Hello everyone I have not been on in awhile. I have been depressed alot comming to the point of understanding my life as it was is over. I think I understand but who am I kidding it is still too soon to come to grips with it, I hate turning dumb my memory is fading my spelling and I would be lost if not for my wife!

I hate this TOS and RSD I am now passing out alot, from just my body having enough fighting this all day,I have slammed my head on this monitor so many times from nodding off I think I dented it. I fight this everyday for my kids and wife but it is like the same thing everyday not much going on. I use a cane now to help walk some and I have come to terms with knowing I must use a weelchair at times to make it threw stores, so I get thoes LOOKS from people like hey dude! you are way to young, and it looks like you have your legs whats up LOOKS! HELL with them my lady says and kids also!I think to myself- if they only knew my pain I would gladly let them live in my shoes for a hour pout.

I'm allowd to I figure to whine a little to myself, why hold it inside right. I had this lady stare at me forever at check out so I say man I wish I had no nerve problems and pulled my shirt over to the side to show my nice scare under my neck you know the one, the look on her face was priceless! I know it was wrong, sorry but the stare from this lady just hurt me at the time.

I want to find a cane with flames on it, I saw one someone has and now I want one! it may make me look like Im walking faster LOL I have to say I enjoy my doc he is the best, r please I know we all have GREAT DOCS! please no pissing contest I feel he has my best interest and he truely cares for me as a person I had a very bad day when I saw him last pain was in the WOW FACTOR! and just miseriable you know how we get dont want to move or open our eyes sorta pain, I let him know said sorry (why do we apologise for our pain) he just made me feel at home and calm with his actions sure pain was high but he understood and we just took it from there, I have to say my PCP she is the best also she has the same way of just rolling with the wave thing.

I'am just in a deep dark gray MOOD today like the little guy with a cloud over his head and the sun just cant seem to reach me today. My grandmother passed last week, she lived a full life a wonderful life. The service was great she looked great just took alot from me to make it. I guess I am still recouping.

Thanks for reading a weirdos thoughts...I hope you all a pain free day!

Sorry For My Spelling

I'm sorry about your Grandma Flippin'... crazy stress going to a funeral, and on top of a TOS flare? Oh Man. You deserve a rant for sure! More room out than in.

I HATE getting those looks from people. But some days I could give a crap 'cause it hurts so bad. So now I'm starting to just not give a crap even on the better days. If we don't go easy on ourselves it just makes it worse. You are so fortunate to have a spouse who loves you and stands by you.

I hope a better day is ahead for you soon.
Anne

You're right- you are allowed to vent and whine and throw a TOS Tantrum..... Those looks (and the whispers) just plain suck sometimes. I'm sorry to hear about your Grandmother. Funerals sure do take alot out of you....
Oh- your cane....
Dr. House's Flame Cane Chin up.... i hope you're feeling a little better Flippin!

FnO
You have a ton on your plate, and with stress, dealing with morning your own life, hating this one dumped on you is very difficult. Often and always too difficult to deal with alone. But, who helps, who has the answers, what helps. Sometimes a dose of everything. grief counseling tells you that you go through stages, can even get stuck in stages....I hurts, the pain, emotional , physical, and life.

I had been dealing with myh duaghters TOS when she was only a child, 16 years old....I thought it was about when the cure would happen when they figured out what was wrong with her. I had diffculty coping, and then had my Dad diagx wioth Nstage cancer, took care of him, my car accident that I developed herniations, lumbar and cervical along with TOS and fybromyalgia. My Mom;s cardiac problems. My son's TOS injury his diagx with tumors in his brain on the pituatary gland, his marriage and new born, the second son;s heart problems....all the while ny older daughter was mentally deteriorating.

And Mom could'nt cure anyone....

I did see a wonderful psychiritrist, his speciality was working with chronic painpatients and helping rediscover their self, reinventing a person with limatations, that learned how to accomadate and medicate, and mediatate.

In bio feed back, venting and making a plan I heal.....to a point I am thankful for my life.

One thing I did learn with my daughter was, she could accept, even in her young life, how to accomadate. Use a scooter when we went to parks, a wheelchair at fairs and Malls. Allowed me to cut her meat, pour the 2 liter bottle of soda, not to lift anyuthingheavier then her cats.

She cherised her nephew, she had sibling fights with younger 11 year old sister, loved to get in the car and head to to local movie or swim when she could.

It was difficult with her though too. She hated being "F'd up." she never had a chance to enjoy being healthy. Her engagement broke up, never married nor had children; life everyday was about managing the pain.


I think I put a lot of weight on; if my daughter had better mental health care, AND had a intrathecal pain pump in the spine, instead of all the medications messing her liver, making diabeteas at times, psych meds saying they would help nerve pain making her too groggy....

But, I couldn;t fix it, the medical people couldn't fix it, the psych's didn;t fix it....
It would have and should have been a group effort!!! No one should have to do this alone and fly by the seat of their pants putting all the chips in a bag on medicaitons or surgery. It is what it is. A game plan is needed. A back up plan, family supoport!!!!!! understanding the Physiology, and how to help family accomadate and live with chronic pain.

The mental attitude should be one of feeling the best you can that day, do things in bits, rest, finding the right meds, doc's and emotional support.

I went back to school part time, even if I can never work full time with my degree, I still have something no one can ever take away. I work 2-3 days a week for about 4 hour evenings.

We are allowed to vent, whine and cry, but as one gal said once, don;t waste more then 20 minutes a day on it.

Try to find an activity you enjoy, can do, and will make you happy. Take a picture of birds in the yard and identify them. Sit in the yard and watch feeders. One day maybe walk to the end of the yard and back, deep breath, from the low tummy, not the chest for at least ten minutes.

Write an editorial about something, maybe living with RSD and the looks you get having an invisable disablity for your local paper...it will educate and inform many!

DON:T GIVE UP, there istoomuch in life everyday to stop and smell the roses a minute, even just watching your family.

The gang here has always been my support, my dearest friends, and vast of information shared.

Sorry for my typos and spelling too....
Take a breath and gather up some cyber hugs.
Dianne

THANK YOU EVERYONE!!!!

I will try to do things some things I have not done in a long while I have to motivate myself harder I know. I say to myself all thoes sayings like when life gives you lemons make lemonade and so on.

Man you all have been so NICE! as for the cane I saw a lady have one at the hospital I should of asked her where she go it, it was all blue with flames VROOM VROOM! again she has taken her cane and made it fun right, a diffrent angle at life is all she did and I need to find for myself, a diffrent angle a diffrent perspective I think I need to find my rose color shades I had in the 80's LOL

As for writing about RSD there are so many others who have been doing it on this board, so much better than I could I look at myself as a new commer at this even though it is 2 years I have had this other of you had it for so much longer, and give such good advise and comfort.

I have got to say I want tolose weight these meds make me fat RRRRRRR I try to stop eating but I think they put something in them to make us eat so it works into our bodies? just my thoughts on why I get the munchies.

I wish everyone a pain free day, thanks for reading a whiners thoughts......