I have not updated in awhile, I know. Today I saw my rheumatologist. I have not been any better and I am still 109.5 lbs on 20mg of prednisone. My doctor is making me go see a university doctor before I can go on Cellcept or Methotrexate. He "wants a second opinion" before he does anything else for me lupus wise. We are lowering my dose of prednisone to 15mg so I am expecting to get much worse in the next few days. On the bright side, I will be realllyyyy ill when I do finally see the university doctor. On the other hand, I start my senior year in three weeks and I took really hard classes, so this should be interesting...
I will keep you all updated on everything going on. Fingers crossed.
Good luck in your senior year which is exciting! I hope it goes very, very well and you can enjoy yourself in your final year, like you are supposed to do in this year! Good thoughts and prayers for you with the new doc and in your studies.
Hi Teen!
Glad to hear from you. The news is good that you are being sent to see the dr. @ university. Maybe he will confirm and have some new ideas on your treatment regimen. I had to laugh at your statement "GOOD, I’LL BE REALLY SICK " because they are lowering your prednisone. Other healthy people would not understand that & think that’s a crazy thing to say. I totally get what you mean by that. So often on the rollercoaster ride of Lupus we can walk out of our medical appts thinking…"i wish he had seen me last week when i c ould barely move. Today just happens to be one of my better days. "because timing is everything. If only doctors made house calls like the old days,then we would have a better chance of them seeing us in our flares.
Please let is know how your appt. goes. Try taking some soaking warm baths with epsom salts while you’re on your lowered dose, to help with body aches and pain.
Sending you Healing hugs,~Maré
Good luck with your new school year and your appointment at the university. At least it’s at the beginning if the year so if you do feel worse dropping your steroids you can pick back up. I have a hunch you are very capable of doing really well either way though!!
Hopefully the wolf will show its ugly teeth for the university doc so you can get some new treatment plan that works for you!
Thank you all soo much for your kind responses! :) They made me feel better emotionally knowing that Im not alone and that people actually GET what I mean. I am determined to finish the first semester of my senior year with straight A's. (well, perhaps I might get a B in pre-calc because that is REALLY hard). My doctors office just faxed over the paperwork and, from what I heard, the university will call me to schedule an appointment... I just hope its not in a month.
Right now, we are looking into POTS and are going to inquire to my cardiologist if he could run some diagnostic tests. POTS stands for Postural Orthostatic Tachycardia Syndrome. Basically, when I am sitting my pulse is like 92-93. When I stand up, it shoots up to 147-139. Its no wonder why I get dizzy a lot and feel like im going to pass out!! Maybe I can talk to my cardiologist and ask him to call the university to bump up my appointment (if he feels it is necessary).
It is a good thing that I am not very active right now. I mostly spend my days playing candy crush and studying my bootie off for the ACT. So if I continue to get worse (which I most likely will) at least I do not have any major commitments. Im keeping my fingers crossed that whatever doctor I see will just put me on cellcept. I am seeing my psychiatrist soon (the doctor who first saw my malar rash in full force) and I am hoping that she can confer with my rheumy about what she saw.
I REFUSE to be homebound. Been there, done that. NEVER AGAIN. I would have been better off being in school! I had to teach myself everything, and I do mean EVERYTHING from the book. With no help whatsoever. My "tutor" was my Spanish teacher who didnt know jack about chemistry or math. I managed to pull off a few A's and B's but I had to work like a dog. From 5 am to 10pm everyday I would study and try to catch up on my missing assignments. Let's just say that I was three steps away from the looney bin. I didnt eat, didnt sleep, and I started to hallucinate that there were bugs in my room from all the stress I was under. (yeah not fun).
Lol so in short, I will have to be on my death bed before they make me go homebound again.
I am really looking forward to my senior year, though. Only ten more days before I go to school for orientation. Where did the summer go?!?
I will keep you updated as the days progress. If you dont hear from me, thats probably a good thing lol.