This is my first post...and a much needed one. I am a 27/f and the last few months have been trying. I try to remain optimistic and bubbly but today is a rough one.
I am sorry if this is long but here it goes;
In December 2011 I lost 10lbs ( I'm 5'6 120 normally) was sore everywhere...swelling of my joints, headaches, fevers, night sweats, sore throat, all lymph nodes swollen and incredibly tired....insanely so. Also had issues with memory (SO FRUSTRATING ...have an excellent memory), heavy chest(hard to breath), hands and feet cramp up, heart palpitating and racing. Rashing on my neck and behind ears...not itchy usually under stress.In general felt terrible for how young and healthy I was. I am sure there are other things I am leaving out but you get the drift. I went to a walk in clinic thinking I had strep since it was 2 weeks and nothing was changing. I am stubborn dislike going to the drs but it was ridiculous how terrible I felt. New to the city (Ottawa) just went to any walkin. The doctor said I looked terrible and that there was something seriously wrong. Rushed me to have all blood work, ECG and other things done ASAP and to see their specialist.
One week later I am at this specialist who said there were no result to come back next week. I come back says I have some strange virus try some heavy meds incase it is strep and told me to come back in 3-4 months if I still felt terrible!
One month later I was in emerge because I could no longer tolerate the pain and need it to change. The doctor there gave me IV and sent me to another specialist but waitlisted(Internalist).
I wait another month taking it to March. I LOVE him. fantastic, actually listened and looked over my previous blood work and notices that the dr's missed that I had a very LOW white blood cell count and abnormalities in my ECG. He orders me to have more blood work and to never step foot in a walk in clinic again.
few days later I am in seeing him again and my ANA is high and positive (might mentioned it was speckled?). Later on my double DNA (later appointments)is negative. He puts me on hydrochloroquin(200mg) and naproxen(500mg twice daily). Month later I am still flaring and feeling terrible and I call him. he puts me on predisone 20mg until the hydroch. kicks in. I am now down to 10mg of pred.
Lucky for me my contract has finished at work (government) and I find out tomorrow if I get E.I.(I should, hours etc qualify me). Today is what has got me down. I had an appointment with my dr who I love. I am still having sever flares... and he is sending me to a rheumatologist because the text book meds are not working. he still thinks I have lupus but not his diagnosis and it will take 3-4 months before seeing the rheum.
I am sad because I feel like that is a long time. I hurt so much. I need to find work, we were to have a destination wedding feb 2013 which now we have put off since being in the sun triggers me to flare terribly. I want to move on with my life start having a family. I am terrified that I won't get a good specialist and will have to wait again.
My family and fiance are understanding....I still feel alone. My family lives far away and I am alone in a city feeling terrible :(
I put on afront for most people like I am normal... Happy. I don't want to be a burden to my fiance (we have been together for six years). My mind is racing with millions of things ( a move in June, 50th bday mom 60th dad, fiance bday moms grad sister grad, major family wedding...so much stuff in the next 6 months) I want to do and my body won't allow. Even doing groceries is too much.
I am sorry for this vent......I sometimes feel like I am crazy. I am a perfectionist... I always have a plan.
I guess what helped me was thinking that the meds I was on were going to work..that this was only short term but to think it will be 8 months of this...
I still don't have a final diagnosis....
Post Edited (lupus_newbie) : 4/26/2012 7:33:34 PM (GMT-6)