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  Hands, Wrists, Arms, and Shoulders

As I said before, I found out that I had Scleroderma in 1993. 

In 1992-93, I'd had two carpal tunnel surgeries, and the one for the left hand didn't turn out so good. I was rushed to the Hand Doctor's office just a few hours after my surgery. I was in intense pain, and in tears, and my hand was like a claw. I couldn't use it, I couldn't stand it... the pain...it was unbearable! They ripped off the cast, thinking it was a blood clot or something. It ended up to be RSD. (Reflex Sympathetic Dystrophy). They put a "tens unit" on my arm. That was so my brain would tell my hand that it didn't hurt. Well, with that, and after 2 very strong pain pills, it did ease up some, but it took many weeks before I could use that hand at all. I wore the tens unit for a long time after that.

Still now, here we are in November of 1999, six plus years after, and that hand is still very bad. Still quite a bit of pain, especially when it gets cold or if I exert it. It still gets claw like when it's in trouble. There is no  sure way to tell, but it may have been partially Scleroderma all along. Finally when the hand specialist did all he could, and sent me everywhere he could think of, I finally got sent to the wonderful Doctor that I have had ever since.

I also have Raynaud's Phenomenon, and I will talk more about that another time. The kind of Scleroderma I have is called Crest

CREST Syndrome ( limited Systemic Sclerosis)

C- Calcinosis, is the formation of tiny deposits of calcium in the skin. This is seen as hard whitish areas in the skin, commonly around the joints of the elbows, knees, or fingers. These firm deposits can be tender, can become infected.

R- Raynaud's Phenomenon, is a condition that causes poor blood flow in one or more of the following, fingers, toes, ears, or tip of the nose. Sometimes, it may affect internal organs. Spasms of the small blood vessels cause changes varying from white to blue to red. Exposure to the cold or emotional stress can intensify the problem. There may be pain, tingling, numbness or a burning sensation. I have also heard some people say that their tongue gets cold, and burns.

E- Esophageal Dysfunction, The loss of normal motility of the lower esophagus. This makes it difficult to swallow. Most people have acid reflux, with heartburn. Should the esophagus become too restricted, dilation is the usually the treatment. To help in not having the problem, or less harsh reflux action, several small meals a day should be taken combined with small amounts of liquids. Do not eat before bed. Sitting upright one to two hours before bed is advised. Blocks may be used to raise the head of the bed. Antacids may be prescribed for use, generally after meals and at bedtime. Your Doctor can prescribe medicine for this, if it gets too bad.

S- Sclerodactyly, A condition in which the skin of the fingers becomes taut, thin and shiny. Fingers and toes may not bend or may become fixed in a flexed or almost unmovable position. Your Doctor may order physical therapyto help this.

T- Telangiectasia, The manifestation of capillaries near the surface of the skin. They will blanch on pressure. These capillaries become dilated and visible, and they are mostly on the face, lips, tongue, fingers and palms. 

Note: Scleroderma is a chronic connective tissue disease, expressed clinically by systemic sclerosis and diffuse fibrosis of the skin and viscera. This is a progressive degenerative disorder of the blood vessels, skin, lungs, kidneys, heart and GI tract and for this reason this disease plays a major role in fibrosis research. You can die from this terrible disease.
PubMed. Harefuah 2002 Nov;141(11):973-8, 1009

Thanks to Jude from SDWorld. Please use the links below for more information

http://www.sclero.org/news/a-to-z.html

Also see: Skin Fibrosis:
http://www.sclero.org/medical/symptoms/skin/fibrosis.html

And Pulmonary Fibrosis:
http://www.sclero.org/medical/symptoms/pulmonary/fibrosis.html

I was off work for quite a while, and had a lot of therapy, and 2 nerve blocks, which didn't work. Finally, after several month's, I returned to work on a part-time basis. I slowly worked my way up to full time, but I never fully got back up to par. To this date, my left hand and arm are somewhat worse than the right one. I cannot fully use the hand, and am very clumsy with both hands. The ulna nerve is affected on the left side, and that arm burns and stings all the time. It is  quite tingly feeling, and at the same time always feels cold, like there's ice on it, but also burns like someone was holding a match to it. It can be 90 degrees outside, and if the wind blows on my arm, it burns and hurts something awful.

 I used to work on craft projects, (ceramics and macramé), but had to give that up quite a few years ago. There is no strength in either hand and they are not coordinated enough to work with small objects or do tedious tasks. If I work a jig saw puzzle, I have to pick up the pieces with two hands. This is very frustrating to a person. My hands, were my life as far as my job went. I worked for printing companies for over 30 years, and did bindery work. You must be very coordinated, and have strong hands and fingers for this type of work. Needless to say, I don't work anymore, nor do I do a large portion of the things I used to do. Common, ordinary things one takes for granted. 

I have ridge marks just above each elbow on the back of each arm. It doesn't hurt, but looks ugly, but ugly is a way of life now. 

The skin is stretched very tight on the arms and hands, and many other body parts. It feels like it is taped up tightly. It really pulls, and feels like it's going to rip apart, and it is also very very dry. I must relieve that tight feeling as best as possible with a special lotion, and I use a great deal of baby oil gel, and skin creams. I have Scleroderma spots all over my hands and arms. They don't hurt either, just a gentle reminder of what I have.

My shoulders, elbows, wrists, and hands are sore and stiff. I can't hardly do anything physical without feeling the pain and agony. It is even difficult to turn over in bed.

Am I blue? I don't think so. I do, for now at least, think that I have accepted what is wrong with me and I feel grateful, that I am so blessed that it is not any worse at this time. 

In 1993, when my Doctor first told me what I had, I asked him "what was the worst case scenario of this disease", and his reply was, "well, you could die". 

I didn't even know what Scleroderma was. There was hardly any information on it at that time. Thanks to the internet, and a bunch of caring individuals, 

there are now sources for information, support, and comfort. 

Well, so far I am not dead, and it could be worse, I could have cancer or something equally as bad. I truly believe that this is in God's plan for me, and I might as well accept it as I cannot change it! What would I say? I could throw up my hands and say...

"Hey God, I don't want this".....     

but no... I don't think that would work!

© 9-1999 by Bunny

     and...so...

Fix your thoughts on what is true and good and right. Think about things that are pure and lovely, and dwell on the fine good things in others. Think about all you can praise GOD for and be glad about. 

Philippians 4:8 

I will talk more about me and Scleroderma in the future, so come back soon!

Update: October 2001

In January of 2000, it was determined that I had breast cancer. I had a complete mastectomy, and as far as I know now, I am cancer free. I will talk more about this on, so check back often.

Update April 2003

The following to one of my Words members that has recently found out she has Scleroderma.

Hi Sharon........don't get too far ahead of yourself hon!
It is impossible to do comparisons with SD. No two people or cases are alike. Just because I have some things doesn't mean you are going to have them. No doctor can tell you for sure that this or that is going to happen or not happen.

Just try to live your life the best and as normally as you can and don't stay so stressed out about it. That is the worst thing you can do to yourself. Try to get involved in things and stay as busy as you can, and you won't think about it so much, and then it won't worry or bother you as much. I forget I even have it for days and weeks, and even months.

There are millions of people with Raynauds and most of them don't have SD, but most SD people have Raynauds, and are also very cold all over, but there are things you can do to be more comfortable with that. I wear gloves or mittens almost all year around, and sometimes use hand warmers. I am usually always cold, and people have gotten used to it. I wear sweatshirts & jackets in summer, and stay out of the
air-conditioning pretty much, and we can find a little humor in that. People say when Bunny takes off her sweatshirt, you know it's hot out! ......smile
Actually, I live a pretty normal life because I have learned not to feel sorry for myself, and I have learned how to cope with most of this.

I have the neuropathy in my left arm because of cancer, not because of SD.
I have Carpal Tunnel & RSD in that arm & hand too. But I worked all my life using my hands and arms and no one can say that it is from SD instead of the kind of work that I did.
I have a overlap of IBS, but not everyone has that. Besides that's very common.
I also have RLS which is Restless Leg Syndrome, and is not debilitating, just annoying, and I don't think it comes because of SD, or maybe it does..
I also have had some bouts with a form of TB, which has increased the damage to my lungs along with years of smoking so that can't be totally blamed on SD.
I have also had a heart attack, and heart surgery, which was genetic, and not related to SD.
I have the start of Macular Degeneration, which I don't believe is any relation.
I have RA and Osteo which may or may not be related as it runs in my family also.
I am 64 years old, and a lot could be age related also.

My sickest times were because of cancer and heart problems and TB, not SD!

Don' t worry so much. I can't stress how important that is for you. You have SD...so now forget it, and go on with your life.
I have to be honest, and repeat what I have said in my pages. I am blessed! I really am. There are many people much worse off than you or I, and they don't have SD. There are many other worse things than SD. Trust me on this one.
If you could read some of the so very sad emails that I get day after day, you would know what I mean, and also, this has brought me much closer to God, which is the really important blessing.
I don't believe that I would be doing Words or my pages if I hadn't gotten sick, and I am so happy I didn't have to miss out on this great joy in my life.
Sharing God's word with so many other people. And if SD and the other illnesses is what brought me to this point, then I am glad that I have them. Yes.....GLAD

So now, buckle up and cheer up, and don't look for things that may never happen. If you don't have enough to keep you busy, then go and help someone that needs it!

Hope you aren't mad at me...I know I am being kind of tough on you, but remember dear one...... I am here and I love you, and I am telling you things I wish someone would have told me 10 years ago. There weren't even websites about it then. Just a stupid little pamphlet in the doctors office.

Hi........me again........A few of my victories I forgot to mention. 

God is good!

Thirty-Nine months cancer free!

One year plus since my heart surgery. 
Btw, that was a 911 Code Blue, 
and they put the defibulators on me twice while awake. 
That's how close it was. First one was 100 jewels, 
and when they did it the 2nd time it was 200 jewels.
You don't want to try that one. It was horrible. I am still
very jumpy more than a year later. My whole body jerks
at the slightest movement or noise even if I am expecting it.

Enough lung improvement that I haven't had my 
oxygen since the beginning of Dec 2002.


So all of that has nothing to do with SD, 
and any or all of them could have killed me by now, 
so do you see what I mean when I say you should stop worrying?

Love.......Bunny

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