RNC you know when I took part at Cleveland Clinic pain program they did not allow us to talk about our pain in terms of how it felt physically. They said it just made the brain process it more. Now on a day to day basis I always talk about it with my mom. It is not good you are right and I am going to work on that suggestion. You know I was thinking of a dog. Now my mom though I live on my own would not be happy since I am not a dog person and why my pup I got which granted was 13 years ago lives with her. I feel so alone though so maybe I was thinking to try a foster situation first? I am glad yours brings you comfort.
Dr S I will look at that as well

Thank you again.

I choose.
To be worried, or to be happy and what? Free?

Yea.

I have no reason to worry, BIG DEAL, I got rsd, four discs, TOS, and more but I won't go on, I must say though , that all these give me reason to LOOK AHEAD! AND BE POSITIVE!

While I won't lie, I cannot do so everyday. Today, however is one I can!
Yesterday, was not, I was face down, but, still looking forward to a 'New Day' a 'New Life"~!

WE can't get down on ourselves because of pain.
We're not broken,
We're Beautifully Broken!

So MANY have it worse.

When my Dr or his nurses ask me about my worse pain, my least pain, or my everyday pain,
I can only say this.
Lowest, about 4.
Medial, about 7.
Highest, (and they tell me, on a scale from one to ten, many tell them much Higher than 10! I think, how can anyone be so uncaring? Always, someone has it MUCH WORSE than us! I give them a 9.5)
I'm , after 27 years of this, and other things, have difficulty thinking anyone with only rsd, could be SO selfish, even after seeing the suffering on TV, that they could rate themselves a 10+!

I don't know, who do they think they are, but I'd suggest, that they count their blessings!
That's what I try to do.
Even at my lowest.

Get out and help a church/synagogue/charity!!!!!

You'll feel SO much better about yourself!

Oh well, some will never get it.

Peace on all,
w/love,

Pete

SO natural to feel lost, scared, fearful, sad... as natural as brushing our teeth each day.. We have new normal..one we have not choosen for ourselves.. No practice runs here!!! As much work as it is to keep our spirits high eachday..we must also reserve much energy to continue to fight..manage our day or future its a hard thing knowing we haven't a solution for our disease and management of it is where we must pour our focus... Reach for the lighter side of our new life..stay hopeful inspite of our odds..as thru prayers and the kinder easier simplier parts of life are now essential... take time to smell the beautiful flowers and fight the saddness..so not easy but it is so important to our longevity...we are blessed to turn to our family here..a place you can scream and be yourself..we all understand the devestation of the pain of our RSD...bless you all!!!

Hugz to all...

Kathy

Dear Pete,

Thanks for your reply....

But I must work to because I need the money and benefits for my family. Fulltime. And I have RSD and will need to deal with WC approvals/denials, lawyers, and all that related BS for the rest of my life. I will never be FREE of the need for ketamine infusions or some other treatment to keep me going so that I can work. And I need it on an on going basis, every month.

There is no lawsuit for me to win that will garner any cash or benefits for my family. Ever. None of the disability policies I purchased like a responsible adult will pay me a dime because I was hurt on the job. I have no time to volunteer more than I already do (I'm on the board of 2 organizations already).

Please don't try to make me feel bad because I have shared with others that I am scared of my RSD and my pain. I can certainly appreciate where you are coming from, and I'm happy that you have found balance in your life. But some of us are not as fortunate, and have chosen to share that with our friends.

Peace Sandy

I have always felt from my unreal about of therapy that one can't always shut off how they feel. Yes they can work on ways to cope with things better or be more proactive in life but a feeling is a feeling. No right or wrong ones. I also think some people have better outlooks in life then others. I am the first to say I don't have a good one.
Keep smilin I think you hit something that they were teaching me at the clinic I went to is learning to create a new life with rsd and find joy even though it is hard. We may not be able to do some things but can do others. It is finding that I guess. I agree this is such a warm family here.
Sandy I give you so much credit. Having to work through this condition must be so hard. You have a lot on your plate and you are a strong person. I am scared too. I am just going to try to figure a way to live in a calmer fearful state.
Aintsobad I think you have the outlook of being positive that I don't have. I know there are people worse and I feel for them truly. I think regardless though of someone else being worse or better this condition impacts ones life so bad. I often say things can be worse but it does not take away from the suffer now.

I applaud those who can continue their lives with this thing. I do know how difficult it is to deal with the disease and a normal life.

But there are many things you just can't do any longer or become chores. I had trouble just putting on my work shoes or peeling an orange. Now I buy oranges in a bottle.

Everyone has to adapt and part of adapting is finding things to take the place of what was lost. I doubt this is an easy process for anyone but it's something we all need to do to the best of our ability.

We must laugh in the face of terror. During the blitz of London in WW II people got used to be bombed everyday. They'd picked themselves up and dust off and then go back to carrying on with their lives. The major difference is we have to dust ourselves off just right or we'll be in more pain.

AND if I may add..our negatives must somehow be replaced now by our positives in our lives..It is very easy and (we most certainly deserve this..don't get me wrong) to get swallowed up in our new life of pain and ugly..no answers..our hands are full just getting thru our days.. but what little energy we have in reserve we must use to find a happy spot in our hearts..Because in the long run..when we turn that light out at night next to our bed...what did we gain if we just felt blah about ourselves and our lives now...?? I was a tennis instructor for many years..it allowed me to afford my college bills plus I got to play and teach the sport I loved... now I will not, Iam sure of this... I will never pick up my tennis racquet again or at least play competively anymore..but I've grown to understand and accept that cuz I/we have to accept where Iam now with my life and the positive is..I can still smile and give love and receive it back..and that warms my heart. I will always have my fond memories of my tennis days and students..and now it's about the ... Free and simple (wink)....It's out of our hands... we have to loosen our grip on our old life and accept the new...and somehow be appreciative we are still here to enjoy life and our loved ones in it...We need to afford that smile and laugh when ever we can...

Hugz, Kathy

Sorry for my late reply. My life is mad right now. I had to drive 7 hours yesterday for an apt and am going on little sleep. I won't go back tonight to sleep I can tell too. Busy days for me equal even less sleep since my body gets activated more with pain.

I am sorry so many can relate.

Ali I did a pain clinic like you are describing. Well I actually only did 4 days of it at Cleveland Clinic cause the activity part was too much for me. I will say the therapy part was beneficial. It helped to see how others coped and felt with pain. Group therapy helps me more then individual that is for sure. I always say you can know something mentally but to feel it is a different story.

I have felt in my life that people with positive outlooks do get farther. I hear others on here even who have such amazing outlooks when they say they are blessed etc. I am in ahhh. I think a major point that was stressed here is how important is to find healthy outlets and things we can do. Even if we can distract for 10 minutes it can help break up the mental stress this causes.

Sending pain and worry free thoughts to all