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Date Joined Jan 2010
Total Posts : 14
Posted 6/13/2010 11:33 PM (GMT -6)
Hey there everybody,
Lately ive been thinking since school has let out. I have had lupus since i was 10 and i am now 15 soon to be 16. Its a fight that is taking everything out of me. Summer is my time to relax and regroup for the next school year coming in. Ive been really sick lately though and no one can give me an answer. I know lots of you probably agree with me. that its the most FUSTRATING disease there is. There is never a 100% answer to what is wrong with you. Just right before the last week of school i woke up with a horrible pain in my calf muscle, almost like a charlie horse. My calf muscle swelled 3 inches bigger then the other. We went to the hospital because it got to the point i couldnt even walk. They did a ultra sound and they found 2 bloodclots. With my medication ( celcept, prograf, enapril, plaquenil,steriod,zoloft,vitamin d, and calcium) i couldnt take blood thinners. i was immediately admitted into the hospital to get rid of the bloodclot through iv's so i didnt have a stroke or anything. I missed all the studying for finals and i couldnt take them, so now im stuck in summer school. i hate every minute of this disease and im very very fustrated. I have always played soccer and i love the sport, im trying to play highschool and it is the most painful thing ive done in a really long time. I come home crying because i just want to play all the time, i gave up a lot of my life to play the sport. Its all i know, and i still want to play, im trying everything to play. But nothing is going my way. What helps you guys when you exercise? im just trying to find a medium for me and i really need it. Thanks everyone(:
To young to be feeling this way.
Lupus, arthritis, shrinking lung syndrome, and conversion disorder.
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Date Joined Mar 2006
Total Posts : 2604
Posted 6/14/2010 9:26 AM (GMT -6)
Bekkah, you're right. You're too young to be feeling this way! I'm so sorry you're having to go to summer school because summer would be a great time for you to get lots and lots of rest. I'm sorry soccer has become so painful for you. If you improve and find that you can play soccer again, you might think about
indoor soccer so that you can stay out of the sun. In fact, the sun may be one of the things that makes it so painful.
Find someone to talk to. A therapist, clergy, or someone that can help you. It's so hard for the average person, especially kids your age, to understand what you're going through and most people don't really want to hear about
it, but you need someone to talk to and someone who can understand you and help you. My therapist is real good at listening to me vent, but even more important, when I'm feeling worse, she always tries to get me to figure out what I might have done to bring on a flare. Now I'm a lot more thoughtful about
what I do.
Don't give up. I was in a bad 6 year flare and I have been coming out of it for about
six months now. Starting to feel almost normal again. So try to stay positive because there can be life after lupus.
Keep your chin up and stick around here more. We really do understand. It sucks. And it would suck a hundred times more to have lupus at 15 than at 60!
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.
plaquenil, neurontin, synthroid, triamterene, actonel, niaspan, lunesta, cymbalta, vitamin D, Calcium, Multi Vit.
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Date Joined Feb 2009
Total Posts : 1876
Posted 6/14/2010 2:42 PM (GMT -6)
Bekkah, I am sorry you are so young having to deal with these issues.
Try to talk to your family or someone and make plans to do something fun this summer, regardless of your summer school. Even if it is just a weekend. I hope summer school will go ok for you. I spent 5 years in summer school b/c of math. Try to think of this as a temporary set back and think that next year will be better. I can't imagine how rough it would be to be 15 with these issues. I am 55 and hate the toll it's taken on my health. Make sure you have a good doctor and someone to advocate/navigate the health care system. Hopefully, you are seeing a specialist. The people on this forum are always happy to help. Feel free to drop by for support at any time and know that you are not alone!! Big hug and I hope you are feeling better soon!!!
d 1/09 with colitis sigmoid colon with some diverticular disease as well
IBS, asthma/allergies, high BP, fibromyalgia, GERD, restless legs and periodic limb movement in sleep, low thyroid, the list keeps growing..........................
claritin, singulair, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal, plaquenil back on cymbalta for pain, nexium for reflux (trying again)
Blood test positive for Crohn's via prometheus ibd serology panel ASCA
Positive ANA rheumatologist suspects mixed connective tissue disease 4/2010
Collitis doing OK for now, it's fatigue and joint pain that are plagueing me right now!!!
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Date Joined Jun 2006
Total Posts : 1643
Posted 6/14/2010 2:58 PM (GMT -6)
Hi Bekkah. Yep, you are really, really having it rough. I'm so sorry Sweetie. Pat's comment about
playing soccer indoors is very important. If you do go outdoor, use lots of sunscreen and apply often. Even with sunscreen you may still be getting too much exposure.
I personally have been terrible about
exercising and I used to be a runner! (Now I'm fat.) Anyway, I've been told aquatic exercise (swimming, etc) is best for us cause the water is easier on our joints.
I hope you subscribe to the Lupus Now magazine from the Lupus Foundation of America. They have a section just for teens, but I also hate that you got lupus so young. Visit us anytime, even if it's just to vent! Love Ya Sweetie, Butterflake
Systemic Lupus ('05), depression, fibro, sjogrens, cns issues, diabetes, gerd, hypertension, colitis, stage 1 kidney disease. Cellcept and lots of other meds.
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Date Joined May 2007
Total Posts : 482
Posted 6/14/2010 7:36 PM (GMT -6)
Hi Bekkah, Just wanted to let you know I was thinking of you. The sun is best avoided, both because of the lupus and the different meds you are taking. The indoor soccer is a great idea. But first things first. Please try to rest as much as possible this summer. It isn't fair, you are way too young to have to deal with all this!! Vent as much as you need to - it really helps!
Take care, Fran
Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR, CellCept, Bactrim, Zantac.
Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, X
openex, Tylenal, Darvocet, Prednisone.
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