A Weekend in Maine

We're spending this weekend in Maine, in a cabin I have come to since I was a child. My parents brought us here knowing I needed to get away from my house, which has been my holding cell for so long. It's freezing here. I mean really cold, but I am sensitive to the cold, so maybe I am just exaggerating.

On this treatment round I have now noticed a real rhythm to my fatigue and pain. I wake up with Mini around 7 after sleeping very hard with my "sleep architecture concoction". I take my thyroid pill first thing and it takes me a chunk of time to wake up. Then I get up and take round one of pills - on an antibiotic off-week, it's about 18 pills in the morning. Then I spend the morning kind of awake, sitting, trying to get stuff done. My feet are bothering me a lot. I keep telling my massage therapist that I wish she could just crack my feet a thousand times. Everything just feels so out of place. Bartonella.

By lunchtime, I get hungry (finally) and eat some kind of meal. If I am at home, sometimes I forget, but usually it's a half a sandwich or some wonton soup from Trader Joe's or something. And then by 1 I start to crash, dead asleep by 2p.m. This is perfect because it's Min's nap time and she knows she needs to stay rested and quiet (if not asleep) until 3:30 when she can play her with iPad until 4p.m. when she is allowed to wake me up.

This is the roughest time of day for me - from 4pm - 7pm because there is so much I have to do with her and my assistant has left by then. We play, I make her dinner, feed the dogs, throw her in the shower, jammies, read books and get her in bed, asleep by 7. Once that is done, I go straight to my bed, and bury myself in my comforters. I work, blog, watch TV, stare at the ceiling, etc. But this month, no matter what I am doing, I sit in that bed and cry. These are seizures that have been recurring now and I need to do something about them.

While I am in bed, I start to notice the leg pain creeping back,feeling swollen in my calves, numb in my shins, and painful in my thighs, radiating up into my hips. Enter the Vicodin. This pill is so hard for me to swallow - pun intended. I spent so many years working in a naturopathic medical practice and yet here I am, pounding antibiotics and now Vicodin. I have been having consistent panic attacks - enter Ativan (which I take 3 times a day anyway) AND now Xanax when really necessary, which has been more frequent lately.

I am extremely emotional these days. I think it's all just taking its toll on me and besides being sick and having a child, I have the usual professional, personal, and financial stress of it all to deal with. It's caught up with me and I am pretty overwhelmed. And so flow the tears as I write.

I was talking with my dad this morning about it all and for the first time said, "if I ever get rid of this thing"and he agreed. Will I ever get rid of this? Probably not. Will I feel infinitely better? I believe I will. I will do everything I need to do to get better. I have come a long way with Dr. J, but there are setbacks and he has described my case as "building the plane while flying," mostly because I have adverse effects to most of what he does. I don't know if it's because of a 3 decade infection, if it's because I have it in every section of my brain while most people only have it in 2-3 parts, or if the fact that I carry both the American and European strands complicates it all. There just isn't enough research to know. So I am a plane being built in the air. SUPER.

I have noticed that my spine is giving me trouble again. I have massive pain in my sacrum all the way up to my upper cervical area. We have known for some time that my spine has been greatly affected and when that is in action, it's brutal. I have a lot going on to distract me, but it's the pain that manages to outweigh all distractions.

Now that I have started to suffer from the cold again, I will need to start taking saunas again. I was unable to do so while I had my PowerLine, but now that it's off, I can use it again. Many years ago, when I was diagnosed with CFS, fibromyalgia and Addison's Disease, my grandmother was nice enough to buy me an infrared sauna, a dry sauna which penetrates an inch beneath the skin. This helps immensely. Problem is, I always forget I have it because I forget everything. But now, I am cold enough on vacation to remember, so hopefully, I will remember some days at home.

Yesterday I had a very exciting phone conference with the designer of my book cover and interior. Thankfully, he loved my cover design and we are rolling with it. The designs should be done by Friday and then I will be able to combine my favorite parts of the 3 mock ups of both the cover and interior designs. Then I am able to go through the book one more time to look for printer errors etc. And then... they set up the printer.

It's all happening now. The sooner we get the book out, the sooner people may learn more about what it's like to have Lyme and hopefully those who know they have it will be able to relate to parts of it and not feel so alone. It's a long and winding road, this thing they call Lyme. I have known my contribution was meant to be in the form of a book, so I am excited to get it out there and do what I know I have been called to do.

Book clubs are starting to contact me and I am suggesting a January or February read if you are setting up your calendar. I am looking for contacts of book clubs (online and local) as well as book bloggers. If you know of any, please let me know.  Thank you, as always, for your support.