View Full Version : Hi! New to the WHL boards.

08-19-2012, 08:45 PM
Hi, my name is Josie. I was just diagnosed with lupus in June. It was sort of a shock because my rheumatologist had been insisting I had CREST even though I had no symptoms. In fact I had LASIK surgery with no complications, and no Raynaud's either and so on. But finally this past winter, some blood tests came back that pointed me in the direction of lupus. So I still may have CREST but now they are treating me for lupus, which is the same I guess.

Anyway, I did however have these strange episodes my whole life where I was tired and feverish like the flu and I even ended up in the hospital as a child. It happened so often they told my mother that she had munchausen's by proxy and that they would take me away. Needless to say, my parents left town with me against doctors orders. The docs said if I had another episode, I would die.

Well I did have episodes but I'm still here. My parents kept me away from doctors my whole life, until when my mom passed away 6 years ago. The stress of losing her triggered the disease again and now here I am.

I hate prednisone and what it does to my stomach but luckily I haven't gained tons of weight on it. My cousin had lupus too, since she was young but she didn't follow the treatment plan and we lost her to heart problems. So I'm really proactive about taking my meds.

I'm a CEO, married with two fur children but no human babies and I live in Florida. I also write novels in my spare time because traveling is now a rarity (hopefully I'll be able to do that again someday) but I look forward to making friends here :D

08-20-2012, 06:37 AM
Hi, welcome! I am sorry to hear about your illness, it really sucks. But you have come to the write place for understanding and support. i have found that everyone is loving caring and when i could find no understanding anywhere else I found it here. Good luck to you and looking forward to reading more posts. Feel free to send me message anytime you need someone. I am here most of the time stuck in bed or on the couch. LOl!


08-20-2012, 04:42 PM
hello and welcome to whl family i am so sorry but it can take along time to get diagnoses someof the members here have never had positive diagnoses doctors find it hard sometimes with our symptoms some of us have even been told its all in our head. it is good to keep journal with your symptoms and questions you wish to ask doctors that way you are prepared for appointments. i know what it is like to be stuck on couch or bed . we have had very cold winter here in australia i am from sydney and the pain has been severe for me. i am starting new physio program in hydro therapy pool. it helps take the pain away from joints and is not so much pressure on them. if you can get to pool it really does help.

08-20-2012, 06:55 PM
Hi and welcome to the WHL family! I am sorry about what brought you here but I am glad that you found your way into our family.

You said something that I want to stress because it is our primary focus here at WHL. You spoke about someone not taking their meds and losing their life. Our founder lost her daughter for the same reason. One of our goals is to make sure that people understand that there are no natural cures for this disease and not taking your meds can kill you. Blunt but true. Having said that, most people wih Lupus live long productive lives with his disease as long as they stay on top of it and take their meds.

You are going to fit in very well here. The majority of us have "fur children" as well. We love to boast about the
And put pictures in our photo albums. Can't wait to see yours!

08-21-2012, 06:11 PM
Thank you so much for the lovely welcome! Any excuse to share my fur babies makes me happy! :)

Since my diagnosis, my dad has been searching for the "cure" and it's sort of driving me nuts. It's good to have people who understand the journey to finding the right treatment. :)

08-22-2012, 04:00 PM
Hi and welcome to WHL.
Lupus has a lot of other autoimmune buddies who like to tag along. Read the stickys at the tops of the fora. You'll find one that lists over 60 AI diseases. Many of us have an overlap of several, which makes diagnosis even harder.
I understand about your Dad. My husband is a researcher. He's always finding information on the latest research that is being done and sending me the links. If there is ever a break-through, he'll probably be among the first to know! I never fail to take my Plaquenil, which is the only prescription that I'm taking for the AI diseases, and I'm taking several anti-oxidant supplements, which my great rheumy back in Texas suggested. (The one that I have now couldn't care less).

08-24-2012, 08:59 AM
Hello and welcome to our family. While I am so sorry to hear that you are going through so much with this disease, I am very happy that you found us and decided to join us.
I cannot give you better information/advice than what you have received (especially about the fact that there is no cure, only treatments and, with treatment and appropriate lifestyle changes, you can live a long and productive life with Lupus). I just wanted to make sure that you know that we are here 24/7 if you need information, research, support, comfort, or just want to vent. Again...welcome.

Peace and Blessings