Monday, May 30, 2016

Day 19 - Back at the FAR Clinic

It was an interesting journey to get back here but I am back and we are going hard.  We have decided that I will stay until Friday and the plan is to hit all the treatments with as much effort we can and make every minute worthwhile.  I am very excited about that and a little apprehensive. But I don't want to waste a dime, minute or effort of this journey, so here goes!

I had a great talk with Dr. Earl today.  He warned me that I am going to decline each day this week because the plan is to go hard.  And that I may go home feeling worse than ever.  But that it will all be worth it.  He was very pleased with all the efforts I made to keep up treatments while I was home and even along my travels.  He feels confident in my commitment for the crucial 3-4 months after I get home.  That he said will be the final predictor or how successful I am.  I think he thinks I am a little pigheaded or something lol.  I asked whether people come back routinely for "tune-ups" and he said he has had one that felt he needed to, but after they reviewed his program at home they were able to tweak it and he has been doing fine on his own ever since. Their intent is to do the intensive 3 weeks treatment to get your system back operating properly, your immune system functioning efficient and to have killed a significant amount of the bacteria so they you have a fighting chance at home.

He told me that after the crucial 4 months, you can start to back off on some of the treatments.  That thought in itself is very scary to me.  The thought of worrying about symptoms coming back is very scary.  I never, ever, ever want to feel the way I did a few months ago.  I never want to feel myself decline so quickly and know that I have no control over it.  I hated feeling so weak that I needed support and I hated my brain operating so basically that I couldn't function in my normal routine. So as much as I have no idea what symptoms will be gone forever, what symptoms might linger or what symptoms may return now and then...I know, that I have the ability to never be as bad as I was a very short time ago. That is power in itself!

And I can already tell you it hit me hard today.  I feel very drained and dizzy.  What is exciting about today though is that for the first time since I started this process by brain is much worse than it usually is.  Now, that might sound like bad news, but not with this process.  It means stuff is starting to happen in my head.  The one area, thats hard to beat and recover from, is showing signs of struggle.  That can only mean the effects of the treatments are having an impact on that area of my body.  This is so motivating to me.  My head feels heavy, dizzy, blurry and I cannot process very well, but I am happy! lol My processing is very slow right now.  I can't keep up to vehicle movements around me and busy places are worse than ever.  It used to feel delayed before, not I think I am about a full 10 seconds behind hahaha.  I can laugh at it because I feel my head is turning a corner and well, if it improves then I will be happy, if it doesn't I might as well learn to laugh...there are going to be some funny times.

I was told today that two people are trying to come but are stalled trying to put the money together.  Wow, that hits hard.  I know the financial burden this causes and I know the heavy thought and how it feels to know you are sacrificing your savings to do something you don't know a lot about.  It bothers me that treatment isn't available to everyone, American or Canadian.  And as much as both systems have their faults, that is beside the point.  If there is health treatment, information and experience to be shared, it should be available to everyone and anyone, willing to do their part.  I don't know the solution, I really don't. I had thought about this a lot when my dad was sick with cancer and the same thoughts have reared their ugly head again.  How can we be capable of so many things  as a country and the health of our people not be the first and foremost priority?  I just don't get it.

So I can sit and feel guilty or I can get healthy and share.  I think choosing healthy and share to be the best.  Its kind of like putting your oxygen mask first so you can help others put on theirs. I think a lot about how our fitness centres could offer programs that would also boost our immune systems.  I wish all health centres would enable us to do more to improve our own health.  A small pet peeve of mine that was supported at the clinic in Switzerland and with the Dr. in NY and now this clinic in Utah...we have to stop feeding our sick Ensure, Boost and all of those "drinks" that are doing more harm that good.  But the conversation is much bigger than that.  I just had to throw that in because it always horrifies me the more I learn.

A lot of Lyme patients have taken their battle politically and to them I am very thankful.  It was never my intention to go that route.  I am just not a lobbying type of person.  I find it very discouraging.  Yet, I know something has to be done because although there is awareness out there now, change is slow.  I know that our country and many others are not prepared for the actual numbers of people.  So they are also not prepared for the resources it will take to help them.  I believe we are years and years away from having a treatment regime for patients in Canada.  So I have decided this (based on questions and requests I have received from some of you): feel free to share this blog with anyone you think should know.  Whether it be another person battling lyme, media or politicians.  If you have been following the blog you know it is a complicated disease to explain, so it makes sense it is hard to diagnose. If it hard for the patient and the medical professional to sort out, it has to be hard for the decision makers and our leaders.  If any piece of this can help with that understanding, I am doing something.

So as my body starts to take on the bastards in my head, I definitely consider that a battle was won today.  I am in the home stretch.  I have been given an opportunity that I will not take for granted.  As this week gets harder I plan to not forget that.  I'm back in the game and ready to leave it all out on the ice...a little Canadian touch...Here we go!

Bastards 6 - Kristy 10 (and counting)

P.s. Thanks again to those at home for the motivating messages and reminders.

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