I didn't tell people for a while after I found out because the more I Googled information on the disease, the more I learned just how complex and twisted it is. I started seeing things about people having years of treatment and still being sick. I read how the antibiotics broke their bodies immune system down and hurt them. I watched videos of what a herxheimer reaction was, and how painful treatment would be. And then to top it off I watched Under Our Skin, which is an unbelievably amazing documentary about the truth of Chronic Lyme. It's the most honest, raw, uncut documentary I have ever seen, and it struck fear into my very core. What is this horrible disease, and how is no one talking about it?
Then I went through a period where I was in denial. Although I accepted Lyme and talked about it with my friends, I didn't let it actually sink in. I kept pushing myself further and further. I kept pushing my inevitable move home for treatment back as well. I thought maybe if I tried hard enough it would go away. It sounds crazy, but I promise you get desperate once you realize what all Lyme disease entails. Finally my body all but gave up on me, and I had to call and beg my parents to bring me home because I just physically could not do anything anymore. And when I moved home that crisp January 15th day, it was the final stage I hit of acceptance. That day it all sank in that despite me wanting to pretend I was fine, that I was not. Despite me wanting to think my life would go one way, I in fact have no control over that. So that first 2-3 months at home were rough. I got bombarded with experiences I didn't want to feel as my exhausted body fell apart little by little. But I learned (hindsight) that the first step actually is letting yourself fall apart. Because once I picked myself up, put myself back together, and learned to trust God, I finally could come to peace with my life and everything I have to deal with to get through this.
I would be lying if I said that coming to peace with it suddenly makes everything easy. That's hardly the case with the disease that is so fittingly nicknamed "the disease you don't get, until you get it." When you are healthy you always feel 100%. The only time you feel bad is if you get sick, get injured, have a hangover, etc. For the most part a healthy person operates day to day life with a pain of about 0-1. For me, I do not, and can not comprehend what that must feel like. I operate life being adjusted to a constant 5-6. That's what "normal" is. And if you have any kind of chronic illness I am sure you can relate to that. But these were all things I learned this past year, and things you could have never scripted for me. I had to live this to get it. I learned lots of patience, and realized I don't have ultimate control over everything. I learned to be happy about the little things in life, and truly enjoying moments to the fullest. And most of all I learned the importance of health: eating healthy, keeping my body healthy at all costs, and being an advocate to as many people as I can. All the things in life I took for granted.
I want to celebrate this day, not frown upon it. Because living without being diagnosed would have been a total nightmare. I think I am so so SO lucky for many equations that played into things. I'm blessed I had supportive parents that didn't give up until they got an answer. And more so I'm thankful they truly believed in my "invisible" pain & didn't just think I was crazy. When doctors told me I was making it up they vehemently scolded that doctor, picked me up & helped push me along to get more answers. That in itself makes me a lucky girl, because I know many patients who have 0 support from their family. Secondly I'm blessed to be diagnosed when so many people fight for that daily or go undiagnosed before this takes their life. Thirdly I am blessed because I survived this year & got that much stronger. So thank you to my support system, with whom I would be nothing.
All in all, as you all have followed on my journey since I made my announcement last October, I can say I am in a way better place in more than just one way. Mentally I have come to terms with everything. I gave myself time to grieve the loss of the life I once planned, and then I focused on getting better so I can get that back. Secondly, I am in no way healthy, but I feel in my core that I am determined and on a path towards success. I know my treatment plan, and I have a really good feeling about things. It will continue to be a hard road as I carry on, but that won't deter me. I have this odd feeling of peace about things, and it's the first time in a long time I have been able to say that. I'm just not worried about the future one bit. I know in my heart it will work out, because with God it always does. So here's to the first year of my journey with Lyme disease, and by next year this time I will be blogging about recovery :)