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On the outside looking in

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Hello all, I am new to the forum, but not really the disease. My mom was diagnosed with Scleroderma around 2000. I am not really sure of the exact date, which I should be because I think it was a very big relief. Finally there was a name for what she was going through. I don't think I can ever remember a time when she was not sick or not hurting. It is hard to remember a time when I was not overhearing people say it was all in her head. There have been so many times in my life when even doctors have said there was nothing wrong with her, that it was probably just a form of depression, but I always knew there was something there.


When my parents divorced, my mom got all 5 of us kids and the house, but my dad was always around. When he started his second family and the house just got too much for mom, he bought the house back and mom and I moved into an apartment. I was 12. I guess that is when I really started noticing different problems. She decided that in order to support us, she would become a truck driver. She drove truck from the time I was 14 until I was 18. When I was 18, she had her first heart attack. She was on the road in Canada, and I had to drive up there to pick her up. After I got her home and she was seen here, they discovered her first blockage, it was a subclavial blockage and they did a bypass. Then all the other issues starting rearing their ugly heads. The Raynaud's began, and then the ulcers. Yet we still had no diagnosis. The pain in her body was so excruciating that she could no longer work. We lost everything. I was put in the position of taking care of her and taking care of my baby boy.


In 1993, a week before my wedding, she had her second major heart attack. She had a triple bypass four days before my wedding. I say now that it should have been an omen for me, as he was not a nice man.


For the next 7 years, I dealt with different doctors, all of them saying that there was nothing wrong with her. And our family doctor saying that maybe there was something, he just did not know what. In the mean time she dealt with pain in her body, trying different treatments, first being told it was just arthritis, then rheumatoid arthritis, and all of it just making her more and more depressed. Finally the rheumatologist she was going to made the diagnosis.


Most of the stories I have read, people get this diagnosis and they feel nothing but dread. Our dread came later with knowledge. At first, ours was relief. Finally a name. Finally a reason that she had lung issues, kidney issues, heart issues, the Raynaud's, the ulcers -- finally a reason.


Mom is going to turn 64 in June, I will be 40 in July, and for most of my life I have dealt with this disease without a name. Mom's health has gone downhill so much over the years. She still insists on living alone, but we are not sure how much longer she will be able to. In September of '08 I pulled the doctor aside and asked him to give it to me straight. He told me that she could go today, she could go in a week, or she could go in a year. He had no way of knowing, but that she was in the end stages of this horrible monster. She is still hanging on. She has lost most of her short term memory, she is in chronic congestive heart failure, she is in renal failure. Her lungs have stabilized because she is on Tracleer (bosentan) for that. The ulcers on her fingers are back, but she is very vain and won't let the doctor amputate. Course now they won't because her heart is not strong enough for surgery.


I am the only one who takes Mom to the doctors, I keep track of all her medicine, I used to be the only one to take her shopping and help her with any housework. In January of 2008, she kept passing out because her pacemaker was not working right. She stayed with me and my new husband for almost two months. The stress was too much on me and her and we arranged to have a Medicaid waiver program agency come and help her at home. Thank goodness for organizations like that. It gave me a much needed break.


After getting the news in September that she was at the end, my husband and I decided it was time for me to do something for myself. We have been warned by different counselors that when she goes I will be more depressed because I won't have anything to do. My days will not be filled with doctors and medicines and I needed to plan for that day. I enrolled in an online college to pursue my dream to be a paralegal. Mom was so proud. My aunt, who lives in Florida, called all my brothers and sisters and told them that they would just have to start helping out with Mom's care. I am the youngest of the 5 of us, and I have been doing it all. The news finally made my sister step up to the plate, and my brother slightly. They still won't deal with the doctors or her medications, but they will shop for her and do some housework for her.


Mom got very involved in community support. When she was able she helped out with bakesales and other volunteer work. Now her days consist of sitting in a chair and watching TV. It breaks my heart to watch her slowly slip away. She is on oxygen now all the time, and now she had to get a lift chair to even help her get out of a chair.


I feel for everyone who I have read about in this forum, the suffering you have all had to endure. I apologize for the length, I guess I just needed to vent. My heart is breaking each and every day a little bit more and I know that a great deal of the members here can relate. I give you all great big hugs and thank you for letting me vent.

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Hi, Krisplady


I am so sorry to hear about your mother's long term problems, but I am glad you have found a place to vent and share your experiences with others in a similar situation. This forum has been an oasis for caregivers and family members as well as for those going through the disease itself. Let me welcome you to the forums with a big hug. If there is anything specific you'd like help with, just let us know. It is good that you have received good counsel on thinking of yourself in the long term and I wish you luck with your college work. In the meantime, many of us have found help in our Emotional Adjustment and Scleroderma pages -- a wealth of information there.

Warm wishes,



Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hi Krisplady,


Welcome to Sclero Forums, we are very glad to have you here and thankful that you've shared your story. I'm very sorry that your mother is going through so much suffering. I often think caregivers have the worst end of the deal. I'm glad you are looking ahead and planning to make a transition for yourself.

Warm Hugs,


Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099


The most important thing in the world to know about scleroderma is sclero.org.

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I am so sorry for what you have had to endure with this disease. Your Mom is quite the fighter. I too had a long delay in finding out what was wrong with me. It took over a year and it was one doctor after another. The hardest is when they don't think there's anything wrong. Then to finally get the exact diagnosis is hard to take. You have had to go through so much and I'm sure you are a constant source of support to her. I lost my Mom to COPD over a year ago and it took 3 long weeks of being with her for her to finally give in to the disease. It was so painful and it still is so hard to be without her. Please continue to come here for support and for any answers to questions you have. Your Mom may also like to hear from others who suffer with the same disease she has.


Warm hugs to you and your Mom.



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Hello Krisplady


Thank you for sharing with us you and your mother's struggle with scleroderma. I am sorry your mother went so long without a diagnosis, as you say it's a bit of a double edged sword, relief at finally knowing but then the reality of what you're facing.


No one can prepare for grief although you have taken every reasonable step you can. I hope your siblings engage more as they will only regret it later if they do not.


I am glad you have the support of your husband and that you have a new career on the horizon.


Please stay in touch with us, we wish you the best but realise as you do that everything else is likely in the short term.


Take care.



Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi krisplady,


Thank you so much for sharing with us, your mom's story.


You have been there for her through all and I also want to send you

a {{{{Great Big Soft Hug}}}} for all you have done.

You took on a tremendous responsibility, but you are to be commended!


As my mother's caregiver...and also one who has Scleroderma, etc...I can

empathize with the position you have held...as your mom's caregiver.


I too, have siblings...three brothers, who haven't been of any help with our

mother, yet they do "support me emotionally". I am the only daughter, but

I also have the all-around support of my husband, who helps so much!


I am so happy that you now have a good marriage and an opportunity to

pursue the career you are! (It is so great that online schooling is offered)!


I wish you the best and will keep good thoughts,, where your mom is concerned.

Please stay in touch?

Special Hugs,


Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Dearest Krisplady,


Saying 'Welcome to the Forum' just doesn't seem like enough, but you are welcomed here. Strong mothers raise strong daughters, just as love given is returned.


Please keep in touch with us. You are an exceptional person and I know I speak for all of us when I say we would like to give you what comfort and support we can.


Warmest wishes,

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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