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perfect

Just diagnosed

25 posts in this topic

Hi, KayTee Again I have to say thank you for a warm heartful welcome. I also did not tell my children for a week or so, I have four adult children which three are married, and it was hard, so when I did tell them I did not tell them all that can happen because I just could not. But I then found some good articles on the web and forward them to all of my children. I just feel like everything is not real yet which makes it hard for me to talk to them. Then I had to talk to my employer which was not easy either, she wants to know what is going to happen and I have no answers for her. Again thank you and stay good. Susie

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Hi Susie (and any other new member I may have missed whilst traveling),

 

Welcome to the Forums! Aren't they great? One of the worst things about being diagnosed with a rare, chronic, and potentially serious disease is finding a 'community' to belong to. Having sympathetic, understanding, and knowledgeable friends make a lot of difference. It's nice to be told that you're not crazy; that yes, such and such a symptom might well be related to the scleroderma; and best of all, there is life after diagnosis. emoticons-yes.gif

 

 

I hope you all will post often and let us get to know you better!

 

Warm hugs,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hi Susie:

I'm so glad you talked to your children and hopefully found some peace of mind.

I also used the web to send a more informative email after I had spoken to them directly.

What did we ever do without it?

One of my sons said very directly: I am no longer a child. I have a job, career and family, and you do not need to keep anything hidden from me because you worry about how I feel. I will be there for you.

Needless to say - lots of tears. But good ones.

Stay in touch and best wishes.


Kay Tee

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Hi Susie ~

 

The lung issues for me (primarily shortness of breath when walking or exercising) seem to improve when I'm on steroids (prednisone) and/or imuran (an imuno-suppressant), because the fibroids which cause the lung problems are the result of inflammation when my immune system goes into high gear and attacks my body. Since I also have mild pulmonary artery hypertension (only with exercise), I was given Ambrisentan (which is supposed to soften up the vessel so its more flexible and thus transmits more blood with less heart effort). I really felt better on the Ambrisentan but had to quit taking it because my liver function tests showed elevated liver enzymes, which is not good I'm told. So now we're waiting to see if the Ambrisentan was the problem or whether my liver is actually affected by the scleroderma. Anyway, one thing my rheumatologist said to me is that since I've had most of my systemic involvements for a while now, he doesn't think they will get much worse (i.e., the lungs may not develop any more fibroids, etc.) That sounded good to me! And if that actually is the case, then all I have to worry about is the sclero affecting the few presently unaffected organs in my body! :P


Sharon T.

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Susie,

 

It's Susieq...hope you are doing well today. Was thinking of you! I remember when I recieved the diagnosis of scleroderma, Seemed sooo overwhelming, then got a second opinion to confirm for sure. and then I cried. But now, just face each day as it comes, be thankful for even the smallest of things, and try to enjoy each and everyday. Staying positive is hard, but well worth the effort. Keep us posted. Tell us more about yourself..where you're from and about your family! I love getting to know everyone! I'm a mom of 5. 3 original, and 2 adopted. I also live in Montana. I love to paint and sew and scrapbook when I have time or the energy. I hope you have a great week! Hugs!

Susieq40 :flowers:

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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

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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))))))))))))

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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

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

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:) 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

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