I can finally see small improvements in my treatment. Most are small by other standards, but just having more “good” days is amazing. Dosing is becoming easier (though I don’t think it could have gotten much worse after last month.) I found out at my doctor’s appointment on the 15th that I have a very mild reaction to my new IV medication, all I have to do is predose with Benedryl and I’m ok as long I don’t develope a more severe reaction. I’m only dosing for 2 weeks at a time now and then have a full week off. Not having to go back to the doctor for 6 weeks…AWESOME! I’m napping less on most days and my cognitive fuction is taking baby steps forward.
But then there is the downside…the dark side of my brain is coming back. I’m searching for The Way to navigate all of this.
I cannot fathom abandoning my Roman Catholic roots. I believe in God and Jesus and the Holy Spirit. I don’t go to church, yet strangely the only 2 places I have ever felt moved to tears were at Saint Patrick’s Cathedrals (1st in New York City and 2nd in Dublin, Ireland.) Even before I walked into St. Patrick’s in Dublin, I had this feeling that I had been there before (this was my first trip to Ireland.) I felt as though I had been there in a past life. I knew in great detail what it looked like inside before I walked through the doors. I knew where the women’s chapel was. I could see it like a memory with me included, a memory so intense, so real, as if I were there to worship hundreds of years ago. It left me stupified. How could this be? I had done enough research on Ireland to know some things, but I wanted most of it to be a surprise, so its not as though I had researched and studied pictures. Ever the “bad catholic,” not attending church in years. I couldn’t even be a considered a C and E (Christmas and Easter only church) catholic. My only feeling was divine intervention, the spirit within me, reminding me the He was there. My entire trip that feeling stayed with me and intensified as the land, the air, the people secretly called to me. I know, it still sounds strange to me after almost a year. If only it were as easy to move there, to be comforted by a country that held many of my ancestrial roots. It was like a drug. Once I had that comfort, that safe place, that feeling of peace in my soul, to the very core of everything I was…I could not go back to life in the United States and be unchanged.
(Side note : I do conceed that in the last 5 years I have had many life altering events, each one preparing me in some way for the next.)
I might be a “bad Catholic,” and while agreeing with basic principals of Catholicism, I have struggled for most of my life with The Church. I believe in love in whatever form it takes. While in some instances its needs to be controlled (i.e. child molesters, rapists, etc.) as the saying goes “you can’t help who you fall in love with.” I, myself, am heterosexual, but if I were to fall in love with a woman, I do NOT believe that God would turn me away or punish me. I don’t believe that both French kissing a man before marriage and murder will both get you into hell. Those are Church Rules. I still see flaws in The Holy Bible. I believe God to be omnipotent. But The Bible was written by men. You have to take into account that some things were lost in translation, especially in a time when women were seen as subservient.
I strongly disagree that unless you are baptized you will not get into heaven. I was raised Roman Catholic by primarily my mother, who was raised that way by her parents and so on, in a primarily Christian country. According to the Church, Jews/Buddists/Taoists/Paegans/etc, will all be kept out of Heaven. That doesn’t fly with me. I’ll use Ghandi as an example. Look at all the good he did in the world, do you mean he didn’t get into Heaven? Absurd! I believe in being a good person, a kind person, emathatic, compassionate and above all, a loving person and God will welcome you with open arms. I think God is forgiving, so long as you are TRULY repentant. I may not have always been all those things all the time but I do believe that God forgives me.
But Catholcism has left a huge hole in me that yearns to be completed. It doesn’t fill my needs. I have investigated some other religions and I do take parts from them that have help to fill some of the hole inside. But I’m still looking for “The Way” that works for me. It is at this very point in my life that this has become an odessy that I must take.
In today’s world we are bombarded with all varieties of religion, yet it is still a taboo or “impolite” subject to discuss. We teach children to hate an entire culture because of the extremists or heretics of that religion. Wars are still being faught in the name religion. It greatly saddens me. What most fail to realize is that most of the principals in the religion are similar and the foundations on which religion was based are similar stories handed in the teachings.
Its the fine print that causes the most problems. Instead of sharing the wisdom of religion we fight it like cancer. This creates a struggle for someone like me.
I know mostly Christians. Therefore they share The Bible leaving me forced to try to navigate other religions alone. I do pray to God every day. Still the struggle ensues for fulfillment. Yoga, most commonly associated with Hindus, is an excellent tool for me when I can. But try doing Downward Facing Dog or Planking when your muscles are shaking even without exercise.
I look at this world, not just me and my problems and see so many people in need of a high power of some form. We look to religion to understand the atrocities of the world. Most people have lost their humanity.
So how and why is this coming to forefront of my problems? I see a corrupt government that created this disease (lyme and its coinfections) and released it on their own culture to test out for biological warfare (something the Nazis did too.) They refuse to pay for its treatment and deny their part in it. I didn’t do anything wrong to get this. I didn’t have unprotected sex or share needles. I was trying to enjoy fresh air (which is polluted) and cultivate a garden as apart of the cycle of life and to help bring the honey bees back (there is much scientific information that says when the honey bees die off the world is doomed because there will be no cross pollination.) I didn’t “try” a drug knowing the risks involved including a family history of abuse. I did nothing to bring this on myself and be forced to undergo excruiating pain, destroy my finances and lose my job. I did nothing at all to deserve this and neither did millions of other people. A chronic illness of any form not only affects the inflicted individual but their families and friends as well. And I openly admit that I do throw some damn good pity parties for myself once in a while.
The point is that I need to come to terms with it and believe in something more powerful than just myself and to explain the wickedness of this world. That was part of the reason for this blog, to help others through their suffering. To be a vessel in which to share known information. I still need help and with the disappearence of people I loved so deeply, thinking they would be there to help me through this, I am lost yet again.
My mom and I were discussing her going back to work, assuming treatment continues as it has on this round. I immediately flew into panic. She was going to go back to work (the ride being physically taxing on her body) and how things would change. Some the changes would be manageable but I would be pretty much on my own if something happen (she would be at least an hour’s drive away.) That scared me. I felt guilty for not being able to take care of myself, for putting all of my burdens on her, including finances. And this ladies and gentleman, is why “The Way” is a new neccessity in my life. I have only a few weeks left to amass more coping techniques. (I do not expect to master anything in that short period of time.)
I believe we are all put here for a reason. When people say “how do you justify God killing someone (i.e. babies/children/emergency services workers?) I say that person has fulfilled their duty here. Maybe it was to change someone else from a path of destruction, or to teach a lesson. That was easy to do with death (not that is making losing someone any easier emotionally, but its a way to rationalize it, at least for me.) Its a lot harder to apply that personally. I’ve said before that I think that getting sick may be the the best thing to happen to me. I still believe that. I live on the belief that its teaching me something and making me the person God knew I was intended to be. But if anyone else has any good ideas, words or wisdom or practices that may be helpful, my heart and mind are both open and willing and waiting…