PDA

View Full Version : New to group



tishka
02-19-2009, 11:21 PM
Hello...thought I would say hi and say I am so glad that I found this site.
I have lupus, raynauds, biliary tree chirrosis and etc...gosh to much to remember.
right now I am dealing with Shingles because of immune suppressive treatment. Well the anitviral med's they put me on made me very ill...had a bad reaction and now wondering if my kidney's are screwed up. This has been a long couple of weeks.
I am 41 and was diagnosised with lupus when I was 23....but the last three years have been the worst. I seem to be in a constant flare...but when they do blood work it is fine. Has anyone had this issue? I wonder what is going on now...getting more scary.
Thanks everyone
tishka

sick n tired
02-19-2009, 11:29 PM
Hey Tiska,

I answered another of your post...What is biliary tree cirosses? Does it have to do with the liver? I am having problems in that area...I also have found life a constant flare...at least it started in the new year. My lungs, and heart have been affected and now they are looking at vasculitis in the brain..it is the liver thing that is scaring me, though.
Also, where are you hurting with the shingles..i am having problems on the side of my face and the doc told me it could be shingles....

lmangusrn
02-19-2009, 11:34 PM
Sorry to hear you are going through some tough times. I was diagnosed only 5 months ago. I have Lupus with overlapping disease of sjogrens syndrome, antiphoslipid antibody syndrome, I think I have raynauds disease-but not yet offically diagnosed. I also have insomia, fibromylagia, and hashimotos disease. Some days I feel like I have everything. I have started some aggressive therapy with multiple medcaitons. Somedays I wonder if it's all worth it. I guess the best thing I can say right now is that we are all here for you and to help you anyway we can. I find the support here the best and the one thing that has helped me get through the days. I hope somehere we be able to give you hope and comfort that you need during any of the rough times.
Keep us posted and I hope there is a ray of sunshine for you today to help brighten your day.

tishka
02-20-2009, 02:19 AM
My biliary tree chirrosis is caused by the lupus...it has caused inflammation to my biliary tree where it closes completely down. They go in and widen it and then put a stent in for a few weeks then remove it. I have had now in two years 7 of these procedures. It can cause problems with the liver...but with me it caused pancreatitis ...very painful. I do hope you aren't having there issues. You will be in my thoughts.
I too have hashimoto's disease. That was the first autoimmune disorder that raised its ugly head. I was 19 and just had my son when they found it...I acquired a goiter and then they figured it out I wasn't just tired because I was a new Mom...doc's don't listen to well.
I really appreciate you guys answering me right back...I am laying here in bed wishing I could sleep but when I lay down my heart pounds even harder and I feel now a little panicky. Which believe me is not normal for me. I am more the quiet stoic type...but not with this. Ever since they gave famciclovar for the shingles and I had my reaction of severe dizziness (think carnival ride) and then vomiting for the motion sickness feeling ... my body has been really strange. So its nice to know I am not alone tonight.
Oh and my shingles started on my thigh then went up to my waist and ribs...but it can start on your face. But if its on your face...please be careful about your eyes! That is important. It can effect them.
Thank you again

mountaindreamer
02-20-2009, 05:07 AM
hi tishka,

i want to welcome you to the forum....hope you are sleeping by now. I am so sorry that you have having a rough tiime of it right now. This is one place where people understand about feeling bad for weeks at a time or even months. Sounds like you are doing a great job of keeping yourself informed and we all know that we are our best advocate.

this is a great group of knowledgeable and compassionate people. I look forward to you being a part of our family.

phyllis

Saysusie
02-20-2009, 10:50 AM
I wrote you a welcome in your other post here in New Members! Just a quick "Welcome" once again.

Peace and Blessings
Saysusie

tishka
02-20-2009, 05:38 PM
I am so sorry that I double posted...my computer kind of went on the fits and I thought I lost the first post and never went to look. Well I will just blame it on the computer and the lupus fog for right now...but thank you everyone for your reply's. It is wonderful to find people that are fighting this fight...seems like life can be very lonely at times with this disease.
Tishka

rob
02-20-2009, 06:19 PM
I am so sorry that I double posted...my computer kind of went on the fits and I thought I lost the first post and never went to look. Well I will just blame it on the computer and the lupus fog for right now...but thank you everyone for your reply's. It is wonderful to find people that are fighting this fight...seems like life can be very lonely at times with this disease.
Tishka

These things happen. Don't worry about it Tishka, I do the same thing all the time.

tishka
02-22-2009, 08:33 PM
Thanks Rob...sure felt silly when I posted twice. But I did get such wonderful people to answer.
Tishka