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Josee
10-04-2008, 06:40 AM
I am new to this support group. I have had lupus for 19 years. I have pretty much had every manifestation of lupus possible. The past 18 months I have been pretty good.(really good)
Last week I started feeling awful again joint pain, fatigue, headaches, seizures, gastrointestinal problems, breathing irregularity and some mental confusion. I have been through all of this before. It is just that for 18 months I felt great and I know that now I am having another flare and I am scared to death. I mean really bloody scared. I am on every drug there is (40 a day), 25 mg prednisone, cell cept, etc...... There isn't many other options out there. Help!!

rob
10-05-2008, 07:48 AM
Hi Josee,

I just wanted to say welcome. Right now the site is experiencing some minor problems, but it should be sorted out ASAP. Keep checking back, and things should be back to normal before too long. Thanks!

Rob
Moderator

KathyW1958
10-05-2008, 01:44 PM
Hi Josee,
Welcome to the forum. I am a long time survivor of this dreadful illness too. I have been on a lot of different medications for the Lupus for the past 14 years. My doctor believes that I have had SLE Lupus since I was 5 years old and I will be 50 in December. I don't blame you for being scared. I get worried when I start flaring or if the flare gets worse. I hope that you get to feeling better and I hope that you post often.

Hugs,
Kathy

Josee
10-18-2008, 08:41 PM
Thank you for welcoming me. I am in a flare and it has attacked my lungs (pleurisy) and kidneys (glomuleri nephritis). They have changed my course of treatment and I am feeling better. I have a great team of doctors and researchers on my team. so that gives me confidence. Yet it does not take the fear out of all of this. I actually get friends tell my that "oh well you must be used to this" It makes me angry at no point does one get used to the unpredictability, loss of control, incedible pain and debilatating fatigue.
Ok so maybe I am a little biter.
Josee

sits_inthe_corner
10-19-2008, 01:14 AM
Awww gentle hugs Josee,

Sorry to hear you are in rough shape and hurting. Welcome to the board. You're right it does suck.

Always trying to figure out if your going to be okay enough to make plans or to complete something you've started.

Hope you get some relief soon.

Oluwa
10-20-2008, 12:34 PM
Hi Josee...

Welcoming you with warm hugs...

Yep, one never gets use to it. Its chronic, one can't get comfy, like an old T-shirt and settle in for the ride. It is an emotional and physical rollercoaster ride.

Seems like an insensitive remark for friends to say...hugs. I am sure they didn't mean it to cause anger. When people are not informed, educated about Lupus, unknowingly they can say crappy things... I think if we did get use to feeling awful we wouldn't strive to feel better.

We have our norm...each of our norm is different, even that norm is hard to keep down day after day, eh?

It is hard to say, don't be scared. I know the fear..the unknown, what maybe next. But try to manage the fear, it can aggravate the flare. Find ways to convert the fear into being in control, controlling your flare. Prescribe to exercise, relaxation techniques....change your eats and drinks to minimize it if you are not already doing so....

As little as taking your medication the same time everyday...can make a difference too.

Really tweak you daily regime and hopefully that will help IT to surrender faster...

HUgs.
Love,
Oluwa

Saysusie
10-21-2008, 09:24 PM
Hi:
Just wanted to add my welcome to the mix. You've already received good information and excellent support & understanding from our members. I just wanted to make sure that I said "welcome" also :lol:

Peace and Blessings
Saysusie

Josee
10-21-2008, 11:18 PM
Thank you for all your advice and support. I do incorporate excercise, good diet and mindfullness based therapy. It gives me the sense that I actually have some control over this disease.

I work part time for a wonderful company. they asked me to come in today to help bring a new client. I worked only five huors and I feel like I have been hit by a mack truck.
Luckily I have a very supportive family and I was able to go straight to bed.
The warm reception I have recieved for this forum, has really helped. I forgot how good it is to talk to people, who relly know all the wild, and scary things this disease can do. The bitterness is subsidding
Josee