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Wednesday, August 24, 2011

Update

First of all, sorry for not keeping followers of this site up to date more frequently that I have done.  I guess in part that is a good thing as my wife, Allison, is overall doing well.  There are still ups and downs despite the frequent infusions that she receives throughout the year.  Right now, she is on average completing a 3 consecutive day 4 hour infusion of 240mg of ketamine about 4-6 weeks apart.  Thank God insurance covers these costly visits!

The thing about the whole issue is that my wife does more than she should but who could blame her after not being able to do much of anything for the past 15 years of her life.  Since her 5 day inpatient procedure last June 2010, she has lived a new life but at times puts too much on her plate as she "feels good" and will do whatever she wants to do.  It finally catches up with her and begins feeling the "burn" thus needing infusion treatments.  She has yet to find a balance in her life and does not know her limits until she is in pain.

The most important thing to keep in mind is to do what makes you feel good and that is what she does.  If she needs to take a day off and rest, she does, if she needs to take vicodin, she does, if she feels like she can ride rollercoasters all day, she does.

Live life to the fullest and keep hope alive.  Keep fighting and don't give up hope because once that happens, the fight is lost and RSD will have won.

6 comments:

  1. Thanks for posting an update. We are so glad to hear Allison is doing so well. It is hard to find that line. Slow steady progress has been helpful to many recovering from RSD.

    We hope and pray she will continue to do well and one day will be free of the RSD. Keep going!

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  2. We are curious as to whether or not Allison is considering a second inpatient infusion or is she not at that point yet?

    We wish her continued healing!

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    1. Sorry for the huge delay in posting but to answer your question....yes...she is in treatment starting today for the week in NYC.

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  3. I've been on a frantic search for treatments other than those that have failed since my diagnosis with CRPS/RSD. I stumbled upon ketamine infusions and then was given a glimmer or hope after reading the possible results.
    That quicly came to an end after finding out the cost of the treatments without health insurance. So I'm asking how did you manage to organize your fundraisers for your treatments? I'm going to have to embark on the same thing as quickly as possible, before mine begins to spread more than it has. Right now its in both hands and arms to my shoulders, starting to go across my back. After Spine lower spine surgery that failed after a fall at work, the leaning and pressing and over usage of lifting and carrying caused my condition..my feet and lower legs and lower spine are starting to burn, and my feet have the reddness and sensitivity to touch. It hurts to stand and walk, but I have to. Please if you can help with how you started your fundraising for your treatment I would greatly appreciate it..I'm scared, desperate, and dont want to think this is how my life is going to be with such pain on a constant basis.
    thank you and God bless
    laura
    my email
    eelaura29@yahoo.com

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  4. i read, this story and it touched my heart.
    If you could, can you email me because i have some questions i'd like to ask you.
    Thankk youu.
    Kelsey Watson.
    my email:
    watsonrianne@gmail.com

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  5. Without insurance for this treatment, fundraising is nearly pointless. Each individual outpatient treatment in about $7000 and this is done for 3 consecutive days every 6-8 weeks. We were able to raise enough money for the inpatient treatment but outpatient treatment following the inpatient was still a necessary component of the treatment process. We did a silent auction by getting getting community donations to bid on along with a walk-a-thon where participants raised money on their own and submitted the funds on the day of the walk, which we organized and had insured. We also received lots of donations in the mail and on-line using facebook and word of mouth, emails to friends and family, etc.

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