Earlier today browsing the internet I ran across a blogger that posted - he had seen someone wearing a T-shirt that said " But you don't look sick" He posted a question - "Why do we have to prove our illness?"
Words are a funny thing, they can be heard by someone and twisted into so many different things in your mind - When people say "but you look so good" - I know they mean well, but I just want to cry why is this happening with my Damn Body! or when someone tells me " You just don't seem your happy self" I am trying, but Some days I am barely holding it together - I am not myself - I am scared! I hate this disease and how it is changing my life - the Dr's, the testing and what can happen next - Today I looked up how a person would perform an emergency tracheotomy - REALLY!?! - I HATE that this is something I have to think about.
I know that I have not posted for a few weeks - I have been avoiding all of the venting that is needed..
Since the last post I have had a high resolution cat scan of chest and trachea - The findings were;
Signs of air trapping in lungs, which is normally a sign of asthma - They also see that I have narrowing of the trachea - This information was given to me by my Rheumatologist who told me she was not sure what medication to put me on and she needed to talk to a throat specialist first - I saw her on Thursday she told me she would call me with information the following Monday - Monday, Tuesday, Wednesday, Thursday, Friday - no call from her - Friday afternoon I call and leave a message - the following Monday (11 days after my appt) about 11:00 a.m - I finally receive a call - which has now led to a referral to a Otolaryngologist @ Virginia Mason. She tells me they may want to take a biopsy of my ear to get a more definitive diagnosis - WHAT????? Ok so what the hell was the blood work, the Cat scan and every other bloody test I have had done - what has that diagnosed - I am not a lab rat that you can just keep poking and prodding at your every whim.... So I am taking control once again - I have requested my records be sent to Dr. Buckner @ Virginia Mason who actually people from My RP group go on and on about - people from all over the world have come to see her and I am lucky enough to have her here in Seattle.. Problem now is, Dr.Buckner's office needs to review my records before they can schedule me - it has been 2 weeks since my request for records, they still have not received them from the Rheumatology office..... one of my RP friends has told me to go to the office and not leave until they provide them - this may be happening if they do not send them this week -
I need someone that knows and understands this disease it is obvious now that the Rheumatologist does not know or understand this disease anymore then I do - this is my life and I want the controls back now...... This waiting game on a disease that is progressing just is not working for me.
I meant for this blog to stay positive and upbeat - unfortunately I think it will see the ugly side from time to time. I know I need to rely on my faith to help me through this, I also think venting from time to time helps too...
Thanks for reading..
God bless us all
Nancy
