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Does anyone get frustrated with Scleroderma?


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#1 Guest_SADIE_*

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Posted 01 April 2008 - 12:58 PM

I just was curious if anyone gets frustrated at times with this disease? I'm a little frustrated right now because my sore on my toe seems to be getting worse. Hopefully the antibiotic will soon help it. I don't hardly ever complain about things if I do that means it must be hurting a lot. I'm not always good about being open with others but thought I would share this with all of you.

Thanks for letting me vent!
Sadie



#2 Bunky

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Posted 01 April 2008 - 03:18 PM

Sadie,

I'm sorry you are in pain and frustrated. Hang in there!

Bunky

#3 janey

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Posted 01 April 2008 - 03:58 PM

Sadie,
I'm sorry that the wound on your toe isn't healing. There have been a couple of articles recently about the wound healing properties of New Zealand's manuka honey You can read about it in Topical Treatments for ulcers. Keep in mind that it's not just any honey, but the manuka honey. You can buy through the Internet.

And yes - I think we all get frustrated at times with this disease. It's just a matter of making it through each of those frustrating times so we can more on. I hope that once your toe heals, you'll get some relief and some better days.

Big Hugs,


Janey Willis
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International Scleroderma Network (ISN)

#4 Cheri

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Posted 01 April 2008 - 05:16 PM

Hi Sadie,

I don't really know anything that will help your sore toe as I haven't had that, but I just wanted to say I hope you're feeling better. It can be very frustrating when you're not feeling well.


Take care -

Cheri

#5 Helen

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Posted 01 April 2008 - 07:23 PM

Yes. Sadie I do get frustrated. I just seem to get over one thing then something else comes up....I just try to deal with each thing as they come.
Take care
Helen

#6 Karenlee

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Posted 02 April 2008 - 01:56 AM

Hi Sadie,

Frustration comes in abundance with what we are going thru. It's like a never ending puzzle that just keeps getting bigger and stranger at every turn.
I understand your feelings and remember that venting is good. You have to let out what your feeling.
Feel free to email me or message me if you want to talk.

Karen

#7 relicmom1

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Posted 02 April 2008 - 03:55 AM

Hey Sadie
Yes I think we all get terribly frustrated by this disease. I've kinda gotten used to the physical aches and pains. What frustrates me the most is the inability to do the things I used to do. I was always on the go and now it's just a feat to get out of the bed in the morning. I feel as if life is passing me by. When I first started having problems, my kids were 8 and 13, now they are 18 and 23. I really felt that my daughter got short changed on the "mom attention" because she didn't get to go with me as much as her older brother. I hope to someday have grandkids, but I know I won't be able to do much with them like I would want to. I feel your pain as everybody here does. Please do not be afraid to share your feelings with us. Everybody here has probably been thru the same feelings and emotions and we are here for everybody. I am like you in that regard, but here I feel understood. I hope you feel better real soon!! BIG (((((((hugs)))))))).
Peace :)
Barbara aka relicmom1

#8 Peggy

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Posted 02 April 2008 - 06:00 AM

I'm sorry your having problems with your toe and I hope that it gets better soon. I know how you feel on being frustrated with this disease. It seems to encompass our entire day and it is never far away in our thoughts, especially when you go to do something and your body fights you. I have had some pretty dark days and find it hard not to think about those "remember when" days when I felt so good and took it for granted. Little did I know at that time what was ahead of me. I was always the one that started out early in the morning and went strong way into the night. Now I have to take multiple naps and even then I don't get a lot done due to the pain and limited mobility that I have. There have been a lot of positives that I have gained tho since getting this disease: 1) this site and them many caring people who take time out of their busy days to answer my questions and make me feel better; 2) realizing how lucky I am to have the family and friends that I have that truly care about me and how I am doing; 3) good doctors that I feel comfortable with and have trust in that they are doing the best for me; and 4) I'M STILL HERE.

I hope this helps and I do so hope you start to feeling better.

Warm hugs.

Peggy

#9 Annie N

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Posted 02 April 2008 - 07:39 AM

Ouch!
I get sores on my fingers, so I can imagine how your poor toe must hurt.
I know it's old fashioned, but I soak my hand/finger in really really warm water as much as possible when it's sore. Soaking it doesn't replace an antibiotic but the warm water soak seems to soothe the pain, and sometimes the ulcer opens and the pus oozes out, relieving the pressure in the sore (sorry if I'm being too gross.)
I don't know if this would help you, but I'm so sorry you're in so much pain.
I hope things start to heal really soon.

Annie N.

#10 debonair susie

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Posted 02 April 2008 - 08:53 AM

Hi Sadie,
Yes, the general consensus agrees withyou and you can count me in, too.

I hope that your toe begins to feel better SOON... I cannot imagine how it must feel.
Take care of yourself.

Soft Hugs,

Susie
Special Hugs,

Susie Kraft
ISN Support Specialist
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International Scleroderma Network (ISN)

#11 truman

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Posted 02 April 2008 - 10:25 AM

Sadie:

Please..........I spoke with you on chat today. Keep close tabs and if your present doctors are not coming up with some relief and cure within two weeks, go to the nearest wound care center and hook up.

I waited way too long on my doctor's treatment and wound up losing the toe. I should have gone months earlier.

Linda
Tru

It is what it is...........

#12 truman

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Posted 02 April 2008 - 10:26 AM

Frustrated?

Does a cow give milk?

Linda
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It is what it is...........

#13 Guest_SADIE_*

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Posted 02 April 2008 - 10:44 AM

I just wanted to thank you all for your support! This is a great board! Thank you for all your hints. I have had my foot proped up on a pillow today and that helps alot.
Sadie