Post Edited (Superwoman) : 9/21/2008 5:05:48 PM (GMT-6)
Many of us here may have been to that same dark place, wondering if we even want to go on even for one more day. i know I have been there many times. I seem to do things in cycles, and at least once a month I know I am going to go to that dark place again, and all I have to do is hold on for one more day, one more minute, and it will change. Lupus doesn't change, how I respond to it changes. Most of the time I am committed to not letting Lupus defeat me, but sometimes that will power just does not exist.
Talk to us when you are in the dark places if you can. I know how hard it can be to write to other people during those dark times, but it seems here at this forum, is a safe place to vent feelings.
I can't know what it is like to be your age and sick with Lupus. It didn't get really bad for me until I was older. Like others here I believe that Lupus made me sick often, and I just did not know what it was. Thanks to many good changes lupus is now easier to recognise and diagnose.
Take care Superwoman and speak when you feel you can share. there are others on this list that are young I think, or they are the parents of young people suffering from Lupus.
APS, which caused me to have a stroke in 2002.
Ginny could you tell me what APS is? you had a stroke the same year that I did.;)
In His Grip
AlwaysRosie "We can't control the waves, but we can learn how to surf!!"
Co-Moderator - Lupus Forum
UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)
Clickable Links: Lupus Resources Lupous.Org Lupus Criteria (4 of 11) Lupus Chapter Locator
My treatment today went well although I did experience some nasuea and vomiting. Overall it wasnt as nearly bad as I thought it would be but I do feel a bit drained of energy right now. I'm scheduled for treatments once a month for six months and if I'm responding positively to them I'll start having them on a quarterly basis, so once every 3 months for 2 years. That part isnt that bad but I have to have a weekly CBC and a renal panel every 2 weeks.
You didn't offend me in any way. I actually do blame myself for having lupus. I'm a people pleaser and in order to not upset anyone or be on bad terms with them I often times find myself holding things in and over exerting myself. Medically they can't tell us where lupus comes from and for me this has only made it worse. I say this because no one in my family has lupus and because i've had such major complications at a young age and I've been told that lupus doesnt usually hit younger people as hard as it has hit me. The complications I've had are usually seen in older patients. This in itself has solidified me blaming myself because I feel like God is punishing me. I've sat and I've thought on countless occassions about what I could possibly have done in order to deserve this but I can't come up with a single reason. I may never understand and maybe i'm not supposed to but until science can come up with a reason as to why I have lupus then this is the only explanation that I have to go by.
Post Edited By Moderator (Lynnwood) : 10/19/2008 3:01:11 PM (GMT-6)
I completely understand where you're coming from. I had just turned 21 when I was diagnosed and I was a total mess. The lupus consumed me physically and mentally for a little over a year and then finally I responded to treatment. The only thing that got me through was my boyfriend at the time. We had just gotten together-maybe a couple of months before-so I assumed he would just hit the high road but he stuck by me through the whole thing. I eventually went on to marry him and we have been married for almost 12 yrs now and have 4 kids. He still helps me when I'm "flaring". Never questions anything or harbors any bad feelings, just helps me by sticking by me and making me laugh.
What I'm telling you is a good support system is key to your mental health. For me, when I am mentally well physically I seem to be a little better. Not always perfect or even good but can just get by which is enough for me some days!!
The people on this forum are great (I lurk alot!). Like they've all said-talk talk talk on here.
Feel better-and my thoughts are with you.