surgery next week

[Rachel]

:-/O.K. Change is good, and always occuring so maybe the change in website is a good thing....
I haven't been on the board in a while, been busy and kinda depressed. I'm down to 10 mg's of prednisone, the mg. has been as low a 8 and as high as 40 in the past year but the weird thing is right now I'm losing weight. about 15 lbs. in the last 2 months. Its not that I mind losing the weight, but being on prednisone.....its just not suppose to happen. The SD is kinda at full force right now, i'm having a really hard time sleeping, the pain in my joints is awful and my finger ulsers are bad in my right hand. I'm actually getting my right thumb cut off at the tip next Thursday, I wasn't surprised, the ulser has gotten to the bone and the doctor said if it infected the bone I could lose the whole finger, so we're being pro active about the situation. I'm normally really upbeat, and I've been trying to stay that way through all this, but I know that my kids and Angie see me getting depressed and I'm not sure how to fix it. I try to keep myself busy and do as much as I can to keep my mind off the disease but at the end of the day............ITS STILL THERE AND I HAVE TO DEAL WITH IT!
O.K. thanks for letting me vent.
Through all this I think that the only thing that helps me the most is the words my dad always told me.
"God never gives you more than you can handle" so I will continue the life the Lord has given me with faith that things will improve. We are all so strong, I know the future will bring a cure for this crappy disease, till then just hang on cause the rides rough!

[thefangs]

hi rachel.........those darn finger ulcers are a horrible thing to deal with! jeff's had his share of pain and loss over the last 6 years, but it is holding steady right now. he tries to stay upbeat as well, but it still gets the better of him every now and again. just know that you are free to vent here and ask questions. if someone can help, they will.........take care, laurie (and jeff)

[Cubby]

Oh Rachel I am so sorry about your thumb. I am out of town right now, so I won't be here much till I get back on June 3.
I had those horrible infected ulcers too so I know thst horrible pain. However that surgery will hopefully solve the problem for you! Your dad was right so hang in there! We will be thinking and praying for you. Good luck and keep us updated!

[sherion]

Rachel,
Sorry you are suffering with the finger ulcers. I'm lucky that I've not had them,,,,yet. good luck on your surgery. I'll be sending good thoughts and prayers your way. Let us know, when you are able, how the surgery went.

P.S. Never heard of losing weight while on prednisone! Maybe it's because you are tapering off and are on a much lower dose. Hope your docs give you something to help you to feel better.

Sherion

[joannern]

I am so sorry. After 30 years of Raynauds I got my first ulcers this past winter. Not fun, but certainly not as bad as yours. Heres hoping the surgery is a success and you are out of pain real soon.

Keep us posted when you can.

Joanne

[enet]

Rachel so sorry to hear about your thumb. I sure hope the surgery goes well and that you start feeling better soon. I will send you good thoughts and prayers..


BIG HUGS((()))

Enet

[Rachel]

Hi everyone, thanks for the concern Ya'll have shown. I have one last question.....When I went to my dr., the one whos gonna do the surgery, he said that I would have to go see a infectious disease dr. after the surgery and be put on some sort of anti-biotics. I read that I may have to have a pic line put in for this type of treatment. is that true? It just a small surgery....outpatient....do ya'll think this could really be something that I would have to do? If so, can anyone tell me how good or bad this treatment is. I'm sure its not guarenteed to work. thanks guys!

[jeffn]

Well they are going to remove part of your thumb because of infection. I think the thought is that the antibiotics will help keep any of that infection from spreading. In addition the antibiotics MAY help clear up some of the other digital ulcers I think. When people go on AP for SD (no I am not turning this into an AP thread) my impression is that if they have digital ulcers that is usually where the first progress is shown, the digital ulcers begin to heal. So perhaps the anti-biotics will do double duty. I have been curious about why with the generally good result of the mino on the digital ulcers why more docs don't try the mino at least for that. There are lots of people that take their AP anti-biotics in an IV form so I don't think the process is the end of the world but I' sure it is not something that is fun either. As to the pic line from what I read, I have no firsthand info, the pic line is preferable to multiple sticks for the IVs particularly if you have SD veins.

Hope it all goes well for you.

[christel]

Having had numerous ulcers and IV antibiotics in the past, I think I can add a little more insight into this situation. The infection getting into the bone can spread even more easily throughout the body. Some of the preferred antibiotics for more severe infections can only be administered intravenously. It is also preferable to have a (PICC) line in place to avoid frequent pokes and to make it easier to dose yourself with the meds. I have lousy veins, too, and couldn't imagine NOT having a permanent access for frequent IV access.

Hang in there, and know that the course of treatment is not inappropriate. Also, the infectious disease doctor is the specialist who will order your antibiotics and monitor you and the infection while you're on them.

Christel

[sammie]

So sorry you are having problems with your finger. Good luck with your surgery. I will keep you in my prayers.
Sammie