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I've had sd for 3 yrs the first yr i was going back and forth to the hospital and doctors then we where close for one yr but the beginning of this month i don't want to be touched because it hurts to bad i take somuch meds to sleep that i'am out at night.He just dosen't understand
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Oh yes, I remember that period very well! Can you take him to your doctor so the doc can explain how serious this is and how horribly painful? I had one doctor tell me---"TOO BAD YOU DON'T JUST HAVE CANCER--we have treatment for that".
Swear to God.
Or, how about a scleroderma support group??? Do whatever it takes, to get him to understand. My husband will be happy to talk to him. If you want him to, e-mail me at cubbymikey@aol.com
I wish someone could talk to him but he speaks spanish he understands a english but something this indetailed he is just not getting. I tried to take him to my app. but he convently leaves for some reason
There are ways to deal with the pain other than medications that keep you sedated. I know how painful this disease can be. It has taken me several years, but now my muscle pain, joint pain, etc. has stopped. Sleeping seems to be a problem that just goes with the disease. If you are trying to work, it makes it worse when you don't sleep. If I can't sleep, I just sleep later the next day. I know that if you have small children that is also a problem.
Inflammation is the reason for the pain. I have found an alternative therapy that will get rid of inflammation as long as you follow the program. It is all in the foods you eat. The first thing is quit eating bread, grains, cereal, oats, cereal, sugar (sugar destroys muscle tissue), dairy products (cows milk, yogurt). You will be surprised how quickly you'll see changes. If you are interested in learning more, go to www.drasa.com. His theories have saved my life. dianne
It's hard for anyone to understand, least of all those that have known you a certain way for so long. My meds give me absolutely no desire what so ever, but I can still get up every day and put on a smile. For that he is greatful.
Starre,
You are not alone! It is so frustrating for you and you are beating yourself up really bad...please stop doing that. Your husband is having a hard time wrapping his brain around your diagnosis...this is not unusual for a spouse. Many spouses go into denial just like we do when we receive this diagnosis...and some chose to "ignore" it hoping it will just go away! You cannot make him want to learn and understand this disease, he has to want to...
My husband has been really understanding, but sometimes he also gets frustrated and very scared...but he does tell me about it and we can talk about it. I also have times where I do not want to be touched at all...I hurt, I am tired, and at the time maybe down. Even sexual intercourse is uncomfortable for me...some days are better than others...but I can be honest with my husband and that has made a difference.
A couple of suggestions is: trying to get your husband to talk to another man who's spouse has scleroderma and also consider counseling. Anytime a spouse gets diagnosed with a serious chronic illness, many times a doctor suggests a counselor to help deal with the upheaval the diagnosis may come.
Please hang in there...we are here for you. Take care and God Bless.
-becjo
My husband and I have put our sex life on hold for now. We are both on many meds that diminish our sex drives. With the level of pain i feel, I doubt I would enjoy any of the motions or movements associated with sex. Thank God my husband's ego is healthy enough that he knows this is no reflection of his masculinity.
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