NeuroTalk Support Groups - so asking what i can do to make life more liveable

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NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - so asking what i can do to make life more liveable (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/143881-life-liveable.html)

finz	01-30-2011 01:24 AM

gramE, I just have to say........awesome way of expressing it. This is a signature worthy quote.....

This is the kind of trial that can make you bitter or better, and better is a much better choice

CarlaDanDan

01-30-2011 11:11 AM

Thank you for your post

Quote:

Originally Posted by nevadabound (Post 739172)

Thank You Lori, guess i was just frustrated and wondering what others do when there spouse is in such pain, but its true laugh together find the fun in things and we do just that , and i know some days are dimonds and some are coal and we do take the good days with the not, , your husband sounds like mine does try to help even with his pain and , and bravo to you both, maybe i should take my post off of here now i :p i got it reality put me back into my palce, theres no magic solution just us together being happy as you can toether and lori i give you points for saying outloud no sex hubby cant with meds and pain and it isnt any fun being in pain how can it be im understandable of that :hug: keep smiling .

I met my partner in a dating for disabled website few years ago. Its been a long road, full of love and mutal learning. And i believe this will be a work in progress untill our lives end... we are a very young couple, he is kidney transplanted, has cataract and corneal erosion on both eyes. i have neuropathy,RSD, all the side effects and emotional issues that comes with our condition. He deals better than me with his health but today we respect each other and never underestimate each others health. Theres no worse or better, we all have our weakness, and healthwise theres no place to comparisons. we sum our strenghts and share to make our life a happy one as much as possible. Dividing tasks, taking care of each other in what is needed, finding a different ways to have a pleasurable intimate life, having a good laugh, wipe the tears on those bad days and having our own space... all this together help to manage stress. Argues are rare nowdays, sturboness never win, we have to find a point of mutation, where we can agree. One like red, and other blue, that has to be fine. Diversity and differences can make life more interesting and richer, when we leave the heart talk and put the ego to sleep. I try to find a point to replace boredom, frustation with understanding, gratitude and excitement in little things in our life together.
Its not simple to be a disabled person and a carer of our loved ones, but inconditional love guide us. Patience, creativeness, willing to support and respect. And fundamentally having knowledge about the other condition; theres no need to be an expert, just knowing what is, symptoms can explain a lot and bring us confidence.
I hope you and your loved one find your way. Yes life can be more liveable, believe me
lots of love
Carla

keep smilin

01-30-2011 12:58 PM

Hello everyone...

Quote:

Originally Posted by CarlaDanDan (Post 739885)

It's what is in your heart that will get you thru..That love runs deeper than no other and no matter the depth of our pain, the type of day we are having or what ever tomorrow brings..if you rely on the simple heartfelt love..You will make it..oh yes, and with the complications of RSD and life ..we all need to have something solid to lean on.. a sure bet! Bless you all..find the peace in your hearts.. and stay strong, as we all need that.. Thank you for all of your kind words!!

Hugz, Kathy:grouphug:

nevadabound

01-30-2011 02:25 PM

your a blessing

Quote:

Originally Posted by lorigood243 (Post 739449)

The girl had RSD. her name is Andrea, she sometimes comes to this website.
I have internal RSD caused by being cut during surgery for the gallbladder. then 2 years later after countless doctors and getting sicker...a plastic surgeon thought it might help if they cut off all the swollen tissue on my abdomen...its gross..they cut me hip to hip, removing 25lbs of tissue. he tried to do this horrible operation as an outpatient!! everytime i tried to stand up blood leaked everywhere...so they finally decided to keep me...later that day when they put me in a room, i tried to stand up and get to the bathroom with the help of 2 nurses...then i passed out and went code blue, i died , then they brought me back. if i would have went home, i wouldnt be here now. i spent 1 week in the hospital recovering. after that surgery, i became diabetic, high blood pressure, my period stopped, i got horrible acid reflux, SO much went wrong in my body from all those nerves being cut on me side to side....it was devestating. I just found out 6 months ago that i had RSD after seeing Tyra...if she didnt have Andrea on that day, i still wouldnt know what i had.
I hope some day that there are more TV programs that discuss this illness, so many more people have it that are undiagnosed!
we just have to make the best of each day.
Hugs
Lori

Hi Lori your a blessing to be here today after all that and code blue your supose to be here on this earth , to show what strength is - kindness-and caring to others.:)

nevadabound

01-30-2011 02:46 PM

Hi Daniella

Quote:

Originally Posted by daniella (Post 739368)

Hi you are a very kind spouse to look into this. I am not married but with my mom who is the closest person to me it has been a long road of trying to find what works and does not. It changes as well. First I feel for you that you need to take care of yourself. You can't be there for your wife if you are in a bad mental or physical place. When I first got dx my mom I would sya for 6 months life stopped for her. She barely did anything but cry from me crying in pain. She reasearched for hours and hours. Anyhow as time as went on and she has begun going with friends,take a hobby class what ever I think she copes with me better. So I encourage you to do the same.
Now what helps me is for people to check in with me and say how are you even? To not judge or tell me what to do with my rsd. I think suggesting for ex to see a doctor or go for a treatment is fine. I have a family member though who tells me cause I don't do X is why I am not better etc and that really aggrevates me, Try to have things you can do together that is not health focused. If it is going for a drive even together. I remember after so many months in bed with this at the start I was at my moms and we watched a comedy show. I laughed for the first time in months. It lifted both of our spirits. This takes such a mental toll that even 5 minutes of a break can really help. To me so much is a build up of this. Ok sorry to write a novel. You both are in my thoughts

Hi Daniella, thank you for your novel i enjoyed it all-:) im the wife whos on here and asking what can i do to help hubby with rsd, im selected with myasthenia gravis 37 yrs im doing pretty good and hes been taking care of me for 27 yrs of our marriage so its my turn to help him the best i can, and him being a man feel useless not beable to use his left hand-arm, but now im his left arm and happy to be here to help the best i can, this is just a down right hard disease rsd is , you keep on laughing Daniella, and i see on hubby what a mental toll rsd take on a person, i try to speak potivite with hubby thinking that mighht help but untill we are in someones else shoes that may not even help at times..but i shall keep smiling as well..

nevadabound

01-30-2011 02:57 PM

HI CarlaDanDan

Quote:

Originally Posted by CarlaDanDan (Post 739885)

EXCELLENT!!!!!

i acutally feel foolish submitting that post now, it was just a day now it passed or maybe its from reading all these great post , and yes sturboness never wins , very true... i very much enjoyed your post, you are a kind caring person and with a great positve attitude which i have most everyday that day i posted must of been one of the Not so days. but im on track now.. thank you .

CarlaDanDan

01-30-2011 03:43 PM

Quote:

Originally Posted by nevadabound (Post 739941)

Linda
im delighted to here that you are on track now! We all have those lousy days when its difficult (almost impossible) stay positive
Its never a foolish thing write in here, I found loads of support here too. From time to time i've read few posts wrote by me/and others. Re-reading to "re-charge my batteries":D we are on the same boat at end of the day.
Thank you for your friendship.
lots of love

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