Conquering Fears in Recovery

Watching the news two weeks ago I suddenly realized in the middle of all of this chronic illness confusion there was a major hurricane barreling towards my home. Instead of battening down the hatches, we decided to take a trip up to Asheville, North Carolina in the Blue Ridge Mountains to visit with some of my family. I honestly wasn’t really feeling well enough to go on a trip, or to sit in a car for twelve plus hours, but we had no choice. The next day we packed up the car and necessary belongings and off we went hoping and praying Irma would leave our home unscathed.

Traveling to the mountains brings up some pretty rough feelings for me. I originally moved to the mountains out in Colorado a little over a year ago, in order to get away from the fast-paced, busy, hectic, and often overwhelming environment I had been living in in New York. That environment just wasn’t for me and I was excited to start medical school in a place that my spirit resonated with. I was accepted to two medical schools (one in NYC and one in Denver), and I chose to leave everything and everyone behind and make a leap of faith in the hopes of starting a new more peaceful life out in Colorado. Unfortunately, when I got to Denver my Lyme symptoms came on full force and I was faced with the toughest year of my life.

Although I wasn’t traveling back to Colorado, I couldn’t help but feel this sense of unease heading into a new mountain range. Altitude and I don’t seem to get along, but I really was determined not to let fear rule my life.

Fear was never a part of my life before Lyme. I lived every day to the fullest and loved going on adventures. I was always up for anything and I loved that about myself.

I truly think in order to heal I need to start practicing leaving fear behind. When we first arrived in Asheville I remembered why I loved the mountains so much. You can really feel the beauty of Mother Nature when you look out at these mountain ranges. You respect this lovely planet we get to call home, and remember how insignificant all of the buzz is of everyday life. This connection to nature grounds us.

One of the incorrect diagnosis I received in Colorado was that I had an intolerance to altitude. Now, maybe I’m crazy, but I had to prove this wrong, or at least test the waters on this one when we got to Asheville. On our second day, I decided even though I haven’t hiked since long before my Lyme diagnosis I would give it a go and we were going to take a trip to the summit at Craggy Gardens. The elevation is around 6,000ft at the top. I wasn’t sure if my body or my mind were ready for this but I wanted to overcome this fear and prove to myself that I have made progress in my healing.

When we arrived at the base of the hike, the wind was chilly and invigorating and I felt that old familiar rush of adrenaline. I knew I was going to climb that mountain. The hike was short, but very steep. To be honest, these legs aren’t what they used to be, but I have been building up my strength walking my dog about a mile every day for the past few months. I guess there’s no better place to test these legs out then at this mountain. I might have asked more than once if we were close to the top, but when we finally made it I was so proud of myself. And to top it all off – I felt good.

I stayed at the top of that mountain for twenty minutes and I soaked in that view, that mountain air, that altitude, the beauty of nature, and all of the obstacles I have overcome so far in my healing journey. I’ve realized fear is not welcome here anymore and I won’t let it dictate my life.

Craggy Pinnacle!

Chronic illness has a way of instilling fear in our hearts and, rightfully so – we’ve been through hell and back and realized how much we have to lose when we are healthy! It’s not fun to feel like you got hit by a bus every day and we have every reason to have a fear of that feeling. It’s easy to be afraid of trying things when we are recovering because we don’t want to disappoint ourselves or others. But, as cliche as this may sound the old saying has it right. The only thing to fear is fear itself. And in the end, I think letting go of that fear – piece by piece, day by day – is an extremely important part of healing.

When I put my fear out of my mind I can do much more than I ever could have imagined I’m capable of. And you know what, the next day my legs weren’t even sore!

We’re all healing on so many levels – physically, emotionally, and spiritually and I think when all of these pieces come together, well, that’s when your new life begins.

Returning to Work While Recovering from a Chronic Illness

I recently shared on my Instagram account that I survived my first two weeks of going back to work. Most of the responses I got were along the lines of:

“That’s awesome you’re better”

“I wish I could do that”

“You must be in remission”

Although I very much appreciate the support and encouragement, and I so deeply wish these things were my reality, I feel like I need to better explain my circumstances because I’m sure I’m not the only one out there who has dealt with this situation.

First, I just want to explain that going back to work for some people isn’t a choice they make when they reach a certain point in their recovery. We all want it to be when we’re at X% of ourselves again, or when we’re close to remission, or symptom-free for three months – whatever that goal you’ve set for yourself is, we all typically have it. We want going back to work to be a celebration and a milestone in our recovery, and for many it is. It is an amazing accomplishment to be able to rejoin the workforce and if our bodies can keep up, it’s an outstanding victory. Going back to work for many of us is a huge measure of how far along we are in our recovery. But, I know there is a flip side to this coin. There is a population of us who realize that going back to work is a necessity, not a celebration.

But, I know there is a flip side to this coin. There is a population of us who realize that going back to work is a necessity, not a celebration.

Unfortunately,  I am part of the flip side of the coin. My bank account is empty, I can’t get approved for disability, and guess what, I’m still sick. My joints ache, I have floaters in my vision, my muscles twitch, my feet still burn, I still feel like I have a hangover after pushing myself too far, and insomnia is still a friend of mine (although I’ll admit we aren’t seeing each other as much). I’m not recovered yet, but I’m certainly not as bad as I was before. Thank God!

The sad reality is – I need money to get treatment. My credit cards are maxed out, as is anyone’s who could remotely help me in my situation. My family can’t support me, my significant other can’t support me, and as we all know too well, treatment is damn expensive! Where do you turn when you’re still too sick to work, but you can’t afford to not work anymore?

I’m very lucky. I was able to get a position working from home, which allows me to get paid without having to deal with the hassle of the working world. Anyone with a chronic illness knows some of the hardest parts of going back to work are actually not the work itself, but everything that surrounds it. What healthy people take for granted – taking a shower, blow drying their hair, waking up early, getting dressed, and driving to work. For us, well we’d be exhausted by the time we even got there. Working from home is allowing me to have time to recover and still have a source of income.

 

ellie

My dog insists on sitting next to me at my desk – quite the assistant

 

Now you might be thinking, “well working from home isn’t really going back to work,” and to be honest, that’s what I thought. I envisioned myself typing away in my bed sipping a green smoothie feeling great. Except, even working from home, I have to be sitting upright at a desk for eight hours, I have to look at a computer screen all day, I have to concentrate, I have to be somewhere five days a week and punch in for my shift, even if that somewhere is in a room across the hall from my bedroom. I’m held accountable for where I am and what I’m doing and that isn’t so easy when your symptoms change as much as the direction of the wind. My abs are literally sore from holding me up in a chair all day (how sad is that?). I’d like to think of this as the warm up for the real thing.

My ultimate goal is to be strong enough to go back to medical school next year, and you know what? It’s going to happen. I won’t take no for an answer. An Olympic marathon runner doesn’t just go straight to the Olympics, they train, they prepare, they participate in easier races to get them ready for the real thing. This is my training, this is my preparation, this is me getting my body used to the idea that we have a life to live and we’re getting better whether we like it or not. We have a medical degree to get and patients to treat.

Although pushing myself through this isn’t easy, I can already notice I’m getting a drop stronger. Week two wasn’t filled with quite as much pain and I’m not as sore and achy. I hope the coming weeks continue to get easier and easier. I hope my body adjusts and I get stronger every day. I need this for more reasons than one, and I won’t give up without putting up a good fight.

I just want to encourage anyone out there going through this situation to take a leap of faith. Try something you think you maybe aren’t ready for. Whether that’s working or taking a family vacation. Push your limits a tiny bit. Take opportunities to prepare yourself for achieving your biggest and wildest dreams, whatever they might be. Don’t give up, and don’t go down without a fight.

 

ellie me sleep

This girl makes the long week all okay.

 

Treatment changes at 4:44

Hey,

Eventually, I will post about my path to getting a diagnosis, my symptoms, and overall journey. But, for right now, I want to start with documenting my change from traditional antibiotic treatment to natural and herbal therapies to fight Lyme, Babesia, and Bartonella.

I started off my treatment about 6 months ago with a wonderful LLMD in NYC. He is a great doctor and without a doubt has helped many people recover from Lyme and the lovely little critters that come along with it. Without him, I would probably still be completely bed bound and bouncing from doctor to doctor wondering what is to blame for my never-ending list of symptoms. He helped me get a CDC positive Western Blot (lucky me), diagnosed my coinfections, and started me on aggressive antibiotic therapy and a great supplement plan to boost my immune system. When I first saw him I was probably at 20% of myself, even dipping down to 10-15% on my bad days (damn that’s rough!). I couldn’t work, I couldn’t go to school, I couldn’t drive, I couldn’t cook, I couldn’t take care of myself. Now, I’m probably at 60-65% – I even get 70% days every once in a while. I was able to move from New York to Florida (with the help of my lovely boyfriend), start driving, cooking, basically taking care of myself again – all in a matter of months. I tip my hat to my LLMD. This man knows what he’s doing, he gets the ball rolling, and kills those spirochetes.

nick ellie

After making some pretty significant progress on a combination of oral antibiotics, I seemed to have hit a plateau. 60% had become my home. Not only did I stop progressing, but I started to regress. My stomach simply couldn’t tolerate the barrage of antibiotics being thrown at it anymore. Probiotics couldn’t keep my gut flora in balance and things were taking a turn in the wrong direction. I consulted with my LLMD and he decided it was time to switch off of the oral antibiotics and begin IV antibiotic therapy. At first – I was ready to take the plunge, have a Hickman placed, and get started. But for some reason, something wasn’t sitting right.

Now, I know this isn’t an unusual step to take, and I know for many this is the step that gets them their life back. But, I just couldn’t do it. At least, not right now.

My system has become more and more sensitive ever since I got sick. The medications that once barely affected me, I now need to chop into quarters to use without side effects. Even though I was on antibiotics for the past 6 months, I was only at a half dose of all four of them. Right now, my body is a delicate flower.

ellie me

Call it intuition, gut feeling, instincts, whatever – but I just couldn’t stomach the idea of getting this Hickman placed. I went back and forth trying to make this decision. I cried, I prayed, I meditated. I wanted to make the right decision. I want my life back. I want to wake up and feel good. I want to pop out of bed in the morning and not think about fatigue, joint pain, or nausea. I researched and researched until I found some alternatives, and I ended up in a functional medicine treatment center in my new home of Fort Lauderdale, FL.

No one here told me antibiotics are bad, no one said don’t do the IV antibiotics, no one said a bad word about my LLMD. They are a necessary part of treatment for most of us. They just said – you have other options.

I was relieved.

They took an extensive and extremely thorough blood panel to see what is going on. Found some hormones out of whack, but nothing crazy, and of course lovely Lyme.

They recommended UVLRx, ONDAMED, IV Meyers Cocktails, IV Vitamin C, LDN, along with Buhner’s protocol and many other supportive supplements. For whatever reason, this just sounded right. I didn’t want to blast my body with toxic chemicals, I want to try and support it back into a healthy state.

Yesterday was my first treatment of UVLRx, so it is way too soon to tell anything, but it went smoothly. I had my first ONDAMED treatment as well, where we focused on what the practitioner picked up on based on the frequencies my body was giving off, and also just a general treatment for parasites and microbial infections. While I sat there getting my UVLRx treatment my doctor sat across from me, discussed my case in more detail, and thought up a few more treatments that might help get me moving in the right direction. I felt good about the treatment. I got good vibes the whole time. And when I looked at the clock when the nurse inserted my UV catheter it was 4:44.

This whole situation has made me quite superstitious but it seemed like the universe or my guardian angels were saying – THIS IS THE RIGHT MOVE!

uvlrx

I hope this is the beginning of the end of treatment. I pray this is the start to the end of my story. But, if it’s not, my LLMD will still be there. The antibiotics will still be there. And I’ll try again.

But in the mean time, I’m going to give it a go and see if I can heal my way.