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| | From:  SPJ1963 (Original Message) | Sent: 9/19/2008 6:58 PM |
hello, i'm totally new to this but i am really starting to loose my mind. i have been dealing with RSD or the effects of, for about a year now and i am only just now starting to realize the gravity of this disease. i am loosing my friends either because of my temper or because they just can't handle seeing me in this much pain. I have lost my life and now i'm loosing my mind. I can't remember one day to the next because of dealing with the pain, i don't sleep any more and i am almost constantly nauseated so i've lost about 40lbs since march. other then a gun or an incredible amount of pain killers does any one have any suggestions? |
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Hello SPJ, God know that all of us here have felt like you but believe me when I say that RSD is completely survivable. First I highly recomend what I had to do...get into a good group therapy session and see a counsoler, try to find one that knows about living with pain. I can tell you from my own experiance(9 years worth now) that the first couple of years are the hardest as you need to learn to live your life a little differently. Acceptance was the hardest for me but once I was able to do that my stress level and pain level dropped. I also lost friends, it frightens them,they dont understand and most likly never will. Ever heard it takes one to know one? You will find our group is a wonderful group and we all understand how you feel. With that said I welcome you to the group, I am the asst. manager that accepted you to the group today. Please do not be afraid to post what ever is on your mind, one of us will usually answer you...or possibly several of us :) Your not loosing your mind but I know it feels that way, I went thu hell for the first few years but I didnt get the help I needed right away either with the medical end or mental part of this nasty disease. Well, you came to the right place...at least its a good start to recogonize you cannot deal with this with out a support group of some kind Best wishes and welcome, Frank(Franknberrie) |
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| | | From: SPJ1963 | Sent: 9/23/2008 9:39 PM |
Thanks for your response Frank! My name is Shawn and i live in denver colorado. i will try to remember that i'm not alone in this but after a year of living alone and doing this there are times when..... i read some of the postings and i don't know how anyone can possibly do this for as long as some of your bloggers, i admire and envy them and yourself. i really don't think that i can live like this for 9 years but i'll take your advice and seek out a group. I am having a hard time recognizing the fact that i am going to have to do this for the rest of my life. i'm currently being sent to a new specialist, a vascular doctor so once again i am hoping and praying that he has "the cure". anyway, thank you again for your words. Shawn |
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Hi Shawn, The group I recomended is a great bunch of people and I know they would help you just as I want to help. Believe me when I say that I have felt exactly like you, its a grieving process similar to loosing a loved one, only you are the one who has lost so much. It does get easier, really! I know that you are very angry, I was so angry I thought some pretty terrible things, I actually went to a sporting goods store...but I walked out empty handed. Stress and anger makes the pain worse, that was a hard one for me personally to get over because the w/c system gave me hell! I would like to talk to you Shawn, either in person or on the phone. How about I send you an email to the address you signed up with? I want you in our Group in Denver, so does everyone else! Yes, I have talked with some of the members already, you have what it takes to belong...RSD! I hope you went to the web site I posted to you www.rmrsd.org Rocky Mountain RSD. We can help you with all kinds of things like finding a good Dr to comming to your house to visit you. We have meetings every month and this saturday evening we are havein the annual fund raiser at the Denver Country Club. All of the money we raise stayes here in the state and goes to research for RSD. So glad you found us here Shawn, lots of help and support here too. Frank (I live in Greeley) |
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| | | From: SPJ1963 | Sent: 9/24/2008 10:27 PM |
Hey Frank, your right about the stress and anger, once again i thought i was loosing it because it seemed that way to me but i am really not sure about anything any more. i swear at times it seems like this is all i talk about or all that others talk to me about and it just gets tiresome. you're also right about getting pissed off, i feel so sorry for my dog, he has to take the brunt of it and i so wish i could run into the doctor that did my surgeries! i will check out the site you gave me and try to find some help there. feel free to email me because i check that several times a day. thanks Frank |
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Shawn, Ya know Shawn, your dog has a 6th sense....he is probably the only one who know's how serious your illness is. Animals are kewl that way, he knows. I have a Kerry blue terrier, he goes with me everywhere and if I am laying on the couch watching TV he is right there at my feet. He knows when I am having a bad day not to jump in my lap, I dont have to tell him! He always wants to lick my burning hands, but he dosent know that it hurts to touch...he just does his doggie best to make me feel better. I gave him my x-wife's side of the bed, it helped me sleep believe it or not. Dogs are great therapy! Frank |
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I am so sorry to hear that you are having such a hard time. This condition affects my life in more ways than I ever imagined it would. I'm 18 and a freshman in college. I've been dealing with this horrible condition for ten years now. But even growing up with pain, you still never truly get used to it. I mean pain never stops hurting. I'm only just beginning to realize the devestating affects it is having in my life. Being at the dorm I really don't feel like I'm fitting in yet. Yesterday I had a eye-opening but somewhat painful conversation with someone who basically told me that the reason people aren't approaching me is because they think that all I ever talk about is my pain. I guess they don't know how to relate to me. I don't get it really. I mean first I didn't even tell anyone about my condition because I didn't want my RSD to define me. Then people started asking me questions, so I started telling them more about what it is like to have RSD. Now they think all I do is talk about my pain. I am so confused...I don't know how much of myself I should show. But the good thing is I can come on here and talk to people who truly understand what I am going through. I know I'm younger than most of the people on here, but I always love talking. |
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Hi there,,,, I know that alot of us feeling as you are rite now. Is not fun dealing with the issues of RSD. Not at all. sleeplessness I thinking is the worst for all of us. Is not ease. I know that the neausea n pain is all going together as well. ALL OF IT,,, even the meds. Not fun period. But weight loss is hardest on our ammune systems ,, much harder. I am going thru this as well. Make sure that what u do eat is healthy. I got so tired of eating soups n puddings that I felt like soup n pudding. Am still on steady deit of. I am constantly looking for any way possible too keep my mind busy n going since sleep is avading n not to be had. Finaly is coming too where I have sensations of nitemares. creepy ones at that I hate that part. Hate it with a passion. Makes one so angry that something can be such a horrid monster. I do suggest also finding anything heat or cool or someway of finding comfort in a position too relax in. Learn ways of relaxing. Is a biggg must. And a biggggg must for body too function n mind too stay functioning. I had become too state of near total shuttdown. That I refuse too let happen. So hoping that u r able too find ways to do this. Hoping that you try puddings yogart soups anything that is healthy puddings ice cream n yogart really helps with tummy upset in soothing. Tho neausea is there not stop. not fun. Not fun at all. Hoping is getting better. Huggzzzzzzz |
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| | | From: SPJ1963 | Sent: 10/1/2008 4:58 PM |
hey rat lover, i told this to frank earlier but i don't know how you've been able handle this for so long and i truly admire your strength! i've found that when people asked me that they never really wanted to know, at least not the ones that aren't around me all the time. i just found out 2 weeks ago that my neighbor's wife never knew just how bad or how often i am in pain and i've lived next door to them for 2 years now. all the times she has seen me she never knew i was in so much pain, or she just nevered cared all she is worried about is how life affects her, as with all of us in a way i believe. i hope that you find some true friends at college, people that care and i know they are out there. you know there is one thing i've found that actually helps with the pain that doesn't involve drugs, when i can afford it i see this lady here in Denver that does massage work. she basically works with the energy centers on the body and i actually come away from a session with her without any pain for 5 - 7 hours...seems small i know but it is truly remarkable!! to feel normal for just those few hours...... God how i miss it! if anyone wants her information let me know, she is a little expensive and she doesn't take insurance but it is well worth it in my eyes. anyway i hope it becomes easier for you in school!! Shawn |
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Hi, I think the memory loss is normal. I have both RSD, and am bipolar too! My doctor says the memory loss is normal, and the ECT, electro convulsive therapy adds to it. He also said with the ECT it takes about 2 years to get the memory back. The positive thing about memory loss is I can watch a movie over again! I see a psychotherapist who gave me a relaxation CD. Please don't hurt yourself. I'll be praying for you. Sylvia |
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| | | From: SPJ1963 | Sent: 10/3/2008 5:40 PM |
hi Sylvia, don't worry i can't , i have a hard enough time even lifting my arm on most days plus i still have something left inside me that thinks that there is still a chance. maybe it's just denial, who knows. forgive me for my first rants, there are just days where i can't take it any more, almost everyday but there are those that aren't as bad. Thank You Shawn |
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