Thank you to each of you! Your kind and supportive words really do help! Mentally and emotionally I do feel a bit better today. Physically, thats another story but I am finding that a positive attitude helps.
I am 31, single mom of a 7 year old daughter. I worked up until early 2005 and attempted to return to working in Feb 2008. I made it 3 months at a very part time position. I tried. I even had a job coach through the VA Dept of Rehabilitation. I couldnt do it.
I have known something wasn't right for many years. The doc's didn't seem interested in my symptoms until 2004. In 2004 I was told UCTD. In 2005, SLE. I became a patient at Johns Hopkins July 2005 and been under thier care as well as my primary. Feb 2008 got really bad and I havent seemed to have bounced back yet.
Every Saturday since March, I check my mailbox to get my dreaded lab results. Apparently my bood is clotting to much or too easily? I forgot what the Doc said this morning on the phone. I am awaiting another call, to tell me what new med to take, statins?? Cardiac labs are abnormal, somethin in my urine....it's never ending!
Worse part about
all this is that this post is the only outlet I have. I cant discuss this w a 7 yr old...my mother doesnt want to believe that I truely am tired/exhausted. I think its easier for her to play the blame game...and of course, Its my fault! Im lazy! That darn laziness and inability to hold my eyes
open is my husbands excuse for leaving us in 2005! My best friend, he is scared and doesn't want to know anything.
My daughter told me today that I am getting more different. I asked her what she meant and she said that I dont do the stuff I used to do like helping her do things and fix her favorite dinners and wake her up happy. She is adapting to becoming more independent and I dont see that as an entirely bad thing at all.
The sad part is my child will never know me as the person I was. She doesnt remember the long walks and trips camping and the zoo. I am fearful that she will begin to resent me. I missed her field trips and many school functions last year. She has had to see and hear alot this year. I fear that she will be upset because her mom wont take her here and go there...I show her old photos and some of my prior accomplishments and she has a hard time believing that I actually did those things, as do most people.
Granted, she has learned about
accepting people for who they are. When I first began to loose my hair she nicely asked me to wear a hat at her school. I did. After I became accepting of my lack of hair I quit wearing my hats all together and she decided that it was ok for no hat at the school also.
Ok so thats a lil about
me...Thanks for listening!
31 year old mom of 1: SLE, UCTD, FM, Arthritis, Reynalds(?), Migraines, Alopecia, Neuropothy(L:Hand & Foot), Int. Bells Palsey, a bunch of other stuff I don't remember right now and even more labwork I dont understand!
Plaquinil, Trazodone, Lidoderm, Percocet for now...I hate taking the meds! Refusing any more Prednisone!