*Disclaimer- what you are about to read is the ranting of a 17-year-old frustrated and hurting lupus patient. If you do not wish to read a rant today, exit out of the page now.
One word: Flare
I can’t even begin to tell anyone how frustrated I am. Going to the doctor’s has become a lost cause I’m afraid. All they want to do now is throw prednisone at me. Not going to take it, so there’s no use in filling the prescription. I want a different option. But there isn’t one. Sooo… its prednisone or bust. I chose bust.
Doctors do not generally like me… they can’t “fix” me. I scare them. Instead of getting better, I get worse. No doctor wants a patient who doesn’t get better. Plus, I’m YOUNG. So on top of having a challenging disease, I’m also young and well… it hurts for a doctor to see someone like me suffering. They can’t do squat about it, so they try to keep me at bay.
So they call this “managing” lupus. Uhmmmm… this is not management. This is like something from Frankenstein’s lab. Let’s see what happens if we do this or just keep on watching and maybe this will happen. IF THIS IS AS MANAGED AS IT GETS, THEN I WOULD REALLY HATE TO SEE UNMANAGED. ‘Cause I am not sleeping well (maybe 3 hours a night), joints swollen, achy, pain, skipping periods, shedding hair, rashes, bruises, mouth sores, sun sensitivity, fatigue and brain fog up the wazzu! Yes, this does sound sooooo managed doesn’t it?
I am falling behind in some of my classes because of my lupus. I can’t think, I can’t function and I am exhausted. This is intruding upon my daily life to a great degree. Right now I come home from school and collapse most of the time. This is no way to live life. I don’t want to live the rest of my life like this. No one should have to live life like this.
My quality of life seems to drop every single time I have a flare. Like every single time I have a strong spike in activity, I loose something even when I come out of the flare. The only thing I find from it is more challenges in dealing with life with lupus. I DON’T NEED ANYMORE LUPUS CHALLENGES OR COMPLICATIONS.
Mornings have been DREADFUL for me. I have been literally CRAWLING down the hall to the kitchen to have breakfast.
I actually cried while running this past Sunday it hurt so badly. Running is my outlet; I don’t want it to be taken away. Somehow I will find a way to continue to run. My stubbornness is not to be messed with! But I would much prefer to run pain free.
This is not fair. Why me? I don’t want to and shouldn’t have to put up with this for the rest of my life!