20 Year Anniversary!
 

July 18, 1989.....So hard to believe that twenty years has passed since my diagnosis of RSD.
WOW. I have learned a lot, yet there is still so much I don't know. I have tried a lot of treatments and yet I am hopeful there will be more.
Most of all I have made some amazing friends that share in the day to day struggle that RSD/CRPS places in our paths. I also have lost a few friends on the way, but they will never be forgotten!
I am not defined by this. Although it presents many challenges, I have been able to do things that I never dreamed I would because, I felt I had nothing to loose, in spite of myself.
Chronic pain has also lead me closer to myself. It has given me the opportunity to spend time without all the distractions of life.
I am a survivor, I am stronger not weaker. I look at life through a different set of eyes than I did before. I am thankful for those that have helped me on this journey. That includes all of you here. The sharing of pain, the sharing of blessings and the friendship, I have found here has guided me alone the way.
Thank you all,
Diana

Thanks for sharing your strength and I see it is amazing. You are a fighter and I can't even imagine 20 years ago how this was dealt with. You have to hold to hope and I try as well. It can really get one through the day. Many better wishes ahead.

Wow Diana 20 years! I know how you feel about the hard to believe part. I too have gone through a myriad of feelings and ways of dealing with the pain and limitations.

I am so proud that you have grown stronger through the years, and I am glad to have met you. You have helped me to also become stronger in my walk through life with RSD. It is empowering to come to the realization that we dont have to carry the victimized by RSD mantle if we choose not to.

If it wasnt for you and all the others I have met along the way here, I dont think that I would have dealt with all that has been thrown at me so well. So thank you for being a true good friend through thick and thin, and heres to many more years of good friendship to come! :hug:

Ditto!
 

Ditto to you my friends! Thanks for being here on this journey with me.
Well...I got a call from a divemaster at 12:00 saying they were going diving, leaving at 3:00 to certify 20 new divers, did I want to go. Well....what a great 20 year anniversary present to myself...I thought. It has been a year. Then I remembered Pete's post. Maybe a change of scenery and a little R&R will help. My son also mentioned how well they take care of me and my gear...since he will not be going. So off I go.... I can't even believe it. I don't have to drive, I don't have to lift my gear...if I dont have to rescue anyone then this will be great. You never know, but that is the out come I am planning on.
I'll be back late Sunday, just a weekend trip. Wish me luck!!!!:yahoo:
Di

I'm glad you have decided to not allow RSD to rule your life. We can allow it to destroy us or make us stronger and I'm glad your chose the stronger road.

I hope you had a wonderful time this weekend!
Sherrie

Hi Diana,
What an inspiring note to all of us. 20 years, wow, you have been such a wonderful example of strength and gratefulness to your life. I've always enjoyed your posts and have learned so much from you as well as our other friends.
I'm glad you are going on this trip. My Dr. has finished his clinics and has the HBOT operating. It's just 5 minutes from our home. I see him Monday-will talk about the treatments.
Thank you Diana for everything to do to encourage all of us. Take care, loretta

wow
 

Wow Diana- glad you are able to look at life the way you do- That inspires me to do the same! Thanks for all your HBOT advice!!

Deb

my dear friend

you show me how to be strong. your an amazing woman and im so glad that we are friends. keep truckin honey.. !!!!
maybe today will be a little less painful
carrie

20 Year Anniversary!
 

DianaA 20 years what can I say? You are delightful just the way you are. Beauty really does come from within a woman. Believe me. I also have enjoyed your post's so much! Love cures people-- both the ones who give it and the ones who receive it. This whole group on this RSD site seems to have a gift of character and strengh of faith! We are all bonded together and always will be to come.We don't see things as they are,we see them as we are.I hope you have a great trip this weekend. Take Care! Relax and always Smile! Breezy55 :You-Rock:

Hi Diana,
Thank you for helping me believe you can still have a life despite RSD.
I still can't get over the reality that I can't go hiking, walking, strolling, but maybe I can plop my RSD self in a kayak or.....
Thanks for helping me not fear the future as I often do..

Have a great week-end!!!!

Hope4thebest

Wow!
 

Wow, Diane: I can't imagine; from all the replies I have read, you are truly an inspiration to many people. I have only had this for 11 months and am amazed at how slow time goes and how little people know about this condition. I am proud and pleased that you have done so well.

About the HBOT; where can I read your info on that? I have just recently heard about this and am trying to find more info about it. I don't want to pay the cost if not sure of outcome, but am looking for alternatives to surgery.

Have a great time on your trip; we will all be eager to hear of your adventures when you return. Take care, Suz66

Im glad to hear that you are up in good spirits,,God has really blessed you,,praise him,,its so nice to hear that people are still able to function with a normal life after that lenght of time,,,,God will heal us ,,i believe this,,,,and i just started aqua jogging,,it help me alot ,,after im out of the water at home the next day,,i feel stronger,,,water is a good thing,,,enjoy yourself,,,,,,,,,,,,,,bobber

Suz66,
Hi!! I will be glad to share what knowledge I have on HBOT. You can read my threads and posts, also..I'll send you a pm with my phone number and you can call if you like with any questions you might have. I'll send a friend request to you and when you except, you can look at the pictures of my chamber.
Take Care, I look forward to talking to you anytime,
Di

Weekend Dive Update
 

Thanks again for all the kind and inspiring thoughts. I'll just leave a quick note here on my dive weekend.
Recently my life situation had become very challenging and stressful. This weekend dive shed some new light...I, so needed to be reminded of.

1) When you look at a picture too closely it gets distorted!!! If you take a photo and put it close to your face, the picture becomes distorted. So it is in life. Removing myself and observing from a distance gave me clarity.

2) Also, diving and being with young children reminded me that.....All good comes from God! We need to be grateful, because if you look around there is greatness and good everywhere.

3) What we say and do has an impact...one that we may never know how much effect it will have. Therefore we should be aware and present where ever we are (in the moment).

The dive class consisted of lifeguards from Whitesands Missle Range. These young adults were amazing and great fun to be with.

There were also two young boys there certifying with their mom. So I assisted her with one whille she assisted the other while testing. I also went turtle hunting (underwater of course) with the boys. They had lost their father a few years earlier to a tragic accident and they were just amazing young spirits to be with.

There were so many other situations, that I felt gave me insight. Just the beauty, creatures and the amazing souls I shared a playful experience with. Bobber...you are RIGHT I am blessed. We all are. There...even in this hard economic times...are many blessings for us to enjoy!

The first night I suffered terribly and was sure there was NO way I would dive the next day. But the new day came...and I went again. Although I have effects from the weekend, the " Good " certainly has outwieghted the bad.
Much Love to all!
Di

such an inspiration! ur thoughts of lking @ life thru diff. eyes r my thoughts. i've had this "challenge" 4 a yr now..... still learning:hug:

Thank you! 20 years and I am still learning. It seemed the first 5 years were very rough. Too much medication and too much pain. There were weeks I totally missed. As the years progressed, I think my body got use (for lack of a better word) to the pain. I could feel life slipping away and knew I had lost much valuable time. So I began to try and live my life a bit differently everyday and the evolution has been amazing. I am still experiencing brutually painful days, but also days, I can say I have lived. Keep hope alive...as they say. Life is amazing.

Hugs di

Hey Diana,
 

I am so glad you had this great weekend. I could tell the difference in your voice when we talked tonight then from the last times we have talked.

It's amazing what kids can do for you too. My two boys perk me up all of the time. I went down Friday night to their house and watched about 10 of them playing pool and working on their bikes. What laughs I got out of them goofing around. Kids can pull us up out of the dark when no one else can except God that is.

I think we need to get outside of the box more and see the fun things out there.

Ada

I was going to crack a joke, like............Did your RSD buy you a gift or take you to dinner ? But........a rejuvenating dive weekend sure sounds like a good present !

I'm sorry you've been dealing with this for so long, but I love your spirit and positive outlook on living with RSD

Hey Di,
I too, think that a Dive weekend would make you feel a little better about your 20 year anniversary! Throw a party!

It's been so long since I've doved, and wifey took mine and my children's dive gear, well you see the picture.
I'm starting to work on my own HBOT station!
Yep!
I'm a retired plumber as you may or may not know, and I got a big ole' tank, like say for fuel oil right, (so this can be a two person HBOT),
and, I'm gonna solder that up, and get some nice new shiny galvanized garbage can lids for the tops. (Whar' ya sticks yer head out.)
I'm gonna add wheels, and a tippsy whippsy, so ya's can be standing or lyin' down....

And, I got an old acetylene tank(s), that I'll fill with some Oxygen, and pump that in.

Of course, I'll run out to K Smart and buy some donna Reed softies and pilloes.
all the frills, right!
Maybe a little cooler for in there too!
(I'm thinkin maybe one of those shoe shine devices, to shine yer toenails, too. Bring Quarters!)...

But, before use, I'm sending the whole KittenKaboodle out,,,,,, ta get Chromed! Yea!
Oh, I'm tearin' at my eyes now! This is goona be so Beeutiful!

Chrome this n that, and tubes and pumps and dials and guages!
Yea!

Oh, and Pillow SHAMS! (for the ladies)!

Yes.

I'm a tellin's ya'll here, cuz I trusts ya.
But, don't say nutin' bout it, cuz I have not filed the principal patents on it yet!

PS
I got my eye on an old (but good!O) Mr Frosty Truck, to drive it around in, and ta let folks try it!
I suppose the license plate on that there, will cover me!? In All necessary conventions?
Hah!
I figure by the end of ohhh.... 2013 she'll be purrin' like a kitten and ready to go...

Oh, the truck might burn a little oil, but, I'll run a pipe up to the top!, So's it don't upset with the breathin' ya know?

Wish me well now!

pete
(You call, I build).

ASB

Diana,

What a great idea – commemorating the anniversary. I passed 20 a few years ago and didn’t think of that. It probably really helps you to “take ownership” (to use a popular shrink phrase) of the situation.

Sounds like you had a good weekend and were able to step back and put things into perspective.

Wishing you all of the best

--- Mike

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