[StacyB]

I have had RSD for about 2 years. I like to think that I've finally accepted this fact, but the truth is there's not a day that goes by where I don't pray that I will wake up the next morning and find myself in 'remission.' RSD has not only brought chronic pain to my life; it also affects my lymph system & vascular system & more. During some really bad flares, it affects my speech, vision, hearing. Since my diagnosis, I've thought about joining a forum many times, but I've always changed my mind when I get to this part...where I'm asked to tell a little about me. I don't know how to do that, b/c I'm not 'me' anymore and despite my relentless effort to work through this and find my new normal....my new 'me', I just can't seem to find my way. So, I distract myself with my family and it's worked for a while. I have a great family, very, very supportive; But...This distraction isn't working anymore.....Lately, I find myself bitter & feel I'm beginning to resent my family sometimes. Does anyone else ever find themselves in a place like this? How do you cope, move on, express yourself without hurting those closest to you?

[reluctant@thetable]

Yes, I feel like you do. Although I've only been diagnosed for a year, I have tried everything I could to try to put this disease behind me. I have difficulty accepting that, although I've done everything I'm supposed from the onset of my injury to today, I have not been able to put this disease behind me. My emotions run the gamut from day to day. My family generally has been supportive but they have difficulty with the attention my disease takes. I'll say something is hurting more than usual and my husband will then say his ankle hurts. I returned from a bad dr.'s office visit where I was told there was nothing the specialist could do for me only to find my family arguing amongst themselves. My son asked me if I felt abandoned. I did feel abandoned by my family & the specialist. It can be very lonely but that's why we're here. Only we can understand what it's really like. I know I'll probably have to go through Dr. Kubler-Ross's stages of grieving but I can't ever imagine myself getting to the acceptance stage. This isn't what any of us could have imagined for ourselves- at all. I think about how a stubbed toe could possibly kill me. Blows my mind. But then I think that a car speeding down the street could kill me. I don't know if you're a religious person, but the one thing that gets me through it is that I know God has a plan for me and I put my trust in God. He's never left me down.

[reluctant@thetable]

Here are Dr. Kubler-Ross's 5 stages of grieving- http://grief.com/the-five-stages-of-grief/

It pertains not only to the loss of a loved one but to ANY loss, i.e. one's health, job, marriage, etc.

I think we all have to go through this when we receive a diagnosis like CRPS. You mentioned your acceptance but then you get angry. The stages of grieving are important in that people go back and forth between stages and this is absolutely normal.

Welcome to the group and glad you came.

[Keekans]

I feel like this all the time and its been five years for me. You learn how to cope naturally. I've learned to put up a sort of shield where I basically just smile a lot and nod my head when I'm around people. I just don't want to be the misery loves company person. It's hard and I couldn't always do it but I think it took three years. I just could tell that my family and friends were sick of hearing the same stories and it made them feel awful to be around me because of how obvious it was that I was in pain all the time. I didn't even care at first because I would just think all of their problems were ridiculous considered to mine. It's taken a lot of time for me to get to where I am. I first thought I had to push everyone away to protect them. Now I just try to talk about what is going on with them,movies and television show and a little gossip. Occasionally I vent but I try to spread it out with different loved ones. I also vent a lot with a therapist which is so nice to get some feedback from someone outside of your circle.

there's not a day that goes by where I don't pray that I will wake up the next morning and find myself in 'remission

Every time I go to sleep I hope I won;t wake up

[vanityfaire]

hi Stacy. Glad you came to this forum. I tend to come and go from here. I mostly come when I am feeling upset or need a reality check. Or just to have someone understand me. I too feel the way you are talking. I hate always talking about pain. I think on the most part I do pretty good. I came here tonight because I just got out of a 6 day hospital stay. My leg was infected with cellulitis. I am visiting my daughter in Colorado and I am from Washington State. I tried to avoid going in but I couldn't ignore the things that were happening to me. The last hospital stay was last November where they said if I had waited just another day I would have not been here. I was sepsis that time. So it made me much more aware and I cant' avoid all the time. The thing that upset me is trying to tell staff about RSD. I usually get the oh yeah I know about that when the fact is they have never heard of it. They try to get the wow you made it through the night without pain meds. Well not wait until the pain cycle hits and I can't stand it. The object is to make me stable. They ask me is your leg always red and swollen like that well yes it is. It looks like this pretty much all of the time. Right now it is a little more red and a little more swollen. Well we will keep you in here forever until the swelling disappears. Well guess what it isn't going to surprise. Patient is right after all. So I ended up having to spend the last night there because my blood pressure was too high. Ummm listen up folks not much you can do. Treat the infection that is cool. But appearances are not going to change too much..It did go down in size so that was nice. I also don't like the oh you don't like it touched and than a huge thumb print goes into my leg that the pain lasts for three hours. Okay venting over. I am glad you are hear Stacy you will be educated here. Hope you pain is tolerable.

[LARRY1135]

Every day I wake up as you do hoping that this is the day that it stops. That the pain will finally be gone and usually it starts out pretty good then gets more painful through out the day. So, yes I know what you mean there.

[LARRY1135]

Originally Posted by Kevscar

there's not a day that goes by where I don't pray that I will wake up the next morning and find myself in 'remission

Every time I go to sleep I hope I won;t wake up

I relate only to well to how you feel.

[StacyB]

Thanks everyone! It is nice to know that I'm not alone. I keep thinking, I should be over this by now & on to acceptance..... I mean, seriously, I do have a Great family. My husband of 20 years & both my children never complain about the effect my RSD has on their life & if I complained all the time, I don't think would complain. I had a job with a great company which required a lot of traveling; needless to say I can't travel all over anymore, so I've transferred to another department where travel is never required & I work from home everyday. So....I should be happy...right? The problem is I worked hard for the life I had & I liked the life I had. I loved my job & liked the traveling. My family & I led a very active lifestyle: Every winter, we went snow skiing the week after Christmas. We live on a huge lake & have a boat & jet skis. I love to ski, tub, wakeboard. We went hiking, climbing, deep sea fishing...you name it we did it. RSD has stolen all of these things from me! I am grateful that I still have a job & I am grateful that I am blessed with such a wonderful family. But I hate the fact that flying in an airplane is going to end in a flare. Shoes...I Love Shoes....instead of 100+ options, I have 3- options. I hate the fact that we I can no longer snow ski, water ski, hike, climb. My gait is so disrupted that I'm lucky to make it through the grocery store without stumbling. I still go on the lake & enjoy watching my family ski, tube, etc., but the truth is.....on the inside....I hate it....I'm ******....I'm jealous! Of course they have no idea I feel this way; I would never tell them these selfish thoughts. But what am I supposed to do with my life....sit on the sidelines & watch from now on??? I'm trying to find other things that I enjoy that are 'RSD Friendly', but I am at a loss! I always try to think of Dr. Suess' quote: 'Don't cry because it's over, Smile because it happened', but it's difficult. I'm only 38, I'm supposed to have a full life ahead of me, but instead, I feel like it's over.

If Dr Suess had had RSD his quote would have been "OMFG"