The closer to surgery time, the more worried I get.

Hi:

I am a newbie on the board. I am thankful I found you guys. I have read through many posts and have found out some very great information. However, none of it is close enough to my own problem.

I am a 33, soon to be 34-year-old mother of two daughters who are 10 years apart in age. I have been having joint problems and problems with fatigue, dental, and every kind of illness you can imagine. Just this past February I had pneumonia. It was rather ironic being that I had received the flu vaccine along with the pneumonia vaccine months prior because I had been diagnosed with systemic lupus. I also have degenerative joint disease, ulnar neuropathy in my right arm that cannot be surgically corrected, and according to my neurologist, I have neuropathy in my lower legs/feet and arms/hands. Yet considering the years I have been on a keyboard, I have been told that my carpal tunnel is not as bad as it was expected to be.

Every day I battle fatigue and work hard to keep my left knee and left hip working properly to put off as long as possible a replacement surgery. I have been on depo provera since my youngest child was born in January of 1997.

After long discussions with my husband and with each of my doctors, we have all come to the conclusion that a partial hysterectomy would be the best choice for me considering my health and the fact that I take so much medication to keep the lupus and complications due to lupus under control. Each and every medication I take plainly says "do not take while pregnant or nursing". Everyone, including myself, can tell that my health is not what it used to be. I am constantly feeling run-down. An elderly lady tried to tell me if was because I didn't have a period every month. I informed her that my dear mother had lived well and felt well for over 20-some years and didn't have a period either.

Another reason that has me worried is the fact that I am blind. I do have some light perception but it is very blurry and only useful if I am a few inches in front of large large print. I can remember being terrified during the birth of my last child. I couldn't see a thing. All I knew was I was in severe pain. The doctor was pretty good about explaining what was happening but there was a slight complication and all explaining stopped after a sharp, "don't push!"

The one thing I will be thankful for is that I will be put to sleep for this. My doctor has said that he is hoping to do a vaginal surgery but is not sure if it will end up that way due to the lupus and checking on my kidneys and other organs that lupus can wreak havoc on. All I do know is that he is going to remove my uterus and leave my ovaries as long as there are no signs disease.

My mother will be starting back to work around the time I come home. I don't know if I can tolerate my MIL all day or not but there will have to be someone here to feed and take out my guide dog.

In addition to all this, my doctor has said that just as it took me longer to get over the pneumonia, it will take me longer to get over this because my immune system is compromised from the lupus. I chickened out of this surgery a few years ago but this time I know it is time to get it done. The depo has decreased my libido for so many years that it has caused problems with my marriage. I worry about the possibility of getting pregnant all the time. I know that should it happen, abortion would be the only way to go because of my medications. A baby wouldn't stand a chance of growing normally in a body as messed up as mine is.

It may be silly but at times I find myself crying for having it done but yet other times I smile at the thought of knowing our lives, my life in particular will be better for it. I am hoping the lousy mood swings will go away along with the hot flashes and night sweats that my family has learned to deal with. I can go from loving mother to superwitch at the drop of a hat. The anti-depressant my rheumatologist put me on has helped some but I want a more normal life. Everyone I have spoke to in similar situations, with exception of lupus and blindness, say they are much better off emotionally and physically.

Thanks for listening,

Paise

Hang in there, girl. I'm with you about the nervousness as surgery dates gets closer. You have so many more issues than I do but I think our emotions are sure similar!

You sound like you've been pretty strong through everything so be sure to remember that and give yourself credit for it during the down times.

Holding your hand while we both are "ladies in waiting".....

Paise,
Hang in there! Remember when your making a decision such as hysterectomy, that word doesn't come easy.

But I wish I hadn't waited this long to book my castle visit. I am now going in on Thursday and happy to say...Yeah!

Good luck and remember, what ever will give you a better quality of better health is the way to go.
Prayers to you.

You are very brave and I'm sure the decisions you make will be the right ones. I will be sending you well wishes and positive vibes!! Lorit

Ladies, I don't know what to say. Tears of joy and understanding are rolling down my cheeks right now. I have spent about three years trying to decide when would be the right time. The lupus was the definitive factor. I have two girls and would love to have a little boy but I know that the shape my health is in I would be lucky to carry a baby to term let alone have it born healthy. It wouldn't be fair to a child to be born into such a situation.

I am hoping that after I recoup from the surgery and the doctor gives the okay for (sex) that the tension between my husband and I will diminish.

I am so sorry that all of you are afraid, myself included, but at least we are not alone in our fear. Together, I think we will get through this fine.

I am going to try to get my aunt's laptop for when I get out of the hospital because I have already been told I'll have bed rest. If I have our recliner moved I can hook the laptop into our house computers' network. This way if I feel well enough to pop on and post a note or two, I will be able to without the pain of sitting at my desktop. I already have painful times at it anyhow because of the joint disease. I'll have to drag out my magnifier for the laptop but I think I can do it. If I get the laptop and my posts have severe spelling errors don't worry. Just remember that I am using a small screen and don't have a screen reader. My personal computer is hooked up to two towers with a KVM switch and I use a 21 inch monitor with large fonts.

Take care and rest well. My prayers and thoughts are with you all. Thank you again for all the support. It did my heart so much good.

Paise

((((Paise)))) I was so touched by your story. What a strong, determined young, woman you are and a fine example to your two children. Your strength and determination are amazing. You know the importance of continuing to keep going - and not giving up. I can imagine that it is not easy to do when you have a lot of health issues, but you are doing it. You are encouraging to me as well. It is so important to appreciate life, health, and to count all of our blessings. I'm so glad that you found this website. The sisters here are wonderful at providing support, encouragement, and a listening ear. We have different experiences, but we share a common goal...being there for one another. Know that you are not alone, Paise.

Paise,

Please know that you have my respect and admiration, you are an amazing woman and I suspect a wonderful mother.

We are all here for each other...the good, the bad and the ugly (moods that is) you can share it all with us, we don't judge anyone.

Many s,

Donna