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| Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS) |
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12-29-2009, 04:06 PM
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Thank you so much Pete. You made my day today. I had to chuckle at the part where you told me to quit talking to my hands. U don't know how much i really needed that today. You made me smile. Thank you so much for that. i had to share that with my daughter and her boyfriend and they kind of chuckled at it to. They asked me if you were married and I told them no that you are having a rough go of things. I also told them about my being able to contact you and you wouldn't believe what they said. I am sharing this with you cuz i thought it make you chuckle a little. They said maybe he could be our new daddy...lol.I think i am feeling better now because you as well as the kids made me chuckle and i needed that today. YOu brightened my day today thank you so much for being such a wonderful friend.I am so lucky as others are on this site.I think God meant for me to be able to be friends with you and everybody here. Thank you so much.
As far as talking negative to my family and hubby I can explain a little more.My family I would go see and they would see my walker and I think they realize that I do have a disease but they don't know how to accept it so they just try to take the easy way out.I didn't talk negatively to my family. They seemed that they could care less about my disease as it was so I just involved myself in they're conversations but I don't laugh like I used to. My mom let me know that one. She said that when I go to her house I am not the same Tracy I once was. I used to laugh and giggle all the time and now I seem to be depressed. That may be true but I can't just flip a magic wand and make myself better its not like that. My mom wants me to smile and laugh every time I go down and I am sorry if this makes me a bad person but I can't do that all the time. My mom knows that i am not the same person I used to be but that is what she wants. I can't give that person to her because i am not that person anymore. My dad thinks that everytime I am asked to come down that I am just making up an excuse to not go down.That is not true. I told them all I can only take things one day at a time and see how i feel on that day. If it happens to be a bad day for pain then I try to stay home to settle the pain down. My mom spoke for my sisters and brother and told me that they told her that they don't know how to deal or handle with my disease therefore they just don't want anything to do with me. All that right there is just very hard for me to accept. I really try hard not to talk negative or even talk about my disease unless I am asked about it but I think the walker is a huge reminder. I could be wrong but what else is there with them not believing me? My husband has to bust his rearend everyday to try and make ends meet and to be able to make sure I have my meds and I understand that his part is not easy either. I have had conversations with him telling him that I know he is really stressed and has a lot to worry about on his end and that I really appreciate everything he does for this family. I tell him words can't say enough about how much i appreciate what he does. I tell him I love him every day,but I don't feel that when he says it that he means it.I am sorry.When you hear your own spouse tell you that they are staying out on the road and trying to stay busy when he is not on the road partially because he doesn't understand the disease and he can't handle it how am I suppose to feel? I really do love him. I just feel there is a huge distance between us and I really believe it is due to what he told me. How do I get over all that? I am trying but don't know how.Please help. Sincerely, Tracy the mess |
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12-29-2009, 04:16 PM
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#12 | ||
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In Remembrance
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Tracy,
I'm glad you got a chuckle! Nobody here should EVER take me too serious! Have you joined RSDSA.org? You can tell them you're financially "behind the ball", and they'll let you join. That way, you get a newsletter, and you can get some of their cool brochures, for your family. They can read 'em, and deal with it as they will. Education is a beginning to Understanding! Also, check out: http://www.rsdcrpslifesavers.org/index.php As for books, check out Amazon.com! They have lots on RSD. Hope that helps... Most of all, keep your chin up around others, and cry in private. That's what I do. (Try to anyway). It's impossible to do always, but, it's good to strive for!! You're a good friend Tracy! love, Pete |
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12-29-2009, 10:04 PM
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Tracy,
I think sometimes we have expectations that our family will always be there and understand our lives. But it is not reality always. So we find new friends and pray that one day our family will come around and understand what we go through. I have come to the understanding they dont get it and how sad that as a family we could grow from each experience we go through. Not everybody wants to grow and become better more compassionate people. As far as your husband, look at it from a different side. He told you what he feels, now your job is to do what you can to validate his feelings and find ways to show appreciation. Words don't always do it. The first step in order for things to even begin to turn around is to say what we feel. And he has.We always take it in a negative way but if you could turn it into positive, however small ways, life will begin to change. God never promised us everything would be easy, but He would be there to help us and ask Him to put the correct people in your life and your husbands to help him get through this also. Take care of yourself and of your husband the best you can. |
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| "Thanks for this!" says: | AintSoBad (12-30-2009), screwballpookie (01-11-2010) |
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12-30-2009, 03:37 PM
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#14 | ||
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Thank you all so much. I do feel somewhat better but it is hard to get over all the hurt just because of one disease, one accident. Sometimes i wonder why me,but I can never answer that. It is so tough because there were so many things I could do and can't now. I used to be able to help my husband with cutting wood, stacking it, taking care of the wood stove, helping him with whatever he needed help with in the cattle yard and I can't do that kind of stuff any more. It just makes me sad. I do go outside when he is out working on the wood and ask him if there is anything i can do to help him even if it is something small and all he tells me is its all to heavy for you so no there is nothing you can do. It makes me cry and wish that I could be like I use to be. I know I will never be that outgoing person I use to be and it is really hard.I do cry when he says that to me but not in his presence.I am so angry at myself for that one stupid accident. I tell myself if I wouldn't have made that one mistake I would be what I use to be, but I know there is no changing it. It is so hard cuz I can't even do the things I use to do with my daughter. That really sucks. She is 14 and I have missed out on so much time with her. I can't even ride bike anymore. i haven't rode bike for I don't know how many years. We had just gotten me a brand new bike to ride just before I found out I couldn't do it due to me hurting real bad when I held the handle bars. so I couldn't do it any longer. I know there has to be a positive or two in this mess I just have to find them again. I was there at one point but I went backwards again so I need find the right hill to pull me out of where I am at. I know I have come to the right place for that because EVERYBODY here cares about one another and you all can help any of us pull out of anything at least mentally. Physically might be a little more complicated cuz we are all different. No matter what we are all there for one another and can and will be there to try and help one another out the best we know how to.
Thank you all again for trying to help me. Pete you are still one of a kind and I would never replace you for the whole world. Thank you so much for being such a wonderful friend. Sincerely, Tracy |
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| "Thanks for this!" says: | AintSoBad (12-31-2009) |
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12-30-2009, 05:42 PM
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Dear Tracy,
My head hurts all the time. But I NEVER tell my husband that, I don't think he would be able to stand it if he knew how much pain I am in. I am quiet about my pain with the kids, too. They don't need to hear about it, they are only 19 and 15. My husband is very concerned about the meds that I take, so to make up for it I'm careful with my diet, take lots of vitamins, exericise often (I can only really walk because I can't use my arms for much), and don't drink booze at all to avoid problems in that department. I think when there is a lot of mutual care and concern between couples we have to do our best to be thoughtful of each other. Yes -there are so many things that have changed for us with the RSD - and it's really, really hard. Our 25th anniversary is coming up within a month. But life and marriage is about challenge. Our babies were challenging, our teenagers have been challenging (!!), at one time in our marriage our finances were challenging, and now my illness is challenging. And it's by far the WORST challenge we've ever had. I never could have imagined I could feel this kind of pain, or how incredibly evil WC the people at The Hartford could be, or that a doctor could write the IME that was written about me (the worst that many of my treating medical professionals admit they have ever come across), or how many tears I could cry. And now I know that as soon as my son finishes high school we will need to sell our house and move to a less expensive area where we can get by on just one income if necessary. It's too risky with my illness to keep, even though it's not extravagant by any means. It's been a long year and a half since I was diagnosed...I could whine on and on and on....as you know with RSD it's just one thing after another as the symptoms keep getting worse over time. But I TRY to whine to you guys and NOT to my family. As I said before, I don't want to burden them with my pain. As a couple my husband and I have always been close and tried to work out our problems together. I am so thankful most of the time that there are 2 of us! But if it ever got to the point where I felt like you seem to feel, I would call a therapist. It sounds like you want to stay with your husband and daughter together as a family. I truly wish you the best of luck. XOXOX Sandy Last edited by SandyRI; 12-30-2009 at 06:51 PM. Reason: Editorial |
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| "Thanks for this!" says: | AintSoBad (12-31-2009), screwballpookie (01-01-2010) |
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12-30-2009, 07:29 PM
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If you are a spiritual person, you can pray for peace and joy, the fruitage of God's spirit Galations 6:7. There are books that helps us with communication skills. The way we communicate is so important. It can make a difference from the other person receiving our message and really receiving it, or rejecting the message and viewing it as criticism. There are even classes at community college -interpersonal skills. An example would be, "when you stay away from the house, I feel lonely and really miss you." Instead of saying something like-You don't like being around me anymore-I hate that. You are grieving just like someone grieving that last a dear marriage mate or friend. Your are grieving for what was-what you used to be like, what your marriage was like-the things you loved to do together. Perhaps, you could journal those feelings down and cry, Look for the things that you could do together NOW. If you don't like basketball and he does, learn what the game is about and watch it together-have a pizza basketball night. Losing your hand skills is terrible- I couldn't cut my own food. or zip my clothers or botton things-peel potatoes etc. 100 treatments of physical therapy, massage therapy, including massage therapy helped me get half of the use of my hand back. Can not cut my food, dress myself, prepare potatoes etc. There is a book out Always Looking Up by Michael J Fox- he has MD and it's all about his adjustment and optisim and gratitude. He wasn't that way at first-he drank and felt sorry for himself. Now he travels, gives lectures and helps others to adjust to their circumstances. It's tough on us and tough on our families. My daughter and I playd tennis 5 days a week, tournaments, water skiied, snow skiied, traveled to many countries and now I have full body and in a lot of pain. After 15 years-still mobile, stretch, desensitized, grateful for so many things. It's not the same with my husband, I used to run our business, but my memory inhibits me doing that. I am limited in driving due to medications. We used to go to Maui every year and water ski all summer and Arizona has a long summer. Our daughter misses our water and snow skiing days. She was 15 when I got RSD following breast surgery, benign. She is married now and her hubby does all those things =he's a doll. They have done a lot of research themselves on RSD and encourage me to keep active. He is a pilot. I've started my own business I can do from bed a lot and visit people when I feel like it. So that's been really encouraging. I see a psychiatrist that has been wonderful. When my parents died back in '73 & '81 I got into counseling for 2 plus years and helped so much. Something extremely important to take care of is any legal issues regarding the car wreck, when you were rearended. Your SCS not functioning correctly since that accident. You need to get that documented and have an attorney handling that for you. The issues from that wreck may not even be manifest now. Not to scare you, but some people get body wide spread from SCS surgery. Are they wanting to re-do your leads? This disorder and meds are very expensive. WC is terrible to deal with. A private insurance company from an accident would be much better to deal with, if your SCS quit working because of the accident. My daughter is a court reporter and she see's it all. Sad, but true. I read a book called, You can't Afford the Luxury of a Negative Thought " by Peter McWilliams. Besides journeling, music can lift our mood, candles, painting-even paint by numbers LOL. Writing friends, calling friends, Distraction is huge to help us get thru each day. I'm 61, hubby 72, daughter and son in law 30. We have lived here 12 years in Arizona, have friends visit every year from Oregon, Washington. Keep in touch, we all need each other-your friend-loretta with soft hugs 
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| "Thanks for this!" says: | AintSoBad (12-31-2009), screwballpookie (01-01-2010) |
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12-30-2009, 08:50 PM
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As I read this thread.I can not help but think if others don't feel the love and friendship before they should be reading this thread..it's all in here..like Prego!! I want to add..that Tracy listen girl everything you wrote and feel is very genuine and common..I have always said the appearence is only the beginning of our troubles..Not sure if some one told me this or if I came up with it all on my own, if I did I am mighty proud of myself..but the word...."expectations"... right on Pete! I learned and feel very strongly not to place expectations on my peeps..Honest, because you will set yourself up for disappointment... they, your husband children and friends are all going thru this illness with you..at different levels due to their relationship with you..AND they are having pain just it feels different that ours... Now I am not saying our needs shouldn't be met by them just that this is devestating on them too...I too try to vent to my therapist (they make good $ to hear us out) and try to stay supportive for my peeps cuz since this RSD is so dang confusing and painful for me..it has to be to them and they need our support getting thru it just as we need theirs...We have all changed thru this..I say if we don't change then we are not being honest with each other..change for the good tho..I now look for the simple sweet things in life..most of the time they are free...I was a tennis instructor for 15 yrs...can't even walk on the court now with out my cane but remember and I always say..the love I feel in my heart and what is in my mind is still the same as prior to me becoming ill with RSD.. and that makes me feel good. RSD can't take that away... I still think I am the luckiest lady out there...I just have a larger agenda now.. You have many caring friends here...vent to us..we'll see you thru.. Keep Smilin... A soft hug for you! |
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| "Thanks for this!" says: | AintSoBad (12-31-2009), screwballpookie (01-11-2010) |
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01-01-2010, 02:08 PM
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I really want to thank Pete, Loretta and KeepSmilin for all your kind words. Words can't begin to express how I really feel about what was said to me. I really needed all that advice. It all has helped me to be able to pick my chin up a little higher.
I keep trying to reach out to my family, meaning my mom,dad,sisters,bro and my best friend that I thought she was, but for some reason it seems that I keep getting rejected by them. I don't know what else to do. I had gotten into a little arguement with my mom yesterday over why we didn't make it to there place christmas day. She was angry that day as well as all the rest of my family and she told me that she still is. I couldn't help it.We live in the country and our gravels had 1-2 inches of ice on them my husband said it was to dangerous to go so we stayed home. My mom is still a little angry about just that. What can I do to get her to understand? My mom also told me that when my best friend got to her house that she had to use the excuse that her and my brother got into a fight in order to get me to answer her call. That was a complete lie. I answer her calls everytime she called me and answered her texts when she texted me. We promised each other that we had each others backs. I kept my end of the promise up but I feel she didn't cuz she lied to my family and made them even more angry. I told mom that was a complete lie. I always answer her calls everytime she calls and all mom could say to that was "I don't know that is what she said" I asked mom if she believed me and she said yes in a way that I know from being younger and growing up the tone she used was that she really didn't believe me. It hurts that my family would choose her over me and that at least my mom as she put it is still a little angry with me. What do I do? i am expected to just let everything go and move on according to my mom, but she hasn't since christmas so why should I. She isn't the only one hurting here so am i. My best friend try to contact me yesterday and I couldn't even answer her text because i am so hurt that she could go and tell my family one thing and tell me something else. She lied to me. We were suppose to have one anothers backs and she dropped her side. Am I looking at this whole thing wrong or not?Please help me. I am hurting so bad inside that all I can do is cry off and on. I will lock myself in the bathroom or be here in the computer room and cry. I try not to cry but it is real hard right now. If anyone has any ideas for me please help. With all this stress it sure isn't making me feel any better if anything i am hurting more with pain phhsically and emotionally. Please help I feel as if I am drowning. Thank you for listening to my rambling again. I am so sorry, but thank you. Sincerely, Tracy 
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01-01-2010, 03:21 PM
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In Remembrance
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Tracy,
You asked, I'll give you some advice.. I'm not saying it will be easy, ok? Yes, I do believe you're looking at the thing wrong, you need a small adjustment. You want your mother / family to change. I'm sorry to say, that you can't change them. Accept things you cannot change, remember that prayer? You want your mother / family to accept you. Yet, you're not accepting them. While you can't change them, you very may well be able to lead them! Thereby changing things slowly. You'll change the dynamic. I'm going to repeat this to you until it's marked on your brain.... "Expectation is Your Doorway to Disappointment"! (repeat it to yourself, it took me a while to get it, and live it!) So, if you "Expect" something of your Mother / Family, you may well be disappointed. If you don't expect much, you'll be much happier! Same as with your body, hands etc., if you don't "Expect" them to be as good as they ever were, you won't be disappointed! Let go of your expectations, Tracy! Otherwise you are going in circles of disappointment, pain and hurt! Think about how much you want to stop crying. Slowly, a smile will come over you! Think about this, too. How much are you acting like your Mom? (I have no idea, this is for you to answer), but, I'd guess that it's more than you might think... Be well, Tracy, and feel well! there is no magic pill. This will take a little time. Always wish you the best!~ Happy New Year! Pete |
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| "Thanks for this!" says: | screwballpookie (01-04-2010) |
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01-01-2010, 05:08 PM
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#20 | ||
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The word is not to have ANY expectations from others...Then you will NOT set yourself up for hurt..from anyone..it is a hard concept to understand and live by but I promise in the long run you will be happier for when people including ALL family members surprise you and meet you in the middle..it will warm your heart at that time and not before!! I had to learn this myself just recently.. my bestest friend who brought herself closer to me due to her compassion for my illness..and we became good friends... well she is a bit of a loner by nature... many times, I would love to pick up the phone and say... hey..I need you now but I stop my self because.. I EXPECT that of her..in reality she is home, relaxing with a good book.... SHE has been so supportive of me.. and I need to be less demanding due to my RSD, that in itself can push others away who care .... Another added bonus of RSD This way of thinking does alignate us a bit more than we need or want but it will come back to helping you feel better..I promise..as if RSD is not enough for us to live with but setting your self up for hurt by having expectations and trying get others to act like WE want...Whew..thats like moving a mountain, my friend!!!! Remember... Keep smilin.. and the world WILL smile with you!!!!!! Talk to us...let us help you..you will be okay!!!
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| "Thanks for this!" says: | AintSoBad (01-01-2010), screwballpookie (01-04-2010) |
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First off I want to thank everyone for my rambling. It really means so much to me. 
whew..what a wonderful thread..
Thanks a Billion
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