PDA

View Full Version : lupus survivor



sunnykay82
11-30-2011, 08:50 PM
Hi all, my name is Kerry-ann and this is my first time on this site. I was diagnosed with Lupus in March of 2007 after developing pericarditis and almost losing my life. I actually had symptoms of the disease for many years prior to my diagnosis but that's a whole other story. Wow i just realized it's been almost 5 years since my diagnosis; a diagnosis that changed my life forever! Anyway living with Lupus has been an ongoing battle. On one hand I feel so lucky and blessed that I have not had any major health crises sinces 2007 but I attribute that to my following up with my Rhuemy every 3 months religiously since 2007. But on the other hand its frustrating because I constantly have flares despite being on prednisone, plaquenil and Imuran. I finally got off the prednison in June of this year only to get back on 1 month later. Now I'm off again but those familiar feelings are coming back. The fatigue, holy crap!, pains all over, poor sleep, symptoms that come and go randomly that make my feel like a hypochondriac and still developing new symptoms each time! I'm now just on Cellcept. I don't think its enough but I'm willing to give it a try. I'm as fat as a cow after 4 years on prednisone but what are you gonna do. As much as I hate the stuff, prednisone really works for me. Well enough for now. I look forward to more post and being able to share in your stories.

kim,l
11-30-2011, 11:18 PM
hi kerry ann welcome whl i was diagnosed 4 years ago but like you have had my symptoms for many years, i also flare a lot even though i am on medications these are prednisone plaquenil,mexotrexate, we all have all the symptoms you are describing and you are not a hypochondriac. i am also a large woman i was before i took prednisone but now am worse i also have thyroid problems. and angina. we are here to help you as much as we can even if you just want to vent your frustrations we are like a family and now you are part of us . take care and hugs

steve.b
12-01-2011, 12:01 AM
hi kerry ann, and welcome to our cyber family.
glad that you have found us.
also good to see you have started adding to other threads.
these threads are our personal experiences on how we deal with lupus, so please read and comment.

again welcome.

tgal
12-01-2011, 02:35 AM
Hi Kerry Ann! Welcome to WHL. We are so glad that you found us. Please make yourself at home and I look forward to getting to know you

n.mac
12-01-2011, 05:27 AM
Welcome to the site! I have always been a "large man" and prednisone certainly hasn't made that easier.
Treating lupus can certainly be a balancing act-enough meds to help but not to much to create more harm than good
Take care-Niall

magistramarla
12-01-2011, 10:47 PM
Hi Kerry Ann.
Welcome to WHL. We're glad that you found us. It really helps to chat and vent with others who are dealing with the same things.
Hugs,
Marla

sunnykay82
12-27-2011, 06:51 PM
Hi Everyone!
I'm so excited to see how many people responded to my message. I should have joined a long time ago because througout the years I havent felt like anyone, even my dear family, really understood what I'm going through. Well just an update. The last time I wrote I had just started Cellcept and was thinking that it was not working. Well I must say that I do actually think its working. Normally by now I would need to be back on the prednisone but so far so good. I have noticed some new symptoms though such as my hand swelling, burning and turning red in reaction to cold but from my research I understand that this may be Reynaulds syndrome and the symptoms are tolerable so I can't complain. What I've noticed even more is how much my body responds poorly to stress! I've always prided my self with being a multi-tasker; I've worked in a high streess environment for several years and have actually thrived but recently I've been under stress due to my husband employment being in jeopardy and within just a few days all my symptoms got worse!!! I literally had to take a few days off and try to regroup and I'm feeling a lot better. Thank you all for listening and I hope everyone had a good holiday and a happy new year when it comes

magistramarla
12-27-2011, 07:50 PM
Hi Kerry Ann,
I'm glad that the Cellcept is working for you. Sometimes we just have to give the meds a little time to start working.
I know what you mean about the stress. I used to teach in a huge high school (over 3000 students). The classes and the paperwork was highly stressful, but I thrived on it until these AI diseases really started to hit me hard. I finally got to the point where I felt that continuing to teach was ruining my health and that I wasn't doing my job the way that I should be. My hubby got the chance to go to another state to work on a PHD, so we jumped at it. I'm much calmer now - living near the beach on the coast of CA.
I hated to give up the teaching that I loved, but it was probably the best thing that I could do for my health.
I hope that you continue to feel better.
Hugs,
Marla

steve.b
12-27-2011, 09:31 PM
hi kerry ann,
welcome back.

it is good to see you are surviving.

thankyou for updating us