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For sure Sine Scleroderma


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#1 susieq40

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Posted 04 August 2009 - 02:21 PM

Well, I just got back from my pulmonary doctor appointment. Shes ordered a couple more tests. Another Cardio test and a test where you ride a bike with stuff hooked to you, to see how well I can breathe and for how long. It's gonna be interesting!! That will be next week. My pulmonologist and rheumatologist agree that it's sine scleroderma and that with the lung disease, we need to treat this aggressively because the disease is pretty active at this point. I was starting to dread as I read all sorts of info on the internet. Starting to feel the doom and gloom of a totally less active life, and one where I'll be driving one of those motorized carts around big department stores. I thought that wasn't gonna happen to me until I was like 60...Hopefully with treatment...it still will be later than sooner.

I'm having a hard time keeping up with the kids. It's insane!! One of the foster kids will be going home with his dad hopefully before school starts, he's 5. The teen girl still wants to stay here, so we'll see how things go; shes becoming quite the drama queen and of course, regular teen (which is good). But I forgot how much drama a 16 year old girl brings to the house since my daughter is now 22 and way better than she use to be I kinda forgot. It's a huge adjustment. But I was feeling okay when she came to our home. We don't know what is going to happen with the baby yet, and our other two boys are adopted so we have a house full. It's weird cause just two months ago I didn't feel too bad, just had Rheumatoid arthritis and Crohn's. I've lived that way for years and years. Then WHAM!!
I feel OLD!! LAZY!! Like everything blew up and don't know where to start picking up the pieces. Guess I just have to take this one day at a time. I wish I could just chat with people. I'm a chatter. That is so helpful to me. Anyway, Hugs to all, and my deepest wishes for the best days possible for everyone!

#2 Kathy D

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Posted 05 August 2009 - 04:09 AM

Susie,

I am so sorry you are going through all this.

(((HUGS)))

Please come chat with us at noon MST (or 2 pm EST)

Click on the chat button in the purple tool bar on the top of this page.

I have faith that after you get all your tests done you will get great treatment that will help you keep up with the kids better.

Kathy
Diffuse Scleroderma Diagnosed March 2009

#3 janey

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Posted 05 August 2009 - 04:46 AM

Susie,
I'm adding some hugs to Kathy's hugs ((((((((((((((((((((HUGS)))))))))))))))))). As Kathy requested, please join today's chat. I'm sure you'll find it comforting and reassuring. You are at an uncomfortable stage right now where you don't know what to do and where all of this is going to take you. Instead of thinking about motorized carts, think about becoming more creative in some place like the kitchen. When we lose one thing, we can usually compensate the loss with something else. I've given up a lot in the physical sense, but have started doing more less physical things and am still having fun and enjoying life. I never realized there were so many good books out there! :)

It's good that you have finally received a diagnosis because know you can get the treatment you need. The sooner the better. Even though there is nothing to cure us, there are many treatments that have been found to slow and even halt the progression of the disease. You might have to go through many tests and different drugs, but you will get there. So hang in there Darlin'. We are all here for you and wish you the best. Stay with us here on the forums and let us know how you are doing and what's going.

Big Hugs,
Janey Willis
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#4 nan

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Posted 05 August 2009 - 05:28 AM

Susie,

I am so sorry that you are going through so much. I used to dread the motorized carts, but I have had to use them in the past and I find them fun. I have knocked over several displays and done some good wheelies. :) My 16 year old son gets so embarrassed he acts like he doesn't know me.

Hugs to you,

Nan

#5 Amanda Thorpe

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Posted 05 August 2009 - 08:54 AM

Hello Susie

Motorised scooter...rock on! :lol: My husband would never let me use one of these because he worries I might run people over in it who wouldn't get out of my way or who parked in disabled bays with no disability badge.

So I have an assisted wheelchair because of fatigue and mobility issues and have to behave whilst someone else pushes it. <_< Never mind.

Try and source all your scleroderma information here because the information here is accurate and not overblown. It's understandable to feel as you do, you are at the beginning of your scleroderma journey. Janey's right you will find other things to replace what you loose and you'll be amazed that you can still have a great life with scleroderma, it's just that life looks nothing like you thought it would but that's not always a bad thing.

Keep posting and keep us informed.

Take care.
Amanda Thorpe
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#6 susieq40

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Posted 05 August 2009 - 09:08 AM

Thanks so much everyone! I'm feeling emotionally some better today. Still having a hard time not being able to clean as much as I once did...cause I just don't have the energy, or when I do clean..I get exhausted so so fast. But like you all say...somethings are less important than others...Right now...rest and staying saine is on the most important list... Thanks to all and HUGS!!

#7 smac0719

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Posted 05 August 2009 - 12:04 PM

susieq40,

You sound a lot like me when I was first going through all the fatigue, pain and discomfort. I did use the motorized cart at an amusement park and in other places when I needed to. I was very self conscious at first and then I realized I had no reason to feel that way.

When I got too fatigued to clean everything in one day like I was used to, I stretched the chores out and did one chore a day if I could. Iif it didn't get done oh well. For a while I didn't have the energy to cook daily so we did sandwiches and as much healthy frozen food and take out as possible. I also resigned to allowing friends and family help too, which is hard for someone used to doing it all.

Don't get too down when your body has other plans. Take advantage of the down time and do some reading, catch up on the phone with old friends or watch your favorite shows.
I may have Scleroderma, but Scleroderma doesn't have me!