View Full Version : Now for a proper Introduction! ( a long one..sorry!)

11-08-2005, 10:37 PM
Hi Everyone!

wow, i just joined yesterday and already i've had 2 responses to posts i've made! Thanks!

Like i started before, I am Jaime, 25. i currently live in portland, OR. My bizarre symptoms fully started when i was about 13. I have always been pretty sun-sensitive, so when my face would flush, people just thought i had "fair" skin. Raynauds syndrome is the symptom that i can first remember clearly. I was living in Salt Lake City at the time, and it was winter...my hands and feet would go WHITE! it was so weird. That was my only symptom for a few years even though the docs ran tests. My senior year of high school i was overcome with severe fatigue, insomnia, muscle and joint pain. I actually had to drop out of the school musical and attend a modified class schedule. It was during that time that i found a rheumatologist and he reccommended Plaquenil to see if it would help with the fatigue and joint pain. After about 3 months, i started feeling more "normal" and went into a 4 year remission. I took my drugs religiously for about 2 years, and then gradually weaned myself off of the plaquenil, and was basically symptom free (aside from occasional fibro-flares) for 2 years afterwards. In February of 2003, In the midst of working a high-stress mall job and going to school part-time, I began having very long bloody noses, mouth sores... i remember being out to dinner with my friend one night and my lip had cracked (from being chapped) and would NOT stop bleeding! I actually used tampons for my bloody noses a couple of times only to have them be soaked through in a matter of 20 minutes! let's just say it was a scary thing, no one could believe it!(except for you guys!) i was diagnosed with idiopathic thrombocytopenia (sp?), basically, a severely low platelet count, and also antiphospholipid antibody. I went on prednisone for 6 weeks, still to this day recall it as probably the worst time in my life. it was so defeating! as happy as i was to see the platelet counts go up each week, i also kept seeing my body morph into someone no one, not even myself recognized. it's still painful for me to look of photos taken during that time. it wasn't just the weight gain or the moon face, it was the insomnia at night, fatigue during the day. I found myself again in a position where i was being forced by my body to give up things i wanted to do. i ended up dropping out of my classes, quitting my job and moving back in with my parents because i couldn't afford to live on my own.
**fast forward-2 years*** I've resigned to the fact that i am under treatment for SLE (although for "insurance reasons" i don't have to say "lupus") and i take my plaquenil, nifedipine and ibuprofen when i need it. i am now a 3/4 time student and i've worked for a very famous coffee company for the last 2 years! i still struggle with managing my stress, because in the past, alot of stress has led to flare-ups, and getting enough rest, so i don't get fatigued. my main goal in joining this board is to learn ways to talk to people about this invisible disease, and to encourage others and find support and encouragment from people who understand, and won't think "you're a hypochondriac" or "you just want attention". believe me, i'd much rather not be dealing with these issues at any age, let alone being young and sometimes feeling like i am 80!
whew! goodnight!

11-09-2005, 04:39 PM
:D Another welcome, Jamie! You've had a long road already, and hopefully as things change and time goes on, your road will smooth out.

Many hugs -- and I'm so glad you've joined us here!

11-09-2005, 07:38 PM
Thanks so much Hatlady!

11-22-2005, 04:16 PM
Hi Jamie 8)
Your story is so much like many of ours: strange symptoms, debilitating fatigue, nose bleeds, mouth sores, etc. etc. etc. And, on top of all of that, having to deal with stress (the biggest culprit in the fight to manage the symptoms of lupus!)
Having to watch the unwanted bodily changes is stressfull enough. You are quite young and have been through so much already. But, you sound as if you are informed about this illness and that you are on the road to self management!! I wish you the very best and want you to know that we are very happy that you have joined us here. I hope that we can be helpful to you and that you always feel welcome and able to express your feelings dealing with Lupus!!
Once again, welcome!!

Peace and Blessings

11-23-2005, 06:53 AM
Welcome Jamie! I empathize with what you're going through as I've had many of the same things. How wonderful to know that you have had this disease in remission for 4 years though.....that means it's likely to do the same again I hope. Just hang in there and try to stay positive. It's hard sometimes, but we're all stronger for it!


11-24-2005, 12:37 AM
i can really identify with a lot of what you're going through. i'm 21 and was diagnosed with systemic lupus 3 years ago. i know what it is like to have to scale way back on school and work and socializing. i'm new here too and i am grateful to have found a network of people who seem to understand so much of what's going on for me. i hope we'll both find the support here that we're looking for.

Taff in Oz
11-25-2005, 04:50 AM
Hi Jamie..

I too am new to this site, I have made 2 posts,and 1 reply to a fellow lupie, and now u r my 2nd reply.... 1st i would like to say to you, u have no need to apologise for your post being long... and i am sure I speak for all us lupies, when i say, this, we are just glad you are here with us, to share your nightmare's and your good times, as we are all in the same boat, to one extent or another......... As for helping you with your problems at this stage, I cant even think straight tonight, or pull myself out of my dark desperate state of despair. Anyway lol.... i think my 1st posting is bigger than yours rof....... So Iwont go into detail about it for now, but all i know is I am about to post another, when i find the strength to do so.......If you find it helps you then keep them coming..
Love hugs and lots more Love hugs Janyce (Taff in Oz)