Chronic Lyme Disease: The PK Protocol Part 2

Not impossible, just different.

The past two days my mom and I have done quite a lot of driving. Tuesday morning we hightaled it from Cape Cod all the way to New York. On wednesday morning, I had an appointment in Rhode Island, after which we drove back down to the Cape. Not only was it long, it was early and way off of my coping schedule. In all, my day was 17 hours. Growing up, summer consisted of a never-leave-stay at our rented beach cottage. But for the past few years, due to my condition, that has been slightly impossible.

With no school, summer has become labeled as a time of fun, partying, and “YOLO.” Yet this definition was created by the same world that promotes killing innocent, unborn children, shakes off divorce like its hunky dory, and tells girls selling their bodies is vital for success. Yes, it would be nice to be able to relax at the beach all day, everyday. However, this view of life, that everything should aim to please us, is really something we humans have created over the years. Fulfilling our inner desires in order to truly be “happy,” will not get you very far in life. It might excite you in the moment, but later will leave you empty and wanting something more. It is for certain, my summer may be much different from the average teenager. However, I have come to terms that, it is not cruddy, just different, and that is OK.

You can adapt to anything, whether physically, mentally, externally or internally, the key being to not fixate on the situation. No, my summer will not contain any ice cream sundaes, mini golfing, boogey boarding, late night town outings, or anything else labeled “summer fun.” Instead, there will be weekly blood draws, IV’s, doctors appointments, and extended car trips. I am not saying it is easy, and some days I blow up mad at everything. At what I am not sure, usually just because I cannot deal with the nagging pain that never leaves my body.  God did not create us humans in pain, but because of sin, it is a large part of life. Sometimes, when the pain is really excruciating, I try and change the way I view it. You see, the world also preaches that pain, in any form, is completely awful. Though this may be true to some extent, wallowing in this fact does not help it in any way. Instead, I try to change my mind’s perspective from pain=bad, to it is just another feeling, much like stomach butterflies, happiness, or being tired. I am not saying pain is right, and in most cases hurting means something is truly wrong. This is why we perceive the hurt in life as bad, and try and run from it.  Yet, what if, instead of avoiding it like the plague, we confronted it head on, and realized it is a part of life just as big as the other things we enjoy. This is truly the hardest thing to do in life, and I am not saying we should ignore the pain. However, don’t let it make you become bitter and angry because you can’t have everything the media promotes or your peers have. While I am waiting for my health to come back, I must constantly remind myself of this, otherwise my illness gets its way and rules over me. Life is not about pleasing ourselves, but about letting God have His perfect way in and through us. Yeah it is not always fun, and I can assure it will probably never match the world’s deceiving framework of the “good life.”  But I also can promise that, in the end, you’ll never view life’s inconveniences the same again. When this happens, everything becomes just a little bit easier, and much more meaningful, despite how it looks or feels. As I have said before, the pain is not meaningless, everything has a reason, praise be to God.

Tuesday, I had my 2nd appointment with Dr. Levynthall in NY for my 1st official PK Protocoll IV infusion. For future treatments, I will have a nurse-friend hook me up to an IV at home, so the trips to NY will only be every five weeks. This infusion will last at the least a year and a half, depending on how damaged my cell membranes are, and how long it takes to remove the toxins ruining their function. The infusion itself starts off about a hour an a half long, and builds as the weeks go on. Ultimately, you cannot overdose with the infusion, and can do it as many times a week as you would like or can handle. In Europe, most patients recieve the IV 5-6 days straight. Once their cells begin to heal, the days taper down, until it is only once a week. Personally, I will do it as many times a week as our great nurse-friend will do! I also met with their nutritionist, however, I am pretty much doing everything right, so that was no problem. They have me on some supplements to aid in digesting the mother load of saturted fats that my body is deficient in, as well as some other things specificly addressing my bloodwork. The IV fluid itself is called phosphatidylcholine. Once that is finished dripping, I recieve a push of vitamen B12 in the back of my arm, as well as a seringe push of Leucovorin. The doctor will order these supplements so that we can administer the IV itself, but until then, I just cannot wait to get home. Back to Cape Cod we go.