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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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Hi everybody, I enjoyed reading about you. My name is Karen, 35 years old and married for almost 8 years to my husband, and I also have a wonderful 15 yr. old stepson.

 

After reading other peoples stories, I feel very lucky to have gotten the diagnosis of Scleroderma relatively quicikly! I have achalasia since 1994 (no motility in my esophagus). At first I was told it was psychological, but after losing a bunch of weight from not being able to swallow, it was correctly diagnosed by another dr. and I had surgery for it in 1998 (Heller Myotomy with Toupet Fundoplication).

 

Last year I found out achalasia could be a symptom of Sclero and I have other symptoms as well - dry, itchy skin, cold all the time, aches & pains. Also my Aunt had Sclero. So I asked my doctor to refer me to a Rheumatologist. The first time he met me he looked at my fingers and pointed out they are getting tight, shiny, losing their wrinkles. He told me right then it was Scleroderma, even though all my blood tests are normal. It was confirmed by biopsy.

 

My husband and I love the outdoors, especially fishing and looking for morels in the spring. He loves to ice-fish, and I like it but it's not easy with Raynauds, and I can't stay out long even with the shanty. But I still do it! :) He has Multiple Sclerosis, so with our illnesses we are doing our best to continue doing the things we love, we just have to do less of it now, based on how we feel.

 

So that's me, and I'm glad to meet you all! Have a great day :)

Karen

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Hi Karen,

 

I am so glad you posted on this thread and helped us to get to know you better! BRRRR..Ice fishing! I can't even imagine.

 

Warm wishes,

Heidi

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Erin,

I don't think I ever posted a reply to you. I was born in Virginia and I am still here. March 15th I will have been here 50 years!!!!!!!!!!!! I was a ballerina, choreographer, and ballet mistress for a local dance company. I started teaching school after a foot injury halted my career. I taught for 18 years. I have been married for 27 years this August and I have an incredible son that we adopted 15 years ago in September.

I started getting sick in 1998. I didn't have to stop work until the fall of 2004 when I had the major GI bleed due to watermelon stomach. Since that time I have been on disability retirement.

I feel I have accomplished a lot in one day if I am able to get up, get my son to school, exercise for at least 30 minutes, get my son from school, fix dinner, and do laundry. I have to rest for about 2 hours each day. I try to relax because stress makes everything so much worse. :rolleyes:

Nan

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Hello Karen,

 

I'm tickled pink that you posted in our "Getting to Know You" thread. I can see why you chose that avatar.

 

It seems to me that your diagnosis took at least 12 years, maybe more, so I'm not sure I'd agree that it was quick and easy compared to others.

 

It sounds like you have a wonderful hubby...I hope he knows that he has to really crank up the heat in the ice house when you're in the shack. With that and some really good thermals, you might be fairly okay.

 

Anyway, welcome aboard, we're thrilled to have you join us -- and also I sent my hearty Welcome to everyone in this thread that I've missed.


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 Shelly, My husband's great, always reminding me "do you have your handwarmers? Did you use your nitro cream?" and he puts up with it when I get the shanty so warm he has to go outside to cool off.

 

I see what you mean, I did wait a long time for diagnosis - I just didn't know I was waiting :) For years, I thought the achalasia was a disease in its own right; it was only last year I realized it might be a symptom of another disease. My Rheumatologist recognized my symptoms as scleroderma the first time I saw him, so it seemed quick I guess.

 

That penguin is perfect for me, living in cold snowy Michigan!

 

Thanks for the welcome!

Karen

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