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Just diagnosed


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#21 perfect

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Posted 28 January 2010 - 05:15 PM

Hi SusieQ, how nice of you to check on me. To do a quick update, I went back to the rheumatologist yesterday (my second appointment) and he went over all the tests and x rays which showed negative bood work for Sclero, but he said but you still have it. Well, then the lung x rays showed changes already so he ordered a cat scan for next week and a pulmonary lung test also. So we will see. I am trying to take it one day at a time.

My cup is half full, for sure. I have four children boy, girl, boy, girl. 34, 33, 30, 25 and they are the best things I have done in my life. I am currently managing a retail jewelry store, I have managed stores and owned my own business for over twenty years. Glad I do not own my own any more. I started taking classes online to go into the medical transcription world, because I knew I would not be able to be on my feet for the rest of my working career, so as I approached the end of my degree I developed the Raynaud's, and I cannot type (it hurts), and then I changed my degree program into billing and coding, ( I chose these because I thought I could work from home) but then the diagnosis of Sclero.

Sooo I do not know what to do, spend more money finishing this degree, and maybe never getting to use it, or ? So there is a lot up in the air. I also have a mom 82 with dementia that I have sole care of and just put into a nursing home. (In fact all of my symptoms I thought was stress for the past five years due to the situation with my mom.)

There is such a big part of me telling me to stop the schooling, cut my losses and just enjoy my life right now, and eliminate the stress that I can.

Susieq do you have crest, or diffuse? The doctor told me yesterday I have Crest. I need to do some more research on this, also I know they have not ruled out the lupus because of the photosensitivity I have developed over the last three years. Along with other symptoms, but that blood work keeps coming back negative, too.

You asked me where I am from well I am from Menominee Michigan which is about sixty miles north of Green Bay Wisconsin (Green Bay Packers) and tonight it is below zero. Well I have been to long winded here, and again thank you for being concerned, I really do appreciate it, and take care.

Love,

Susie

#22 enjoytheride

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Posted 29 January 2010 - 05:57 AM

Hello Perfect- I want you to know that so many here have the ups and downs with this disease. I have been very depressed when some new symptom came up and relieved when I was able to cope with it or it got better. It's hard to come to terms with something that keeps changing.

But as you can see from some of the fine people here who keep going and doing, there is most often a lot of hope for the future.

When you feel down, I hope that you can get some comfort from information and experience that people here will offer.

(((((((((((hugs))))))))))))

#23 susieq40

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Posted 29 January 2010 - 09:12 AM

Hey Susie,

I'm in Montana, and have 6 children. 23, 21, 18, 16, 5 and 4.I may have already told ya that...lol. Anyway, I forget a lot of things lately, don't know if that's just because I have so much on my mind, or if I'm just getting old. I too thought I might be just getting older and was like premenopausal, but wasn't. I was thinking of looking into taking online courses for medical transcription. But now I'm not so sure, I have such little energy, it's hard to make it to nap time in the afternoon. I've been sick most of my life with one thing or another, didn't know it was scleroderma. I don't have much skin involvement, my skin hurts, but it's hard. But my insides are all messed up. I started having reflux and bowel problems in my teens, but got really bad in my late 20's. Had reflux surgery at 27/28, and diagnosed with Crohn's at 29. Diagnosed with RA at 34, and took meds for that until January 2009. I was getting really sick all the time, and no one knew why, we thought it was the side effects of some of the RA meds I was on but in June found out it was Sclero. And in June also found out I have the Interstitial Lung Disease, and Pulmonary Hypertension. So, yes, it is all a little overwhelming, I hope your lungs aren't too bad. This sure has been a change in our family. Trying to keep my fingers and toes warm, so the Raynaud's don't cause ulcers.Taking care of the house, and re-delegating chores and just getting up and getting the boys to school. But I do what I can, and hope for the best! I've also gone to some counseling to realize there is more to me than just this disease. To try to stay on the positive side of things don't get me wrong there are good days and bad days emotionally still, and probably will always be that way. I am glad you have good doctor's. And I will be here to lend some support, where I can. Hope your having a good day today! Can't wait to get to know you more..

HUGS
Susieq40

#24 perfect

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Posted 29 January 2010 - 04:47 PM

susieq I also look forward to getting to know you better too. Have a great weekend with your family, Susie

#25 perfect

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Posted 29 January 2010 - 04:57 PM

:) Hi, enjoytheride, I love your name here lol. I agree with you about the ups and downs, one day you are all positive and the next you feel confused sad, a little cheated, at least that is how I am feeling right now. I am more confused than anything I think. Just not knowing if I should continue my education, I am 55 almost 56, should I spend another year on this, and they want me to do an (internship) at a clinic, (will I be sick during this period) I am afraid to schedule something like this, considering I just found out that I have this diagnosis. What to do, what to do? You were also right that I will find help and comfort on this site, I already have. Thank you and have a great weekend, I am Susie