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My Mom Has Scleroderma


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#1 chuck7297

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Posted 20 November 2006 - 08:17 AM

I am 39 and my mom has scleroderma and has had it for 16 years. She has been getting worse faster over the past year. I am getting really worried. I was hoping to find other people in the same situation as me to talk to. I hope to hear from some of you soon.

Thanks
CHUCK

#2 Bird Lady

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Posted 20 November 2006 - 08:31 AM

Chuck You've found a great place. I just found the forum about a month ago. And I have asked many questions, and gotten wonderful responces. These people are really great. I'm sorry about your mother, my husband has SSc. It is hard to see those we love hurting. Stay in touch this site really helps.
Birdmans Wife
Hugs for All,

Julie (Bird Lady)

#3 Heidi

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Posted 20 November 2006 - 08:35 AM

Hi Chuck,

Welcome to the Forums! I am glad you found us, but sorry it is because of your mom's diagnosis and worsening progression of the disease. I am sure you will find everyone here very supportive and encouraging. Just let us know if you have specific questions or what you might like to know. We will all try to help provide you with information and advice if we can. Your mother is lucky to have you!

Warm wishes,
Heidi

#4 chuck7297

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Posted 20 November 2006 - 08:40 AM

Thank you all for the warm welcome. My mom is having a harder and harder time moving and eating. She can't do lots of normal tasks. My dad is helping her more and more. She just had part of a bone removed from ehr finger and is in a splint and just on Saturday got info from her doctor she has A-FIB. More and more things seem to be affected. She doesn't eat much becasue she chokes a lot on food. Her iron levels are low and she is tired and waek most of the time.

Is it a matter of time?

#5 Heidi

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Posted 20 November 2006 - 08:51 AM

Hi Chuck,

I know it must be very scary for you to watch your mom getting worse. You ask, is it a matter of time? No one can say.....this disease seems to be so unpredictable and affects different people so differently and even within one person it can wax and wane dramatically.

With regard to some of the symptoms you mentioned: I don't know how much you have read about Scleroderma or different treatments for different symptoms, so I am going to give you a few links here to medical pages from our ISN website.

First, here is information on cardiac involvement: Cardiac Involvement.

Here is some information on gastrointestinal issues: Dysphagia.

Also, what medications is your mother on? And why did she have part of her bone removed?

Here also is our main medical page where you can access lots more information:
Scleroderma Symptoms.

I hope this helps.

Warm wishes,
Heidi



#6 chuck7297

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Posted 20 November 2006 - 08:56 AM

She is on lots of medicine. Not sure of all of them but I know she is on Previced, some steroid type, antiboiotics constanlty, and many others.

She had part of the bone removed becasue it got infected. It wes some sore that didn't heal and got infected. She has also had part of her thumb done too a few months back. The bone removed now was in her first finger.

She went to Pittsburgh last year to see a specialist there but he couldn't do much for her.

Now with her heart and everything else it just seems to be speeding up and going faster. I know it effects many organs and seems to be working quickly on her these days.

She got a scooter last year and a chair lift in her house a year before that and just sits at home mosts days becasue she doesn't have the engery to do anything. At least not more than one thing a day. She is about 100lbs now and barely eats.

#7 LisaBulman

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Posted 20 November 2006 - 08:59 AM

Hi Chuck,
I am so sorry to hear about your mom. I have had sclero for almost 14 years and I know it is hard on my family. You have found a great place here! We are all here to offer support and information when we can. Please feel free to ask questions and we'll do our best to answer them. Try to keep a positive attitude and be as supportive as you can.

Take care!
Lisa Bulman
(Retired) ISN/SCTC List Coordinator
(Retired) ISN Sclero Forums Assistant Manager
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International Scleroderma Network (ISN)

#8 HazelTree

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Posted 20 November 2006 - 09:00 AM

Hi Chuck,

Im sorry to hear how ill your mum is. The only advice I can give you to help your mums energy levels is to make homemade soup with vegetables full of iron (cabbage, brussel sprouts), when blended it will make it easier for her to swallow and will be full of nutrients to help her to heal, and will also heat her up from within. I will email you a recipy that you can vary to her taste. I hope this can help even a little!

HazelTree

#9 janey

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Posted 20 November 2006 - 01:13 PM

Hi Chuck,
I'm so sorry to read about all the problems that you mother is having after having had sclero for so many years. It's a very good thing that you did a search to get some help. You're in the right place. Lots of supportive people with tons of information right here on ISN. Heidi has provided some great links to specific symptoms that your mother is experiencing. These links will send you to various research article abstracts. We try to keep the latest and greatest information about sclero. I hope you find some useful information.

We also have a page on digital ulcers. Are these what is causing you mother's infections and amputations? Other than antibiotics, is she being treated for prevention? The link I provided is a whole list of treatments for preventing and caring for ulcers. I hope you find something that is helpful. There are several medications out there that have been successful in preventing the development of finger ulcers so your mum might talk to her rheumatologist about this.

I also have atrial fibrillations (over a year now), but am taking medication that is keeping them under control. My last fib was back in March. In addition to an arrhythmia suppressor, I'm taking a daily aspirin to help prevent blood clots. With fibs, this is very important since the blood in the heart can't be fully expelled, the possibility of clotting exists. Has her cardiologist talked to you about this? It not, please bring it up at her next visit.

Please keep us up on your mother's health and do not hesitate to ask questions, seek support and let us know how you are holding up. Lots of virtual hugs come your way.


Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#10 chuck7297

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Posted 21 November 2006 - 08:23 AM

More bad News. My mom went to the doctor today and they have to take her whole finger. It got infected. It just keeps getting worse and worse. More and more happining to her.

Anyone else go thru this and how fast did it happen? I just fear the end is near.

#11 jefa

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Posted 21 November 2006 - 10:17 AM

It can't have been easy for you to have gone through all of this with your mother, Chuck. Like Heidi says, there is no way you can tell from specifics how an individual will react. Reading through this forum and the stories on the main site, however, many people have had fingers or bits removed and got much better later on. I hope you will take each day at a time and make sure you let your mother know how much you love her and care about her. Hopefully you will have a long time together, but at least you will always know you let her know how you feel.

#12 emmie

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Posted 22 November 2006 - 06:35 PM

Hi Chuck,

I was just reading this about your mom and I want you to know I'm thinking of her and wishing the best things for her. I think you are an awesome son. She is a lucky mom to have you. I am sure you are one of the things she is grateful for whether she is able to express that or not!

xoxo emmie

#13 Guest_Jennifer_*

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Posted 23 November 2006 - 03:25 AM

Sorry Chuck. This must be difficult for you. I feel strongly that once they get your mother under control she's going to be OK and live a long time. It may just be a matter of time to get her on the right medications that work for your mother.
Enjoy the holiday and keep being wonderful to your mom.
Jennifer