I'm waiting to get into the Kaiser Pain Clinic, but the last few weeks have been extremely hard. My RSDS has been cycling up to difficult levels. I'm on 900 mg of Neurontin a day, Soma, and Tylenol 3's. I finally had to take a marijuana tincture to lower the pain enough to get out of bed today.
The physical relationship I had with my wife of nearly 30 years is gone. Despite what people say about emotional closeness, the loss of physical intimacy is like a blow to the head.
Getting into my garden is pleasant...but I can't pretend to work in it. I just stand and gaze at the zucchini and wonder how I'm going to cook another one.
And today, those dark thoughts came in force. Isn't it better to stop hurting after all these years? the voice said. So I called a female friend and literally cried on her shoulder. She told me to hang on. Just one more day. And she helped me out to the garden to pick more zucchini.
God I'm tired.
My MD won't RX anything stronger than what I have...she waiting for a pain expert to do that.
Until then, maybe the zucchini will chase away the voice.
I hope so.
The physical relationship I had with my wife of nearly 30 years is gone. Despite what people say about emotional closeness, the loss of physical intimacy is like a blow to the head.
Getting into my garden is pleasant...but I can't pretend to work in it. I just stand and gaze at the zucchini and wonder how I'm going to cook another one.
And today, those dark thoughts came in force. Isn't it better to stop hurting after all these years? the voice said. So I called a female friend and literally cried on her shoulder. She told me to hang on. Just one more day. And she helped me out to the garden to pick more zucchini.
God I'm tired.
My MD won't RX anything stronger than what I have...she waiting for a pain expert to do that.
Until then, maybe the zucchini will chase away the voice.
I hope so.
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Re: Tough Several Weeks
Wed, September 5, 2007 - 9:30 PMI totally get that.
When I want to die, it is not that I want to die, but that I want to change a situation.
Is there any possibility that there is a sitiuation that you feel you cannot change, andwant to escape? (Other than the obvious one).
I am asking because empaths have a high incidence of carrying the weight of the world on their shoulders, and the weight is heavy now.
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Re: Tough Several Weeks
Thu, September 6, 2007 - 11:57 PMMy heart goes out to you. I have been there I think. At those times I wanted only that the pain end and killing myself often seemed like the only thing that would work. The ice or heat packs and drugs were not doing it. I do not know why I did not hang myself. How I withstood it I honestly cannot tell you. I did. That is all. I did endure. Not by strength of will or personal strength of any kind. I am not that tough. But I did endure those horrible periods because I had no choice. It was forced upon me and I had no choice but to take. No medals for me. I am no hero. I had no choice.The pain was there with me and there was nothing I could do about it. And even one half hour of that bad pain would exhaust me completely.And I lay there until the pain faded a bit.The rest helped I guess or the extra drugs kicked in.....good luck to you..Please read my posts about IMS therapy and go to www.istop.org. if it feels right.....that's all..best wishes...john woodward -
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Re: Tough Several Weeks
Fri, September 7, 2007 - 1:00 AMmaybe you can find some music you love and turn it up loud - so loud that you can't hear the voices whispering from your saddest places.
it hurts to live... to simply be alive can be physical agony. i know. but by choosing to live and breath and just get out of bed, we can say fuck this pain, because i am MORE than just pain. i don't know how it feels for you chuck, but i do know how much it hurts and i know how pervasive it can be, but we are still more than just pain. we are strength and perseverence. we are our memories and our hopes. we can get beyond this pain because we have to. we can take it because we are warriors now.
wishing you strength and peace within. -
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Re: Tough Several Weeks
Fri, September 7, 2007 - 3:05 PMWell said!! And I will second that..!! Hey Zanne let's go out for lunch. Where and when should I meet you? It is ok to bring your dog. see ya.
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Re: Tough Several Weeks
Fri, September 7, 2007 - 3:51 PMI live for days I can stabilize the pain...like today. I'm playing Enya and Lorenna McKennit...letting my brain float away for a few minutes at a time. I'm using some of my herbal salves to dull the nerve endings a bit. And I would dearly love a drink, but as a diabetic, I limit myself to my birthday, New Years, and my anniversary. Three drinks a year and they gotta be GOOD!
My wife wants to cuddle me tonight...as that is now our form of love making...and I'm willing and ready.
Soon, soon, I'll be in the pain clinic.
Thanks for all your voices of hope. Better than the other voices.
C.
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Re: Tough Several Weeks
Fri, September 7, 2007 - 4:02 PMTwo questions please. Why will doc not give better pain medication and why do you not get a new doc? Thanks. I am very grateful to have Oxycodone. With it I could have a life and function well enough to keep seeking the cause of my pain and the solution(if there was one) to that cause. In November 2006 I hit a bottom.There was a bad snow storm here and my MD could not get to his office. I ran out of painkillers and muscle relaxants. MY body reacted very profoundly to this sudden cut off. I stopped doing anything. I don't know why. The MD's said I was depressed. It was the low point of a long slow(5 years of doing the best I could) decline. I stopped eating and washing and drinking(any liquid) and talking(why-I do not know). I spent 5 days alone in my apartment picking bugs off the carpet even though I knew there were no bugs just bits of fabric. I knew something was wrong but could do nothing about it. I was horribly cold but only wore jeans and an old raggy,stained long sleeved t-shirt. I knew what was going to happen ie my sister would come over and see me and I would be taken to the hospital> I knew this but could do nothing but wander the apartment and stare at the walls and then pick more non existent bugs off the floor. If the phone rang I ignored it. Friends left messages but I would just stare at the machine for an hour or two.Time seemed to stop or fly by. I would look at my watch at say 2 oclock and then when I looked again it would be 5 oclock and I was still in the same position shivering and I had no sense of the passing of three hours-it seemed like a few seconds. On day 4 or 5 of this the phone rang again and I did pick it up but said nothing. It was my sister,Kathy. She asked if I was there,was I ok,why had I not answered her messages. I said nothing. She said she was coming over. I hung up. It seemed like only a second and I heard her car. I did let her in. She looked at me and started crying and called 911. When the medics arrived I fought with them but I was very weak and no match for two healthy younger trained guys and I was 40 pounds lighter than my normal 175 pounds. I was admitted immediately and placed on IV drip for dehydration and imbalanced electrolytes. I spent 4 days in emergency intensive care and then,as the diagnosis was depression due to pain I was transferred to the psych ward as an involuntary patient(involuntary meant I could not leave or refuse treatment,I was basically incarcerated and that was a shock. I started to get really pissed off at having my freedom taken from me.) I was given oxycodone for pain,olanzipine for spasm,an antidepressant and a heavy tranquilizer. It was all ok because with this combination of drugs I was not in pain..thank christ for that. I did not talk for the first 5 days except to tell the pretty, curvacious occupational therapist to fuck off and stop bothering me about going to group discussions and art therapy and so on..She was good looking and cheerful and she really pissed me off with all her questions about what I liked to do and which groups I would like to attend. I was very run down and exhausted(I could not take care of myself properly and had lost more than 25% of my body weight-muscle- I looked bad and skinny) but all I wanted from her was the sound of her moaning as I fucked her. This was a very strange time for me BUT I was getting examined by doctors and observed by nurses and I was getting pain relief and I had company( I shared a room with 4 other men-2 of whom were also named John) and I did not have to do anything except eat,take pills and sleep. I started to like it there and after a week of phone calls to friends to get me the hell out of there I started to relax and like having no responsibilities.I didn't even have to wash myself or shave if I didn't want to. And the drugs kept coming on a regular schedule and were free--hallelujah!!..The nurses kept reporting I was limping and seemed to be in serious pain and thank god or whomever or what ever the doctor given me believed me when I nodded 'yes'(still not talking) to his question-"Are you in pain?" "Is the pain bad?". I would nod for 'yes'. That doctor told me I would be given whatever dose I needed to assure that I was not in pain...BLESS the MAN!!!BLESS THE MAN--music to my ears. I began to hope again.....more to come if anyone wants to read it..thank you for reading this and bless you and may guidance be given you to find relief and peace....god bless you...buddha bless you ..I bless you all-my brothers and sisters in pain..bless you ,bless you,bless you...I have come a long way from the shaking skinny pale mess picking bugs off the floor and I am now going out into the afternoon sun for a bike ride and some girl watching----enjoy!!! and carpe diem...later. -
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Re: Tough Several Weeks
Fri, September 7, 2007 - 6:33 PMich,
we can meet up on the moon if you want - we can float around and not feel pain and share oxycodone cocktails - I'll bring my dog for sure, but we should invite everyone else, because I reckon some anti-gravity lounging will do us all some good.
chuck, dave, all you "lurkers," shall we party on the moon this weekend? we can float around and bitch about people who moan about taking advil for their "sore" backs and rag on the medical system for being impossible and infuriating. when that gets old, we can just let all of our cares, our frustrations, our anxieties, and our goddamn fucking pain float off into space where it cannot weigh us down. we are weightless now, we cannot feel it anymore.
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Re: Tough Several Weeks
Fri, September 7, 2007 - 6:34 PMMy new MD knows little about RSDS or about me. She's young and somewhat uncertain. Also, like many doctors she's afraid (IMHO) of the DEA. There's a crack down here in N. California on doctors who rx or over rx pain medication for cases other than cancer etc.
I could go through the process of getting a new doctor, but I have Kaiser HMO. Fellow physicians hate to counter-guess their colleagues.
And lastly, I will be going into the Pain Clinic soon...so the mindset at Kaiser is "The pain will kill him." This is not doubt true in the short run.
In the long run it will be my own hand that kills me.
I think she has convinced herself that carefully application of the meds she has given me should be enough.
I don't have the money to go outside my HMO.
Only the Pain Clinic has the specialists that might rx me meds that will break the pain cycle and then give me protocols to help me prevent another flare up.
So it goes.
Occasionally I receive some oxycodone from friendly sources. Without friends life isn't worth living at times. -
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Re: Tough Several Weeks
Tue, September 11, 2007 - 10:19 PMZanne;lunch on the moon sounds fabulous. i want to bring my bike and ride around screaming-I like screaming and cursing while riding a bicycle-call me crazy!! and I want to eat flan and then float around admiring the view--what a great idea....the moon for sure........NEWS>>>my condition is much improved in only 5 weeks and 6 sessions of IMS (www.istop.org). MY physio is very surprised and I am astonished. My pain ordeal of 6 years was very serious;I lost my commercial drivers license as could not pass physical,I was declared 'disabled' by my GP and have sticker in car and legal and tax status as a disabled person, was hospitalised for 2 and half months with pain induced depression and exhaustion- I was only 138 pounds,down from 175-I was almost dead only 10 months ago. PAIN almost killed me!!!!!!!!! And now I am spending many hours per day riding and tuning up one or more of my 6 bicycles AND my OXY intake is down(in only 5 weeks) from 80 mg per day to 40 and next week will try to go to 30mg..Sweet fucking jesus this is great. I am having fun again--even getting horny--say what!!!!!----- I kept trying to solve this and'fingers crossed it looks like--- -SO FOLKS please keep trying;maybe a better solution is just around the corner.????.keep on keeping on and I truly hope you find an answer to your pain problems. I think it is possible one way or the other. And Zanne see you tonight on the moon-everbody welcome coooool!!!.........sweet dreams..ich.
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