nitty gritty from my appointment & a request for connection

I had my appointment with my practitioner today, and we're a go to move on into the next phase of treatment beginning next week!

The first part of the next phase is all about narrowing in on Babesia, which is a common co-infection of Lyme.  We don't know for sure if I have it, for the testing for it is soooo very inaccurate, but because I tend to have intense night sweats and headaches, we're making sure to include treating it in our protocol. As we treat, if these symptoms get worse before they get better, than it is very likely that I do have it.

The second part of the next phase will be all about attacking biofilms...  put simply, biofilms are a group of micro-organisms whose cells stick together and serve as a protective barrier, like a ball of slime that protects a parasitic infection at the core. Ew, right? When it comes to Lyme, it is thought that these biofilms protect the little boogers from the antibiotics, and because biofilms grow slowly and antibiotics generally attack faster growing infections, the meds can miss some of the Lyme spirochetes hidden and protected by biofilms....  this is one theory about why Lyme can be so very difficult to treat. Thankfully, my practitioner works with one of the top Lyme specialists in the world, who is studying these biofilms extensively and working to find ways to nail them!

I'm not gonna lie. I'm a bit nervous. We're upping the ante, so to speak. So included in my pile of prescriptions for antibiotics and anti-malarial meds are some anti-nausea medications. Yeehaw.  We are also adding some very powerful herbs to the mix, along with some Lactoferrin (first colostrum milk from cows) and Xylitol, which are, interestingly enough, both biofilm busters.  The first two rounds, we'll be slowly adding things.... and in the third round, as long as I'm tolerating everything well, we're going to give it an extra POW.

So there's the nitty gritty.  My practitioner thinks we're on the right track, that I'm responding well...  and now we just aim to keep it that way. I'm also working to address the mental and spiritual side of this journey....  I've been reconnecting this week with some yoga and meditation, and just received the book pictured above in the mail. It's written by a Buddhist nun dealing with chronic illness...  it wasn't until AFTER I ordered it that I found out she has Lyme! So I'm anxious to dive in...

This week, I've been off of all meds, so all in all, I've been feeling pretty good.  Even snuck in some quality time with a couple of friends yesterday, and tomorrow, we're getting back in the car and heading up to pick the kiddos up from camp, stopping to visit with my folks along the way. Divine timing, I tell ya! And yes, I have indeed fallen in love with the new car....  and what a relief it will be to drive it up there with no worries about whether we'll actually make it there or not! I'm actually quite excited, despite that there will no doubt be some 4th of July traveling stress...

Had some great talks with my friends Allison and Paula yesterday...  they are both soul sisters for sure...  we don't just talk about the weather. We get REAL, which is a great match for my newfound outspokenness.  And with their help I was able to realize something about myself...  I've realized that I've been isolating myself a bit. Some of that is because I don't want to be overly needy, me-me-me,  or a burden on anyone in any way...  and part of it is because I've been sensing that some of my friends and loved ones really don't know what to say to me or how to support me, and so my presence can make them feel uncomfortable.

I don't write that from a blaming place at all. I can understand this more than I'd like to admit. My dear friend, Willow, died of cancer a few months back...  but for months and months before she died, I had many opportunities to go and visit her, and had a lot of resistance to it. Yes, I was dealing with my own illness, and so her condition triggered my own fears....  but also, honestly, I wasn't sure what you say to someone who is dying or suffering...  it felt beyond what I was capable of.   Part of me regrets not going to see her, and part of me recognizes that I was just doing what I could do in those moments...  that's all any of us can do, really. I sent cards in the mail and messages to her online, but frankly, I'm not sure she got them or was able to read them.  I like to think that on some level, Willow knew how much I loved her when she died, but the truth is, who knows...

So I get it. And if seeing me makes you feel uncomfortable for any reason whatsoever, I invite you to share that in an email or letter, so that I can be buoyed by your love despite the discomfort... because silence can penetrate the soul in weird ways, and while I try like hell not to take things personally, I do it anyhow.  What can I say?  I'm a work in progress.  And walking around on eggshells doesn't really do anyone any good.

If you're wondering how I am, please call and ask...  please don't worry about it being an inopportune time, like if I'm too busy being sick or being mom or whatever....  if I can't talk, I won't answer or I'll ask you to call back later.  But if you don't call, I won't have known that you were even thinking of me,  and I am so very grateful right now for every little hint of connection. I truly am. Just knowing I am in your thoughts, especially as the road gets a bit bumpier, means the world to me.

To that end, if you haven't heard from me in a while, and you're wondering what's up, please nudge me.  If I'm having a challenging time, invite me out, or invite yourself over. That's a hard ask for me, but it feels necessary. So there it is.  Sigh.

I confess, I am not used to being taken care of.  I am one who likes taking care of other people, who likes being on on top of things, and who doesn't like causing other people to worry. These last few months without my circle have been a real eye-opener around that... it's been excruciatingly uncomfortable! Sometimes hearing concern can feel vulnerable, and sometimes receiving help can be terrifying...  and so I wind up not asking for much.

I know everyone's busy with their own stuff, and admittedly, my tolerance for being social in any capacity varies depending on where I am in treatment....  so I get it when we can't get together face-to-face.  Phone conversations or texts are better than nothing. And if you do find yourself with some spare time and ever want to come over here and watch a movie with me, or take a mellow walk around the lake with me, or on my really bad days, sit and cuddle on my bed and play board games for a couple of hours to distract me, I would LOVE that.

My kids pretty much have all that covered when they're home, and so this summer has been extra extra sweet, but soon enough, they'll be going back to school, and I want to ready myself for that now...  with the clarity born from these two weeks of them being away at camp.  And let's face it too...  and if you're a Mom, you already know this...    grownup conversation is quite important.  :)  Especially when we can both be real with one another.

This is all still unfolding within me, so there may be more to say later...  but that feels like a good beginning...  it feels good to get some of this out...

What about you? What do YOU need?  How can I support you in this slice of time we call life???  I don't see myself as having it better or worse than anyone else...  we all have our shit going on.  And doggonit, I love you.