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jlf

Hello To You All

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Hello,

 

I have never posted anything about my scleroderma but have decided to give it a shot. I have came to this site literally thousands of times and read articles and research. So, what finally prompted me? This overwhelming depression of getting up and going again. No, I'm not new to scleroderma, 18 years of it - Wow, has it been that long. There are days I just don't want to do it anymore. I was diagnosed early and quite by surprise - to the point that I denied it for 8 years. I've been the round of doctor gamut many times over, finally I feel like I have a good team - all 7 of them. Which I might add even with insurance is breaking us financially.

 

In the past 4 years my scleroderma has gotten much worse with gastroparesis, thyroid involvment, blood clotting problems (leading to 2 TIA's - mini-strokes). I have taken the Raynaud's, swallowing problems, heartburn, reflux, pain, and fatigue in stride - but just can't ignore the gastroparesis.

 

My husband is great, 5 years ago we decided he would stay at home while I worked, I made more and could no longer do the house and work. It has been good for both of us. My husband makes me laugh. I'm so thankful for him everyday.

 

I have a grown daughter and grandson - whom are doing well at this moment. For years I have taken care of my mom who is now 80 - she's great.

 

Well, that's enough. I look forward to hearing from some of you. Any info on coping with the gastroparesis would be appreciated.

 

Sincerely,

 

jlf

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Hi Jlf,

 

Welcome to the board! I'm really glad you decided to post. I'm truly sorry for your ill health, sounds like you have a bad go of it.

 

You will find very supportive and caring people here that can offer a lot of information, or just a hug.

 

Here is a link you may want to take a look at to help with your gastroparesis.

 

 

Much love,

 

Pam


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Jlf, I started a post and came back to make sure I had the letters of your name correct and lost my post. Anyways, I was stating that all of us here are friends seeking to help each other when we are down in our thoughts, feelings or just need emotional support. I don't know if you are currently taking any medicine for your gastroparesis but I was started on Welchol and that didn't work as well as I had hoped. Now, I am on Colestid and all my intense gastro problems are finally under control. Both of these medicines are through Prescription from your Doctor. I'm sure others on the forum have tried different products that work for them. These are the only two I have personally tried. Sheryl


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Jlf,

Welcome to the forum! I'm so glad that you decided to join us after having been a silent member for so long. Any time I see something like "18 years with sclero", I feel so encouraged. I'm ending out year 4 since the onset of symptoms, so 18 years - keeps me going. Thanks for sharing that bit of information about yourself.

 

I'm sorry that you are experiencing worsening symptoms and depression. Pam and Sheryl have provided a great link for gastroparesis and some great advice. I hope you find something that helps.

 

Depression is always one of the worst symptoms to deal with. Studies have shown that depression is high among SSc patients, especially those with GI problems. You can find this study and more information on the ISN emotional adjustment page. Hopefully, you might also find some ideas in how to deal with your depression. I'm sure that being able to work and living with your wonderful husband do help some.

 

Again welcome! We hope to see you often.

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Like janey said, it is encouraging to hear from someone who has successfully coped with this illness and all of its tangled manifestations for so long. Even the best coping mechanisms (supportive family and a sense of humour among them), aren't enough some times and there are those days when you want to say. I don't want to play anymore. That is the benefit of forums such as these. The real people who are posting here suddenly become that much closer when you start posting too. I am glad you have.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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jlf,

 

it's rather ironic, isnt' it? you finally post here because you have hit a depression after 18 years of not only dealing with this disease, but working raising a family, caring for your mom and dealing with all the doctors. and financial aspects etc. And what you end up doing with your post is inspiring us and encouraging us and showing us that yes! People don't always suffer horribly for years and years, this disease can be managed for a good while, attitude can make a difference, we can keep putting one foot in front of the other. You have been very fortunate. I am very glad you posted!

 

I am sorry you have hit this rough time. I hope you find the links provided helpful, the forum helpful, and the support from your family helpful. Also, be sure to mention it to your dr. Many times an anti-depressant is helpful in getting the brain chemistry back in balance. Hope to see you posting often.

 

xoxo emmie

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