I am glad you found healingwell. There is some great info and support here. I have met some good people coming to this forum, of all ages, and backgrounds.
I can definitely relate to some of the things you said with being young and having to deal with so much. Its hard not to get angry with this disease sometimes as you know. And other people that make fun of you because you are a different weight than you were....definitely not cool, as others see results of illness and are not always educated as to why our bodies change during treatment.
I am 35 but have battled with this since I was a child. We knew I had CFS and the muscle pain, was sick easily but then had good times with bad. I also had Rheumatoid Arthritis as a child and teenager. The downfall was that my mother did not keep me with treatment for my medical conditions, and when I started college it spiraled out of control almost killing me.
In 2004 I was put on megadoses of steroids for about a year. I was already angry due to Lupus attacking my organs, bad medical care, but I was supposed to graduate college. Lupus attacked my heart, skin, you name it. The anger I had then combined with steroids definitely made it more difficult to control my anger at this disease. I have almost died from this with strokes, memory loss, and developed seizures, stomach issues and severe migraines.
You are right when it stinks to not live like a normal teenager. I can definitely relate as to I wish I could live normal. I am one of the Lupus people who cannot be in sunlight, not through windows, outside etc, as I even burn and get sick from certain light exposures. But...in time you can learn others who are out there with what you have. No it is not easy, but you can find support and hopefully develop a plan for yourself. Easier said than done, as we can make plans to go out with friends or family, then get sick and have to cancel.
I'm not sure what your relationship is with school, but are you able to do homeschooling with local people? Or have your parents spoken with the school and doctors to get you on a 501 plan I think it is called so you can keep up with schools via a tudor from the school? I am taking online classes now and I must say it has helped distract me and is flexible with how I feel. I am going back for medical social work so I take that class on campus and the rest online through the local college. I want to help advocate for others, like us, who need more understanding of what we deal with.
I hope you can find a way that makes this disease easier for you, and maybe some friends who are sick that understand what you deal with. I know the local arthritis organizations have things for teens for summer etc so you can get out and meet some people with will be able to relate with.
Good luck Bekkah, and know that you have people behind you.
sle 01 w/autonomic 11/05, photosensitive 04/04, sjogren's 01, ra 01, fibro 8/05, sinus tachycardia 6/04, asthma 96, allergies 6/04, idiopathic neuropathy/neuro pain 11/05. Epilepsy 3/06-gone, TIA 5/06, Porphyria 5/06, Vitamin D def 4/07, Iron def ferritin 8/07, Chronic migraines 01.Meds- baclofen 20 mg, prenatal tabs, potassium, vit D 50,000, qvar, xopenex, singulair, plaquenil 400 mg, tramadol 50mgx3, motrin 600mgx3, famotadine, darvocet 100x2 prn, amitriptyline 25mg, maxalt, topamax 150mg, tigan