Hi KateLynne

There was a really accurate piece on Chronic Pain Forum the other day on "When to Fire Your Doctor"
http://neurotalk.psychcentral.com/sh...ad.php?t=15245

sure hope you find a doctor who is accurately educated and informed about RSD AND a caring physician too!

Medical records-
after you sign the release for them - it may take a few days for them to be copied - you can ask about that-
they can fax, mail, or send to the new doc if you have one picked already -
but i LIKE TO GET THEM AND LOOK THROUGH _sorry hit caps lock_- look thru them myself.
so you can also pick them up or have a friend authorized to pick them up for you
any of those choices are yours-
unless the office says otherwise

Hello,
Thankss for working on this whether you believe it or not. I want to adress a few bed things I was asked because the picture being painted of me is incorrect. I wake up an hour befor my children in order to ge my muscles loose enough to get up. When the meds kick in the kids snuggle in my bed ntil my morphine kicks in. We get u and dresses. I use my chair to make them breakfst we like home made pumpkin pancakes! I read to them or play with as best as I can. I have thm involved in play groups so the other moms can bee a suporrt to me and the boys get rough and tumble time. I am thier sole caregiver from 6 am to 5 am every day We have accomodated to where they have a full and happy life. Some weeks I have my epidural pump IV system in and then I can do more. Is my day excruciating? YES it hurts but I do it any way. This is a concept I learned in treatment and it saved my life. I get my antiques at local auction where the peole there know me. I go only at night when dh is home. They bring things to put my legs on or anything I my need for comfort. I sit and buy my items. Then my guys load all the stuff for me. My husband brings it all in and I work only when the children are napping or in bed. Working on my brain by studying pieces helps to focus less on pain. As far as my children touching me Yes it hurts but if my sons lips were razor blades I would happily be bleeding from anyplace he blessed me with a kiss. I hurt all the time so I would never deny myself the grace of my babies to satisy a misguided nerve symbol that is wrong any way.
If I get cured I will still be ill from all that has been destroyed so I use my stregth to alienate myself from the diease with in my body. If anyone is interested I can explain it more.

I am confused as to why many feel this is an attack on what they do. I never pick out a person or a style as wrong. I simply am sharing what I have learned and trying to open an honest dialouge about the psychology or chronic illness every one is too defenssive to get close to it, I would like to change that and get the shame out having this condition. I did come to learn and try to help. I am not looking down on anyone. I am looking forwardd collectively.
Roz, I fail to see how encouraging people to be open minded and avoid the pitfalls of over identifying with illness is hurting anyone. It is the most loving thing I can think of to do.

If I said anything to offend you Mom, I will appoligize for it right now.

I think the reason that you got picked on was the wording may not have been chosen correctly. And in some cases, taken out of context. When I read your first post, not all the ones that followed, it appeared to me as if you were telling Katelynn to just pull up her boots and walk through the doctors door again. Her post, alerted most of us to major issues with her doctor. She was trying to confirm that I think, and that is why we all voiced our opinions immediately. (just my opinion, as I am here in a fog of ending day and med's)

Again, I am sorry if I offended you, but in the same sentence I will say I stick to my guns as far as telling her to seek another professional immediately.

Gentle Gentle Hugs, and prayers for more painfree days!

Rain

That is a trick I have learned to do. I do several different things to keep my mind focused. One is to play an online game with others. A couple of my boys will meet me in game, or I will meet others I have met in game, and we will go on adventures in this large toon type world.

The game I play is Star Wars Galaxies. It is a massive game, with actually 2 games in one. The main game consists of several planets, each with it's own creatures and personality. If you seen any star wars movies you would recognize the names. Tattoine, Endor, Naboo, and of course the new one Mustafar, and several more. Then there is the space game with a different area of space to adventure in for each planet. Fun to take on Darth Vader and the death star.

In the game you can build cities, and invite all of your friends to put houses in them, and also decorate these cities as well as inside the houses. A lot of the items used in the game are made by the players, so there is endless things to do.

When I just cant take that anymore, then it is working on website designs. I love the creative process. Once everything is done though it gets a bit boring, so that is when I start tweaking everything in the site lol. Adding pictures, graphics, music and anything else I can mess with lol. Besides the 2 sites in my sig I have a "My Space". This one is real fun, and can be hours of enjoyment tweaking stuff. Plus helping all my friends in that have my space accounts tweak their sites.

I wish I could just do it for hours on end, but my body just wont let me get away with that. But I have learned that the more focused I become on what I am doing, the pain takes a back seat for a while. It doesnt go away by any means, but it is not as prominent.

Maybe we should start a thread on what everyone does to distract from the pain.

I did put a link on my webpage to the My space page. From there you will find some more pictures, blogs and even some RSD groups to check out. I just loaded a picture of me and my pony, and the song El Paso to play in the background lol.

Dear Katelynn,

I am very sorry to hear the way you have been treated. I don't know what tests you have had, but you need a proper DX. I feel horriable about the way you were treated. Forgive this Doc. and go on, forgive him so it won't hurt you inside. Find one that knows what their doing. If I was you I would take the time to give a complete written history. Then on another sheet of paper write down all your SX, and address this to your new Doc. This will help save them time. Hang in their. Love, Roz

Hi Mommyjen! Thanks for your post. In my humble opinion, I think because so many RSDers have ben told that the RSD is "all in their head" and psych problems are the CAUSE of the RSD, that they "balk" when anything having to do with "psychoherapy" is suggested.

So, If I misunderstood your intentions, I too, apologize.

It is my understanding that there is a HUGE differnce between getting "shrinked", as opposed to seeing a psychologist for PAIN MANAGEMENT, and learning different ways to COPE with pain.

As far as the diagnosis of RSD goes--I sort of see your point--for me, I don't particularly care what the disease of RSD ic called, as long as I can get TREATMENT for it. However, there are a LOT of ignorant, mis-informed, and downright ARROGANT doctors out there when it comes to RSD. And, there are a LOT of INSURANCE "Doctors" out there whose ONLY GOAL is to save the Insurance Carriers MONEY--whether it be treatment costs or compensation for permanent disability, or BOTH. Either way, patients are NOT being diagnosed or being provided TREATMENT for RSD. Patients who are not being diagnosed properly are SUFFERING NEEDLESSLY, and their RSD perhaps advancing to a stage where there will be complications and treatment will be even MORE difficult.

So, I too will "stick to my guns" when it comes to supporting someone, like Katelynn, whose Doc is an obvious "pindick"!

That being said, that is AWESOME that you have found ways for your kids to have "rough and tumble time", and to be KIDS! It sounds like you have a pretty good support system around you, which has also enabled you to develope yuor interest with antiques, and earn some money with it as well!

Unfortunately, there are many people who don't have a good support system. Or ANY support system. For those people, I hope they find HOPE and resources on this Forum, so they can start to rebuild their lives again, in SPITE of RSD.

There are a LOT of "creative" people on this Forum, who have shared ways that they have found to distract themselves from the pain, or other interests and activites that are "do-able", given their individual impairments.

Hey Allentgamer! That is a great idea to start a "pain distraction" thread!

Thanks for sharing your experience, Mommyjen!

Brokenwings

Roz, I fail to see how encouraging people to be open minded and avoid the pitfalls of over identifying with illness is hurting anyone. It is the most loving thing I can think of to do.

Dear Jen,

I did not get RSD till I was in my 40's, I am now 48. I had a wonderful life before RSD. I did not get DX correctly till I was 2 years into it. Katelynn needs a correct DX.

You are right about the Docs not knowing exactly what causes RSD. 3 years ago when I was DX I was told right away that they didn't know what caused it. But to every problem their is a solution. I was told to research as much as I could. I have told several MD's I want the root of the problem and not just the SX treated. I have had to be on very strong meds. where I could not even function on. I refuse to go into any MD's office blinded by my condition.

I love life, it's about learning, loving and living.

I believe in encouraging people to have HOPE, and do it in a loving, kind way. Hope is the biggest thing that has kept me going. Part 1 of 2

Hi Jen Again,

Thru out this ordeal I have had a construction project usually going in my home. I just moved from my cute cabin that I had fixed up really nice.

I am happy for you about the antiques business. My hope for you is that you do very well.

I am no certain religion, but I love this quote from Mother Theresa:
I hope to be a little pencil in the hand of a writing GOD who is sending a love letter to the WORLD.

I hope your day is full of joy and love, Roz

Honestly, I didnt feel your original post was an "attack". I do believe though like others have suggested that it might be better to watch your words a little more. Most people here are in tough situations, emotional, stressed, and depressed, on an emotional rollercoaster, sometimes working with idiot Dr's, and really having work hard to keep it all together and get through the day.

I also can say we have been where your talking about, trying to stay positive, finding different outlets to keep going, adjusting lifestyles so RSD does not take over, it was a tough place of peace to find but we had managed it...until this round with RSD, now we are back to square one.

As I've stated before we NEVER in a blue moon would have expected the RSD to set in his arm. His Dr told him that there was a 50/50 chance of it but as he had had surgery in between and did not have problems we were more then sure he would not get it again....how wrong we were.

Now we are back to square one, scared, trying to cope, confused, angry, going through all the emotions anyone possible could ever have. Even after having this before and our "experience" makes it no less horrifying for us. We have again been devistated by this condition. Just when we thought life was as normal as it could ever be and we were on a somewhat even keel - Here we go again.....

I think as we have been through this before helps me understand your statement more then maybe the others here do....I dont think your intentions were to be "mean", I just think the words could have been changed around a little and chosen a little more carefully. Emotions run high here - each one of us is in our own place and time with this.

I'd like to offer a little sincere advice: Just be sure to think before you speak (or type)