To all even in to the very end
All that I wish for all
Is to FEEL good enough to
Fight a horrific fight
Some never getting the answers
they may have been looking for
Your experience strength and hope
and shared is something precious
And needed
You are HOPE
you
I
and others
Together we can remember
Love
Me

thank you for your beautiful words eva. they touched my heart. you are an amazing person. love and hugs.

i just wanted you all to know that i think you are all awesome people who i am grateful to call my friends. please don't ever forget how special you all are and that you all matter in this world and to me. love and hugs to all.

What a very sweet thing to say. Thank you!
the people on this site have made dealing with so many of my problems a little easier

I understand and am living many of the hard ships you have so bravely shared. My RSD started 13 years ago. Delt with ups and downs until early 2015, when a relatively minor injury threw me back into the burning fires of RSD. I have been unable to work since then and basically live in my bedroom. I am on MS 15mg, (was on 30), gabby (in process of reducing due to mouth sores), and flexeril as
needed. On anti depressives and take vitamin supplements. I take 100 mg amitriptyline (trying to reduce to 50) as no longer helps for sleep. Will be trying a new sleep aid which is an analog of melatonin. I see my PCP every 2 to 3 months, a pain specialist that is also my acupuncturist and A MD for injections
periodically even though short term relief. My family understand scientifically because I insisted they read helpful info. But I can't even fully grip the extent of changes. Unless you have felt 9-10 pain, 24/7, you just can't understand.

Enough about me. I am here for you and you are not alone.

Get in better/good with your mom, as you may need to plan your departure if
hubby crosses the line. Have a plan of departure as you should not have to be a part of anyone's verbal abuse.

i basically live in my bedroom too and pajamas are my favorite things to wear now! it's sad but true. but i try to make the best of it like we all do here. i get so much inspiration from all of you here at NT because even though you are all dealing with so much pain and depression from rsd and all the other problems life brings about, you still all find the time to try to make other people here at NT feel better with their struggles and i find you all to be very kind and brave people. we are true rsd warriors and i am proud to be part of this group. wishing you all a painfree as possible nights sleep tonight. and always remember to take good care of you. you deserve it.

Dear friend
This has been a lifetime of work
I have not such a nice true story as we live right now

My sister a medical assistant now a permenant F\T phlebotomist
She called me asking for some assistance on health insurance
There is someone now who is dying
All
Because
He
Cannot get health insurance
He has terminal lung cancer
This is the sad story that gets under my skin
He has been refused over and over again
My sister works for a pain specialist
Who is ready to retire soon
The richest country in the world
Killing us just by trying to force us consumers
not to have the information of GMO foods
Hopefully laws will change that
I am beside myself
As a young divorcer single mother at twenty four
My ex who worked for General Moters
Here in Linden NJ
UPON DIVORCE
He was ordered to pay $195.00 a week according to salary
He too was ordered to provide our three children children with health insurance
Well in the end
My ex at twenty six took flight
And worked for the next four years and
Transferred to another state in my own back yard
New York NY
Tarry-town to another plant
And because the child support department did not do a bloody thing to hold him accountable I upon my divorce "did not ask for alimony" as I felt I would be able to take care of myself finding a job that would offer a pay and Health Insurance
For many years "persons that were suppose to protect my children in the end failed me and my children
There is so much to this story
Bottom line
I had to apply for state health insurance
Because not only did he not pay child support
With a take home pay of $900.00 or more a week
Get the picture
He was a deadbeat
The same as my soon to be eighteen year old father
Another very pathetic story
At the end of the day in hindsight
I was a tough cookie
A tough cookie
Able to fight the system that is there to help
But treated like a pauper
And they were farthest from the truth
Deadbeats to the very end
My ex
Excommunicated himself from his children with me
What is the sad truth to this story
I had to fight all my life
Through the lies and manipulation
And how some very important persons who were suppose to oversee that my children's fathers would have at least provided health insurance
That was not the case
I have become strengthened
Empowering myself over the next thirty one years
Now
Today
Having worked hard to not only provide food shelter doctors
And this be my point
DOCTORS
my children did not suffer
If it wasn't state insurance i provided them with in the beginning and then private insurance as I worked those kinds of jobs
I always was the one to have to do it all
Still to the very end
Where the depressing state that I was already in became worse
loosing my last place of employment for the city I lived in for forty six years and lost everything my job a sense of accomplishment gone on April 22, 2015
It is still hard to swallow
But not having this doom over me has been lifted
Coming home from my pain specialist
Providing him with the information on the mutation
and how not just him passing the job over to my shrink
who in turn said I was asking him to do "tedious and how he felt it was a doubious thought"
I have written about this already
I sickens me
What I fight having to put up with
the stereotype state workers can be hurtful rather than be helpful
Most time I did their jobs
And this be my case all my life
And I'm still pushing forward
But there are many who fall short at the waist side
And tried to hurt my family or myself

There are many I have come to learn that either they did not know
Or the sick would have to go it alone
No advocate with them when need be
DOCTORS,PHARMACEUTICAL COMPANIES, and many other corrupt entities here in the state I and this dying middle aged man live in
He is dying
No help of insurance anywhere
This is what I pray for
The ones who have no more fight in them
His family wife children grandchildren await his passing
This kind of sadness I still go through
No doctor was LISTENING TO ME
like I was saying before
At the doctors office ready to hand over information so he could educate himself and that I was weaning myself off of Xanax and that because I fired my shrink
He would now have to script me the medicine
I want it out of my body so badly and I know it is going to take a long time
I have been on it since 1995 via my cardiologist
And getting that out of the way
I then begin to tell him what's been going on since the last time I seen him
And that is every four weeks

Dear friend
It is not fair for many
It hurts to hear stories such as this
And I pray for him and his family
Love
Me

It is received
And very much felt
It feels so darn good
To hear them
in most time
short lived
a moment bliss
Thank you
Me

That was upbeat beautiful and awesome stuff right there
Hoping you feel a hug from me
I three that
i also live in my bedroom most times
I am lucky to have two full bathrooms in my apartment
Corissa's bathroom the general company
I lucky to have a bathroom in my bedroom
I have it set up like a lounge
such like that at a nice quiet piano playing
night club lounge
It has a love seat and other living furniture in it
set up in sections
The bedroom is 13' wide 27' 6" long
The only thing missing in it is stove and sink kitchen
They are too my favorite things to wear
when I must
Most times I am shirtless
The material against my back
kills with burning scratching pain
I am sure you get the picture

So he my doctor was so quick with me
a little more than seven years with him
it just burned me
Not saying anything
My daughter says
I don't like how you were treated mom by the doctor
"He" was not interested
It wasn't his field
That does not make it okay
I want all my doctors on my train know each other because of me the patient
And see I have been with him since before any surgeries
"he does not seem to care I have become just routine to him"
and I do not want to start with yet another one
Love
Me

I had another psychology appointment today. I talked about so many of the things that have been on my mind over the past week. I think I might have overwhelmed her with what is going on in my life and I only had an hour. She agrees that it might be a good idea to try to get away from my husband for a weekend, or even a little longer. Especially if he continues to not want to listen to me, get defensive whenever I say anything no matter what it is I say, and if he continue to be verbally abusive. He has been rather nice this past week with no drinking, so I am happy about that. These are the times that I am reminded of the person that he can be, the person that I fell in love with and married. Trying his hardest to put a smile on my face or even laugh. I just wish he would listen to me. I have been good at watching how I say things so that they can not be mistaken as being negative. I don't know why it did not dawn on me before, my husband is pretty much deaf. He reads body language to determine emotion and tone in what someone says since he can not hear it all that often. Is he perhaps mistaking my pain and depression for a negative tone?

My parents were trying to get me up to there place sometime soon. I was asked on Friday if I would like to come up for the weekend. Maybe packing up a weekend bag and heading up with my dad next chance I get would be a good idea if my husband and I can not talk about some of our problems. I am not sure how I would handle the long 3.5 hour ride, but it is the only place I can think of to go to and I have not been up to their place in a few years. I spend most of my time in my pajamas anymore, except for doctor appointments, so a small bag shouldn't be too hard to put together.

We also talked about trying to work toward some goals. As odd as it may sound, I would love to be able to try cooking again. Maybe not every day, but at least every once in a while. It is something that I loved to do and is something that will let me feel like I am helping out again. I told her that I would like to be able to loose my crutches as well, even to get back to a cane or walker. Since I am still dealing with a non-union from a surgery I had last January to fuse two joints in my ankle, as well as dealing with CRPS, I know that may not happen. I made sure that she knew that it might not happen as well.

Working toward some goals and making me feel like I am not just a drain on everyone in my life, will probably do me some good. Between the pain, depression and all of the stress going on at home, I just do not have much motivation right now which makes it difficult to work toward those goals. Every time I try, it seems like one step forward, three steps back.

Guess I will just have to take it one step at a time, one day at a time.