Friday, March 1, 2013

Friday is here already....

And like most people I am wondering what happened to January and February, was looking back on photo of the day and the photos are there, so I must have been alive all those days, though most of them are a blur....

Photo's of the day are pretty boring, yesterdays was "UPSIDE DOWN" - yip real thrilling an upside down flower.....
and todays theme is "L IS FOR ...) 
Yip Miss Chico and I did L is for LAZY...... god knows why she sleeps in this bloody hot basket in this heat, her and biscuit seem to love it but it is not big enough to share so first in first served.....

I have finally got myself into a good routine in the day now, I am back doing my mirror imagery and pain mediations, as well as getting back into the exercycle and even doing some ab crunches on the Ab King Pro, my sister gave me...... as well as doing all my studies, now lets just hope this routine stays :)

Today I got questioned by a person about the meds I am on and why so many.... when people ask I do not hide what I have and when people ask about my meds and I say I am like on 40 plus meds a day they freak.... why am I on this many, because there is no cure for CRPS, and I am not ever going to go into remission, you never do when you have had it for nearly 5 years... I have a choice, I can live in pain all my life and be in and out of hospital, or worse still I could be dead, there is a high suicide rate associated with CRPS... I have the meds so I can have some life, long term yes there are many side effects but I try not to think about that. The meds is not going to slow this illness down, there are no meds for that, what the meds are doing is helping me to have some time in the day relatively pain free, there is never a moment when I am not in pain... for now until a cure is discovered the meds are there for my survival and holding me together. Out of all the meds we have trialled I am having the most success with methadone, because the CRPS is progressing we are now going to be upping the methadone to see if that helps..... I know I can not keep upping this med every 6 months and wonder what will happen when the highest dosage is done - then what - pray and hope the miracle cure has happened :)

Oh there is one alternative, I can go to Mexico where they can place me in a ketamine coma for a week or so, and hope when I wake up that my brain is rewired that is a 50% success rate, and cost approx $200,000 if it all goes well, I know of one case where this lady ended up in hospital for 3 years there as it did not go well for her at the beginning, now she is doing so much better and it saved her life as her body was shutting down. This is not funded by anybody at this stage and is still very much in the trial period.... 1 New Zealander has done it, and though she is a long way from what we call "normal" she can now do more things than what she ever could before the treatment.... if I won lotto, I would seriously consider it. 

Have a great weekend all :)


2 comments:

  1. Wow that is one tough treatment and so expensive without any guarantees.

    I can imagine that anyone suffering CPRS would try anything reasonable. It's people with the courage to gie things a go that pave the way for more successful treatment. Right now I can't imagine anything worse than what you are dealing with. You do well to manage as much as you do.

    Blessings

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  2. I am so impressed with how well you do cope and have such a great attitude. I cannot imagine being in constant pain and having to rely on such a huge amount of very strong drugs just to get through the day.

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