This is not a disease it's my life style: Giving up

This is not a disease it's my life style: Giving up: I want to give up some days so bad. Give up on what one might ask? The answer is I really don't know. At times on me and other times t...

Giving up

   I want to give up some days so bad.  Give up on what one might ask?  The answer is I really don't know.  At times on me and other times the world around me and the time that is left I can't really say.  I think I have let being sick mess me all up and turn me around.  The now is something I am still trying to fit into.  I miss the me from then, when my body did not have a lot to say.  I have lost myself in the red tape that comes with getting sick.  People ask as if I went out shopping for a sickness, compared some then brought the one best for me. Lol not really.  I will say I was not prepared at all in my life for this, not in the lest bit.  It is just that some days I got it and the other days who knows.
 
  

This is not a disease it's my life style: IT

This is not a disease it's my life style: IT: People look at me with this lost look trying to magnify into my body to see the sickness I just told them I had. Looking at me as if I...

IT

     People look at me with this lost look trying to magnify into my body to see the sickness I just told them I had. Looking at me as if I should look like "Night of The Living Dead".  Not knowing the meaning of autoimmune or disease for that matter.  Thinking to them selves they know Cancer, they know Aids, they know HIV, but they don't know jack about this here.. it's funny because you can see them thinking on what to say next what to do next. For me it's cool if you have no idea what to say or do, what would work for me is if you read and inform yourself.
    This is from ALL of us that suffer from an autoimmune diseases, read about it, ask a question, Google it, care about it, give to it, get informed do something.  Help us, Help you    

Test

   Do you remember those Friday's when we had those dreadful spelling, math, ''pop quiz's and or any other test? I hated those days, forget the weekend they just jacked it up for me with them dam things.  The older we got and farther we went in school those test still hunted us,but on any day of the week.  Lately the test I take are way different and have letters and funny names, so far none painful.  As I take each test I kinda talk to myself , sing, make up jokes and what ever else came to mind. I have had one test that FREAKED me out to the point I started to cry.  Ok it was an MRI now I have had  a few before but this one was of my head and neck.  Let me start by saying they put a block sponge on each side of my head then they put my head in this plastic head cage and finished me of with a topping for the girls.  I was slid into THIS chamber half way in and soon this sound stats.... bong, bong, bong and as I'm inched back an forth the tons and beats changes on the bong. plus I couldn't move at all.  For the first ten - twelve  minutes I was cool doing my thing singing, humming, laughing then something happened I freaked out.  I don't know what went wrong I started crying and moving around the tech finally had to pull me out to reassure me I was OK and tell me it was only six minutes left.  I tried to suck it up and do the best I could, but man that was the longest six minutes ever.  When it was over I wanted to pull all that shit off of me and run.  Ha ha ha ha.  I don't wish a test like that on my worst enemy any day of the week.
EKG, EMG, MRI, CAT scans, DEXA,Ultrasounds, X-Rays and ones I can't remember including any other and all test by blood.  I get a round of check-ups on all stuff inside every six months or so to make sure THIS or the meds aren't making anything worse.  I hate these test and don't wish then on anyone and on top of it all you can't study.  The only test I don't mind getting a negative mark on.

   I can say I am not scared anymore of the negatives or positives that come my way, I'll just keep singing, humming, laughing  and dong my thing.

TTFN

2010

   April 16, 2010 was as Friday and my BFF and I went to Atlantic City with some friends and their friends.  From the start of the trip my knee (right one) stated to ache badly, by the end of the trip I was in so much pain I wanted to chop it off.  April 20,2010 I woke up unable to move my body from the neck down, my whole body was swollen and in so much pain ( to this day I can't explain the pain).  The nice people in ER said I was a bug and it would pass.  Ha ha some bug it turned out to be.  So two weeks later I was able to move a little bite better but not all the way back to me then I can't remember who but someone started to find me a doctor with some answers.  I went to two doctors nothing and then my government worker suggested that I go to a HIV clinic, I thought she must be some kinda crazy yet I went anyway.  Let me start by saying they where the nicest bunch of people in one doctors office I've ever come across ( thank you).  After tons of tubs of blood and a week later the doctor called me on my way home from work and told me it looks like Lupus, she told what I needed to do alone with seeing a Rheumatologist.  So I called the Lupus foundation and they sent me some information and a list of doctors in the area, called a few and the one I ended up with was not for me,she did not listen not my problems and concerns.  She put me on prednisone that did nothing but made me hungry as hell.  I was still in so much pain, swollen and stiff as all get out.  I just wanted answers and she was not helping me, but I stayed with her hoping my feelings towards her change.   August 5, 2010 I'm at HSS in New York it is a good hospital so far I'm still in ass picking pain an more to put it mildly, but now I move more freely without as pain all the time.   I guess the 26 pills I pop all day play a part in the way I move.  It's been a very interesting year and some change so far can't wait see what happens in the next 6 months. TTFN

single-parent-now -then

   Now I don't know which one is harder being a parent now days or being single.  I know I would not have wanted to be both a hundred years ago.  I wonder if parenting was easier?  How about dating? How bad could it be to have a man or young man come to your house and ask if he could court you or your daughter, better yet have someone ask for your hand in marriage to the elder male in your life. Now most parents don't get to know their own child let a loan the person they are spending a lot of time with.  As a parent I fear a lot of things predators on and off line, fast girls, bad boys, drugs, alcohol, fast food, fast cars, fucked up schools system and a list that goes on and on. As a single person wow that list is even longer.  I feel as if people have forgotten how to be human.  We don't take our time to get to know ourselves, each other, have compassion for one another, lend a helping hand.  We are all  in a hurry to get nowhere.  I would love to find a guy that cared enough about getting to know me as he did about getting into my pants.  I would find it refreshing for a guy to ask if he could court me and understand what is meant. I am not saying to turn back the hands of times, but maybe bring back some old fashion values.  Show our children what made us grate so that they can become better.
  Just my thought take or leave it