content in all circumstances
First of all, I have to say thank you. The outpouring of love and support over these past couple of months have been overwhelming in the best way. For those of you who pray for me, send care packages, send funny/encouraging text messages, and check up on me: thank you, thank you, thank you. It means the world to me.
As for now, here are some FAQ's I'd like to address! (Because, again, I'm selfish and hate telling the same story twice. :))
Dallas is good!
Right now it's hotter than hades, but it's still good.
Even though I miss New York, I can't imagine a better place to be while I'm sick / in treatment. I've had a lot of fun exploring my neighborhood, becoming a regular at my local coffee shop, and also exploring my work neighborhood, Deep Ellum.
It's been great to be in a space where I can rest on a more regular schedule and also have more margin to dream and love others better.
What have you been doing?
Great question. A lot. It's actually been busy, believe it or not!
First, I've been working remotely for King's ~30 hours a week as well as freelancing ~10-20 hours a week for some of my amazing clients. I go crazy if I'm not creating something otherwise!
A group of girls at Watermark asked me to be in their community group, and I gladly obliged. I'm so excited to jump back into community here and, to use a Christianese term, do life with these women. They're pretty great.
I'm also spending a good chunk of my time seeing my doctors here: Lyme, holistic, etc. I've been getting holistic treatments in tandem with more conventional medicine as well. Studies show that implementing both of these things into your treatment protocol result in a much higher rate of remission -- so, I'm definitely taking advantage of it.
How are you feeling?
The same. Next question.
Wait, have you started treatment yet?
Yes. I've been on treatment for quite a while, actually. We're just moving to a more aggressive form now.
What are the next steps of treatment? What does that look like?
Glad you asked!
First, the new doctor:
I met with my new doctor in the Dallas area for the first time on Friday. Last week was a pretty nerve-wracking week since this appointment was going to make or break what my life would look like for the next year or so. Also, we were nervous to see this doctor's treatment philosophies.
To be clear, I love my doctor in Upstate New York, but both Dr. Cameron and my Dallas doctor both agree I need to have someone closer in proximity to closely monitor me, and this doctor is known as the Lyme doctor in Texas/the South. My doctors are both familiar with each other and both endorse one another. Another huge plus in the Lyme community.
Thankfully, we're stoked about this doctor. He really knows his stuff, takes an integrative approach, and he's been trained by the best. He has more than a 90% success rate in getting even some of the worst Lyme patients in remission, so I am hopeful.
He's also referred me to other Lyme-literate doctors in the area that specialize in issues triggered by Lyme, like POTS, the dang syndrome I now have that makes me pass out all the time.
So, for once, I now feel actually really comfortable having a great team of Lyme-literate doctors and specialists that can treat me on a holistic scale. That's a huge win.
The nitty gritty: the treatment
Okay guys, here's a synopsis of what's going down for treatment:
1. The next six weeks:
Prep my body for an aggressive round of three antibiotics (pulsing, some may call it) all at once that will start in September. (hi herxing)
-Tackling Candida overgrowth (hello nystatin & subsequent herxing)
-New probiotics -- like, a crazy amount
-CRAZY amounts of new supplements (hello again, herxing)
-New sleep schedule and medicines to help with sleep cycle
-NO MORE GLUTEN (I knew this day would come. It was fun while it lasted.)
-Pain management (for said herxing.)
-Getting off antibiotics to let my intestines heal (this really sucks.)
-Clearing my lymphatic system through MLD (about as weird as it sounds)
-Visiting a new autonomic doctor & specialist to makes sure this whole passing out thing is under control (lots of testing there)
-Getting checked out again by a lyme-literate neurologist (ok fair enough)
-Getting crazy amounts of testing done to check to see if I also have heavy metal and mold exposure/poisoning. (spoiler alert! both will probably say yes #thanksNYC)
I've already started this a few days ago andddd...it sucks. Herxing is a good sign because it means it's working (learn more about that here), but no denying, Lyme treatment all around sucks. But it's something I'm definitely willing to go through for a couple years in order to get the next forty of life back. :)
2. Starting in September, I'll move to a different group of antibiotics to try and kill the bad stuff all at once. This will go for several weeks, and we'll determine the results from there. He currently has an 80% success rate with getting people into remission using these types of antibiotics.
3. If that doesn't work, then we'll add in IV treatment later on in the game. We're not worrying about that right now, though. We'll cross that bridge when we come to it.
Wait -- are you staying in Dallas? How long is this thing gonna take?
The plan's always been to go to Nashville after treatment's done -- fingers crossed.
With Lyme treatment, it can be extremely unpredictable. My doctor has clearly set expectations for remission: anywhere from six months to 18 months. I'm in it for the long haul, baby!
The thing is -- at any point, I could see just steady improvements and move on with my life and be somewhere else while continuing treatment, or I could need to stay. Flexibility is the name of the game here.
Healing is my #1 priority at this point. If anything else happens, I'll let you know when I know!
So, how can I support during this?
1. Pray. There's no sugarcoating it; I'm getting weary: both physically and emotionally. I've been fighting for 2.5 years now, and I'm tired. This part is often compared to chemo and will be a long road. My prayers used to be centered around "make me better, Lord, make me better." He's changed my heart to moreso ask Him for the courage to walk the path He's set before me.
I'd love your prayers for endurance, joy, peace, patience, and courage as I walk through this. The prayer of a righteous man/woman is powerful and effective, so please keep those prayers coming! They really do make a difference.
Also, please pray for and encourage my caretakers. They're the unsung heroes and deserve a lot more credit than they receive! I think my sweet mom deserves a trophy. I also think sweet Mark deserves some type of award.
2. Learn: With the physical exhaustion also comes emotional exhaustion from having to explain everything about Lyme -- every time I don't have to explain a concept again, it blesses me immensely and makes me feel really known and understood. Learning about Lyme is one of the best ways you can love me through this time. :) If you have a little bit of time, watch this documentary that explains everything. I'll love you forever. :)
3. Have grace: There are going to be times where I don't respond to texts or phone calls. Please don't take it personally. Lyme is like the worst flu ever combined with crazy jetlag for three years straight with some heart palpitations and seizures thrown in.
On bad days, I don't even look at my phone, and the texts pile up. Don't be afraid to text again, but please don't be offended if I can't meet or text right away. :)
Anyways, thanks so much again for all of your prayers - keep 'em coming!
Love to all.