Debbie-I am new!

[Guest guest]

Well Hi Everyone!

 

Writing you all has taken me six months....I have chosen to be the annoying

person who " lurks " I suppose.  More scared than anything because of how this

illness came to a head.  I am a mommy of well it was 4 boys but I have one

biological son who is ten.  I can say I have been through a lot as I know most

of you have as well.  I came from an abusive relationship and used to think that

if my husband was the worst of my issues I could handle it.  I learned quickly

that when it would come to fighting for my life, my son and my life were more

important to me than anything.

 

Started with a diagnosis of fibromyalgia and little to no help!  Year later it

would be Lupus with again little to no help!  I am sure most of you get this. 

Then the fever caught the attention of an emergency room physician whom noticed

high inflamitory levels, something in the heart lining, lung imflamation among a

few other issues.  Long story short, an awesome rhematologist in Seattle, Wa hit

me with AOSD!  I am learning as I go but still afraid of whatever it is!  With

that I mean that it is truly hard to accept a diagnosis when in a ten year

period its gone all over the map!  At 34 I am on disability which I am greatful

for an income...and, I try to stay as posiitive as possible.  I am going through

divorce now and have been away from the abuse for over a year now.  If anything,

the disease saved me really!  It's presence and pain pushed me to fight for

myself in a way I truly never thought I could yet lately I am trying but I

realized I

could really benefit from the company of others whom understand.

 

I am the one whom is always " fine " ....don't have to go to the Dr.s yet, I will

go if it gets worse, I just need to rest...so on so fourth.  I focus on being a

mom but put way to much pressure on myself to be like " everyone else " .  I don't

know if any of you can agree with this but I feel like through this process I

gain strength but also I lose bits and pieces of the " me " I am so used to.  I

would compare it to " shedding " almost lol, it's like a dog...the shedding is a

pain to clean up and can drive you insain but everytime whether it is a lighter

or darker fur that comes in, you find an appreciation for it.  I try not to go

there with the " who I was " or " what I could do " , I try to find something that

still keeps me going no matter what it is.  Lately it is getting harder, the

pain is at an ultimate high and the " new " med is making me feel just plain

nasty.

 

My leaving the previous relationship has not been easy.  My ex has broken the

restraining order on more than 30 documented and called in occasions but there

were some " clerical errors " that kept the police from prosecuting.  He has now

filed for full custody and though I know he will never obtain it, the things he

has put in his statement hurt so badly.  It is almost as if I accept that I have

AOSD than it means I am all of those things.  At the point I was diagnosed, my

ex went out to the waiting area to inform my family of my condition...I was not

fully aware yet as I was truly so close to death it is scary.  He literally said

what was wrong and then stated " I didn't ask for a sick wife, I don't even need

one " , and within the two days time that I was in the hospital he had already

found a new love and had moved on.  For some reason, I have been afraid to even

discuss the disorder with anyone.  The court papers state that I " take a lot of

meds " ,

that " it is unclear I will be around for my son " and that " though the father

has anger issues he can still offer stability health wise " . 

 

It is sick to me that my disability can be used against me, it makes me want to

scream sometime.  I do have to admit that though I have passed tears while

writing this, I do feel a sense of relief from sharing.  I hope I didn't dump to

much on anyone-yet, I thank you for reading and taking the time to listen.

 

I also apologize for " lurking " but, everyone is different and I am glad I took

the time tonight to jump in.  I pray for you all nightly and thank you for

letting me vent.  I am here in Washington and would love to help or chat with

anyone when they need someone as well.  I am still trying to understand exactly

how this works and would love to do the live chat but really haven't figured out

how to.

 

Thanks and God Bless you all,

Debbie