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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.

Tuesday, January 11, 2011

Update

Thanks for the comments.  I forget to post as often as I had in the past, partly due to the fact that my wife is doing so well following her 5 day ketamine infusion.  I will do better in keeping people updated in our journey.  Yes, Allison is currently on a regimen of having a three consecutive day, 4 hour ketamine infusion of 60mg per hour, every other month.  Her pain levels are very low and she is almost off all pain medication with an exception of a vicodin here or there.  Keep in mind that she still needs to relax and not overdue herself, which is easy said than done since she has been limited for so much of her life in the past 13 plus years.  Her pain doesn't get any higher than a 4 and that is after a week of working.  She mostly hangs around the 1-2 range but is able to do just about anything without over doing it.  She knows her limits, which is good.  There is a possiblity that she will undergoe a second 5 day infusion within the nexy year too knock out the symptoms completely, depending on the recommendations of her doctor's.  The good thing to know is that a huge portion of her procedure was covered by insurance after going through the appeals process.  We even had enough money through our fundrasing efforts to make a donation the the Neurology Department at Drexel University for continuing there research to find a cure for RSD.  Good journey.  Keep the faith and know that there is hope.  I would recommend the short journey of the ketamine treatment, even though how mentally exhausting and terrifying it was compared to a lifetime of continuous agony and pain both you and your family members have to deal with emotionally for not being able to help your loved one with RSD and the physical pain they are experiencing everyday of their life.  If your wife is physically healthy regarding her heart and other organ function, I would totally go for it.  Feel free to write anytime and again, I will do my best to keep up on the blog.