D.C. days are always long, stressful and utterly exhausting. It’s not that I mind the appointment, well the test dosing is usually not fun, but I’m done test dosing new IV meds, but the combination of the appointment and the drive. This time I was in for a bit of a pick me up. When I got to the office, there was a lady in the waiting room and she approached me and started talking to me, asking me questions and talking to me about her journey as well. She was so nice and gave me her email address and asked for my blog information. She is very early on in the treatment process, but it felt great to talk to someone about Lyme and its co infections and have them understand your suffering.
I also met 2 other people on my way out. A man who has been suffering for over 30 years and a woman who has had it about 18 months. The man came all the way from Georgia! Further proof to me that after all these years suffering for him, he has finally found a doctor that is treating him SUCCESSFULLY and that I am in the best hands possible to get well. Both the man and woman and I also talked about symptoms and treatment and again it felt great to talk to people who understand the severity of the situation.
Good news from the doctor this time. I’m back to going down every four weeks BUT as the doctor said “it looks like the we’ve gotten through the worst of the storm.” This does not mean that I will still not have horrible, terrible, no good days, but that treatment is working and I should start showing more signs of improvement. I have a very strict routine this time. I’m dosing for 11 days straight and then off for 2 weeks to let my body rest. They are attacking it hard but giving me more time to recuperate. I will NOT have to dose on Thanksgiving and for that I’m truly thankful. I have an even more rigorous schedule of meds that I have to stick to even when I’m not dosing. Between all of them, they whack me out a lot, especially the Gabapentin, Marinol and Ativan. Sometimes I feel like a zombie (and probably look as bad as one on the Walking Dead) but I know it for the greater good and that so far everything has worked (even when I have despised treatment and begged for it stop or be over.)
On my good days, the goal is to increase my stamina. It’s unbelievable how even the smallest things can knock me on my ass. Being a Virgo, I’ve always been an all or nothing kind of person; any thing worth doing is worth doing well. This is a learning curve for me, pacing myself. I haven’t done very well so far but I’m trying. I finally have the want to do things but my body keeps saying “Nope, not yet.” So I just keep going, stopping when I can or am forced to by some pain or herx or exhaustion.
Despite being worn out from the doctor on Friday (I was in bed asleep by 800pm) and resting all of the morning on Saturday, I made myself go to a screening of the follow up to the documentary “Under Our Skin”, called “Emergence” at the library. My local CRNP called me to tell me about it. I was not feeling well at all. I was using my cane and my mom for assistance and I herxed for most of the movie. Little did I know the movie was sponsored by a Lyme Advocates group and that there was a meeting afterward. Still herxing, I made myself stay and participate. For the first time ever, I was in a room full of people who “got it.” It was good for me to listen and to share what information I could. I didn’t have to “explain” my disease. I was with people who were suffering or people who had loved ones suffering. These people were loving and accepting of everyone else there. They were as angry as I was that Lyme and its co infections are so overlooked and downplayed and that nothing is being done to help people who are sick. I heard the story of an 8 year old boy who died from Lyme encephalitis and it was heart wrenching I’ve never been one for support groups as far as me personally but I can tell you I am planning on returning to meetings when I can. So if you’re like me and think a support group will do you no good, you might want to think twice. This was also the first time I have been well enough to push myself to go.
After the support group, I was very emotional. My friend’s family was throwing her a surprise party and I could NOT miss that. Kara is my very best friend. She has shown me nothing but true love over the course of our many years of friendship and despite my illness she is ALWAYS there when I need her. I would do anything for that girl. (I did give her a husband…I set the two of them up knowing they were perfect for each other and they now have one of the most loving and happy marriages I know.) I needed to be at that party for her, to show my support, if only for a little while. Broke, all I could afford was a card and I knew that and me showing up, even if just for a short time, really was good enough for her. We have had our fights and no matter what, we are always there for each other. I love you Kara!
Being at the party was uncomfortable to say the least. I enjoyed seeing Kara’s family and some people I haven’t seen in a while. There were people who walked right by me or gave me that fake smile. It hurt. I had known these people for a long time. I was in fear of the germs, being so isolated inside my house and with a severely compromised immune system, I can get sick at the drop of a hat and that is never a good thing, my body has enough to fight on its own right now. I don’t need to be fighting anything else.
After my last blog someone brought up to me that my blogs are offensive and that I should apologize to people. I made my peace with the people who matter to me most, I can only handle so much at one time. I also understand and accept that many people think I’m “faking” this because I have been misdiagnosed so many times and unfortunately this is often the case with Lyme patients. I expect to much from the world, I expect even more from myself. I also know that a lot people don’t know how to relate to me anymore. They don’t understand my diseases and how it affects my brain and my body and how it has changed me. I am not the person I was yesterday, let alone a year ago. I am sorry if I have hurt anyone’s feelings. It wasn’t intentional. I blog to get out what’s in my head, in my heart and to help others struggling through their journey.
Someone asked me why I call it a “journey.” It’s because that’s what it is to me. Just as a person has to go on their own personal journey to find whatever it is they are looking for, this is my journey to wellness and wholeness as person. I look at this “experience” as just a part of my journey to find the answers I’ve been looking for and I’ve been looking for most of my life. Lyme might have taken a lot from me, caused me to be angry and carry grudges, be cynical, jaded and cold because it affected my brain (my job did not help the situation) , but treatment is giving me a chance to start over and be the person I want to be, the best that I can be. It’s a long road and this journey will take a lifetime. I will never be perfect. I prefer the term “perfectly imperfect.” Being able to feel things and not be calculated about everything helps me tremendously, but it can be overwhelming at times. I know without a doubt, who my support group is. It’s open to the public, hence this blog. If any of my “old friends” want to come in, I will welcome them and forgive them. (I know that I am not the greatest person at reaching out and asking for help, but I’m making progress.) Lyme has given me the chance to start over and while I might end up losing everything (money is already gone,) I know this journey has changed me as person and is going to lead me to the path that I’m supposed to take to be fulfilled as a person. It might take a while, but I’m going somewhere beautiful and serene and filled with happiness.
Kara also put together a fundraiser for me through work. I appreciate her doing this for me and I appreciate each and every person that donated! I want to wright personal thank you notes, but at this time my handwriting is horrible and I can only do a couple at a time. I also need to get all the names so I can personalize them. I’m hoping to get this done soon. I’ve recruited help but with schedules it takes time. Again, THANK YOU TO ALL THAT DONATED! The money is being put to good use towards treatment and to keeping me in my house with electricity.
If anyone reading this is interested in donating you can visit: http://www.gofundme.com/LadyLymestorm