This has been the hardest post to write. I kept putting it off because…
- Writing it means, I have to relive and remember just how sick I was at the beginning of my journey
- How does one really put into words life with a chronic illness??
But let’s see how this goes…
First, A little background about me. I was born and raised in Northern California, I was always a happy, chatty cathy kind of girl. I was OBSESSED with animals and at one point my family actually had, 1 dog, 3 rabbits, 1 bearded dragon, 1 tortoise, and 1 parakeet haha. #animallovers! When I was 15, I started modeling and traveled/lived in Tokyo, London and Milan before finally settling in NYC at the age of 18 to pursue my career further. I believe that my interest in health and food started during this time of working in the judgemental world of fashion. 1 year into living in NYC, I quit modeling and got a high-end retail job in Soho. I worked there until I moved, with my boyfriend (who I actually met at that job), to Paris and after 1 ½ years in Paris we now we reside in Stockholm, Sweden, which is literally the best place to live on the planet!
SO, NOW ONTO MY LYME….
It all started May 2015.
I was just your normal 22-year-old girl, living in NYC and working a retail job in fashion. I spent my days selling leather jackets and jeans; nights enjoying wine, jargaritas and good food with friends. Totally happy and carefree. Ask any of my friends, I was always the “happy one”! One sunny day off from work, I decided to go for a walk through Central Park and sit on one of the big rocks and enjoy some lunch in the sun. Little did I know, that exact moment would cause over 2 years of health hell!! Let’s just say, while I was soaking in the rays and yummy food, a tick (or a spider… I’m still not sure) was taking a literal bite out of my ass.
A couple days past, and I noticed a weird bug bite on my bottom. It was different than a normal bug bite.. Redder…bigger…stranger. It was so weird that I actually took a photo of it which I have never done before with bug bites ( THANK GOD I DID!! That photo would later prove me sane in my self-diagnosed Lyme).
Weeks passed and I started to feel “off”. Nothing serious, just weirdly sick but not really. Does that make any sense?
I was still able to go on through day to day life normally until maybe a month had passed, then sickness started to get real. I would get SO NAUSEOUS. I would feel so sick but unable to vomit or relieve the feeling.
I remember one instance when my boyfriend and I were going to a restaurant in Brooklyn (we lived in Manhattan) and we took a cab there. The cab missed our exit and I started to feel extremely car sick. I have never gotten car sick before in my life so it was a little confusing. Once we arrived at the restaurant we had to walk around the neighborhood for like 45 mins because I felt too queasy to go in. We found a park and I laid on a bench in pure agony trying to get rid of the nausea. I thought I was feeling better, so we went to the restaurant. Literally minutes in I felt so nauseous I thought I was about to puke all over the table (TMI I know…sorry) I ran to the restroom only to find that nothing would happen. It was bizarre and the first of MANY experiences like that.
The nausea continued to become a daily thing. It started to slowly chip away at my once “normal life”
I finally went to the doctor. My doctor thought it could be H. Pylori or acid reflux… but I was thinking SEVERE acid reflux out of nowhere?!?! That’s weird but you know “doctors are right” or so I thought. I took a hydrogen breath test for H. Pylori and was sent home and told to buy some Zantac. A few days later, the results came back NEGATIVE. I was devastated as I thought that could be the answer to my sickness. Ok, back to the drawing board. My doctor then ordered a Barium Swallow Test to see if it was reflux. FYI barium swallow tests are DISGUSTING, to say the least. You have to drink a big bottle of chalky white stuff and then have x-ray pictures taken. Yeah, good luck trying to drink it all when your leave of nausea is already through the roof. I managed to keep it down and those results were also NEGATIVE. Lucky me, I am “healthy” but so sick.
Finally, my doctor referred me to a gastroenterologist.
I remember going into that appointment so scared and depressed. I just wanted to know what the f*ck was going on with me. After intense questioning, he said the worst thing I think some can say “ YOU HAVE TO GET AN ENDOSCOPY”! Faint… yikes… terror… OMG!!!! Hold on… a camera through my throat to go into my stomach… HORRIFYING! Luckily, though, in the US they put you to sleep for the procedure. I have never been so happy to live in a place that overuses general anesthesia! Haha!
My endoscopy day arrived and even though I would be asleep for it, still HORRIFYING! My friend accompanied me as my boyfriend was out of town for work.
I go in, they put me to sleep, I wake up totally confused and disoriented. Felt like I was asleep for hours… it was only 30 mins… 30 MINS! That’s how quick and powerful the sleeping drugs were. My doctor came to talk to me after I was more coherent and showed me some very graphic and disturbing photos of my insides (thanks, doc, I’m not nauseous or anything). He found that I had mild chronic Gastritis. How the F did I get chronic gastritis in a matter of months??? Later I would realize that my stomach is where the Lyme first took hold. This is why it probably took me so long to get diagnosed because I didn’t have the “normal” Lyme disease symptoms.
He prescribed me proton pump inhibitors which only made me feel worse.
On top of the nausea, not being able to eat because of the nausea, and pain, I also started to develop SEVERE anxiety. I couldn’t be in big stores, or on the train, or in any place where I couldn’t see the exit (or restroom) because I thought I would have to vomit and it became my biggest fear (it already was before all of this but wow did it get intense).
I spoke to my doc about this and what did he do?!? Prescribed me shit tons of Xanax instead of getting to the bottom of why I had gastritis and why it wasn’t improving.
A month had passed, its maybe September 2015, and I was still sick and only getting worse. My boyfriend and I were moving to Paris in October, we found bed bugs in our apartment (thanks to nasty, dirty neighbors in our building), everything was just a mess. Now I was sustaining on a diet of baby food, miso soup, smoothies and white rice. I develop a clicking sound in my throat. Sometimes that clicking sound would get so powerful that everyone could hear it and I couldn’t stop it. But of course, my doc says “More Xanax… its anxiety related” maybe it is, but why aren’t I getting better?!?! I got soooo fed up so, I stopped taking my PPI pills and became OBSESSED with reading and researching on the internet on how to naturally heal myself.
I started drinking Slippery Elm Powder 3x per day. If you’ve had slippery elm before, then you are familiar with the snot-like consistency. Bleh! I start taking Pepzin GI to heal my stomach lining and a lot more than that I have now blocked out of my memory…
WE MOVED TO PARIS
My stomach started to feel a little better, but my anxiety problems and clicking throat remained. As my stomach healed, I started to get more full body problems..
Sweats– Cold sweats, hot sweats, all sweats
Chills– shivering but sweating or the class “cold down to the bone” that I would get so frequently
FATIGUE– so bad that I spent most of my time inside of our apartment because I just had no energy to get up
Nausea– I had to basically have my legs up a wall all day + I wore nausea wristbands all day
Joint Pain– Everything hurt!!
Daily Headaches– and by daily I mean ALL DAY, EVERYDAY, not migraine level but definitely uncomfortable
Motion Sickness– In planes, trains, automobiles, everything made me feel sick
Difficulty Thinking– like what’s my name again???
Depression– where I would literally cry every day because of this fucking illness and felt so hopeless.
Mood Swings– happy sad mad sad happy sad really sad even sadder mad happy you name it
Insomnia– tired during the day but unable to sleep at night
Feels of my skin crawling
…. To name a few.
Every day there was a new problem. Every day I felt like shit. Every day I got more and more depressed as I am living in a new city and all I can do is lay at home feeling horrible. I had no social life anymore. I felt too sick to go anywhere or enjoy anything. I didn’t recognize myself anymore. My once happy, carefree self was overcome by sickness and sadness. I knew I had to figure this out myself as the countless doctors I was seeing, said its either “ All in my head” or “ Well, your blood work looks great so I don’t know what is wrong with you” REALLY?!?!?!? It was unbelievable!!! I got so fucking sick of explaining my whole story to a doctor just to get some shit response on how they couldn’t help me. I’ve had enough!
I BOUGHT BOOKS ON NATURAL HEALING
Lyme kept popping up in my searches. “But how could I have Lyme? ” I thought. I never had a tick bite me before… or so I thought. I started to look back at my photo history just to see if I could remember when I started feeling bad, and there it was… THE PICTURE OF THE BUG BITE ON MY BUTT!! Holy crap! I HAVE LYME DISEASE! All the pieces of the puzzle finally fit. That’s exactly when my health started to decline. I HAVE LYME DISEASE!
I found a Lyme literate doctor in Paris and got tested for Borrelia (aka Lyme Disease) and you know what, my results came back POSITIVE.
Just to give you a better idea of how long it took to get diagnosed. I got my tick (or spider) bite in May 2015 and got that positive Borrelia test in October 2016.
My Lyme doctor put me on an intensive 50-day antibiotic protocol. Throughout that protocol, I felt A.W.F.U.L. it was hard to tell if it was antibiotic side effects, Herx symptoms or just Lyme in general. After the antibiotics, he gave more antibiotics and now some herbs. Some symptoms were getting better, some were getting worse. As he was French, it was hard to communicate with him because of the language barrier. I knew I needed a different doctor so in May 2017 (yes time just flies when you are trying to heal…you have to wait months to see doctors and time just…slips away) I went to see a Lyme literate doctor in London.
THAT LYME DOCTOR IN LONDON WAS THE BEST DECISION I MADE FOR MY HEALING
Even though the appointments and testing cost an arm and a leg, it was SO worth it. It’s not that she was a particularly great doctor, but I finally had all the right testing done to learn more about my symptoms and illness.
I found out that my body attacks itself everytime I eat gluten, and that I have a C.Diff overgrowth in my digestive system and the newest discovery…. I have a SERIOUS Mycotoxin (the toxins mold give off) problem which I haven’t even tried to attack yet.
With this doctor, I went through a fully “natural” (and freaking expensive) protocol to attack the Lyme. This included super strong tinctures, and detox supporting supplements.
What people don’t tell you, is that herbal tinctures are so much more potent than antibiotics. I would literally take 3 DROPS of one and if I accidentally took 4 drops, I would feel horrible! It’s crazy!
During this protocol, I didn’t know if I felt bad because of Lyme, or Herx reactions or side effects from the tinctures or just a combo, miss mash of it all, but I knew that I couldn’t keep up with it for more than 4 months. The 4-month mark actually coincided with my doctor telling me about a new product being used to treat Lyme. It’s called Biobran and it’s an immune boosting supplement from Japan that is currently being used to boost patient’s immune system who have cancer. There was a 3-month trial going on to test this product on people with Lyme disease, so my doctor said I should apply and that I would definitely get accepted. Well, she was wrong, I was rejected, so I took an executive decision and stopped ALL of my herbal protocol and bought the 500 DOLLAR (yikes I know) Japanese supplement powder and took it for 3 months straight. I don’t recommend stopping every supplement at once, cold turkey, but I just felt that I had to and luckily for me, it was actually a good idea.
Over the past few months, I have finally been feeling myself coming back again. I can’t even believe it! I have more energy, my depression has improved i.e. I don’t cry every single day anymore, I am able to function a little bit better in society. I am definitely not 100% better… nor 90%… Nor 80%… maybe 70 or 60% better. I still have bad days, but lately, the good days are more frequent… or maybe I am just used to being soooo sick so my new health problems feel “ok” compared to the torture I’ve had to live through. Either way, my level of “shit feeling” is much more manageable and I have learned to function with it. I’m just used to having a pain here or there… or my stomach feeling bad… or my head throbbing. I just deal with it because I am able to live my life a little bit fuller than before. I am rebuilding my social life again and trying to find the “old” Heather again.
Yes, I still have a massive mold problem to heal and I still have digestive problems and anxiety problems, but from where I was this time last year and the year before, I am SO much better. I think I haven’t fully realized that until I actually wrote this post and went back in time to the beginning.
THERE’S YOU BEFORE LYME AND AFTER LYME
I have come to terms with the fact that I will never be the person I was before Lyme disease. Chronic illness changes you! It’s not necessarily a bad thing but you will always be just a little bit different then you remember yourself being. Maybe you are more cautious now. Or constantly fighting the ideas in your head that you are going to feel bad again. Or just going through life with a different view on things.
Whatever it is, you just feel different.
What people don’t talk so much about chronic illness is how scary the idea is to actually be healed. Your life has taken a complete 360 because of this illness and now you are supposed to continue life, where you left off, before Lyme?!? YEAH RIGHT!
Now it’s probably been weeks, months, years since you worked a normal job. No work to full time work? SCARY!
You have been turning down offers to hangout with friends for so long that they don’t really invite you anymore. Now you have to reach out to people…make new friends…get out of the “sick” mindset of hiding inside… SCARY!
You are supposed to blend back into society like nothing has ever happened? SCARY!
You have to do everything on your own now because you haven’t been able to since you got sick…. SCARY!
You almost get used to always having some weird pain, or feeling that you can’t imagine life without them.
I start to wonder if I am actually having pain, or anxiety, or nausea now? Or if my mind is just so programmed from always being sick that it makes me feel sick or even bad when I am actually….technically….not. Does that make sense??
It’s hard to get out of the “being sick” mindset.
For me, I think I have started to just block it out of my mind. Maybe that’s why I don’t talk about my Lyme so much anymore because I just want to be Heather. Not sick Heather. Not Heather with Lyme disease. Just Heather and hopefully someday soon I will be Fully Healthy Heather. That would be awesome. But in the meantime, I will be more open about my Lyme struggles + tips and tricks I’ve learned along the way because if something I do helps you, as well, that would just be the best thing in the whole entire world!
And if there is one thing I would thank Lyme Disease for, it would be that I have found my passion for cooking healing foods and learning about natural medicine. I never knew what I wanted to “do with my life”. I always worked in fashion but I just never really felt passionate about it.
But health and wellness!?!? This is it, you guys… I just want to be covered in superfoods and beautiful produce and colorful backdrops for the rest of eternity because I just LOVE IT 🙂
Please comment, email, and share with me any stories of similar experiences you have gone through and any tips that have helped you through your chronic illness journey!