[painman2009]

Ok so my liver function test comes up high, same as kidney. dr,s say that I need to be monitored now so this means alot of blood work and urine tests, they say that I cannot take any more drugs( I all good with that) but then say that they want to start me on an anti nausea script and a script to control my swelling. They all also say I must get my wedding ring off before I lose m finger and that I shouldnt wear it any more as the swelling will go up and down. I wear this ring all the time. it is a symbol i believe in. and when i look at it it helps be look over my life and it reminds me of how glad i am that i am married with four beautiful children. any way I went off course. So first they say no more extra drugs but then in the same breath they suggest two more.
I fear my kidney and liver failing.
ok another note... I hate My canes and walker but its a necessity. I hate that I cam no longer run. jump, skip, dance, climb. and stuff like that. but also the cane is always falling down. that said my wife is always knocking it down onto her legs and feet in which follows me being yelled at. even my daughter started in on it . there comment of how the canes and walker are a real inconvenience to them . and other stuff . basically what was said I understood that my injury is more painful for them then it is for me.. I already feel like crap because they have to paint the outside of the house. that they must maintain the gardens and lawn. as well as going in to the attic for storage, etc. . I do not take my pain killers unless there is nothing to be done that day that I may need to drive. but i take them at night.. I suffer the pain all the time I might be needed to drive. so evening is my only real time to take the pain killers . Im at a loss here. what can I do to make myself usefull to them. I feel like a burden. I am a burden thats why. they all start school in 6 days , and hopefully soon my wife will find a full time job. and while they are out I try to do all I can around the house(it isnt much) my mind is mush I feel like I am fading away as well.
I miss waking up and going to work, and I miss being active. my *** is becoming flat with all the time I am sitting or laying down. the pain also spreading inch by inch. taking away "me" . I have worked for thirty four years carving out the mold that is me. now I have to re-carve. but because I was already a form I have little to work with to remold. I ran out of thoughts. I had a train of thought but again it has derailed. oye

[LIT LOVE]

Have you tried the 4 F's diet yet? I had stomach issues (pain and random vomiting) until switching.

How about wearing the ring on a chain around your neck?

I would advise you to 1. See a therapist. 2. Then go to a marriage counselor or have sessions with a minister/priest/etc. if you're religious.

IMAGINE if your wife was in your shoes. Would you get annoyed with her for dropping her cane? Is she at all educated about RSD? Argh!

You may need to consider hiring an inexpensive handyman to take over some of your old "duties." IF your wife and kids are capable, then let them. And didn't you post previously she got upset with you for painting? (It is a bad idea. You can further injure yourself and/or jeapordize your benefits.)

They will need time to adjust (therapy will help...) BUT, you deserve respect and compassion.

Like me you need a reason to carry on to keep fighting, I feel totally useless my wife even has to open a packet of crisps for me. Stuck in this house knwoing that I'm ultra-hypersensitive, slightest knock can make it spread, slightest wound will never heal.
Theonly reason I have is fighting to make the Uk governemtn do something because we have at least 250,000 un/misdoagnosed sufferers, it's heartbreaking at times because no one over hear seems to care but it justs makes me more deteremined and when I go at least some people will know that I did everything a simple man could to help a quarter million people and thats worth struggling on for.
Perhaps you could do something similar in your area.

[alt1268]

I agree with your feelings. Some of despair some of greif. We all feel this way at some point in our disease process. It is what we do with it that will make a difference. Try and find a hobby that you can do.

Coming off your meds will be hard, but definitely for the best with Kidney and liver issues. Most medications effect the liver and some the kidneys, so it is my prayer for you that things clear up for you by coming off of these medications. In the meantime, there are medications that can bypass the liver and kidney and go right to the bloodstream. (ie patchs)

[Shewarrior]

First let me say that I have no advice on your health problems. Having said that, the mental aspects of being sick in a family, I can speak on. I know (boy do I know), the feeling of being a burden. My power chair is always in the way, but my husband has learned how to drive it out of the way. My RSD is in both legs, so there are days on end that I am laying down watching other people do MY housework. I do understand the feeling that you are not who you were, and it is so hard to stay positive. I wish your family was more supportive. Maybe they should seek therapy to deal with a disease that has no reason. And it wouldn't hurt for you too. I see a councelor to deal with the loss of my old life and it does help I promise. Nothing about this disease is easy, but there is life with it. Hope to hear from you again. Take care please. Gentle hugs
so my liver function test comes up high, same as kidney. dr,s say that I need to be monitored now so this means alot of blood work and urine tests, they say that I cannot take any more drugs( I all good with that) but then say that they want to start me on an anti nausea script and a script to control my swelling. They all also say I must get my wedding ring off before I lose m finger and that I shouldnt wear it any more as the swelling will go up and down. I wear this ring all the time. it is a symbol i believe in. and when i look at it it helps be look over my life and it reminds me of how glad i am that i am married with four beautiful children. any way I went off course. So first they say no more extra drugs but then in the same breath they suggest two more.
I fear my kidney and liver failing.
ok another note... I hate My canes and walker but its a necessity. I hate that I cam no longer run. jump, skip, dance, climb. and stuff like that. but also the cane is always falling down. that said my wife is always knocking it down onto her legs and feet in which follows me being yelled at. even my daughter started in on it . there comment of how the canes and walker are a real inconvenience to them . and other stuff . basically what was said I understood that my injury is more painful for them then it is for me.. I already feel like crap because they have to paint the outside of the house. that they must maintain the gardens and lawn. as well as going in to the attic for storage, etc. . I do not take my pain killers unless there is nothing to be done that day that I may need to drive. but i take them at night.. I suffer the pain all the time I might be needed to drive. so evening is my only real time to take the pain killers . Im at a loss here. what can I do to make myself usefull to them. I feel like a burden. I am a burden thats why. they all start school in 6 days , and hopefully soon my wife will find a full time job. and while they are out I try to do all I can around the house(it isnt much) my mind is mush I feel like I am fading away as well.
I miss waking up and going to work, and I miss being active. my *** is becoming flat with all the time I am sitting or laying down. the pain also spreading inch by inch. taking away "me" . I have worked for thirty four years carving out the mold that is me. now I have to re-carve. but because I was already a form I have little to work with to remold. I ran out of thoughts. I had a train of thought but again it has derailed. oye[/QUOTE]

[Shewarrior]

I just had to get off all my oral meds when I got my pain pump 2 mos. Ago. It was not easy, and I did it cuz I was afraid of what you speak about. Have you considered a pain pump to get the meds out of your gut? My head is clear for the first time in years. Can't do anything about the flat ***. lol

Originally Posted by painman2009

Ok so my liver function test comes up high, same as kidney. dr,s say that I need to be monitored now so this means alot of blood work and urine tests, they say that I cannot take any more drugs( I all good with that) but then say that they want to start me on an anti nausea script and a script to control my swelling. They all also say I must get my wedding ring off before I lose m finger and that I shouldnt wear it any more as the swelling will go up and down. I wear this ring all the time. it is a symbol i believe in. and when i look at it it helps be look over my life and it reminds me of how glad i am that i am married with four beautiful children. any way I went off course. So first they say no more extra drugs but then in the same breath they suggest two more.
I fear my kidney and liver failing.
ok another note... I hate My canes and walker but its a necessity. I hate that I cam no longer run. jump, skip, dance, climb. and stuff like that. but also the cane is always falling down. that said my wife is always knocking it down onto her legs and feet in which follows me being yelled at. even my daughter started in on it . there comment of how the canes and walker are a real inconvenience to them . and other stuff . basically what was said I understood that my injury is more painful for them then it is for me.. I already feel like crap because they have to paint the outside of the house. that they must maintain the gardens and lawn. as well as going in to the attic for storage, etc. . I do not take my pain killers unless there is nothing to be done that day that I may need to drive. but i take them at night.. I suffer the pain all the time I might be needed to drive. so evening is my only real time to take the pain killers . Im at a loss here. what can I do to make myself usefull to them. I feel like a burden. I am a burden thats why. they all start school in 6 days , and hopefully soon my wife will find a full time job. and while they are out I try to do all I can around the house(it isnt much) my mind is mush I feel like I am fading away as well.
I miss waking up and going to work, and I miss being active. my *** is becoming flat with all the time I am sitting or laying down. the pain also spreading inch by inch. taking away "me" . I have worked for thirty four years carving out the mold that is me. now I have to re-carve. but because I was already a form I have little to work with to remold. I ran out of thoughts. I had a train of thought but again it has derailed. oye

[painman2009]

Originally Posted by LIT LOVE

Have you tried the 4 F's diet yet? I had stomach issues (pain and random vomiting) until switching.

How about wearing the ring on a chain around your neck?

I would advise you to 1. See a therapist. 2. Then go to a marriage counselor or have sessions with a minister/priest/etc. if you're religious.

IMAGINE if your wife was in your shoes. Would you get annoyed with her for dropping her cane? Is she at all educated about RSD? Argh!

You may need to consider hiring an inexpensive handyman to take over some of your old "duties." IF your wife and kids are capable, then let them. And didn't you post previously she got upset with you for painting? (It is a bad idea. You can further injure yourself and/or jeapordize your benefits.)

They will need time to adjust (therapy will help...) BUT, you deserve respect and compassion.

yes I did. she is affraid comp will take a picture and we will lose everything. As far as their education on RSD. she has never read anything regarding it. .. I have seen a therapist. and said I am not mentally unhealthy and see,s nothing he can offer.. ha!! as for my diet.. I eat small meals. breakfast an egg or a bowl of cereal(if i remember to eat it at all) lunch, lately it is simple sandwich and fruit. trying to get rid of cold cuts all together so its tuna or PB&J. dinner it is either pasta(small amount) and a fruit a little later or white meat such as pork or chicken with a generous green like salads, spinach green beens, and I snack on nuts fruits etc. with a serving of a no.no when its in the house.
this was a mental leak. I needed to get this down so I could see it and I wanted to share and figured this is the best place to do so.. thank you all for your input I appreciate the responses and connection.
I cannot seem to open up like this really face to face. I spend most of my energy trying to hide the pain . because when it shows every one gets.. well different and uncomfortable. which I of course immediatly pick up on.
Lit love... I am a religious person just really different from others. I dont believe their is a religion that best fits my beliefs. I thank each of you here very much you have all helped me keep it real and together. This forum is the best medicine . with out it I would probably curl up in a corner and disappear.
I try not to let the mind leak but it happens and when it does it comes out as it pops into my head(before I car sort it out and make sense of it) I believe it is time to find a therapist that will actually listen. the stress is piling up, the worry of tomorrow as well I can see that after reading this again and reading your responses. I just hope and pray that my wife is on board.. thanks again all . and I hope you all find tomorrow less painful and your cup overflowing with love and joy..

[tkayewade]

Wow painman, you could be telling my story except I'm a girl.i feel like I have completely lost who I am due to this monster of a disease. I can't be fit, I can't do things I used to do.my bones are like glass. One false turn and they break. I have an scs that we are still tweaking which helps somewhat, but I just want to go outside and scream sometimes at the top of my lungs. The I start why me and asking what I did to deserve it? Who did I **** off? Anyway, I wish I could help and give you some magic potion to make you feel better, but I just wanted you to know you weren't alone and even though it might sound bad, I felt a kindredness with what you were saying cause I felt it all too!!maybe we coud chat or email or whatever. Anyway, I don't have any sage advice, but I completely and totally understand!!

TK