August First is my birthday and it was last year on my birthday 2008 that my (ex...) orthopedic surgeon told me I had RSD
...gasp...racing heart...cold sweat..

I went home and stayed in the fetal position for a few hours from shock, panic, and fear...
I had done some research on the net trying to figure out what was wrong with my foot and ankle, so I knew the 'kaboom' impact of those words..

I had mentioned in another post that I had asked him in June if he thought I had RSD and he said "no." So, I continued to ice and wear a tight brace to help me walk..then on my birthday, August 1st, yup, I remember the day vividly, he said the words...all wrapped up and with a pretty red bow lol, lol "I think you have RSD..."
I had complained for five months after surgery of the inordinate pain..but he
kept saying..it'll get, better..and essentially didn't HEAR me..or chose not to...

A year has gone by..is this really my new life?? I can walk a few yards and ....
no more walking,hiking etc,etc, etc...hey, but I still have my sight, i can hear the ocean and the birds...I am still working...
One year later, as with all of us, I have made adjustments in my life, and trying to make friends with my new self.....I know my old self is still around..I guess my old self and new self will have to get along..

You, who have had RSD for years are my heroes, my guides...
Those of you just diagnosed, it gets better as you become more knowledgeable and feel more in control as you learn how to become your own healer in many ways..sometimes out of necessity..
I've become quieter, more contemplative, more observant..
The gift of this site makes up a thousand-fold for that day last year..

Thank you friends,
Hope4thebest xoxoxoxo

Hi and a Happy Birthday wish to you!!!!!
I just had my 20th anniversary of dx of RSD in July and I am here to say that life is not over.
Oh, there may be many brutal days but as you stated there are many joys in life. Life itself is a blessing. Just live in the moment and 20 years will pass before you know it. Just be sure to catch the glimpses of blessings and joy on the way.
Hugs Di

Hi and also a Happy Birthday wish as well,

I am at 16 months and was also very. very active and busy. Beyond the the shock and awe of last years news, I must agree with Di about the blessing of life in no matter what form it comes in. I can no longer do most things as I did 16 months ago, but from listening to the wisdom and insight from all on this list who have walked many more miles than I, I feel encouraged and have found other ways to enjoy the changes of the seasons, that I didn't know existed before. I wish the best for you!

Take care

hope4thebest,



"You are not alone, you are loved...all will be well"..a chant for you to say when you feel down..

"I am not alone, I am loved, all will be well"


Dew

For your dual, if belated, birthday greeting - having missed your post yesterday but read it carefully today - I can think of nothing more appropriate than a short passage from something you may well be familiar with, After the Ecstasy, the Laundry, by Jack Kornfield, Bantum Books (2000) at pp. 184-85:

In May of 1998, at the Spirit Rock Meditation Center, we hosted a large benefit for the medical care of Ram Das [fka Richard Alpert, PhD], who had suffered a major stroke the year before. After almost a year of rehabilitation Ram Das was able to talk, although haltingly, and he still groped for words. At the end of the day his wheelchair was placed on the stage so he could speak. Noting to much laughter that he had been warned it was tacky to come to one's own benefit - and that's why he came - Ram Das addressed his predicament and the question of identity.

For years I practiced as a karma yogi, the path of service. I wrote books about learning to serve, about how to help others. Now it is reversed. I need people to help me get up and wash my bottom. And I can tell you it's harder to be the one who is helped than the helper!

But this is just another stage. It feels like I have died and been reborn over and over. In the sixties I was a professor at Harvard and when that ended I went out with Tim Leary spreading psychdelics. Then in the seventies I died from that and returned from India as Baba Ram Das, the guru. Then in the eighties my life was all about service - cofounding the Seva Foundation, building hospitals, and working with refugees and prisoners. Over all these years I played cello, golf, drove my MG. Since this stroke the car is in the driveway, the cello and golf clubs in the closet. Now if I think I'm the guy who can't play cello or drive or work in India, I would feel terribly sorry for myself. But I'm not him. During the stroke I died again, and now I have a new life in a disabled body. This is where I am. You've got to be here now. You've got to take the curriculum.

Happy Birthday!

Mike

__
ps And speaking of past lives, Ram Das grew up as the son of the president of the New York, New Haven Rail Road!

HB Hope4thebest,

I tried to write back to you twice before, and ended up crying both times and gave it up. So I missed your real birthday by a few days - so happy belated birthday instead!

My prelim diagnosis was in the beg of last summer, and a more definitive diagnosis was made in September so my case is very similar timing-wise to yours. But unlike you, I don't often feel like I am getting better emotionally. I had to take a leave of absence from my job about 6 weeks ago. I have often not had adequate pain control, and I am not comfortable driving after 3 or 4 in the pm. I can't sleep many nights. It's just gotten to the point where I am not the competent on-the-ball worker I used to be and it breaks my heart.

This board provides me with a tremendous amount of support, without it many days I would truly be lost. Thanks so much to the veterans of the site who continue to log in day after day and help us "newbies" with our ordeal. I also owe a great deal to my wonderful PT and PM doc in Boston at St. E.'s, both of whom who give so much of themselves, more than they have to or that many of their colleagues could be bothered to give. And last, but not least, my husband and kids.

In regards to your RSD foot - keep using it. I am almost certain that my RSD spread to my right leg. I only wear Crocs on my feet, the constriction of shoes made my swelling much worse. And I walk a lot - all the time. My RSD started in my right shoulder and spread up to my neck and head. Then it went down to my right leg. So I've tried to walk at least 3 miles a day, if not more, to keep the leg as mobile as possible. I hid the leg for a long time under my clothes when it was swollen and discolored because I didn't want anyone to see it. It's somewhat tan now, so the discoloration isn't as noticeable, and I'm not as self conscious about it.

It sounds like you are doing pretty well - I am glad for you. Especially that you are able to work. It is my goal to get treatments that will allow me to eventually return to my job. For many of us, it is really important financially and emotionally that we get up everyday, get dressed, and head to the office.

Take care, XOXOXO Sandy

Hey!
I'm another year older and a whole lot wiser!! (RSD teaches us lessons we don't want to learn, but I know it strengthens our empathy..)

Thank you for your birthday greetings, and the P.M.'s, so personalized, so thoughtful, caring, and giving of your time..........

I cannot tell you how the comfort, the support, the encouragement, and the friendship makes me feel....better than 10,000 heating pads, 60,000 lidocain patches, and 500,000 gallons of warm epsom salt soaks...

The greatest gift of all in your kind words is that I feel.... UNDERSTOOD....

Hope4thebest

happy belated birthday. and i think that after a year or so with RSd it actually gets alot better with being able to cope better and you learn to do things differently.. hang in there girl

carrie