Hi Guys!

Well, booster week has officially past and I have seen great improvement!  I really appreciate all of your prayers. 

Mom and I traveled down to Philly Monday morning for my first set of boosters since returning from Mexico.  I was excited to see Dr. Schwartzman and for him to see the ‘new me’; line free and with a closed trach site.  For over a year now he has been telling me, and I quote, “We need to get all these reminders out of you.”  I think one thing I have learned about Dr. S is his intense desire to get his patients back into a completely normal life.  He just will not settle for anything less than that.  And that right there is what makes him such a great doctor.  Some doctors, especially for RSD, are okay with the fact that they have seen SOME improvement.  For Dr S, just “better than I was” is just not good enough.   I think as far as he is concerned, I have to have three big things happen,

1.  hopefully get to the point of being pain free.  2. Get back in school and eventually a career, and 3. Get married (possibly a few more things added in there as well.)  That is one thing I definitely love about Dr. S, he wants me to get to the point that everything about RSD becomes something of the past.  Something that is a distant memory.  Dr. S was thrilled to not only see my progress, the trach site, and the line removal, but even the muscle I have built and the state of my RSD- which is being controlled!!!

Since getting my line out and having the EX-trach site fixed, I cannot tell you how much it has helped me mentally.  Long ago Dr. Schwartzman understood the need for me to get all of the “reminders”, as he calls them, all out and fixed respectively; actually even more so than I did.  Though I certainly did view it as helpful and necessary, I drastically underestimated the significant difference it would truly make for me in day-to-day life. I have to tell you, it has helped me move on with my life in a way that I was not sure would ever be possible.  Since the trach repair surgery, it is almost like my brain is finally realizing that the nightmares of the past eight years, is coming to a close. WE ARE NOT GOING BACK!  Needless to say, this has been a huge victory in my life! 

Also apparently last week was “International Booster Week.”  Actually, I am just kidding but it sure seemed like it.  Not only did I have a friend in Canada and a friend in Texas having boosters that week, but I had the privilege of having the infusions with two other coma patients and their families that I have become quite close to.  Not only were we infused at the same time (which does not really make that much of a difference considering it is pitch black and there is no talking), :) but we all even stayed overnight in the same hotel. 

A lot of ketamine coma patients stay in Philly following there boosters.   It is stressed by our doctor that for the first 24-48 hours after infusions it is important that we rest, For the most part we have all found much better results when doing so.  So, we all even ended up in the same hotel.

After each of us rested and some of us took an afternoon nap, we congregated downstairs and spent the rest of the afternoon talking from anything in terms of recovery, politics and even our best, most crazy stories in coming out of the coma.  We were actually quite entertaining together and really enjoyed each other’s company.  After talking the whole afternoon, my Mom had to point out that it was definitely time for dinner as many of our family members who had not had boosters were quite hungry.  Actually, to be truthful, we were so involved in our conversations I think we could have talked all night through to morning and not realized we were hungry.  We all decided that we would order from somewhere that delivered.   Ha… and even then my Mom had to keep us on task as we continued with our conversations.  Each time we would begin to look at the menu, one of us started yet another conversation.  I am not sure we would have never decided what we were all going to eat if it were not for my Mom.  Soon after ordering dinner, we decided to move to the dining area that The Hampton has for breakfast and we sat down and ate together there.  We all enjoyed each other’s company over a good meal and many laughs.

As I have written about before, RSD has taken many things from me, part of my high school years, competitive softball, many years of pain and suffering and the list goes on…  but I think what those years have given me far exceeds those it has taken away.  The lifelong friends I have made are certainly one of them.  These are people that can relate to a time in my life that few can.  And because of that, even after coming out of those desperate years, we think very much alike.  Often times we view life differently.  How we approach life, love, family and friends, it’s different now.  Those years have changed us.  And let’s face it, bad things change you, they have too. But it is HOW they change you that matters.  Despite what some people may say, good can and will come out of our struggles but you have to let them.  You also have to choose to continue to fight when we have every reason not too.  And I can tell you, each one of these people have allowed the times of sorrow and misery, to change them for the better and am honored to call each one of them my friends. 

While I was in Philly I met with my Psychologist that I have been seeing for about four years.  She has helped me tremendously and continues to do so.  Not only did she help me build a good foundation that the doctors in Mexico were able to build on for the re-training purposes following the coma, but she continues to help me in many areas as I continue my path to recovery.  In my experience, I have found few understand how to continue the re-training that was started in Mexico.  And between my psychologist and my PT, I have been extremely blessed in this area.  We are working on a game plan and implementing some techniques so I can return to school.  It is my goal to start one class in the fall but we are taking it slow.  In the re-training process it is critical that you do not go to quickly because it can sometimes be too much for the brain to handle at once.  Hopefully after the holidays we should have a working plan in progress and I am excited to get started.

So, now the post-booster update regarding the RSD.  As some of you may know, the last week prior to boosters was kind of rough (although that is relative considering the last eight years).  ;)  In the three weeks following my return to Mexico, my pain was limited to only deep pain without the usual burning pain that is so commonly seen with RSD.  In the week prior to my boosters some of the burning pain had returned.  Not terribly, but still, it had returned.  I was also experiencing drastic fluid weight gain that fluctuated as much as five to seven pounds.  It never ceases to amaze me the changes RSD can cause in the body and how for some, ketamine is basically the cure for so many symptoms.

At PT we were also noticing some changes and definite signs that it was time for a booster.  One of these signs has always been the increase of my knees giving out and collapsing.  Usually, it begins to get worse on my right leg first and then the left leg also becomes affected.  This seemed to also be true this time.  One thing was for sure the timing for the boosters was perfect.  It gave me about a week for my body to learn to work some of these things out, and then my body got a little kick in the butt to remind it what it was supposed to be doing.  I think we all need a little kick in the butt from time to time and I was due.  :)  

Following boosters I am feeling so much better.  I have a lot more energy and the pain has definitely improved.  Though I do still have minor burning pain at times, it is certainly less severe.  Also, my energy level has drastically improved and PT is going much better.  My legs seem to be cooperating now and not giving out in my knees.  Yay ketamine! 

I also made an interesting observation this week following my boosters.  I have begun to start something that my neuro psych doctor suggested soon after he did my testing.  He recommended the game “Brain Age” for Nintendo DS (a small hand-held video game).  The idea of the game is to improve your brain functioning.  It does so by the repetition of certain activities on a daily basis.  Each day it tracks and charts your progress.  In the game the ideal brain age is 20 (basically that is the best score possible.)  When I first started the game about two weeks ago my brain age was… okay, get this, EIGHTY!  Yes, eighty years old.  With continued practice I was able to get my brain age down to 48 or so the week prior to the boosters.  However, when the RSD started to get worse, I noticed my brain age started to go up again (and remember the LOWER the brain age the better).  I know Dr Schwartzman has said that RSD actually changes the chemistry of the brain.  However, it is possible that some of this is reversed once the improvement and treatment of RSD (which was true for me).   Well, by the end of the week my brain age was back up to 69.   Now, I have to say I did not play brain age on the days of my boosters. After ketamine, it takes some time for all the synapses to connect again.  So, I waited until Wednesday, the day following my last booster, and returned again to brain age.  Do you know what my age it went down to?  Thirty-six.  Yep, thirty-six.  It came down 33 years.  

Finally, yesterday I was blessed with the opportunity to meet a few of my neighbors.  I know, you are thinking, “What?  You have lived here for around 14 years and you are just now meeting your neighbors.”  Well, yes, basically.  Since I have been sick we have had a few new families move into our neighborhood.  So, needless to say, I had not met them up until this point.   And I would like to stop and say, we have some of the most amazing neighbors a family could possibly have.  We would have never, ever made it through all these years if it had not been for them.  From taking care of our dog and cat when Mom and I were either in the hospital or in Mexico (which added up to quite a long time) to countless neighbors convening at my house to move my upstairs bedroom downstairs on a moments notice, they were always there if we needed something.  And that is just the beginning of what this neighborhood has done for me.  God Bless each one of you.  You were truly a shining light in the darkness.  

Okay, so now that you have that background, last night I had yet another favor as I needed a document faxed to one of my doctors.  I walked up to her house and my neighbors daughter as well as some of the neighbors kids were outside playing in their yard.  Two of the families had just gotten back from vacation and the little girls wanted to tell me all about it.  She showed me her shells that she had collected on the beach while the other little girls excitedly told me about their trip to Disney.  I always love little kids excitement over things like this.  Though I think we as adults (man, I am still not sure I qualify for an adult, but moving on…) I think we enjoy vacation, but not with the same fire and new-found excitement little children do.  You meet Snow White and you think all of your dreams have come true.  Isn’t that awesome?  It reminds me a lot of when I woke up from the coma.  You have heard me describe time and time again about my discoveries of “new” things and at moments you feel that there is no greater feeling in all the world.  It is a feeling I hope I never forget.  Spending time with these cute little guys, reminded me all over again the joy I have experience.  And though it took years of tremendous pain and suffering to get there, I do feel that time was blessed. 

Also, while at my neighbors’ house, I was honored to meet a few of the parents of these children.  Several of us had quite a nice talk and I really enjoyed spending time with them.   I still continue to be blown away on a weekly basis by the kindness, love and generosity that was displayed to me and my family.  The genuine love that is shown in each of these people’s eyes is something I cannot describe.  I pray that I adopt the same philosophy in my life as these people have.  Thank you guys!

So, I think that is the official update from the Spengler home.  I wish you all a wonderful Fourth of July.  I am so excited for the 4th this year as it is a reuniting of our family as we had done prior to my illness each 4th of July.  For the first time in a long time, we will be able to celebrate at my Granny’s house with a HUGE picnic, watch fireworks with the best possible seats, maybe even badmitton and croquet.  We are really just looking forward to enjoying our time together.  And Praise God this is possible once again.   More updates to come…

Love In Christ,

Lindsay          

Please pray this week for:

-Continued improvement in my RSD symptoms to the point of complete remission

-Progress in continuing to spread out the need for ketamine boosters

-Continued improvement in PT as well as endurance and balance

-The development of our plan in helping me return to school hopefully in the fall

-A cure for RSD

-All those patients and families suffering with this terrible disease

-Dr. Schwartzman and Dr Cantu as well as both of their programs

-Funding for Dr S

-Safe travels and health over the holidays

Quote of the post-“Courage comes from clinging to a hand infinitely larger than your own.”