Bassman,
Hey...A belated 20 year congratulations to you!!!! When I first was diagnosed with RSD I thought I might not survive! But I did...and I am thankful!

Pete, You know that is not a bad idea! I'll just bet you could do that! You crack me up! Lets talk soon.

finz, Love the joke. I lets see....what am I suppose to get for a 20 year anniversary .........20 years gift:( China/Porcelain Platinum Engraved Bud Vase, Porcelain or Fine Bone China Tea Set, Personalized Anniversary Plate, Serving Platter, Platinum Earrings/Ring/Necklace, Platinum Jewelry)

Well, I would have taken the dinner...I think. But the dive weekend was great!

Ada, I love you! Thanks for always being there!

Thanks for all the well wishes my friends!
Hugs Di

=)
 

Glad you had good weekend. Sounds like fun!

I have RSD for almost 14 years now. It's so nice to hear that there's more of us in the same boat, by "us" I mean people who have had RSD for a long time, people who are hanging on no matter what, despite their RSD.

It somehow feels wrong to congratulate you on having RSD for 20 years, so I'll just say, good for you for making it through 20 years of *this* - and boy do we all know what THIS means.

What I mostly hope for is that we can all hang on to hope, hang onto each other... be united as a group until there's a cure or at least some type of major progress or breakthrough in the meds. Up until now, even the Ketamine that was once so hopeful, is proving not to work for everybody... just like the rest of the "treatments".

Please hang on for many more years to come!

CRPSbe...
 

Thank you so much for saying that! "Hang on to Hope". "Unite".
There were many times in the beginning that I thought I wouldn't survive. Also, a few times through the years as well. I use to lay in bed at night and pray that this demon would go away. Then there were nights so bad I just prayed "please let me survive through the night". Something I'm sure that many have felt as well.
14 years...20 years...It doesn't matter. What matters is that we are still here! We are all survivors. Together we ARE stronger. Chronic pain can rob you of life at times,...but then we have our days don't we? Making the most of these days is what counts! When we do have control. I'm so thankful to be in your company and the company of the others here. I think we are a pretty amazing group of people, that have a strong will to live and survive under some incredible challenges. I am so glad I am not alone on this one! It goes without saying , I wouldn't wish this on any one", but without the support and information I have gotten from posts, pm's and phone calls I don't know that I'd still be here.
My bests to you and blessings to all!
Di

Our days, our good days - yes I know exactly what you mean. I seem to want to cram a lifetime into those moments, hours, when I feel on top of things.

I am glad to be here too, and this place is special. Not everyone is outspoken about RSD. Where I live, it seems to still be a taboo subject. It's hard to find others with RSD and the few you do find often aren't knowledgeable about their own condition. To make a long story short, it's as if it's a disease no one should talk about or know a thing about.

Hi Diana,
I'm so happy for you going on your dive weekend. It's so wonderful you were with the two boys and they and mom were with you. I'm sure you brought them comfort and peace.
My Dr. finished his two clinics and they both have double HBOT in them. I have to share something with you, that is so exciting. I'm not cured, but I'm able to leave the house and 'feel life again'
I've been going thru weeks and weeks of not getting to sleep till 5-6 in the a.m. then sleep till afternoon. Life just passing me by. I told my Dr. and he said that is not acceptable. We had talked before about changing sleeping med. so we changed. I stopped Ambien Cr, which was not working at all to Seroquel. Seroquel is given in high doses for bi-polar disorder and schizophrenia. My Dr. was doing a study for the pharmaceutical company-200 patients. The study was low dose for fibromyalgia. He will write the report soon. But it's amazing. I now sleep 9-10 hours straight-every night. I take 300 mg. As a result of restorative sleep, he cut my lorazepam in half and left it up to me on the vicodin. I was taking 6 pills a day for years and now take 2-3 a day. I go outside the house now to grocery store and Wednesday started back after 5 years soliciting for new coffee jobs. Our business has been hit badly, due to the econoomy. But Wednesday I got 4 new jobs. I'm so excited about getting out. I still have bad times. Being out 4-5 hours Wed. was a little too much-feet hurt. But, I know I can gradually get more endurance.
My goal is to build our business back up, and go thru a series of HBOT . His office is only 5 minutes from our home. My Dr. was thrilled at my response to Seroquel.
I so agree with you Diana, about being grateful. Journeling helps me a lot. When in pain, it's easy to get negative.
I have been on the phone for an hour. The husband of one of my friends called-his wife killed herself about 2 months ago. He's now talking to my husband. My husband had called him and left a message. They were close. We moved away and they moved also.
He has a SCS and a pain pump for serious accident-not RSd, but high pain level. Several vertebrae brokin from a fall. I still can't believe his wife killed herself. She had some very painful issues-they rented a house from us for years. I invited him to visit. He said he would sometime.
Your posts were so encouraging about the weekend. I always enjoy your posts. I'll call you soon. I'm going to have to wait on the HBOT-not insurance covered. My Dr. doesn't take insurance even for my visits. spendy, but worth it.
Take care and will be in touch, your friend, loretta

Twenty years. Ouch.
I suppose that I've had rsd/tos/tmj(a joke nowadays), for hmm, 26 years. Not to upstage you Diana, but, it just goes to show, that life can and does, get worse.
OR, If you're Smart, Can and Does, Get Better!

See, I'm a guy (get it?) and thought I could "save the world". And, I did a fairly good job, of making all those around me feel great.
Then, in 98, accident #2. Head injury, and discs in neck and lower back, along with major sleep issues.
Then this mess of a divorce.,,,,, blah blah. (Can't Save anyone, if you're ill!)

The point is, the more we "survive", the more we live with this "Monster".

Diana, I'm so happy you got "out of your shell", got to dive, and rediscover life!
That's invaluable!


We All get disorientated in our little live's journeys. And, need to get out, reset our compass, and find our way back home!

For those of us who deal with a dilemma like this, and the pain, it's even more important!
(Can you imagine, those who just go through life, without giving it another thought? I can't. I've got to "Shake things up" a bit occasionally.)

So, Diana, I thank you, many times over!
For reminding us all, how "Young" we are!
And, how Old we can "let ourselves be". If we're not careful!

Mostly, for all the friendship, and love, that I've found here, on this site, and the Powerful PM's that I get in my secret mailbox!!!

You folks here, are All the Best!

Love to All!

Pete
ASB

CRPSbe...loretta...Aintsobad
 

CRPSbe...I hate that RSD/CRPS seems to be a "Dirty Little Word"! It is getting better, but you are right....even in the US there is still so much questioning and resistance even to its existance. I know that there is something terribly wrong going on with my body..they can call it what ever they like..I just want it to go away! I think we have to shout it from the rooftops! I am sorry though, that you have to deal with this dirty little secret, but at least we all have each other!

Loretta... I am so sorry to be so long at getting back with you ! I am really pleased to hear you are doing so much better. The economy has caught up with our businesses as well. But, we have the survivor instinct and will prevail.
I need to share some HBOT information with you so, maybe we can talk soon.
It has been too long. Happy you are doing better...pace yourself!

AintsoBad...So do I hear no more dragon slaying for you???? Pete, sometimes, you know, before the feet hit the floor there is so much pain, that you know what that first touch of the ground is going to be like. It takes courage just to put your feet over the edge of the bed, after that it is one painful step after the other...but somehow I manage to move. Somedays more than others. I am really thankful I was able to pull off the dive trip!

I am also thankful for the friendships I have made here! Blessings to you all! Di