View Full Version : New to site, not to lupus!!! (20 years in)

08-20-2013, 09:16 PM
My name is Heather. I have had lupus for 20 years now. I was diagnosed at 19 (am currently 39). I am currently a full time elementary teacher from Ontario (Canada). My daughter is now 15 and has low vision because of my disease. She attends the school for the blind in Ontario. I would love to answer questions, ask questions, or chat to listen! Here are some things I have been through...
- diagnosed at 19 with systemic lupus in the kidneys (glomerulonephritis)
- have been living 20 years with stage 3 kidney disease
- diagnosed at 22 with APLS (anti-phospholipid antibody syndrome) and presented with a blood clot in the lung
- had a premature baby when I was 24 (2 pounds 8 oz) and nearly did not make it through the birth-- had to have 5 litres of blood removed from my abdomen 2 days later, had 7 blood transfusions, was in intensive care for 5 days after the C-section and didn't wake up for 4-5 days... didn't even know I had a baby)
- had chemo for 1 1/2 years at age 24
- was in remission for 15 years and am now having my first flare in 15 years
- just started having mini strokes but thought they were painless migraines (from APLS)
- while in remission I have had many strange things... bizarre swelling of one eye only
- began anti-depressants at age 34 which was a life changer for the better
- have been on 28 pills per day at one time
- have Raynaud's,
- have had and do experience joint pain (not all the time)
- have lots of foot pain and strange leg stuff
- currently having leg "humming"
- just started plaquenil
- have been on many scary doses of prednisons
- have been on cozaar, hydrochlorothiazide and Coumadin for lots of years
- taking Cymbalta since I was 34
- just started another 6 week round of prednisone and am now on plaquenil for good
- now having struggles with TIA's from APLS


Now I will post on boards where I am having my biggest problems at the moment!!!! Good to know we are never alone!!

08-21-2013, 01:59 PM
Hello Heather and welcome to our family. While I am sorry that you have this disease and that you are dealing with so many symptoms, I am glad that you found us and that you decided to join us. You have come to the right place if you want to share, find information, make friends, or just vent..we are here for you and we want to help you in any way that we can. Again...Welcome!!! Peace and Blessings -Namaste; SAYSUSIE

08-21-2013, 09:40 PM
Thank you very much!!!