View Full Version : This is my story
04-12-2008, 06:44 PM
Hello, my name is Dede and I was finally diagnosed with Lupus in 2006. I've had psoriasis since I was 18. I started getting sick in 1997. First I came down with pancreatitis. I am not a drinker and I am female and the dr's couldn't understand why I had it. It took me a long time, but I recovered and was doing ok for about 6 mos. and then was diagnosed again with it. I then was hospitalized with intracranial hypertension and had to have my spinal fluid drained to relieve the pressure. Still not sure if this condition is linked, but it is ongoing. In 2000 I was diagnosed with pericarditis, I had a heart attact, and was diagnosed with Reynaud's. Still the dr's were not concerned about an autoimmune disorder. In 2004 I had my gall bladder removed in hopes that there was a stone somewhere causing the pancreatitis. (There wasn't). By 2006 I was severly sick. I had chronic pancreatitis (all the time) and biliary stenosis. At this time I had already been stented 14 times. I had had 4 gi bleeds and several colonoscopy's by now and I finally was diagnosed with crohn's disease. I spent 35 weeks in the hospital this year. Mid year 2007 I was in the hospital ready to have surgery on an abcess caused by the crohn's, and I coded. 52 minutes later I took a breath on my own. A surgeon came in when I was alert enough to talk to him and he was shocked that no one had ever wanted to find out why someone my age was literally falling apart. Tests were done and low and behold positive for lupus. In november last year I had part of my liver, small intestines, biliary tree and part of my pancreas removed. The remaining part of my liver and pancreas were then reattached directly into my small intestines. This was a huge surgery and almost 5 months later I am still recovering. I have had 2 small bowl obstructions since then and many infections, but I am confident that this will get better. Well that's it in a nutshell. I'm hoping to learn from you all. Thanks
sick n tired
04-12-2008, 11:47 PM
Firstly I want to welcome you to this forum....I look forward to getting to know you better.
Oh my Goodness, Doctors can be such idiots at times....It is amazing that they wait until you "die" literally to wonder why you are ill....and you already have crohn's which is autoimmune, too. It seems so logical that they would have looked into the other autoimmunes stuff.
I am so sorry that you have had to go through this, but I am glad that now you have found a doc with a few synapsing brain cells...now perhaps you will have a plan of action.
I am glad that you are recouperating nicely.
Blessings to you,
04-13-2008, 01:22 AM
:shock: you've had a busy time of it. I'm hoping you have payed your dues and can get a break from all the health issues. What medications have they put you on to treat the lupus?
04-13-2008, 10:09 AM
I have to be honest and tell you that it was very difficult for me to read your story as it was so similar to my daughter's story. I have to agree with the doctor who was dumbfounded that noone took the time to find out exactly what was causing so many problems in someone so young. My daughter had some of the same problems when doctors at her college would not believe that she was having problems with her heart at such a young age and, therefore, would do little to nothing for her..telling her it was just stress! Uggh!
I am glad to hear that you are starting to recover and I do hope that, now, your treatments will the type that will actually help you. I am happy that you joined our family here. Everyone here is very helpful, understanding, informative, caring and supportive. We are here for you and to make sure that you know that you are not alone :lol:
Peace and Blessings
sick n tired
04-13-2008, 12:53 PM
I have had some of the same problems with my daughter...she has not been diagnosed with lupus...actually is has been very recently that they acknowledged that she had anything more serious than the flu...right now they are taking the Lupus angle because they are unable to explain why someone so young is having lung and heart problems.
I am totally glad that you have someone who is taking this seriously for you.
Saysusie, I read your tribute to your daughter and to tell you the truth it scares me. I know that the circumstances are different, but from the standpoint of mine and yours wanting and attending college to constantly be stopped because of their illness ....sister, it is a very dark road to travel for a mother.
04-13-2008, 03:23 PM
Hi and welcome.
Your story was educational for me and I am glad you generously shared it. For all those women, and men, that have shared similar experiences, this proves that diligence is necessary.
I hope you feel better soon!
04-13-2008, 03:46 PM
Thank you everyone for your support and kindness. SITC- I am currently on Plaq & methotrexate for my lupus, and a host of others for
all my other great diseases and or ailments! :roll:
Hi Dede, and welcome. You have fought quite a battle. I have to say that your positive attitude despite the nightmare you've been through, is truly inspiring. I'm glad you are here. I think we can learn alot from you as well. Welcome.
04-13-2008, 04:16 PM
Dito what rob said. I'm sure we could learn alot from you...glad you found us :)
05-10-2008, 11:40 AM
How ya doing dede96?
05-10-2008, 08:51 PM
Sits-I'm doing ok. I started working and that is going good, but I do have pericarditis. It is painful but I am trying to work through it. Thank you for asking. I hope everything is going well for you!!
05-11-2008, 01:05 AM
:D I'm doing alright.
Wow dede...what's the treatment for pericarditis? I hope your job isn't physically stressful....or stressful in any way.
I get enough aches and pains in my chest from the arthritis. Every time I have to lift a heavy file or move a box of paper.
For the most part I'm doing pretty darned good. :)
05-11-2008, 12:31 PM
Sits-basically right now the dr. is just monitoring the fluid around my heart. Motrin is the only thing right now to help with the inflammation and pain. If the fluid increases they will have to insert a needle to try to drain it but that is risky due to possible infection so close to the heart. As far as my job, no it is not stressful at all. They are wonderful there and luckily I had explained to them my lengthy medical history before hire.
05-11-2008, 01:09 PM
Are there follow up visits to keep an eye on you?
I'm very happy for you in your new job. That's great that they are so understanding.
So far my work place has been understands. When they hired me I was healthy and physically able to do all of the physical aspects of my job.
But now I can no longer climb up and down a ladder with a heavy box of files. So we have moved our stored files to an off site work house and if I need something "they" pick it and bring it to me :lol: got to love it.
Will the inflamtion correct it's self. Is it possible the fluid will clear off on it's own?
05-11-2008, 06:44 PM
I just read your story and frankly, I am humbled by your strength and the grace with which you have faced your health challenges. Your courage is inspiring. Thank you for joining us.
05-17-2008, 10:36 AM
I diito Pearl. I am humbled by your strength and the grace you have faced challeneges. I hope you continue to stay and chat.
This is a great forum to share and express what you are living through.
05-17-2008, 02:03 PM
Hi, dede96. Sounds like you're doing better...that's good to hear! I've had pericarditis many times - in the hospital 7 or 8 times the first year I was diagnosed. After unsuccessful attempts to control it with high dose steroids, a cardiologist at Mayo Clinic finally prescribed colchicine (something mentioned by a young intern wayyyyy back in the beginning, but nobody listened...duh.) Anyway, that seemed to do the trick. I still have some problems with pericarditis, but nothing like it was before. Might want to ask about that, if NSAIDs don't do the trick.
You've survived so much.....takes a lot of courage! I'm impressed, dede96!