firewatcher Posted February 13, 2011 Report Share Posted February 13, 2011 From Wikipedia:"A phantom limb is the sensation that an amputated or missing limb (even an organ, like the appendix) is still attached to the body and is moving appropriately with other body parts. Approximately 60 to 80% of individuals with an amputation experience phantom sensations in their amputated limb, and the majority of the sensations are painful. Phantom sensations may also occur after the removal of body parts other than the limbs, e.g. after amputation of the breast, extraction of a tooth (phantom tooth pain) or removal of an eye (phantom eye syndrome). The missing limb often feels shorter and may feel as if it is in a distorted and painful position. Occasionally, the pain can be made worse by stress, anxiety, and weather changes..."I am feeling phantom limb/life pains. Not that my limb/life worked all that great before, but that last 6 years have definitely stunk. I can remember what it felt like to live my previous life, my body remembers what it used to feel like. But when I try to live that way, I can't do it, it hurts! I watch my friends and remember what is what like to be upright and adequately functional. I remember what it was like to exercise and not have four days of pain to pay for it. I remember going to the doctor once or twice a year for colds or sinus infections, not all these specialists who look at me like I'm trying to pull a fast one. I have friends (who get it) who ask me how I do it, to go on like I do. I think, you don't actually SEE what I DO to get by or how little I do. I appear normal, because I don't let them see me suffer. I take more medication than my 90 year old grandmother just to stay upright and keep my HR down and not urinate every last drop of fluid from my body. People take bathrooms for granted. I know where every one in my town is and exactly when I'm going to have to find one. I'd like to do normal things with my kids. I'd like to do normal things with my husband. I'd like to plan my schedule around fun things instead of doctors' appointments and windows of polyuria. I hate having one wonky test done by a doctor who listens which leads to a referral to a doctor who won't listen or test for anything. I'm tired of hearing "well that's not normal, but it must be normal for you." I'm tired of being tired.My life has been amputated, but I can still feel it. Quote Link to comment Share on other sites More sharing options...
lieze Posted February 13, 2011 Report Share Posted February 13, 2011 I remember very well too what it was like to be able to go all day.To do wacky things like go to the grocery at 9-10 pm at night.I work (not) in a nursing home.I feel like I should be a patient rather than a worker.I am so thankful that I had 42 years of being fully functional.I want more though.I feel too young to be going through this and to carry this fear of death with me every where I go.I should be licking ice cream cones with my 4 and 6 year old at the zoo.I didn't get to do that with them and I feel robbed.I'm very sorry that you've been dealing with this as long as you have.I don't blame you one bit for wanting your life back!Praying for a miracle for all of us.I'm sorry you are hurting. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted February 13, 2011 Report Share Posted February 13, 2011 Oh, I can well commiserate(?) with you! Just today as my husband and I drove down our country driveway, I told him how I miss my evening walks with my music. I miss socializing--I am too nervous about room temperature, comfortable chair, trying to appear normal when I feel like passing out. I miss just picking up and going. And, living in a small community, I feel like people are thinking the worst of me, like I'm a drunk, or severely depressed, or something similar that keeps me from being out and about at social functions. To tell you the truth, I may have thought that about someone in the past if I hadn't seen them out in public in a looong time! People don't know I am just still myself, but with odd health issues, who has to sit at home due to b/p, temperature control, and too much adrenaline. It's hard when you look normal. Believe me, when I hear someone say something about someone now, about how unfriendly, odd, etc., I speak up and say that they might have an issue that none of us can understand. I am clear with my kids to not judge someone for what they don't know about(of course, if someone is just being mean or obnoxious, they can have their opinions!).I feel patronized when I go to the doctors, like I'm getting a pat on the head, like "poor you". I really do not want sympathy from doctors, I want action. I feel they think I'm an unfixable, chronic patient. But, for some reason, I DON'T! I feel like I have something fixable and they just won't think! I want to scream(in theory) at the medical community to quit trying to put me into a diagnosis, and go back to the drawing board. If I can't stand up due to low blood volume, then review all the reasons someone might have chronic low blood volume AND TEST FOR THOSE REASONS. I get NO in-depth testing. POTS isn't driving me insane--the medical community is. Okay, you just brought the RANT out in me tonight, but I guess we need to vent occasionally. Quote Link to comment Share on other sites More sharing options...
Tommyhoney Posted February 13, 2011 Report Share Posted February 13, 2011 Gentle hugs for you, Firewatcher. Re: "My life has been amputated, but I can still feel it."- Very aptly put. Hope you're able to work through this (for now) very quickly, and peacefully. Quote Link to comment Share on other sites More sharing options...
Sarah4444 Posted February 13, 2011 Report Share Posted February 13, 2011 Well THAT made me cry.Best wishes,Another "Life Amputee" Quote Link to comment Share on other sites More sharing options...
juliegee Posted February 13, 2011 Report Share Posted February 13, 2011 Jennifer-You know I love you & hurt for you- that was so poignant & beautifully written. I don't have phantom pains for the life I was supposed to lead. At times, I think I am so unlucky that THIS is the life I was supposed to lead. Does that make sense? There is NO alternate life in my head. I've either made it to the acceptance stage or I'm severely depressed I hope it's the first one...Your beautifully written post gives me an idea. I'm going to PM you. Gentle Hugs-Julie Quote Link to comment Share on other sites More sharing options...
janiedelite Posted February 14, 2011 Report Share Posted February 14, 2011 You did such a great job describing how I feel, especially when I push myself to do as much as possible only to realize my limitations. I think it's okay to look back and grieve. Thank you for expressing how many of us feel right now. Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted February 14, 2011 Report Share Posted February 14, 2011 These feelings of loss are all part of the grieving process......it's a good thing, don't fight them off. I'm with Julie....I mean the acceptance part My favorate saying is, there are so many more worse off than me. I'm good here in reclinerville I really hope everyone finds their happy place. Quote Link to comment Share on other sites More sharing options...
sugartwin Posted February 15, 2011 Report Share Posted February 15, 2011 I feel this way every single day. Quote Link to comment Share on other sites More sharing options...
Noreen Posted February 16, 2011 Report Share Posted February 16, 2011 I yearn for the days when vertically challenged meant I was short as opposed to taking up advanced studies in horizontal living. Quote Link to comment Share on other sites More sharing options...
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