Looking for locals

I live in the Texas Panhandle which makes me fairly isolated. I do know that there is at least one other person here that has RSDS. I am wondering if there are more that read this forum. Please contact me if you are out there.

God bless each and everyone,
Lori

I live in Redding CA & have had this since 1986. It has ruined my life! But I am just making other choices. I’m a registered nurse & can’t work like I used to. I have in in my right hand to shoulder & neck.
I’ll be happy to communicate with you even if I don’t live in TX.

----- Original Message ----
From: LRenfroe rsds-cpt7377@lists.careplace.com
To: yvette@aceitcomputing.com
Sent: Sunday, January 6, 2008 9:07:14 PM
Subject: [rsds] Looking for locals

Dear Lori:

It’s Sarita in Redondo Beach, CA. I live in a South Bay city of L.A. and with RSD I still feel isolated at times. Friends and family have to adjust to the ideal of a seemingly healthy person suffering with this level of chronic pain. My boyfriend is afraid to wake me because I sleep only 3-4 hours a day and awake moaning and screaming grabbing for the pain pill I leave out on the night stand. Obviously, my doctor does not have my pain levels under control. The cable guy was so worried and distressed about me the other day I had to explain the whole RSD thing to him and reassure him this was a painful dysorder I survive every day (poor cable guy).

Between doctors visits and biofeedback, I am trying to find a screenwriter on-line for a movie ideal. I write to my son daily who is in bootcamp to become an Army medic, I tend to my garden and write in my journal. I fainted the other day while I was trying to do moderate excersizes(pretty scarey). I try to laugh when ever I can because this feels like some one else life.

Yes, it’s a tough existance when I, like you, was very active fishing, boating on the ocean, softball, volleyball and working at a domestic violence shelter.

I am not close to TX but I am here for you anytime. Big Hug Girlfriend :slight_smile:

Yvette,
Hi. my name is Audrey and we have two things in common, I was an RN, and I do suffer from RSD. I hav had it since March 2001. I was not diagnosed in time to it has spread to all four extriemties. My life isso unfulling. I used to take care of so many people and now I can not take care of myself. My goal lnow is to cope, everyday. I have disassociated myself with friends, family, activities I loved but can’t do any longer. I cry alot. I laught a little. Mostly I pray for some sort of breakthrough. I have lost so must valuable time to RSD that it is hard to control the ange and bitterness.I have been in a constant batle with Social Security since I had to quit my job in Aug. 2003 when the RSD spred to my legs. I still have had no success. I thinks Social Security is waiting on me to just givie up an die.; and thy say it can’t kill you… I am beginning to wonder. Best of luck and may God smile down on you, my fellow sufferor.I hope your holidays were as best as they could have been. Best of luck Sis…

----- Original Message -----
From: Yvette rsds-cpt7377@lists.careplace.com
Date: Monday, January 7, 2008 2:21
Subject: Re: [rsds] Looking for locals
To: audreypatrick@insightbb.com

Hi Audrey,
My name is Kris Baker and like alot of us (it seems) I am an R.N., also. I was Dx first with RSD 1n 1989 after a ® knee arth. Sx. However, after having a lumbar bi-lateral sympathectomy in 1990. Then in 1995 during my pregnancy it flared up in the (L) shoulder. After having my daughter I had a (L) side thorcic sympathectomy. Then a week later it jumped to my (L) side. Again, I had to have a another sympathectomy on my ® side. I was living in Alabama at the time.
I am living in a suburbs of Virginia Beach, Va. right now, after I had my surgeries done and was able to return back to work back in 1997. I was working for a group of surgeons and I carried around a 20lb medical bag and I was pulling the bag out of my SUV and pulled my (L) shoulder out of socket and twisted my ® knee horribly, this was in 2000. Since my injuries my RSD came back full-force and have been out of work since then…I have had a ® knee replacement in 2002, I had no knee left. Along, with RSD and RLS I have achalasia, dysphagia, and gastropersis.
I had a pain pump in October, 2007 and I don’t know if I am happy with it or not. When I had the sx they used morphine and for some reason I started having severe migraines and the nausea(I could’nt even see food on T.V.) they finally realized I was allergic to the morphine and switched it out for Dilaudid.
I am still nausea’s and they are still boosting the Dilaudid and I am still also taking fentnyl (Actiiq). Along with so many other medications. I know I have been rambling for a while. But, I would really like to keep in touch. I hope things are getting better for you and remember, THROUGH GOD ALL THINGS ARE POSSIBLE…I WILL PRAY HE GIVES ALL US RSDERS THE STRENGTH TO GET THROUGH EVERY DAY…0h by the way I am going through an attorney so I may qualify for SSI. TAKE CARE, TALK TO U SOON…KRIS

Audrey and Kris,
How have your cases with SSI gone? Have you been approved? I know some of the RSD sights have a ton of information for filing for SSI.
Please let us know how you are doing. Have you had any new treatments that have made a difference?

Wishing you a break from pain,
Lori

wow there seems to be many RN’s in here. I am an RN as well. I know how hard it can be to have such a busy life that most RN’s have and to then go to nothing. To have difficulty caring for yourself after you have diligently cared for others is amazingly difficult to handle. The economic stresses compound the anger and frustration. But, we also know as nurses that this isn’t healthy and that we need to try and stay active, even if it isn’t anything huge. I continue to go to church and help out with the youth group. I go to my Bible study and connect with friends. The truth of the matter is, we need to stay connected, whether it is with other people with RSD or our friends that still loyally stand by our sides. RSD isn’t the flashing Game Over sign that flashes at the end of a pac man game. Yes we have good and bad days. Yes there are days that I cry out of anger and frustration. But, there is a life worth living. We just have to find what keeps us living.

Pressing On,

Jen