Lupus Support Group

perhaps 10 if I'm lucky...although he warned that with my history that I should be prepared to die any day.

I'm 39 years old and I've been diagnosed with Lupus SLE for the past 14 years, although my history of symptoms indicate that I've had lupus since I was a teenager.

I've suffered kidney failure (twice), 4 miscarriages, 2 stillbirths, a stroke, 3 massive DVT's, seizures, short term memory loss and the latest flare that landed me in the hospital was inflamation in the heart and lungs...not to mention the everyday dibilitating pain, rashes, fatigue, migraines and all else that comes with this wretched disease.

All I know today is I'm so tired and I feel so alone and I just don't know what to do with this information. My family is wonderful, but they are all anxiously waiting for me to get better, to "get over this".

I've spent my whole life in denial of this disease, not slowing down until I ended up in the hospital. And then as soon as they released me I was up and running again.

But this last appt. with the new rhuem. has made it significantly more difficult to pretend that this disease isn't life threatening, just annoying.

I guess I just need to hear from others who are struggling with the same thing as I am...and to be able to read other stories and know I'm not alone.

I feel fortunate to have found this site..after spending most of my life dealing with everything by myself, I look forward to reading your stories and getting to know all of you.

Post edited by: tams, at: 06/09/2009 09:38 PM

wow i am so sorry and i will pray for you their is alot of people on here that are wonderful i hope you find this site useful

Welcome to the site. Then people are really great. I am sorry to hear what your rheumy had to say. But, it does sound like he got to you. You can't ignore lupus. And stress is about the worst thing. That is why this site is so great. We all understand. But, you sound like you know what the problem is. You can't keep going until you end up in the hospital. Yes this disease stinks. But, by slowing down and listening to your body, maybe the progression will slow down a bit.

We will always be here for you. Please post often

Alison

Thanks you guys. You really nailed it Alison. I believe that was his intention completely, to scare me into taking this disease seriously. I'm finding this slowing down is incredibly difficult...and after he explained the symptoms I should be looking for, I have been amazed at how often I was just ignoring my body screaming at me to slow down.

Hi tams,

Welcome to the group!

I'm sorry to hear everything your going through. There are so many amazing people in the group with lots of different stories. The great thing is that even though we have different stories we all understand what eachother are going through in some way and how hard it is to live with this disease. If you need anything, we are here for you

Kelly

Tams you have certainly been through the wringer. Its very difficult to accept that you have a chronic illness it took me along time as well but you really need to face this and take better care of yourself. There are so many wonderful people on this site that are here for you anytime so please post as often as you can. Take Care,

Eva

Sorry to hear what you are going through. I am having trouble slowing down myself but I certainly cant compare my small pains to yours. Try to take it one day at a time and enjoy as much as you can every day. Letting go will actually give you more control. And while you should take everything the doc says seriously, remember that no man knows his time or anyone elses time here. So enjoy each day like there is no tomorrow and plan for the future like you will live forever.

Sorry you are going through so much. I could only imagine how you feel right now...5-10 years is a long time, hopefully through research and new developments you will go longer. Have you went to get a second opinion?

We never know... I have been sick off and on throughout my life, and I really think the Lupus was over looked. It wasn't until I lost 45lbs in the military, and then alot of lab work from my PCM and alot of questions. My PCM really was leaning towards between sickle cell or cancer, but then the tracer can back negative so he referred me to a rhematologist...I had been to an hematologist before because I had the anemia even in my teens. So you see they thought it was from have my menses, huh. Well now I don't have a cycle because I had a uterine ablation 2yrs ago, and I am still anemic...

Tams,

Isn't it amazing how we often have to have our backs against the wall before we really "get it." I'm so sorry that you are going through this and can't imagine how scared you must be. But this could be a positive thing if you truly learn from it and listen to your own body.

Blessings.