board sooner or later.

 

So we invite all the newbies, or even oldies who haven't introduced themselves yet -- or who want to introduce themselves again or talk about another aspect of their lives -- to get yourself comfy and make yourself right at home in this thread.


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 Annie. First and foremost, I need to Thank Shelley with her assistance of allowing me to enter my 1st post. I was diagnosed with systemic scleroderma, Aug. 1997. I have lung involvement, heartburn, tightening of skin on face, hands and feet. Skin has softened up somewhat and not as tight in the areas I've mentioned and raynauds. The SD has not progressed such as affecting internal organs. (hope it doesn't). I live in Green Bay, WI., and wow! today is nasty cold with a wind chill of -15. I am 46, married in May 1985, daughter who is 14 1/2 years. old and a six yr. female Yellow Lab, named, "Sunny". I look forward becoming acquainted with the people in this forum. Thank you, :) Annie


Diffuse Systemic Sclerosis, (Scleroderma). Lung, skin and gastrointestinal involvement.

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Hi Annie,

 

Welcome to the forums! It is great to have you join us and posting your first message! I am just sorry you are joining us because you have scleroderma....but glad to hear that it hasn't affected your internal organs yet.

 

I totally understand about it being sooo cold! I live in Nebraska and it has been bitterly cold for over a week (in the negative digits when we awake in the morning!). Yikes!

 

I am sure you will find everyone here very warm, supportive and encouraging....and willing to provide advice and information when we can.

 

Warm wishes,

Heidi

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Hello Annie,

 

I'm tickled pink to see that you managed to get your first post made. Welcome!

 

It's a little bit chilly around here, too -- our ISN headquarters are in Manysnowta. Brrrr...


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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