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nomorepain

Have A Happy New Year 2007

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I am new to this forum and have only written two other times but often read. I have been diagnosed now with Scleroderma for two years and still have day to day battles. For every good day I have, I have 6 bad days, so I am always greatful for that good day.

 

I read all the messages from everyone, including myself, looking for answers and I wish we had them all. I feel for those who are just starting off with this dreaded, ugly, frustrating, disease and don't want you to think that your alone.

 

Stay strong, keep busy, and I hope that you/ we all have much support , because it is a long road ahead. I feel we can do it, especially with the help from this Forum. I've found ideas and things I brought back to my doctor's that they were thankful for.

 

I am scheduled to have my 12th EGD with cauterization in January and 12 transfusion-27th pint. This is a procedure to treat Watermelon Stomach or (GAVE- Gastrointestinal Antral Vascular Ectasia) which is bleeding of the stomach lining. Every since May 2005 my stomach has been bleeding, I have been Anemic and have had to have transfusions every month. My hemoglobin has not been above 8.0 since last May 2005 and my Hematologist has also tried Iron shots but that did not seem to work, since the sorce of the bleeding is my stomach. Along with daily muscle and joint pain and my skin itching and feeling like it's going to burst, I try to keep an upbeat attitude. I am just greatful that I am able to work through this all because it makes me feel like I am able to contribute and still doing something. (I was out of work for 6 months).

 

Has anyone had the same intestinal problems that I have? My doctors make it sound like I am such a rare case, but yet I read that intestinal or stomach problems are very common with Systemic Scleroderma patients. (I also have IBS and Acid Reflux).

 

A Happy and Healthy 2007. Peace to all.

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Hi Nomorepain,

 

I do not have the same issues you have with your stomach (GAVE) nor the severe anemia it has caused in you. Oh my goodness. Do you have a lot of fatigue?

 

Now the itching I can identify with. Mine comes and goes. It will drive me out of my mind for several weeks to months. Then relief for a while...aaaahhhhh. Then, drat, it's back again.

 

Do I understand correctly that you are still working? What do you do? Good luck with your next transfusion. I hope all goes well.

 

xoxo emmie

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Hi Nomorepain,

 

Welcome to the group - I'm sorry it's because you are ill. You sure sound like you're having a time of it, my heart goes out to you. I don 't have the problems that you've described, but I thought I would give you a link that might help you.

 

Please take care and know that we are here to support you!

 

http://www.sclero.org/scleroderma/symptoms/a-to-z.html#gi


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hey Darling,

It's sounds like it's been a good thing that you have found this forum. You're already reaping the benefit of support and just being able to talk to people that understand what you are going through. So Welcome!

 

I'm so sorry that you are having so much problem with GAVE. All I have to deal with is some occasional heartburn and reflux, but keep that pretty much under control with meds. Here is a link to a Patient's perspective and some personal stories of patients with GAVE. I'm sure your'll be able to relate to some of what you read.

 

Please let us know how you do in your next procedure. You'll be in our thoughts.

 

A very happy and healthier New Year to you as well.

 

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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Emmie,

 

Thanks for your nice message. I am still working and somehow that is what get's me through most days. I do have fatigue, some days are worse that others, but my doctors tell me the body gets use to low hemoglobin levels and adjusts. So at first it was a shock to my system and I was out of work for 6 months, but then I went back to work and adjusted to the low level of 7 and 8 for a hemoglobin level. Once my levels fall into the 7's I have to have a transfusion.

 

As far as the itching goes, I too have days were it will drive me crazy and some that it won't. I take Atarax pills 4 times a day and have tried all different kinds of lotions. Right now there is a lotion that I like. It is very thick but yet soaks into the skin. How I would love to soak in a bath with oatmeal but I can't get in and out of the tub.

 

Good luck in the New Year!

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Hi nomorepain,

 

Well, with all of your problems, you are somehow keeping it together. I am in your fan club!

 

Maybe if we all put our heads together, we could come up with a tub that would put us into it. It would be filled with an aromatherapeutic, oatmeal anti-itch soothing creamy bath soak. We would be lifted out onto a heated fluffy bath carpet, patted dry by puffy bath towels. Next, comes the most lovely lotion; it's part creme actually. As it soaks into our skin, it relieves any remaining itchies as well as takes the edge off the pain in the muscles and joints. Finally, we slip into the comfy, silky, feminine (ok, fellas out there, you can have flannel pants or athletic shorts or whatever floats your boat--in fact you can opt out of this if you like :)yet warm pj's. ummmmmm into bed and not a single problem falling asleep and we sleep through till morning without an ache, pain, tummy ache, dry mouth, potty call etc.

 

Oh my ######, I'm drooling.

 

xoxo emmie

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emmie, Wake Up. You really are drooling. That was cute. Someone could design a stand up shower with a seat in it. Once the door is closed it could start filling up and you could just enjoy. When done drain and shower off. Such a novel idea. Wish someone out there would hurry up and design it and price it for the average person to afford. I'm suppose to be dreaming but, was awake on and off most of the night. I probably didn't eat any of the right foods last night. Friday nite fish fry then for a late snack we had jalapeno cheese and nachos. Maybe it wasn't such a good idea. It sure was good at the time. Yumm! I'll keep reading and catching up on the days and nites of our lives. Sheryl


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Sheryl,

 

Thanks for the reply. I just logged on and read. You are absolutely right. I've seen those bathtubs on TV that open on the side and you walk right in. The problem is sitting down and affordability.

 

Let's get our thinking caps on!!!!!

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Hi All,

 

Those tubs with the door in the sides are advertised in Arthritis Today magazine. I've been thinking of sending off for more information because I, too, have trouble getting out of a bathtub. I have no trouble getting in! I don't actually know how the things look on the inside, but I can think of several ways they could be made that would work for me. I don't know if it would help everyone.

 

If there were graduated steps inside , like stairs, I could manage to bump my bottom up those stairs and haul myself into a standing position, I think. I could do it most of the time anyway. Sometimes, I am sore all over and might not manage it.

 

I also wondered if there could be a seat inside the tub that you can raise and lower by pushing a botton or something. (kind of like those seats that hook onto stairs and take people up and down stairs.)

 

Or, what about a seat that can tip you into an upright position like those recliners that tip people into a standing position? That seems like a pretty low-tech idea and very do-able!

 

Mary in Texas

 

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Hello nomorepain

It's very good to meet you,and my thoughts are with you.You must feel so tired at the moment.

Emmie your bathtime dream was so gorgeous I actually had my eyes closed and could smell the lotion!

I have a wonderful gadget which is an inflatable bath seat.It lays flat on the bottom of the bath,and then you press a button and it inflates with a back and seat and armrest.You run your bath step in and sit high,then deflate the chair.You can then lay almost flat and soak!Then when done press a button to reinflate and up we go!I can take it out of the bath if I feel I don't need it.

As for itching tight skin,oh I do understand,my arms feel it too. I now know to avoid any creams that have parabens and other chemicals as they make it worse for me.Natural creams with ingredients like chamomile and calendula are wonderful.

Poor old skin it's horrid when it's so itchy.Torture.

I send you calm and peaceful vibes!

lots of love

Alex

x

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