Navigating Lyme-Land and Chronic Illness

It’s been a little over three months since I was diagnosed with chronic lyme disease (and associated issues, ranging from hormone imbalance, to mold toxicity to low thyroid and more). I already felt that managing my health was pretty complex, but things have just gone next. level. Trying to get my bearings, I keep feeling like I’ve been thrown into a whole new universe...

New IV therapy protocol

New IV therapy protocol

To use the word overwhelming is an understatement. Bottles and bottles of new medications and supplements, IV therapy, devouring audiobooks to learn more about this disease and increasingly persistent, debilitating symptoms have left me as flattened out and depleted as I’ve felt in years.

I’ve also had to communicate the information from my lyme doctor in Los Angeles, including her diagnosis and treatment plan, to my local care team. This has meant updating my health coach, therapist, headache specialist/neurologist, urogynocologist, primary care physician and gastrointestinal specialist (who has referred me to work with a dietician). I feel like I need to round everyone up in a room (preferably a breezy and beautiful one on a tropical island) and hold a “Natalie Health Summit”, so that we can get everyone at the same table. But since that’s not an option, I’ve been running around trying to bring each practitioner up to speed on all the recent developments.

I’ve fought through intense anxiety and discomfort advocating for myself with confidence to the professionals on my team about the new information my lyme doctor uncovered. Dipping my toe in lyme-land research, one of the first things that became crystal clear was how controversial and misunderstood this disease and diagnosis is. I’ve read story after story from individuals who have been impacted by the stigma surrounding this disease. I was afraid of being confronted with that same judgement and lack of understanding.

I walked into each of my appointments relying on hope and trust to hold up my wobbly legs and give power to my shaky voice. I had no idea what to expect and how my lyme diagnosis, testing and treatment plan would be received by medical professionals not specializing in that area. With overlapping symptoms, and lyme often being called “the great imitator” — I was concerned about what their opinions would be regarding the legitimacy of lyme disease. Overall, I can say with extreme gratitude that I am lucky to be surrounded by very open-minded medical professionals. I’ve been met with cautious optimism and encouragement to pursue lyme treatment; even without great understanding as to how it links into the larger fabric of my health.

However, what remains painstakingly obvious as each day goes by, is that right now, my body is having a really hard time. I feel so sick for someone who is trying so hard to get well. My Mom described my symptoms right now as a game of whack-a-mole, one consistent flare to the next popping up right after each other, with speedy unpredictability. Between bladder pain, migraine attacks, daily head pain, SIBO, gastroparesis, candida overgrowth, anxiety and brain fog there really is something going on — all. the. freaking. time.

#catchincurveballs via  @heyamberrae

#catchincurveballs via @heyamberrae

On top of that, some of the steps I am trying to take towards treating lyme have flared up bladder pain symptoms worst than I’ve ever experienced. The first two supplements I started from my lyme doctor caused intense bladder and pelvic pain, as severe as when I was initially diagnosed with interstitial cystitis in 2016. The insides of my thighs have marbled purple heating pad burns on them because during the month of February my pain was so intense and unrelenting that I had to use heat constantly to get through the day.

Last week, I learned that I need to undergo my first operation to get further information about my bladder and obtain a biopsy. This procedure may lead to several weeks of increased pain and symptoms. These unforeseen curveballs have made what is already a difficult situation, feel impossible; I wouldn’t believe it, if I weren’t living through it.

My little brother visited me a few weeks ago, and on a day I was having a particularly hard time with brutal symptoms asked very softly and sweetly — “I feel like you always say it was bad last week, or last night…but from what it looks like being with you, isn’t it pretty bad all the time?”

My heart broke a little and I could feel tears prick at my eyes. His gentle observation made me feel so seen and heard. Taken care of. But also sad. The little brother who I’ve always tried to set a strong example for was noticing my pain, calling me out on my “act” and caring about my hurting and struggle so compassionately.

One of our “biggest” outings while lil bro visited! Fetchies at the park.

One of our “biggest” outings while lil bro visited! Fetchies at the park.

The truth, and what I told him, is yes — it is hard most of time right now. But, in order to live and cope and function and continue believing there is a light at the end of this tunnel, I have to force myself to look through a super magnifying glass to find good in between the bad.

The moments of “good” (feeling up for a walk outside, helping with dinner, falling asleep without an ice pack on my pounding eyes, a day with mild bladder pain, being able to talk on the phone, or watching a TV show without an immediate migraine flare) are what keep me going. Give me a “good” three hours one morning, and bam, you’ve broken up a stretch of “bad”.

When I look more closely and honestly, right now, the difference between “good” and “bad” is really between “pushing to function through pain and fatigue” or “not being able to function at all”.

Currently, I’ve been advised by different practitioners to follow four totally contradictory strict diets, and every specialist wants me to start a new set of daily medications. Although I remain hopeful and optimistic about my trajectory and treatment, it doesn’t change how completely overwhelming and confusing my current situation is and feels. The “bladder bomb” on top of everything elevates emotions of overwhelm and intimidation beyond words. Too much. I have found myself saying lately, that it just feels like too much.

I can heal. I will heal. I am healing.

I can heal. I will heal. I am healing.

But then I’m smacked with the mindfulness principles I’ve been working on integrating into my thought process for years — it might feel like too much, but it is what it is. Not too much, not too little. It just is. What also is, is that at the end of the day, I am the one who will sail this ship through this storm. I am the one responsible for this body, this recovery and this healing. I am the one who must ask for help when I need it. I am the one who has to decide how to integrate the opinions of multiple medical professionals into a cohesive approach that works for me.

And that is a lot of freaking pressure. But it’s also such a gift. Because what is more precious than fighting for life itself? What more important thing is there in this world than to get better for myself, my family and the people I love? To keep growing with love and determination that what doesn’t kill me, (even when it feels like it’s trying to do just that) will make me stronger. Has made me stronger. Is making me stronger.

So, as I navigate through the absolute maze of lyme-land and multiple chronic illnesses, with 99 problems and a zillion different solutions, I hold onto this truth…

This one fact above all, I hold sacred and true. I will heal. I am healing. If anyone is going to put the pieces of my life back together and carry me closer to living out my dreams, it’s me. That no matter what happens, I won’t give up on me. That deep down, even on the days that hurt so much and where my spirit feels absolutely broken; I can handle this. I will handle this. I am handling this.

Love, strength, courage and all the good stuff to everyone else walking this road — you are not alone ♥️

Natalie Sayre4 Comments