Roller Coasters and Gratitude

Well, if you have been reading my posts lately, you will notice they have been VERY up and down. And I am glad you have witnessed that because that is exactly what it is like to suffer from Lyme Disease. Some days are OK, some days are hell. Some hours are good, some hours, not so much. As a patient you learn to live with Lyme not to let Lyme live you, which actually still does happen from time to time.

It's been a very stressful month with the subject of the hysterectomy having come to the forefront and I have found myself dealing with a lot of pent of fears, frustrations, and questions - on top of all of the excruciating bodily pain, exhaustion and mental fatigue I experience on a daily basis. My normal roller coaster has kind of been like running up Mt Everest and then jumping off Niagara Falls all in an hour, every hour, for about a month.

It's also been very exciting. My PR campaign for the book has started now and I am really thrilled that people are taking notice, booking interviews left and right and more importantly than than them being interested in my story, they are interested in LYME, which is what needs to get out there. We need to really have a rational, fair, uncorrupted discussion about what we are going to do about this pandemic and honestly, I think it has to start with someone like me - just a mom from NH - a neutral - to make this happen.

My interviews have gone beautifully so far and I am enjoying them. I feel I am living up to my calling which is to spread awareness not only about Lyme, but to give the disease a voice, to humanize it in a way that we are talking less about spirochetes and biofilms, and more about the lives that are being lost, destroyed, and mangled at the helm of this incredibly gigantic ship with no captain.

The questions are hard, because Lyme is so misunderstood - What are the symptoms of Lyme? Well, pretty much everything - there are 600. I assure you though, I have a fine-tuned answer to that one. Why is it so hard to diagnose? Well, the people who make up the IDSA all had conflicts of interests or colleagues who did, so it wasn't an impartial study that was done...all those years ago... at all. I basically refer people to Under Our Skin, the documentary, for that. Mostly though, what I have found is that once I start speaking MY truth, what it has been like to watch Lyme weave its way through my life in its various stages from my tween years until now when I am almost 40 and a single-mom of a five-year old, it's almost as if the hosts are left speechless, not sure what to say, because Lyme is so overwhelming, so incredibly audacious by all standards that it almost seems to horrible to be true.

But it IS true. And this is also true. There are some really wonderful people in this world and a lot of them are in my life. I have worked hard in my life to be honest, good, helpful, and loving to all people. It has always been hard for me to ask for help, but Lyme has been humbling and I have learned that not only is it OK to ask for help, but it is a part of being a complete human to do so. For when we ask for help, we are allowing others in.

While I recover from surgery, my parents' house will be occupied by house sitters which means... you guessed it - my usual caregivers will not be here to take care of Mini or me. And while it has left me completely panic stricken at times throughout the past two weeks, I managed to map out everything that would need to be done from pick ups and drop offs, to meals, to caring for me, to caring for Mini, to play dates, to just watching Homeland with me and you know what? Every single slot on that list was full within about 24 hours. I have some amazing friends. I will add that two people are coming up from over 3 hours away to stay with me for half the week - one for the first half the other for the second weekend. Now if those aren't good friends then I don't know what one is.

This has also meant that I need to put the pedal to the metal on Mini's LONG overdue birthday party. Her birthday was in the middle of January, but I was in the Dominican Republic (mother of the year) with my job, and then went straight back into treatment. SOOOOO this weekend we are having a puppy party. I won't spoil all the details for all of those 5 year old readers out there, but the cuteness is almost too much and it has been fun preparing for it this coming weekend. Someone is pretty excited. I am not sure if the one who is MORE excited is the one who is 5 or the one who is 38.  I just hope it will be a good Lyme - but I am creating the reality that it will be.

So today, while I have had some pain issues, I just want to stop, take a breath, and say THANK YOU to everyone who has signed up to help out after my surgery. I am also so grateful to the hundreds of you who have sent me your kind words about my book. It absolutely gives me goosebumps to read that you felt as if you were reading your own story, that finally someone understood you. I am glad you have a resource to share with your loved ones now so they can see from another angle what it's like to be "one of us".

I am grateful for so many things, but most of all, I am grateful today to my Lyme Literate Naturopath, Dr. Steve Clark who said something to me in an appointment last week that allowed me to unleash myself from the chains of stress I was holding onto so tightly. After lots of talk about bio-identical hormones and how we will go about treatment after my hysterectomy, he ended the conversation with a sentence which freed me, "Andrea, I think the best medical advice I can give to you right now at this very moment is for you to be at peace with the surgery and subsequent treatment."

And with that, having sought out four opinions- 2 female, 2 male; 2 GYNS, 2 Lyme Specialists one of which is an ND, I realized that I am doing the right thing and I am ready, willing, and able, to allow this surgery to help me heal and move onto the next stage toward long-term remission.