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Hi all,

 

I am new to this group/site. I don't have a diagnosis yet, haven't even seen a rheumatologist yet. Only have my symptoms and a positive ANA to go on, so this site has been majorly helpful in finding clues to what may be wrong with me. My being a nurse helps some, although one would think that fact would be more helpful. Makes me realize just how little everyone knows about this realm of diseases.

 

Anyway, as I mentioned, I am an RN in a very busy ER, work 12 hour night shifts, go in running and come out running. We call it a good night if we didn't have any deaths or gun shot wounds. Having drive-by drop off victims are regular occurance. It is this reason, my working so hard, that I didn't seek treatment for a long time, figured my aching muscles and joints were just because I work so hard. I have 4 children, 2 of each flavor, and 2 grandkids, 1 of each flavor, and now a new one on the way. The grandkids are the best thing ever. I get to keep them every Wed and Thurs and enjoy it immensely. I teach an after school club for elementary kids. I have plenty of other things to focus on than myself.

 

I also am married to my best friend, 21 years and we still like each other!

 

And some really good news - the Cardinals just won the World Series (yes I live in St. Louis) ! WOO HOO!!!

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Wow, it's so nice to hear everyone's stories. So nice to read about long, healthy, happy, supportive marriages and kids and grandkids being appreciated and enjoyed.

 

It's comforting and warms my heart to know you all have these things in your lives especially since you're having to live with scleroderma. It sort of balances the bad with the good.

 

I think I'll remain a mystery for awhile longer. (I'm a mystery to myself most of the time! :P ) I'm not sure what I want to say about me yet.

 

Thanks for all of your stories!

 

Barefut


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Hi, I was on this board (at the old one) & haven't been around since probably September sometime. I have Secondary Raynauds & Fibro, trying to get to the bottom of what's going on everywhere else in my body. Most of my symptoms started in October of last year (2005). I've been taking an NSAID since July 2006 which has helped.

 

I'm married, have 3 kids, I'm 32 & live in on the East side of the States in the COLD! My husband is barely starting to take this stuff seriously, he says he believes something is wrong but at the same time, he is having a difficult time not coming down on me for being tired & not keeping up around the house. He doesn't understand how I can be so tired when I've been home all day & he's been up early & at work. He is tired of the complaining......But I'm tired of having something to complain about!

 

Anyways, from when I was here before, I know many of you have been through the mill with spouses & Dr.s not treating you like all your symptoms are psychosimatic. I've had just a couple of Dr.s REALLY listen & both of them were also very knowledgeable about this stuff.

 

I will try not to be such a stranger....I backed away thinking that maybe if I never talked about or read about this stuff some of the symptoms would go away (kind of a stupid idea....I think I got the idea from being treated like it was all in my head....I started questioning myself). I came to this board to begin with because I felt that I had so many symptoms that seemed like Sclero type stuff (I think the difficulty swallowing was one of them too...it's all becoming a blur of stuff anymore!)

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Hello Barfut and luvbnmom3~

So glad to get to know you...and it is always nice to have the mysterious barfut with us! :D

 

mom3~sounds like you just might have your hands full! with life and kids and a husband and an illness with a difficult diagnoses....thats a lot to deal with. You tried to ignore it and it didn't go away. I did the same thing. It is a hurdle, but I have come to realize that our lives and every minute in it are far too precious to pretend like nothing is wrong and let this "thing" go untreated. You have to find a place of comfort for yourself and the rest of your family will soon follow. The more you educate yourself, the more you can educate others and help them to understand.

 

glad you are back and thanks for sharing.


*WestCoast*

 

********

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I don't usually correct people but I've seen a few people type "b-a-r-f-u-t" and since that brings to mind something kinda gross :( , I'll have to kindly ask that y'all don't forget the "E" please ;) :lol:

 

Thanks

Barefut (as in Bare feet :rolleyes: )

Love you guys :)


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Hi my name is April. I'm 43 years old and live in Raleigh NC. I'm a commercial real estate paralegal who has worked for the same law firm for the past 19 1/2 years. I am married to my best friend, Kevin, and have 2 wonderful step-children, Taylor(14) and Will(9). We also have 4 dogs, 4 birds, and a cat. Needless to say, my life is a little hectic. 3 of our 4 dogs are Golden Retriever's, and they are a source of endless laughter and entertainment.

 

I was diagnosed with Diffuse Systemic Scleroderma about a year and a half ago. My original rheumatologist thought I had Rheumatoid Arthritis, and treated me for 2 years will little or no results. Once my skin began to harden, it was clear that I didn't have RA, and I am fortunate enough to live 35 minutes from Duke University. I see a wonderful specialist, Dr. Shanahan at Duke. In addition to being a great doctor, he is a very kind man. I recently began chemotherapy (Cytoxan) treatments at Duke. Having chemo is a very surreal experience, and it is my greatest dream that at the end of the treatments that I will see some improvement. Through all the curve balls that Scleroderma has thrown me, I continue to work full time. I think it helps keep my mind active and gives me a sense of purpose to keep me going.

 

I'm glad to be here with other people who struggle daily with this disease, and love reading the topics and experience that other's have had.

 

Warmly,

April

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Guest Jennifer

I'm Jennifer. I am 39, single and have no children. I have two adorable puppies that could easily be just as much work! I recently moved back to my home town of Fayetteville, AR after a 16 year stay in Colorado. I spend my free time relaxing, exercising, playing with my dogs, doing a wee bit of volunteering and hanging out with my friends and family. If I had it my way, I'd take a beach trip every month.

 

I have systemic sine scleroderma. I've had symptoms for about ten years but was not diagnosed until 3/2005. My biggest issue with scleroderma is having interstital lung disease and being on oxygen 24/7....kinda puts a damper on things but I make the best of it and still lead a fairly normal lifestyle.

 

I am glad to have this thread...It's nice to read about everyone.

Jennifer

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Hey- I'm a 51 year old psychoanalyst and live with my husband of 29 years. Our two kids are in college and I work part-time. If you can believe I used be a ballet dancer- can't do that anymore! Anyway, I was diagnosed with diffuse 6 years ago, but am doing pretty well. It's great reading about all of you. Shirl.

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Hi everyone

 

I am a retired librarian. I live in Northern Indiana and am 54 years old. I have been married to the same man for 32 years. We have two girls.

 

I am on several online forums. I love it. I have learned so much. I was diagnosed with Lupus and Raynaud's 25 years ago. I have always been told I fit the CREST pattern also. About 4 years ago I was given the limited Systemic Scleroderma diagnosis as well as APS.

 

It is very nice to learn more about each of you. I will try to get a picture up soon.

 

Sarah

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I just read through everyone's post in this thread....I see mine was mostly about why I'm here as opposed to who I am....lol. I mentioned kids husband already, I have 2 cats & 1 dog & 1 fish. I'm a student, studying to become an RN, hopefully in Pediatrics. I spend much of my freetime studying or researching about this stuff & right now I'm doing some research for a friend who's 3yr. old was diagnosed a week ago with CML (Leukemia). I'd say researching or studying is my favorite past time. I LOVE LOVE LOVE going back to school (I'm 32), but it is going to be a LONG time to finish since there is a 5 year waiting list to get into the nursing program here.

 

It was fun to read everyone's posts in here....see who we all are outside of this autoimmune stuff.

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Loved reading everyone's stories ....so I thought I would add something too. I am 58 years old and am in my second semester of nursing school .....yes, I am crazy.......its hard work but I really do love it! Of course I am the oldest student in my class....older than most of the instructors too. My intention is to become a Hospice Nurse.

I was diagnosed with Scleroderma a month after I started Nursing school in January. I have been taking pre-requisite classes for over two years and have been on a LONG waiting list. It was not the nicest surprise to find out that I was sick when I had finally started!

I was initally diagnosed with CREST (without the C). But now I have skin thickening in areas that suggest diffuse. I am hoping to be able to keep going and finish school. I am on Methotrexate injections and feel that I have a great team of Doctors looking after me. I especially love my Rheumatologist's Nurse Practitioner!

I live in CA., have two grown children, 4 cats, and a crazy household of unusal people who are my renters and my friends. So nice to meet you all!!!!!

Laurie Jill

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lauriejill,

 

It's so funny you say you're intending to become a Hospice nurse, that's my 2nd choice....I think...lol. Sometimes I still lean that way but I still think it'll be PEDS for me. I'm excited for you that you finally got off the waiting list, long list her in MI as well. I'm taking the prereqs myself right now.

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hi,my name is melissa(memeto2)i work in a long term care facility as a restorative nursing assistant,i love my job!!! i live in west virginia,born and raised.i am an only child but I have 3 children of my own and 2 grandchildren ages 4 and 5 months.i have a boyfriend but we are on the verge of splittingup,he is not a very good support system to me since ive had this disease.to be honest I can't stand him!!!!you find out who is really gonna be there for you when things get tough,and he is not .well anyways,i have diffuse sclero.have had it for 1 year now.and I hate it ,hate it.im so glad I have you all I know I dont post often enough but im always on here reading.for one thing my computer is total junk.well nice to meet everyone take care..memeto2

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