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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

Once again I have been heard, and by people who hear with their hearts, not just their ears. Thank you . I was hoping to learn from those further down the path, about the potholes, or bumps coming up...The good news is ,whatever is coming up, we will deal with as healthfully as possible, with as much help from professionals as we can "stomach" : ). Today I spoke with a wonderful man who is a therapist, who has two clients with chronic pain. Although he attends our shul, and won't be seeing us, he can point us in the right direction. Breathe again. I want to embrace what our life holds. I don't want to be afraid of this disease or how it is changing our family. From my point of view, although we don't tell our children everything that is going on, we do include them in what treatments are needed and why. We do shelter them from the big pain bouts, but they do see and therefore experience to some degree Ariel's vertigo, "everyday -all day long" pain, and they do know that I need to assist my husband throughout the day with different activities. In NO WAY do I think that this is "hurting" them. In fact, to the contrary, I am teaching in the strongest manner, by example, the level of commitment that is needed to make a marriage work. I am teaching them compassion, patience, humor, how to handle pressure, other words invaluable life skills. My husband is teaching them mountain loads by his example too. He is trying, some days better than others, to have time spent with us as a family. Today for example he watched the youngest for most of the morning while the other kids went to Hebrew school (I was designated chauffeur).The older kids understand the commitment from their Papa, needed to watch one of the most active two and a half year olds ever born! So they do their best at shul to mirror his example at home.Does this sound like they are being hurt? I think not. Am I sad we don't do some of the "normal stuff"? At times it strikes me like that. But, most of the time, our eyes are off of the t.v. mentality of what life should look like. Sharon, in particular, I don't know what you are going through...what stage your husband is in, etc...from other threads you can find descriptions of our own struggles with CRPS. I don't want to minimize with my words what you are going through at all. Do you understand the kind of pain your husband is in? Is he able to verbalize it? Can he freely tell you when it hits? If not, maybe to ask him and mentally put that kind of word picture onto your own limbs and walk around with it a while would help you from missing his sense of humor so much. My husband is gorgeous. He has a smile that can melt my heart. I don't always get that special smile now, but how could I even think to want it? when he is the most heroic man I will ever know --every day! When that smile does come I watch it like a blind person at their first vision of a sunrise. I carry it around for days, and just when I need another one, up comes the sun on his beautiful face. I think there must be a pothole labeled, to deep, to dark to enter. Or otherwise labeled the "I can't do this anymore." sign-post. I hate when those nasty words try to mock my effort. I do not recognize them or own them as my own sentiments. I think it is my brains way of saying, Anne you better come up with a new/better plan, cause the one being used right now just gave out. There is a turn in the road, called resolution. I hit it at about 75 mph. Speeding away from all the life changes my brain was being hit with. : ) But, boy, did the brakes come on emotionally for me when I realized that this disease and its effects on my husband, myself and my family just weren't going to go away. Not wanting to sound like a cheerleader, but it has produced good things in me. My own level of self-confidence has never been as high as it is now. Mostly, because what I am doing now is seen only by my husband, who appreciates even the small stuff. Has it changed my world view in a cynical way? You betcha baby. Okay, I've never confessed I wanted to grow up anyway, so a little whine now and again, may just be growing pains. Anyway, Sharon, and other voyeuristic spouces reading here, embrace what life has brought. Admire the small stuff. Cherish the memories of the past, and reclaim your future as a bright horizon, no matter what the weather looks like today. Anne
Hello to all,
Although we haven't been writing lately, we have tried to catch up on reading all the posts. It's a little tricky to try to piece together which people have which family members...when the information is scattered in different postings.
Ariel didn't have his third block. We went for the appointment, and our doctor took a look at my husband and said, "Let's just not do it. They aren't working, so why put you in more pain?" We both felt relief. The blocks would send Ariel into pain bouts we weren't sure how to get out of. The PD put him on higher dosages of medications. Then gave us the Big Talk on preparing for a spinal cord stimulator. We watched the video at home, which sent us both reaching for candy and ice cream..(remember I'm the supposed health nut) The thing is, we can almost get emotionally prepared for the procedure, but we just feel like we have no spare reserve energy to fight all the bureaucratic mess to get to the point of entering the hospital. The DOL et al is so awful. We can barely keep up with it all. Our doctor is hopeful that if Ariel does have a positive experience with the SCS that many of his other symptoms will "go away". Is this realistic? Currently his legs, and left heel are in pain, both eyes now, with very poor vision have been added to our original list of symptoms. He is Very effected by noise, it causes limbs to jerk uncontrollably. Anybody else experience this ? I've been trying to think of ways for us to get re-energized but so far I'm stumped..... Just taking a walk has become a mile stone, no pun intended. Any suggestions? By the way, are any of you involved with support groups? Anybody seeing a therapist ? Can those who have the SCS answer questions not addressed by the smiling people on the video? In our looking for RSD chat sites, we ran into an old conversation with ppl from this board. Any chance we can join ? Thanks for your support. Anne

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