Hi Joan,
The first goup of kids leat on Sunday nite and the 2 youngest left at 1:00 today. I babysit for my 2 mo. old granddaughter almost every day and my 3 yr old grandson when he is sick and can't go to daycare. I love them more than anything, but watching them kills me. I am so tired and the pain is so bad after I watch them. Even the pain meds won't work. I don't know how much longer I can do this.
At the pain clinic there is a thearapy group, but it isn't just for RSD. It ca include all kinds of things. I'd rather go somewhere only for RSD, but there are no groups around here. I do see a therapist, but by myself. The panic attacks are real bad for me. Too many problems in my life. My husband is also disabled and sometimes its hard for me to deal with all of his issues plus my own.
People drive me crazy too with all the stares and comments. I have a handicap sticker for parking and a woman yelled at me for parking in a handicap spot. She couldn't see my legs, I hadn't gotten out of the car yet. She made me so mad.
Well the rain is driving me crazy. I think I'll lay down for a bit.
Have a good day.

Sue

HI SUE,
I AM FEELING YOUR PAIN FOR SURE. I ALSO HAD MAJOR PROBLEMS OUT IN PUBLIC WITH THE QUESTIONS AND THE STARES AND I ACTUALLY DID LOSE IT ONE DAY AND YELLED IN THE MARKET AT SOMEONE TO 'TAKE A PICTURE'. I STOPPED SHOPPING AND SENT MY HUSBAND FOR MANY YEARS. AND YES IT IS RSD RELATED
OPPS, SORRY I AM TYPING IN CAPS ...
okay, so yes, constant pain + lack of proper sleep + brace + idiots = panic attacks at times.
i have gotten past it and now ignore people when i do go out but going out is harder now, so i do not market or do anything where i stand too long or walk too long. i was on tranxene every time i had to go out though until i got past it. how i'm not sure, i just did.
i also have grandsons ... six ... and they are always here, and i do mind the 5 year old on tuesdays, and the 7 year old on saturdays, and i have a 14 year old living with me right now because he is a 'problem' and i am the one best to deal with him right now. i am exhausted from it all but i would rather keep busy and hurt. some choice, eh?
i read on another thread about how to play with a child when we have rsd and it was very good ... she said to use the computer and play games and i do and i play cards and board games and sit on the floor with castles and such ... i am not a gramma that can run and play ball, my grandsons have all become used the that, and are very accepting. the older ones are also very loving and helpful and have learned much about empathy from it all. i have been rsd for almost 12 years now. so most of my my grandsons do not remember me as i 'was'. they only know me as i am, and as i get worse ...
i think the emotional strain of rsd is the hardest thing to live with. my mind says 'go' and 'do' and my body stops me in my tracks ... it is so so hard.
and i saw you say your husband is also disabled ... so do you have to take care of him too? my goodness.
there comes times that we have to learn to say .... i would like to do that but i no longer can ... it is when we have no more spoons! i have learned to do this. some accept it and some are not happy with it ... like my mother and my husband but i can only do what i can and no more.
so, you are not alone. you have me and other here and we all understand .. we understand all too well.
joan

just bumping it up in case you missed it. the threads come so quickly here.

Hi Joan,

Iam sorry I couldn't get back to you sooner but things have been very crazy around here the last couple of days. I look forward to these posts.
RSD brings with it more than pain, depression, etc. My husband and I do everything together including becoming diabled. We both had a long fight with Social Security at the same time and went without most of an income for over a year. We own a two family house and had to live off of the rental income for over a year. Well that left no way to pay the bills and we almost lost the house. We just found a buyer this weekend. Thank God! The bank was about to forclose. We moved in with my sister and my husband is having such a hard time. He lived on our street since 1965. I hope we can make it throuh this, he is so misrable.
My computer went down on Saturday. Boy was I upset not being able to come here and talk to you and everyone else. You are right. I no longer feel
all alone and everyone here is so nice. I feel so much better when I can be here. Thank you for writing back and forth with me. I feel like I finally have a friend.

Sue K

HI SUE,
i am so sorry you lost your home over this. boy, that is bad. luckily my husband remains healthy, and although retired, works part time when he is not golfing. and i get both ssd and long term disability, so although i do not make anywhere near what i used to make, i do okay. we were recently discussing downsizing, but then with my grandson living here, it would limit what and where we could go so for now we will stay put.
i do feel an amazing friendship with you. it is something to meet someone who 'knows' what it is like to have all these problems for as long back as we can remember and to end up so similiar. sad but true ... but when you ay 'i know what you mean' to me, i will know that you truly do. i always felt i was fighting the good fight all my life, and keeping my head above water, but the rsd is a whole new fight, and one that i do not always win. it is a day by day thing and makes me so tired.
well i hope the computer behaves ... keep in touch. did you get my e-mail address? just in case you need it.
joan

joan,

i don't know if you saw my other thread, but iam having an bad time with my foot. it keeps turning in and i can't put any weight on it. the pain meds are not working. I went to the er today and they took xrays but didn't find anything. they put me in a cast and i have to use cruthches until i see the ortopedic dr. has this ever happened with your foot? its pretty scarey. I hope your doing well.

love
Sue

hi sue,
i did see the other post just now and i am wondering if the foot went into a huge spasm, that is what it sounds like to me. with our neuropathy and foot drop just not having a brace on can lead to a huge and long lasting spasm that could turn the foot. the cast may help a bit with the pain, but i hope you are not in it long, since the immobility of a limb is not good for RSD. the ER can put on a good cast for sure, but it was the lack of diagnosis that worried me. i hate to see symptoms treated when the cause is not known. i hope you saw your husband's doctor and he has a knowledge of RSD and i hope he helped. keep me posted.
i have not been on line much because i just found out my daughter is having twins and the phone has been ringing off the hook! that will make eight grandchildren. yikes! so i do check my e-mails just about daily but i do not always come on the site every day. i like to, but don't always make it.
hope you feel better and get some answers. joan

Hi Joan,
I went to the drs and he said that my foot is just gone. I'll have to have a fusion. First he is going to replace my scs with a bigger and better one. I was fitted today for a new brace. Boy did that hurt. My foot hasn't been that straight for a long time. Congrats on the twins. I had twins, identical girls. they are now 26. It was quite a shock. the drs didn't know. I had a spinal and couldn't feel anymore contrations. He pushed on my stomach and said "oh my god theres another baby in there". I knew something was wrong because the first baby was only 4lbs 6oz. I was big as a house. The second one weighed the same. Twins are alot of work, but also so much fun. I wish you all the best. Enjoy them. I hope your feeling ok. Today has been so bad. they moved my foot so much. the pain meds are not working at all. I'll have to be on cruthches untill this is all fixed. I pray to god this doesn't happen to you. Thanks for being my friend.

Love Sue

Hi Sue,
Oh Boy Did That Sound Painful. Ouch. I Hate Just Putting On My Brace, And I Know Getting Fitted For One Hurts, I Can Just Imagine How It Felt To Have That Foot Repositioned Like That. Yikes. I Hope It Feels More Secure Now Though, And You Can Deal With It.
I Remembered You Said You Had Twin Girls. These Are Fraternal And We Do Not Know The Sexes Yet. It Is All Very Exciting. I Am Working Hard To Strengthen My Back Before They Come. I Had Let The Exercising Go, So I Know What To Do, And Now I Have Some Definite Motivation And A Time Frame To Boot! Susan, My Daughter, Gets Diabetes When She Is Pregnant, So We Are Eating Our Salads Together ... She Is Eating For Three Though And Me, Just For One!
I Am So Glad To Have Found You And Have You As A Friend. I Am Here For You. Joan

hi joan,
i think we were supposed to meet. its like we are the same person. the rsd. twins. and your daughters name is the same as mine. tell your daughter to get lots of rest. she'll need it. i wish i new how to put pictures on this thing, i'd show you my girls. when they were born we could't tell them apart. we had little ankle braclets made with ther names on it. at least you will be prepared. i had only things for onr baby., thank god my friends went on a big shopping trip. hope your well.

love sue