Thursday, May 26, 2016

Day 15 - quick trip home from the FAR Clinic

Home for a rest - oh a taste of home is good for the soul!  I needed this.  I know they worry about people going home in the treatment and not finishing it off.  But that is not the case with me.  I came home for a reason and it was the right thing to do.  Brian and I head back tomorrow.  I'm ready for this last leg and I am very relieved to know Brian is coming with me.  Yes, you all heard that.  That is me Kristy Giles, revoking my independence. It rarely happens, but I have surrendered to it all.  I have needed everything that everyone has done for me and the list is endless.  I have swallowed my pride and accepted all your support.  So thank you, thank you, thank you...You will never know how much it touches me, daily!

And I may have some good news, I may have turned a corner. I am not trying to jinx it.  I do know of a few recovering patients that have just quit saying they are better.  These bastards, seem to like to attack just when you think you are getting better.  But I am going to stare them in the face and let them know, I am.  I also know for sure I have atleast one more set back to go this week.  Seems to be the standard and I have learned I am not going to get out easy on this one.  I am ready, I am prepared and I say "bring it on boys, cause we got a couple more battles ahead and I promise I will win more than you do".   See what a good taste of home country can do for a Canadian gal lol.

I think there is a lot of safety and security in my home because it is what I know.  It is clear that may biggest mental challenge is my lack of short term memory.  My longterm seems fine (or atleast I am going with that for now).  So being at home really works.  It also explains why my cognitive challenges were so glaring to me while away, its all new, every aspect of every day is short term memory.  I didn't do very well, look very smart, or feel very good about things.  All that is familiar at home, really helps.

Funny story about my short term memory at home. I may have mentioned this before, but if I am going upstairs, I have to repeat to myself why I am going, or I will have not idea once I get there.  We have all had that happen, right?  Well, it pretty much happens with every room I go into unless, I have something with me to remind me, or it is obvious when I enter the room.   So after getting home last night, I went into the basement.  Barely got to the bottom step and realized I hadn't reminded I stood there, stood there and stood there... it never came.  I called upstairs "anyone know why I came down here?'  Now thats just not a question you can ask anywhere.  My daughter's boyfriend asked if everything was okay.  I repeated the question.  He relayed to my daughter and son, who then relayed to my husband.  I stood downstairs and started to laugh as they all yelled down suggestions as to what it might me.  I know I shouldn't laugh, but you have to admit, that if this continues, it going to make for quite the entertainment at my house.  And as much as everyone tried...we still have no idea why I went down there.  It made me realize some really good things 1) I love my family and everything about them 2) It is a huge relief to be able to finally know why these things are happening to me and for the people around me to know why 3) Its important to start to laugh more...because I could be funny for a while...maybe forever!  lol

I also have some good information to share.  I have been working on replicating some of the treatments at home and so far that is going well.  I can reach the target body temp with a hot bath.  So.very. exciting.  Matt explained to me the other day (well, actually he has explained it three times - but it finally stuck) that you want to achieve a minimum of 102 and no more than 104 because in there it will kill the bad cells, but above 104 will start to kill your healthy cells.  I have gotten to 103.5 in the clinic.  But if I can maintain 102 when I get home, that is great news.  I have to watch my oxygen rate (pump oxygen when needed) and my heart rate.   I find if I keep the oxygen going and really try to relax (you will notice I said "try") I can get there on my own.  Very good news for the months after that I need to keep this stuff up.

The other things he explained is, that is why there is so much benefit to the PEMF (Pulse Electromagnetic Frequency) bed that I do the hydrotherapy on because it simulates a temp of 114 but because it is electromagnetically charged it will not kill healthy cells. So the persistent bastards are killed and healthy cells remain.  Who doesn't like the sound of that?!

I also attempted the enzyme workout.  Also a funny story with that...would have been a good video!  First I will explain the reason for the enzyme workout, before I forget ;-) . So how the science is, you walk into a gym, pick two machines, each one for your larger muscles groups: quads, chest, abs, or shoulders.  You pick a lighter weight, that will allow you to do atleast 20 and you do one set to your max, without warmup and you don't repeat.  Check oxygen and heart rate after. What you are achieving here is stimulation of the outer area of the large muscles.  You know how when you are trying to develop muscle you technically are tearing muscle and it is repairing itself?  thats how you "bulk up"?  Well you don't want to do that here. That takes a lot of energy from the body and we don't have energy to spare.  But if you do these exercises this way you just stimulate the out area of a muscle where enzyme production is high.  This will boost our immune system and help us fight this bacteria.  Without wasting needed energy on anything else.  Neat concept but other trainers might be horrified if they saw me do it in a gym.  It goes against most conventional methods of working out.

Then you head to the bicycle for 3x 20 second sprints.  Sounds easy eh?!  The old me would say, so.  Not now.  But heres why they do it.  With a very short warm up they want to push your legs to capacity, to boost the enzyme productions, but they also want to test your heart rate without maxing it out.  Then when its at a high level, they pump you with oxygen to recover.  They monitor your rate until it hits 130 then you repeat 2 more times.  Thats it - all done.  If things go as planned, you can be in and out in 5-10 minutes.  Not with us Lymies though.

Heart rate and oxygen are two things that many battle with, with the disease. It is just not something that may be obvious in a doctors office.  With light challenge it does become obvious.  Mind you I had every cardiologist requested test in the book and they found nothing.  So not sure why that is an obvious symptom int he states.  The first sprint I skyrocketed to 190 without even trying.  So I went down to 15 seconds.  A few days ago I surpassed 200, so I went down to 12 seconds, then had to go to 10.   My early battle was getting when you try to recover and get down to 130.  After 15 seconds, I would stay high and have a really hard time getting my heart rate down and recovering.  All of this is hard for me to admit.  It just doesn't feel like me.  So I really have to work hard on breathing, relaxing, and taking in O2, to try and improve the fall.  Also, you will remember, Lyme (like Cancer) is anaerobic(don't need oxygen to survive). Thats how cancer takes over - they suffocate the good cells, can live without oxygen (that good cells can't live without) and win over cells, one by one.  So if I can improve my bodies use of oxygen, I can kill more Lyme bacteria cells because oxygen  literally kills them. Easier said than done...but I am working on it.

Oh ya the funny story...I have a road bike with clip in pedals.  Picture me, attached to the bike, the bike come snatched from the stationary trainer (but is till attached to the stationary trainer) but we are not upside down and tied up.  So yes, I replicated at home but broke my trainer and my ego lol.  I think all of this will go much better in a gym.

Then the other thing I can do at home is this crazy ingredient, medical smoothie.  The basics behind it are as you do the things above and take in the medicinal ingredients (mostly natural) in the smoothie then you boost the fighting power of the good cells against the bastards.  I was told that the effectiveness of the smoothie doesn't work without treatments, because the good cells will best absorb  the nutrients when they are strong, oxygenated and the bad cells are weekend by 02 or heat. But it takes over 2 litres of smoothie a day, with a million ingredients to cut, prepare and blend...more exhausting than the workout.

So that's it in a nutshell. Thats allows me to do 4 treatments at home.  How empowering is that?!  So two more to sort which require machines...but I have an idea....

So I may be repeating myself, but I have no short term memory and I am using that for all its worth.   lmao I may forget a lot these days but I won't forget how caring, kind and generous everyone and I mean everyone has been to us.  I will never, ever forget what people have done, said and offered.  I don't even know how to explain it, but it has touched my whole family deeply.  So along with sorting out how to continue my treatments at home I am also sorting out how to give back, when I am better.  Its been monumental, how kind and caring people are.  I plan to pass it on....forever!

p.s. The images are empowering messages from home.  They always seem perfectly fitting!

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