My Lupus Story

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Date Joined Oct 2011
Total Posts : 10
   Posted 10/15/2011 4:02 AM (GMT -6)   
Well where should I start?

I guess it all started when I was 19, I was in my senior year of high school. I was living in Europe at the time. I started to get sick right around the time when my mom headed back to the States. I stayed behind because I had 4 months left of school and I wanted my diploma. I worked hard to get it. So I moved in with my bf, my ex now. It started with fatigue, getting colds very often. Back pain. Knee pain. Then I had a DVT. A blood clot in my right leg. Very painful. My primary doctor treated me but I guess it just never went away.

It was about the last two weeks of school and I had finals. The weekend before my exam, my entire right leg, from my hip down, swelled up and turned purple. I went to the emergency. I got mistreated. They thought I had tendonitis. I went through with my finals in EXCRUCIATING pain. I still do not know how I managed to pull that off. I graduated and got my well-deserved diploma but I guess you could say my ex had enough of me being sick all the time and thought it was best for me to go back home. And two weeks later I moved back to the States.

Not 3 days that I had gotten back I got sick again. I had trouble breathing. Even sitting down, it was like I was not getting enough oxygen in my lungs. So I went with my mom to her hospital since she had an appointment that day anyway. They checked me out. And they told me I had blood clots in my entire right leg and in my lungs and I had to be transferred IMMEDIATELY to the big trauma hospital. They told that the plane ride which was 8 hours had caused the blood clot that was in my leg to break off and travel up into my lungs. And they also said when that happens the person only has 1 hour to live. :/ So it's a miracle I'm even alive.

So after I got to the other hospital I was in the ER. I don't quite remember everything. It's kind of hazy. I have a very bad memory now. -_- Anyways I remember I waited about the whole night to get a room with my mom. And when I did get it it was 3am.
I stayed there for 7 days. During those 7 days they squeezed as much blood out of me as they could. After the 30th bottle I just stopped counting. lol I had xrays done and ct-scans. After the 4th day or so I had a sudden pain in my chest. I couldn't breath well. Docs told me my lungs were starting to collapse. I'm guessing due to the blood clots since I had so many of them. On the 6th day my doc told me they were planning to do a small surgery on me. It was to put a filter in me to prevent any further blood clots that would want to travel to my lungs. They said my second PE (blood clots in my lungs) would become fatal. I was awake during this procedure. They went up through my left groin. Not fun. After the procedure I could go home but not before I was put on anticoagulant for life.

During my 1 week stay in the hospital there was talk of me possibly having Lupus. So I was given an appointment to see a rheumatologist since I've had JRA since I was 13. I had the appt for oct. I had gone to many appts checking my blood. Once I got to the hospital and told them I was going to see my rheumy, they said I was incorrect and that I was going to see my Lupus doc. Seems the hospital has a separate lupus clinic. I went to that and was suddenly told I had borderline Lupus. Why borderline? All the tests came back positive for Lupus but they weren't sure if the red on my face was the butterfly rash or was just a healthy flush. I played it off saying it was a flush. LOL I did not want to have this thing called Lupus what-so-ever. But they put me on a low dosage of Plaquenil which took me about a month to start on since I was so scared of the side effects. It helped. They raised the dosage to 200mg 2x a day and so now I have full-blown Lupus.

The first year with Lupus, this blood disorder (Prothrombine Gene Mutation), RA, the constant migraines, anemic, constantly going to the ER, it was rough. Trying to make people understand was not even my intention at first. I tried to live my life as I had before. Obviously not possible. lol. NOW.... I am a 21 year old woman and I am proud to say I have Lupus but Lupus does not have me. I just recently started volunteering at a hospital. It's a support group for teenage Lupus patients. I also have this great and wonderful best friend who also has Lupus and we both started this support group on facebook called FieRce AgainsT LuPuS. Join us if you'd like. The more the merrier. I live in NYC and our group are going to join the Lupus walk here in NYC next week Saturday, the 22nd. I'm doing the best I can for the research in Lupus. My fight is clearly not over.

Yours truly
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