Joan M.
 

Hi Joan,

I didn't know if you saw my other post. I did get your message, thank you.
Iam not so good at this computer stuff. I did send you something back, but I don't think it went through.
My hip problem started at birth. Congenital also. In 1999 I had a hip replacement and ended up with siatic nerve damage, right foot drop, and RSD.
I live near Springfield so it was nice to hear from someone close to home. I have searched for support groups in this area and there are none. This is a great place to talk to people. It just makes me feel better, not so alone.
I hope your doing well.

Sue K.

wow, also congenital from birth and then hip replacement with the same damage. that is something. i was surprised to find rsd people, never mind one with such a similar past. i look forward to chatting here. sometimes i forget who i told what to and repeat myself so excuse me if i do.
did you have your surgery locally? my last replacement was at the new england baptist ... the damage was already done from the surgery in fall river where i had it replaced a year before. wish i had gone there for that reconstuction and replacement first. i had my first hip replacement in 1974.
well, nice to meet you ..... sorry you are here. joan

Joan M.
 

Hi Joan,

I had a reconstruction done of the hip in 1987. I did ok for a while, but one morning I got up in 1998 and could't walk. I went to my doc and thats when he said I needed the hip replacement. I had an arthritic cyst on the hip socket. I had my operation at Baystate Medical in Springfield. When they got in there, the postier eall had been eaten away by arthritis. when they put in the metal walls to replace the bone, my sciatic nerve got damaged in 3 places. I've gone down hill since then, Thats how I got the RSD. I hope your doing well.

Sue K.

my doctor in boston told me they had stretch the nerve in Fall River and that is what caused the palsy with the foot drop and numbness and the rsd was just a bonus i guess.
may i ask what treatments you had as a child forthe congenital problem? mine was not diagnosed until i was four, i was falling alot, and then i spent two years in body casts from my underarms to my toes with my leg in all sorts of positions to try to get the hip in the socket the right way. i ended up with a 4-5 inch difference in my leg lengths from that. over the course of the three hip replacements, that is almost normal now. but of course now with the palsy and the rsd i am in a differet mess .... i did manage to have a family and become an RN despite it all, but that is all gone now.
do you go to a pain clinic now? i just use my pcp at present. joan

joan m
 

they found my hip problem when i eas 2. i also had the full body casts. My grandfather was the one who noticed the problem. He took alot of home movies and told my parents to look at how i walked on the films. my right foot was pointing out sideways when i walked. i also had the length problem. my right leg was always shorter. I somehow managed to work and have a family. I have twin daughters, 26yrs old and a 22 yr old daughter, 5 grandchildren. work for me is also gone now. i really miss it. its one of the big problems i have had to deal with. i would give anything to go back to work.
i've been going to a pain clinic since 1999, 3 months after the hip replacement. its like my second home if it wasn't for them i don't know what i would have done. my orthopedic dr. wanted me to just deal with the pain.
Joan, its so nice to be able to talk with you. thank you so much.
hope all is well.

Sue k.

hi sue. the similarities are amazing. my grandparents kept telling my parents there was something wrong too, but my mother, who was not and is not a very nice person kept telling them i was fine until the constant falling made them have to address the problem.
i don't think i ever met someone who has been in the body cast .... wow, my mind is amazed. other than mine being in my left leg, i think we are twins! my birthday was yesterday and i am now 55, been married almost 38 years and
i have two children, a daughter who is 36 and a son who is 35 tomorrow and i have six grandsons, 18, 17, 15, 14, 7, and 5.
i too miss work so much. i was talking to my therapist yesterday about how that was when my disease took over, up until then i had fought a good fight.
what did you do for work? i was a nurse, ortho, surgical, then icu and recovery room. i took a leave of absence to get my hip replaced and never got to go back. i loved it beyond love ... and miss it all the time.
now, is your pain clinic close? what do you find you get out of the pain clinic? my pain is getting worse and has spread to the right foot and i am told i have reynauds in my hands but i often wonder if it is the rsd, and i am considering a clinic but i don't know what i want to do at this point. i have always used my pcp and just a therapist, except for the facet blocks for my back that i went to the baptist for. i have a bad degeneration of L4-L5 from the leg length difference and walking like that for years.
well, i look forward to getting to know you better. joan

Happy Birthday!

My mom sounds just like your mom. She never paid attention to the problems I was having until it was to late. She still thinks this is all in my head. She always tells me I should just be able to get over it.
Iam 48 yrs old and married for 25 yrs. For along time I worked at the A&P as a Head cashier. Then I worked at Shirners Hospital as a housekeeping supervisor for 5 yrs. Then I had the hip replacement and couldn't go back. 2yrs later I tried working at Cumberland Farms as a store manager but that didn't last long. The pain was too bad. Iam now on Social Security.
I love going to the pain clinic. The Doc I have there knows alot about RSD. They see alot of patients with it. If it wasn't for them I don't know what I would do. I have a spinal cord stim, but I had a couple of bad falls and the leads slipped out. it had to be turned off. The pain clinic is at Baystate Hospital in Springfield. I think it would be good for you to go. As many Dr. as Ive been to in my life, these are the ones that have helpedme the most.
It is amazing how alike we are. Ive never known anyone thats had the same things happened like me.
I enjoy talking with you. Take care.

Sue K.

thank you for the birthday wishes. the age does not bother me but how i feel at this age does ...
what do you take for meds now sue? i have steered away from so many things, and had bad reactions to others, that i am back to just my neurontin 400mg tid, and tranxene 7.5 at bedtime for sleep and cramping and if needed for anxiety, 800mg of ibuprofen when needed, heart and bp meds, and right now i have no breakthrough med because the ultram makes me so nauseous and we could not deiced on anything else .... and i had to stop my trazadone because i was losingthe ability to tell if i had to pee! now that was the last straw there. it was helping with both mood and pain but yet again, it had bad side effects.
anyone else with ideas on meds ... i'm welcoming ideas.
i have taken vioxx, cymbalta, and many narcotics that just make me loopy and sleepy and i prefer pain over that. so i'm open to suggestions.
i have not done blocks ... scared to death there. had the facets for my back and that was enough for me. and scs also scares me to death and with my back deterioration i dont think i would be a candidate for that anyhow.
and sue, do you use a cane and/or brace for the foot drop? i am happy to say that whoeever mentioned the gel insoles is an angel. i tried them ni my shoe inside the brace and i am so much more comfortable and able to keep shoes on much longer. thank you thank you thank you.
joan

hi joan,

i started wearing a brace on my foot the day after the hip replacemet. i take oxycodon for pain,and xanex for sleep and the panic attacks. i used to take methadone but it had awful side effects. neurontin didn't work for me. iam supposedto start taking trazadone, i thought it was topamax but when you mentioned it it sounds more like what the doc said. i didn't mind the blocks. but they stopped working. i go on july 9th, i'll have to see what they say. my foot is really turnng out bad. its hard to walk.
well i'll have to go for now. the grandkids just came over. talk to you soon.

SUE K.

Hi Sue,
I Had A Day Full Of Grandkids Today Too. They Were In And Out Of The Pool More Times Than I Can Count. It Was My Son's Birthday On The 1st So We Had A Little Cake For Him After A Cookout Today. My Husband Did Eveything And Yet I Am Tired And Will Be In Bed Soon .... I Look Forward To Tomorrow Because It Will Be A Quiet Day I Think??? We Havea Big In Ground Pool So I Never Know Who Will Come By Or When. And I Love That But I Get So Tired.
Now Do You Meet In A Group At Your Clinic With Other Rsd Patients? And Do You Go To Therapy There? I Have Counselor Who Is Wonderful And Who I Go To Every Week. So You Have Panic Too. I Guess That Is Part Of The Stress Of This Monster. Iam Not Bad Now But Had Some Tough Years With That And With People Staring And Asking Question ...
Well, I Am Off To Bed. Have A Good Sunday.

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

hi joan
having such a bad time this week. can't take it anymore. how have you handled the rsd so long? i guess iam just going through a bad week. mentally and pyhsicaly. hows your daughter? iam so excited for all of you. hope your well.

love sue k.

p.s. mabey tommorow will be better. iam going to a martina mcbride concert in springfield. going to load up on meds and bring the crutches. i hope it takes my mind off things.

Did "Our Sue" just say;"Martina McBride"?? OMG I just love her!!! Go, have fun, drink, be merry!! :D Sounds like such fun, Sue. I hope you feel better, I know her show will help ya! Love and hugs, Desi How have ya been doing as of late, Joan?? better.. I sure hope! Love, Desi :Wave-Hello:

hi sue,
sounds like you are having a bad day. sorry. take it at that, and get up tomorrow and try again. i have lasted with this rsd the same way i have gotten through the rest of my hip troubles and pain all my life, i ignore what i can, medicate what i can, and then i live life as best i can. i have some horrible days, and i cry at time, but mostly i assess my 'spoons' for the day and get on with it.
i do not wait for someone to understand me ... i tried that ... no one 'gets it'. and i have larned not to do what others demand of me, but what i feel i can and want to do. it is survival, Sue.
i do not believe i deserve this, or that it is a punishment, although at times it can feel that way. i believe it pushes me to do and feel and be what i am meant to do and feel and be. it is not my choice, but how i deal with it is.
now as for concerts ... i went to see peter paul and mary a few months ago and they are my favorites since as far back as my teens and that is far back ... and i feel i enjoyed it more than most because getting there, and having that joy, is something extra special to you and me. it means more because it is a big deal to get there and sit through it. i floated for day saying to myself .. i actually saw them and sang with them! so, i do hope you thoroughly enjoy your concert and feel how special it is, and come home a bit refreshed.
you know sue, your life and mine have crossed for a reason. we have a sister heart i think. i know how you felt as a child, a teen, and now with rsd as an adult. i will be here for you, and i look forward to many chats together. you can complain to me or share a good day ... i'm happy to be here for you and visa versa!
my daughter is moved into her house.. i way way way over did helping, and i am sooo in pain and tired, but she is in and she did not life a box. i orchestrated and helped organize, and her boys and my husband worked and worked. so now we will fix up the place with the curtain etc. and get ready for the twins! i will keep you posted over the months to come for sure. today i was a at graduation party for my nephew and she came in and was the center of attention ha! everyone loves that you are having twins! it was great. she is glowing.
so chin up my sister. and tell me about the concert.
joan

joan.
the concert was great! dimond rio was there too. but when your at something like that you forget about the pain for a while and things you shouldn't do. the next day i payed for it but it was well worth it. i love country music. my biggest dream is to see rascal flatts. i love them. hope your well.
love sue

I'm so glad you enjoyed the concert. oh, everything has a 'pain' cost, and if it was worth it, that is all that counts. I do that all the time.
the heat and humidity are killing me and making me swell! and my AC broke! the thunder is coming though and it will cool us down, and someone is coming to fix the AC friday or saturday. oh well, i have a small AC in my computer room, so I am cool right now.
rest now from your venture and then think of what you will do with your next burst of energy. ha! take care, joan

hi joan,
i got my new brace on friday. its hard to get used to ,but it is helping support my foot until they can do the fusion. its stopping some of the pain in my foot. how is your daughter? how are you? its so nice out today, not to hot i think I'll sit outside and relax. I finally said no to babysitting today, a first for me.
hope your well.
love
sue

HI SUE,
tell me why are the bones in your foot so bad? is this an ongoing thing like wear and tear from the hip problem, or from some type of accident? i have to wear a brace for the foot drop and i hate it ... i have throw it across the room a few times! ha! not too mature, eh? but it does help and get me where i need to go with less tripping. so good luck with the adjusting to it.
i also wanted to ask how long you were in body casts? i was in them for about 2 and 1/2 years. from 3-5 years old. my father made a scooter for me to lay on and get around the house. i learned to be a good artist though. there is something good that can come out of everything i guess.
i had to deal with a problem with the grandson who lives with me this week, and so that has not been fun. but today is gorgeous, and neither hot nor humid, so i am enjoying it. i just cut the border strips for a quilt i am finishing and will go back and get it done after this. it is for my kitchen table. then i will begin crochet and sewing for the twins! susan is doing well except with the diabetes. her numbers are a bit high so she is seeing the doctor every Monday. i worry of course, i have to, i'm the mother! but she looks good and is getting bigger. we do not yet know the sexes. maybe in july.
well, i hope you have a low pain weekend and holiday.
how nice to have a 'congenital hip/rsd sister!! joan

hi ,
the bones are bad from the foot drop. i think over time it just gave out. i have the brace so i don't trip also. but this new one is for better support also. i have fallen alot from my foot just turning over. now if i have to get up in the middle of the night and get to the bathroom, i have to use crutches. it takes to long to put my shoe and brace on just for that.
iam not so sure how long i was in a body cast. i know it was for at least a year. my dad made a special seat for me to sit in and in the home movies it looks like i learned real quick to get around on my stomach. my mom says i was always breaking the cast. the doc gave her supplies to fix it herself. it is nice to know someone that has the same exact thing as you. you really know what its like to have something wrong for all your life. although iam so sorry you have these problems. iam sorry for all of us.

love
sue

HI SUE,
well i did not realize that you could have such a breakdown from the foot drop. did you wear a brace right from the time of the hip surgery? i can move my foot in certain ways, i can press down, like stand on my toes, and move inward and slightly outward but i cannot lift the foot up or move sertain toes. i can twist my ankle easily because of the weakness there and so do wear that brace just about all the time. i have worn a day brace since the beginning, and i wore a night brace for years because if my foot is in 'drop' position i get horrid leg cramps. i go without the night brace now unless i have over done during the day. i have a four pronged cane near the bed for those night time bathroom trips. the crutches are easier but i use the cane. who knows why? i remember using the metal crutches as a child and doing tricks on them when no one was watching. i was pretty good swinging around back then!
i asked about how long you were in the body cast because i figured if one is diagnosed earlier then they would probably be in it a shorter period of time. did you have to go into the hospital and have the cast repostioned every few months? i remember the anesthesia well and how sick it made me! you will have to excuse my curiousity but i never thought i would talk to someone who has been through what i have. i bet we could talk for hours on end. from the crawling on the floor, to the kids at school, to the fear or child birth, to the rsd .... it spans a lifetime. it is incredible to me that we have met. please if i bug you with my questions, tell me.
lovingly, joan

Bumped Up For Sue K

Hi Joan,
I don't mind you asking questions. Its nice to have someone to talk to who knows exactly what iam talking about. I rembember all to well things like the kids at school, the crutches, operations. My mom was always taking me to the hospital for something. I wanted to ask you a strange question. Did you get any phobias from this. This sounds stupid but, I am so afraid of turtles. The drs. said the only thing they can come up with is that when i first saw a turtle, it reminded me of "my shell" and it must have been very tramatic for me. I use a body pillow folded in half to keep my foot up at night. I can't move it at all. I go to the drs. today. Iam glad we met. I can't belive it either.
Hope your well.

Love Sue

HI SUE,
well yes i have some problems from the years in the cast, and all the 'hands on' by too many people, and also my mother abused me while i was in the bosy cast so that did not help ... so i ended up with claustraphobia, i believe from the anesthesia mask since i always got extremely sick from the gas so i do not like anything covering my mouth, and i do not like just anyone getting to close to me or hugging me, i do not like to be held down, like if someone is fooling and hold you down .. no way. i am not very trusting. no turtles, but i can see that ... yes, that makes sense. we were like turtles in a way. i am uncomfortable in any situation that i am not in control of ... so yes, it leaves it's mark. my therapist says i have post traumatic stress from it all and from the abuse. but i love many things in my life, my art, my kids and grandsons, animals ... i mist tell you i have recently adopted two water turtles!! i will look at them differently from now on, and study how their 'casts' affect their lives. i think theyare quite graceful in the water and sitand watch them often. it is mesmerizing. i also love my cats and parakeets. i am a nature person and garden when i can too.
i am hoping your doctor trip went okay and hope you let me know what the doctors think is your best route now. seems all we do with our lives is adapt to whatever is thrown our way.
so keep me posted. lovingly, joan

Joan,
Iam so sorry that with all that I know you went through your Mom abused you also. I had nothing as terrible as that but my mom worked me like crazy. She used me as her maid, babysitter, cook and so on. I think she wanted to forget that she didn't take care of me when I was born. So if she saw me doing all of those things, I must have been ok. I would tell her that it hurt, but she told me to just do it.
Its so strange how alike we are I also can't stand to have my face covered or have someone hold me down. I don't like being in small places with alot of people. I panic, can't breath. I went to a new therapist today. I think she'll be ok. She didn't know anythng about RSD but she is very willing to learn. I told her about some websites to go on. Take care Joan. I really enjoy talking with you. I told my husband that if I ever met you in person someday that I would just start crying. You are the first person I have ever talked to that knows everything about what my life has been like. Thank You.

Love
Sue K.

HI Sue,
it is funny you say your mother worked you like crazy and ignored your pain. mine did too! wow. i am so surprised each time we chat at how similiar our lives have been. yes, she did, what i now know to be sexual abuse to me while i was in the cast ... she made it seem like she was so caring to everyone, and they thought she was so doting. it was years before i figured out why, what everyone else was praising, 'felt' so wrong, and why i had nightmares about her hands all my life ... talk about phobias. i always thought she hated me for not being 'perfect' and i believe that now for sure. she resented taking care of me. she even told my daughter that she never enjoyed having children. i have worked through all that though. it took a while but i have come to terms with it all, and i have not turned out anything like her and so i am at peace. i was, and am, a good mother and love my kids and grandchildren so much. and i rarely see her. i have a great therapist and she did not know about rsd either but she knew all about pain and all about sadness and that was all i needed. i still go once a week. it is so helpful.
i will drive up to see you one day ... i can find springfield i am sure. you are already a sister in my heart. it is a unique experience to have felt alone in your soul for so long, and then meet someone who has lived the unique pains, emotional and physical, that we have endured, and now here we are rsd sisters ... i never in a million years thought i would meet such a person.
take care, lovingly joan

hi desi,
thank you for your concern. it is sick to do anything hurtful to a child and if you don't mind, i will take your tears and pass them on to whoever is suffering such abuse today. i had a loving nana and poppa and have some wonderful parts of my life that i prefer to dwell on. i don't give my mother any more of myself. there is much good to live even with rsd.
love that you love nature too. and i love the family i have made. as i told sue i will soon have two more grandchildren ... twins! i have six grandsons and yet i can't wait. i am only 55 so i have many years to watch all these children grow. my husband and i did good! we only had one daughter and one son and yet see how we have multiplied! ha!
have a low pain night, my friend, joan

Bumped Up For Sue
 

these get lost so quickly ...... lots of chatter on this board!

Joan,
Just reading what you write, I know that you are a good mother and a great grandmother to your grandchildren. Iam sure they love you very much. I have always tried to be different from my mother. She hates the way I raised my kids. I think she is jeoulous that we are so close. She is also very ashamed that my grandchildren are spanish. If you saw my grandchildren you wouldn't belive how cute they are. It shouldn't matter what ther heritage is. I try to teach them about both sides of their families.
You said something about nightmares. I had awful night terrors. I wonder if its because of the way my mother treated me. They finally stopped when I had the twins. Always remember you are a good person and a great friend.

Love Sue

Hi ya Sue!!
You sound like an excellent mommy!! My sister's Grand kids are also Spanish! They are both so darn adorable!! It is NOTHING to be ashamed of!! Love and Hugs Sue xoxoxo Love ya!! Desi :0)

Hi Desi,
Some people are so stupid when it comes to stuff like that. I always managed to have a rainbow of kids around my house. I didn't want my kids to grow up hating people because of where they came from or the color of thier skin. My husband is greek and my girls are very dark. They always were teased because other kids thought they were spanish. I didn't want them to be that kind of person.
I wanted to tell you i love your post. You are such a positive person. you make me happy reading your posts. you are also very kind. You live in Ohio right? My Dad used to live in Zainsville. He died about 7 yrs ago. Its so pretty there. I loved to go visit, but the 15 hr ride is just to much. Take care.

Sue K.