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Leaniebean
02-11-2013, 05:16 PM
Hi everyone alike many of you I was looking for a place to come and vent and share my experience with people who suffer or possibly suffer alike me. My story started roughly ten years ago and at the age 26 I now see I have a long road ahead of me. In high school I would get sick and suffer from EXTrEmE migraines laughing to myself now I recall a teacher telling me I was a hypercaundriac. Well wrong I am still waiting for my rhemy to put the final diagnosis on my disease he's going with Lupus. No doctor ever listened until recently, this past summer I suffered from bone pains that the only thing I could compare them to was fire. My feet and legs would go numb underneath me and eventually I randomly lost my big toenail (raynauds). I knew something was wrong my migraines eventually became so severe that I could go to bed perfectly fine and 2 hours late head feeling like it was going to burst and lead to me throwing up. It was happening as often as 3-5 times a week. I even became dehydrated with traces of protein in my urine. I knew sonething was wrong i went from weighing 112pounds down to 99 and back up to 105, even my hair and blood pressure was playing tricks on me. My pcp saw some lesions on my hand and ran an Ana panel my results came back 1:640 my rhuemy ran addtl work leading to a 2 hour thoro visit. He ran a C4 compleat and with decreased levels it also indicates Lupus. I personally think he hasn't put the final diagnosis because my WBC and RBC are normal. I've been on plaquenil for a few months and its starting to work but I have my frustrations with it all. Some days I wake up scared, like ok yeah today I'm fine but that won't be the case. I don't vent to my loved ones because they wouldn't understand how I feel. I live life knowing I have some AI disease and I NEVER know when it will get bad I just know the day is coming and to top it all off I am dependent on this medicine. I went 5 days without it and now I am covered in leaions and rashes and even my migraines come back. Some days I am internally more sad than what I show the world :(

Secretly becoming depressed...... What hurts the most is the fear that my child may get it I feel guilty

steve.b
02-11-2013, 10:47 PM
hi, and welcome to a family that does understand.

i would like to start my comments by reminding you that only 2% of lupus sufferers recieve it heredically.

i have 2 children that have both received health isses through my genes.... it is not an easy thing to accept......
that i have made my children imperfect.

also i have found many of us need to take different medications.
one that works well for quite a few of us is called depression medications
that is not to say that yu need to be depressed to take it.........
it means that our body need this type of medication to help balance what lupus is doing to us.
if you do not take it..... depression may or may not result.
but that feeling and unbalance cannot be corrected without it.

please takesome time to read a few of the older posts.....
they are our personal experiences with lupus.
and our search feature is quite useful ifyou want to look at any particular subject.


again welcome.

jmail
02-12-2013, 03:41 PM
Hi Leaniebean, welcome to WHL from here, also. The thing about passing stuff on to your kids is that someone passed it on to you, and someone passed it on to them, all the way back to the days of most likely pre-historic man, who probably picked up a dirty rock, stuck it in his mouth, wondering "is this edible?", and ingested a virus from the experiment. Viola, auto-immune has been bred into us. All it takes is a "trigger" to set it off, and the immune system targets parts of the body instead of pathogens. Oh well... So I blame my dad for it all... lolol |;^)

Do you have trouble with the plaquenil? I take mine in the morning with breakfast, and the 2nd dose in the afternoon with lunch. That way, it's out of my system when I try to sleep at night. No more weird dreams, and it no longer upsets my stomach. Don't forget now, that diagnoses take a while to develop. For one thing, one AI disease resembles the next, which resembles the next, etc., so most docs are very cautious when it comes to diagnosing something as being "specifically" one thing or maybe something different.

Leaniebean
02-12-2013, 08:43 PM
Thanks you guys and Jmail your prehistoric comment is really funny the first I've heard. But actually come to find out my family gets our AI diseases probably from my grandmother who previously suffered from Sarcadosis. Go figure right lol. But I do have a uncle who suffered terribly from Chrones disease, I fact they took out 1/3 of his intestine, then there is me and I have a cousin who it looks as though he has Celiac disease. I wonder if this does come from my ancestry my great, great grandfather was from Madagascar. It sounds crazy but my sister was born WITHOUT a diaphragm. There's a lot about my family I am just now discovering. I know I shouldn't feel guilty but I can't help it. I am more so scared she will suffer and of course I don't want it to happen I pray she doesn't. Since its all new to me it's just going to take some adjusting. It's comforting to come to a forum with similar lives who understand and don't give the same bubble head response I've heard so much I could smack someone, how many times do I have to hear "well it's going to be okay". And as far as the plaquenil I am very fortunate it doesn't make me sick at all. I have a really weak stomach the mobi and Celebrex were torture for me. How did you find out what was going in with you guys?