Sunday, April 27, 2014

I'm still around, figuring out my next move.

Hey you out there!!

Wow, it's been a LONG time. I honestly forgot I had this blog.
Unfortunately it's not because I'm well.
 I fell apart at the seams, like Raggedy Ann.  :)

I can't believe that in my last post of 10/2012, I didn't mention I just got up and "resigned" from my job earlier that year.   I did give notice of course. I'm telling you I fell apart.

I'm still unemployed, almost broke, I found insurance because my COBRA ran out, I know I need to find a job, my  mind is a mess and I worry more about my mental health now than physical.
However a friend of mine was doing a paper on PM and Jo-1 antibody and I gave him some information. It prompted me to put all my medical records in order.
Hmmm .... I've been diagnosed with things I really didn't know.

And, I don't have MCTD at all.  Maybe UCTD but to me, that's just become a title for 'overlap'.  I have PM with normal CPK but will always have Jo-1 antibodies however my lungs don't bother me that much. I do tire easily and I'm not sure if it's from my initial diagnosis and all the damage done to my body by the polymyositis, or if it's because of my lungs. In the few years past, I've had many  many tests. My lungs weren't that bad, even though the reports keep saying CHRONIC INTERSTITIAL something or other .. and my heart, is actually well (as of a couple of years ago).   After going through ALL my records putting them in order last night and tonight, I realize I'm missing a few (from even 10 or more years ago, but important ones).

I want to piece this puzzle together.  In 2006 I had to have a cervical polyp removed.  Also my endometrial lining was thick so I had a Dilation and Curettage.  (wasn't pregnant!!!! This was just to remove the excessive lining).  I was looking at the preadmission records, something I probably never did, and all my blood tests were normal!!!!  They of course only took the CBC and metabolic tests, but all were normal. I think I was feeling OK at that time.

VERY shortly thereafter, after the surgery, I felt like poop.  I had a 1 year fatigue episode, and a really bad carpal tunnel episode which was really due to swelling in my wrists.  But I started feeling bad. After that D&C, something did go kind of "strange".  The fluid that I guess they fill your uterus with  (do I have that right?) ... didn't come out at the end of the surgery. I remember the doctor, saying "where'd it go????".  
I normally run a little dehydrated but .... They kept me overnight (I probably wrote this here already, but not in this context) and tried to get me to pee.  Pumping more fluids in me.  I didn't pee alot.
In general I'm not one that has to pee every few hours.

But, ok, back to the subject, what happened to me between approximately June 2006 then 6 months later getting symptoms (which led to a new rheumatologist, another diagnosis of Sjogren's which has serious fatigue symptoms for me, but funny, my mouth is no longer dry. My eyes are, but my mouth isn't.  A naturopath I went to last year said I had alot of mucus (poop test).   How could I have so much mucus and be so dry with Sjogren's?

Maybe I'm just too naive.  Putting my records in order, I'll make little charts (I have some blood charts I used to update to track my blood tests) ..... see what happens.

I do have ADD and associated OCD which is why my posts are so long and either all over the place, or overly hyperfocused (like the one about the lost luggage, LOL).   Just thought I'd put that out there for you readers.  Not sure if anyone will read anyway, but it's OK.......

Hope everyone is OK, I have to catch up. The past few years have not been good for me, and now that I'm practically homeless (not really, have nice condo, but won't be able to afford it soon!) ..... my life will change drastically in one way or another very soon.  I hope to be able to get a job that pays well enough for me to stay here.  It's difficult in my profession when I've been out of the market for almost 2 years!

Thanks for reading!!

1 comment:

  1. Hello,you have to remain positive and take care of your self no-one else will, I found your blog off another website were i read your comment & it was exactly what i am going thru rite know ! kinda of shocked I really want to know how your situation turned out? it was july 3rd 2012 @hydrolistic you were saying you had a flea infestation in your heat/ac vents ? and when i turned on you swallowed a flea & got infected ? I was bit by a flea during a infestation & know i am plagued by microscopic bugs coming from vents & crawling/biting/itching driving me insane ! i believe i was infected with worm from the flea bite also, my doctor wont believe me and do any testing goto psych , the landlord is evicting me for reporting bugs & asking for help! every time that heat/ac turns on my apt is re-infested. ! OMG i have got so many other health problems this could spell my doom! i am 49 & very sick they might have to physically evict me as most days i cant move & doctor is taking away my pain medication so I can suffer horribly as i die, what cruel way too treat your patient@!
    any advice how to treat my self for the parasite/fungi & get healthy enough to move? and somehow stop the sandfleas?/fungi/moldspores/collembola from coming thru the vents?
    stop the infestation somehow? I am ready for mental-ward
    but they wont let me in?
    advice needed
    I ask you as you are a veteran of these horrible situations