The other day I started bawling in the pharmacy, I cried so hard the pharmacy technician started crying too. I love the workers at my pharmacy, they go above and beyond to help me. I was getting two of my prescriptions refilled and my insurance hadn't kicked in yet, from when I renewed it. The cost of my medicine was $1000. The technician assured me everything would be okay and that I just needed my primary doctor to rewrite the prescription for me because my LLMD was out of network, or something. My primary care doctor had done that once before, for my Bicillin injections; http://brewlifewithlyme.blogspot.com/2015/06/bicillin-injections.html It was at that time she assured me, "If this helps Lyme patients, then we need to be doing it." What she was referring to is the use of long term antibiotics and she's right. If I had taken one short course of antibiotics and followed the cdc guidelines, Lyme disease would have killed me. Finding a doctor like her is rare and I am really lucky to have her on my side.
I'm stressed, it has not been an easy month for me.
I'm trying to figure out how I am going to pay for my next year of treatment and it's not going well. I know that I will find a way, there is no other direction for my life to go but Lyme free. It's hard sometimes to deal with the stresses I face.
Yesterday I was at a friends house and she turned on The Real Housewives of Beverly Hills. I'm well aware of Yolanda Foster and her struggles with Lyme disease, though I do not watch her show. In this particular episode she was at the dentist getting her white gold taken out of her mouth, she had already had her mercury fillings removed in hopes the white gold would not effect her health negatively. But her body still showed elevated levels of heavy metals, which is common for Lyme patients and makes the disease worse and the person sicker.
Telling her oral surgeon not to 'worry about the beauty' of how her teeth ended up looking, she broke down in tears when admitting her fears at the operation. 'I just want to be sure that whatever you take out and put in it's going to be safe,' she cried. 'Wouldn't be great if I just woke tomorrow and I have a normal brain?' she said as she sat back in the operating chair, crying as she added: 'I just want to have my life back, take care of my babies.'
She was explaining to the dentist that she just needs something put in that is not going to continue to make her ill, as she broke down in tears. It's incredibly hard to watch and it's a feeling I know all too well. A women who is willing to do anything for her health, who only wants to rid herself of this horrible disease. That feeling you get...it's gut wrenching. The moment the tears come on and the utter frustration that you do not have control over your health. The fear that there is something that can prevent you from becoming well. It is so scary and every single day it sits there on your shoulder like a devil, waiting for something to go wrong. When shit hits the fan that feeling of pure hell washes over my entire body, freezing me in fear for the moment. But in the end it only fuels my determination to beat the shit out of Lyme disease.
The only one winning is me.
Yolanda does not belong on that show, Lyme disease has changed her like it changed me and like it changes all the others who endure it. Life becomes so much more than what's on a fucking Starbucks cup.
I say that I wish that dumb red cup bullshit was my biggest concern in life right now, but i'm only kidding. I would hate the person I was if that's what I spent my time fussing over.
P.S Here is me, on a good day, the day the world worked in my favor and I was able to get my Lyme & Bartonella killing drugs!
After a sweaty workout in my gym, while stretching, I found myself looking out the window at a field very near to were I contracted Lyme, and it occurred to me, that I have a disease. A disease that hinders my ability to be the best version of myself. A disease that nobody knows if you can actually recover from and you have to seek out "secret doctors" to help you.
It's bizarre, I guess as the fog of Lyme treatment diminishes a little more each day, I'm beginning to see my diagnosis from something different than the original shock and I guess I'm adjusting to the realization that I'm always going to be a little different than before Lyme.
Something else smacked me in the face this week. I miss my dog, Dizzy. She lives with my ex-boyfriend, I get to see her but it's not the same. I miss her sleeping in between my legs every night, snuggled in my arms, and laying on my warm clothes that just came out of the dryer. I used to pretend that she had all the same food allergies as me, I did this so I wouldn't feel so alone while trying to figure out why I was so sick. You never feel alone with a dog by your side.
The world is super strange and hard sometimes, things happen for reasons unknown, but it's how you roll with it, that defines your world.
November 16th 2015 marks a year of Lyme treatment, I never thought this day would come. It's shocking to me how quickly time goes by.
Here is a movie montage I made of the past year. I made this movie because I want to show my progress to others who may be suffering through treatment and give them hope. Also, because I'm a huge dork and I want to start learning more aspects of film making. It's 20 minutes long!
AAAAAAAAAnd, I'm getting better! Last year I was sick as shit. I like to use percentages, I'd say I was 30% upon beginning my treatment. This year, after 1 whole year, I can say that I'm about 85%. My goal is to get to 100%
My remaining symptoms are:
-Eye irritation/swelling
-Muscle pain in my neck and back
-Brain fog & brain exhaustion
My doctor thinks most of my Lyme is gone, so we are focusing on Bartonella, my co-infection. My doctor confirmed that another year of treatment is needed.
Nobody really knows why some people get better with Lyme and others don't. There are many factors involved in Lyme disease and the multiple co-infections that can stunt progress. My doctor chalks it up to me being lucky and having good detox pathways, and for someone with a MTHFR gene mutation, that surprises me. I also tolerate antibiotics very well, but require much larger dosages than women my size. She prescribes to me what she would prescribe to a 200 pound man (just as reference, I'm half that).
Overall, I am lucky enough to report that I am making progress in the fight against the unknown. Here are some things in my control, that I believe are helping me to get better:
Eat, Plan, Prepare Healthy Organic Food
Prior to my diagnosis I already figured out how bad certain foods made me feel. I haven't eaten dairy in 5 years and gluten in two. I had adapted a Low FODMAP diet and eliminated my allergens and sugar prior to treatment. Once treatment began I made sure to eliminate all grains and most fruits on top of everything else. I cannot stress enough how important a clean diet is. I truly believe that this is the #1 thing you can do to get better. If you eat foods that inflame your body you are only hurting yourself and foods high in carbohydrates and sugar only feed your Lyme bacteria a 3 course meal. Eating clean also means eating organic.
There were many many days early on in treatment that I was too sick or too tired to go grocery shopping. Sometimes I had help, many times I didn't. In those situations I would do the best I could to get healthy foods in my body. My local Co-op saved me, even to this day, I absolutely do not know what I would do without their prepared foods! Other times,when food grossed me out from all my meds, having friends there to ask me if I ate and remind me to do so if I hadn't is very helpful.
On your good days make sure to go grocery shopping, prep your food and spend a day in the kitchen cooking. Prepare all your food so you have it for the next few days. It takes time and energy and I know you are exhausted but make sure to do this!
Me Time
Since feeling better I have been really busy, but I always try to have some down time doing things I enjoy or things to make me feel good. Going on walks, taking epsom salt baths, cooking, writing, surrounding myself with people I enjoy being around, taking acting jobs, sleeping, socializing, and working out. Allow yourself to do the things that make you feel good.
Another thing I have to remind myself is my #1 mission in life right now is to get better, it has to be my main priority. I get a little excited when my health improves and want to conquer the world, but the reality is that I am still not 100% and I can feel the stress it puts on my body. If I want to be the best person I can be when I'm clear of this shitty bacteria I have to focus on getting better now and taking the necessary steps to get there.
Remaining Positive
So many times I wanted to die. Lyme is not easy and I found myself using my acting ability daily. Early on in treatment I walked around in a heavy fog. It was hard to move, think, drive, work, talk, do anything really. But I did it every single day. The only thing that gets me through the hardest times is knowing that it's only temporary. I would have to tell myself that things will get better, and guess what? They did and they can for you too. Just be positive in your thinking!
Daily reminders are another way to stay positive. Nearly every morning I read a little piece of paper that was from my fundraiser, it's tucked in my mirror, it reads Becky Beats Lyme. Reading that is a great way to start my day. PEOPLE, you people reading this can make a sad day happy for me. If it wasn't for some of the positive reassurance I get from my lovely friends I would not be able to do what I do. So thank you to everybody who tells me how strong and amazing I am, and all the other compliments you give me, it honestly keeps me going :)
I love helping people, I put my nasty Lyme disease out there on the internet not for attention, but to help others going through Lyme disease, or people who have yet to get diagnosed but are looking for answers. If it wasn't for other Lyme suffers exposing there illness, I may have never figured out that I have Lyme disease, because doctors sure as hell weren't helping me. Anybody I touch through my You Tube channel or my blog makes me incredibly glowy, it's why I do it.
This sweet girl with Lyme who is thanking me for exposing my illness and being positive. It makes my heart hurt so good.
Exercise
Even at my sickest I was exercising at 5am! As a trainer in a gym, I was embarrassed how little I could do, once I began treatment, so I worked out at home for the first 6 months. I did only what I could, even if it was 5 minutes of abs, once a week, it was something. When I started feeling better I was able to head back to the gym, there are many times I push too hard. In fact the absolute hardest thing for me during treatment is to hold back. It's incredibly painful to step back when you are watching others push so hard through workouts and life. So many times I cried, I would go into the office mid workout, sit on the floor and cry. I just wanted to be normal again. So take it easy, do what you can when you can and try to be as active as you can be. Don't compare yourself to others. I feel incredibly strong now knowing all of what my body has been through. I'm proud of myself, and want to be an inspiration for other Lyme sufferers. Have a Great Doctor, Someone you Trust
Having a doctor that knows what they are doing is key to beating this illness. Be honest with your doctor and speak up when you feel like something isn't right. Find a Lyme Literate doctor, they are trained differently than regular doctors and can help you to get better. You must do the rest though!
I'm not perfect
I still drink a coffee a day, rarely two. Sometimes I eat something with some sugar in it and I definitely still drink wine, cider, vodka, bourbon, and tequila, in moderation. Every once in a while I buy a bag of corn chips and go to town. I struggle with sleep sometimes and don't always take appropriate steps to detox. I get depressed too, when I start thinking about what Lyme has taken from me over the last 5 years and I cry because I don't know when I can be normal agian. Sometimes I spend my time with people I love when I know I should be home sleeping. I occasionally party like a rock star and stay out all night. I've forgotten to take my pills before and every once in a while I choose to not take my very large quantity, just because. Since starting to feel better I find I definitely overdue it sometimes with my schedule or gym workouts. These things may sound petty to others without Lyme, but I believe they can make or break your success in treating Lyme disease. It makes me happy to feel social and human so I refuse to take everything away, if I go out on Friday, I take good care of myself on Saturday. Finding a balance is important.
I also struggle to remain positive at times. Right now my Bartonella meds are kicking my ass and i'm in a lot of pain. I'm struggling in many aspects of my life. When times are tough i go back to the word temporary!
Overall, if you drink, do it in moderation, take your detox baths, eat organic, lots of veggies, and make all of your own food. Limit starches, don't eat gluten, dairy and anything that inflames your body. Get sleep, have hobbies you enjoy doing, take good supplements and get exercise. Try not to consume your whole life with Lyme. I educate others, and share my story but most people I see in my day to day life have no idea the struggles I've gone through. They see me for me, and if they happen to find out, it shocks the shit out of them and that's the way I prefer it to be. I am so much more than my Lyme and so are you. Even though it consumes our body and have taken over our lives in many ways, don't give it the satisfaction or the attention it wants.
Be bigger than Lyme.
Try to focus on the future, what are you going to do when you are done with treatment?? Have hope that there will be a future where you can live a healthy happy life that is Lyme free.
Maybe you are interested in adapting a new healthier lifestyle, or you're bored and want to get creative in the kitchen. Or maybe you're like me and have a chronic illness that requires you to have a limited diet. Here are some of my modifications, the foods that make me feel like a normal person. All the replacement foods here will be gluten free, grain free, dairy free, nut free, sorghum free and all my other allergens free :) I've also listed some of my favorite places to get recipe ideas!
Replace grains and pasta with:
Spaghetti Squash
Really easy and not too bad.
Zucchini noodles
I allow myself rice about 2x a month, when I do, I eat this, it's so delicious.
Replace bread & pizza with this:
(I am allergic to sorghum which is in most gluten free items, so I cannot use typical gluten free bread things)
This is sometimes too starchy for me. I eat it in moderation.
Expensive, but saves my starving stomach.
I make turkey sandwich, tacos, anything can get
wrapped up in this goodness.
Always use more cauliflower than the recipe calls for.
Try different baking flours, make your own bread. I've used tapioca flour for rolls and coconut flour for bread, the ideas are endless. Nut flours are great to bake with, but I don't do nuts right now.
Don't use sugar use maple syrup or honey! Dairy Substitutes:
This is my favorite brand of coconut milk without guar gum. It's great for creamy soups and sauces and has saved me from going crazy.
Soy milk is the only milk I can drink right now, so this goes in coffee and smoothies sometimes.
No Butter: That's ok, I use a bunch of different oils, for variation. Ghee is not an option for me, but maybe you can tolerate it.
I use mainly these oils:
-Grapeseed oil
-Avocado oil
-Coconut oil
-Sesame oil
-Olive oil
That's all I've got right now, my brain is fried :)
My updated treatment video:
Fuck this week! Here is what I've been listening to.
Just when I felt like an ass for listening to Taylor Swift, Ryan Adams came out with his own version of her album. It made me feel much better about myself :)
When you live in a place like New York and LA, you see celebrities, you even party with them sometimes. It's something that happens and it's no big deal. I've met Kevin Spacey, Tommy Lee, Laura Peppon, Kim Cattrall, Elizabeth Shue, talked shit to Parker Posey, parted with Johnny Knoxville. Waited tables on Andre Agassi, Shannon Doherty, the Culkin brats, Doogie Howser. I've seen Rebecca Romijn, all of the That 70's Show cast, Lindsay Lohan, one of my favs Nicole Richie, Frankie Muniz partied like a rock star, Matt Damon, Ellen DeGeneres totally checked me out, my heart throb Ethan Hawke, (pre, cheating on Uma with the nanny, who cheats on Uma?!), Brad Pitt, a few models. The list goes on, but nobody made my heartbeat pound the way it did at my local Saturday farmers market.
You're never going to believe who gave me this flower!
Living with Lyme disease in Bellingham, WA there aren't many options for support, nobody truly understands what I am going through, let alone even knows what Lyme disease is. In search of someone to relate to, I began seeking out support groups through social media. But what has actually happened, is that I am being reminded 24 hours a day that I have a disease. There are constant reminders that I have Lyme Disease. I'm one who wants to live life, and do the things I once did, only better than before, not sit home and be reminded of my Lyme!
The constant daily messages and posts become less about hope and more about misery, it can be a bit of a bummer.
I strive to move forward and I don't plan on being ill forever.
I have the knowledge and discipline to get better.
Now is the time to focus on success stories, the well, and hope!!
My celebrity, the one who makes my heart race, my inspiration, and where I find my hope is Olympic athlete Angeli Vanlaanen.
We got this...I'm herxing really bad here, from Cat's Claw
After my demanding of lab tests, multiple naturopathic doctors, a few regular doctors, being diagnosed with multiple odd things that I refused to believe, my persistent research, and determination to find out what was wrong with me, I had learned enough about Lyme to self diagnose myself with it. But there was always that:
No, not me?!
That really wasn't a bulls-eye, was it?
Did I see a tick? If that was a tick, that shit was tiny.
Wait, doctors and vets, tell me Lyme isn't in Bellingham.
There was denial until I watched Angeli Vanlaanens Lyme video. I had a change your life forever kind of moment, my heart sank, I cried, and I cried, and I still cry, every single time I watch this video.
To this day the movie gives me an undefinable feeling, it's an emotion that's going to make me a phenomenal actress. Every single thing she says, I had said to myself or others at some point in time. I had Lyme. Sigh, off to get blood drawn for IGeneX.
I was so unbelievably lucky enough to meet both Angeli and her mother Allain!!!!! Permy smiles were all up on my face, the whole time. When I asked Angeli how she was doing, she says she feels great, but the emotional scars take the longest to heal. I get it. It's not just the physical pain you have to recover from, it's the emotional trauma of everything endured on your Lyme journey. Angeli was really sweet and happy. She radiated sunshine and gave me a flower. I was giddy all day, until I broke out in another herx rash ;)
Her mother is a peach and my heart pounded just as hard.
Thanks Angeli for being an inspiration for myself and others with Lyme Disease!
*The last two and a half weeks, Lyme has been kicking my ass, it all started with the side effects of Rifampin. That drug knocked me on my ass, I had to stop taking it due to the extreme fatigue and nauseousness. Food was hard to tolerate and it literally gave me narcolepsy. During times like these, I try to remember all my symptoms that have dissipated, and the moments when I feel great. A year ago, I was at my absolute worst, so scared, confused, and sick. Today, there is progress and I'm fighting hard to regain my health. I want to get better, in every way :)
One year ago today, I left work in tears because my eyes had swollen yet again. One year ago today, I would find myself curled up in a ball on the floor in hysterics. What is wrong with me?! I couldn't take it anymore.
This was my rock bottom, not months later when my world fell apart. My rock bottom was when this illness was at it's absolute worst. Yet the people closest to me were in denial. I was dying, every part of me had been taken away. I traveled to Maine a year ago, from Washington state. Travel was always ridiculously hard for me to do. Making travel plans, immediately put me in a state of anxiety, because I knew half the battle would be getting out the door. Airplanes hurt my joints and made me retain water for days. I felt horrible while visiting Maine, I did everything I could to try to be normal, but normal was something I just couldn't be anymore. I ended up in tears on the last day, hours from having to go back to the airport, on 3 hours of sleep. I just couldn't bare the thought of what the next 24 hours of travel would look like. My body was shutting down and I didn't think I could physically make it back to WA. I wanted to be left in the hotel room for dead.
One year ago today, my brain wouldn't allow me to write or read. Going outside caused horrible allergies, and eating food would result in swollen eyes, stomach pain, and rashes all over my body. Work became difficult, because I found myself slurring my speech, losing my train of thought, and forgetting simple things I'd known for years prior. It was hard to see, because my eyes felt like they constantly had dirt in them and my vision would come and go in blurs. New and scary symptoms began appearing daily, preventing me from socializing. Overall, I was in so much physical pain, and mental distress, I could barely leave the house. If you go back to this blog below, you can review my symptom list. The list had reached it's maximum and my body had shut down.
Looking back to a year ago, a lot has changed, in fact my entire life has changed. Parts of it I don't even remember. Symptom wise, there has been a great amount of change. Here are some things that have improved from a year ago, when I was at my absolute worst.
Last year my skin looked like this:
I had melasma and brown spots all over it, I hated it, it made me very self conscious and gave me anxiety in public.
Today it looks like this:
This was not achieved by Hydroquinone, or any prescription lightening products used to erase dark sun spots. This was achieved by killing Lyme bacteria. So hey, dermatologists out there, maybe try to find the source of the problem, and not try to tell me to throw some shitty cream on my face. I knew even going to visit mine was going to be a joke.
I had a hugely painful, swollen joint that came after eating dinner one night.
I was told I had the beginning stages of Rheumatoid Arthritis???? Hmmmm, not really sure that exists. I even went back after my Lyme diagnosis to tell the doctor it was Lyme, like I suspected, and she gave me a pamphlet to read about a new RA drug that was on the market. Are you kidding me?
Today, my hand looks like this:
-Outdoor allergies diminished. Yes, I am talking about the girl who could no longer ride her bike because her throat would swell, or ride with the car windows down. I went to my allergist one summer and he did a scratch test on me. The nurse got so nervous watching my back, she ran and grabbed the doctor, he immediately had me take benedryl and told me my immune system was going crazy, but he didn't know why. I informed the office staff of my diagnosis later, and I can only hope he learned why the immune system may be "going crazy" on people.
This is before things got too out of control.
-My thyroid is officially balanced! I worked extra, extra hard at the gym, while living with Lyme and never saw any results, now I workout way less, and can see my body change daily. Another side note, for anybody who doesn't see results while working out. Go get your thyroid checked! Including t3, most doctors never check t3, that's what was off with mine. Also, when your readings are on the low end of the shitty, "scale" doctors go by, find a naturopath who will get you on some thyroid meds, it will change your life. You do know that the "scale" system doctors use is a bunch of bullshit, from symptom data years and years ago.
-My hair is almost back to normal! It was severely damaged 3 years ago, and could never bounce back. I had to wear clip-in extensions. For the first time in 3 years, I can leave to house without my fake hair in. Woot woot.
-The big food test. I've been pretty hungry since getting off Rifampin, I can eat large quantities of food lately, and my body is craving things like grains, that I normally do not eat. Generally, this would be a big problem...but lately, I've been experimenting with more foods, and taking risks at restaurants, with no ill effects. Throughout the past 5 years I've come to expect swollen eyes in the morning, stomach pain, and bloating if I eat anything out of the ordinary. This has not been happening lately, so I'm thrilled that there will finally be more foods rotated into my diet!!
-85% muscle pain free. Muscle pain was one of my first symptoms, my entire body was on fire, and I had knots all over. My skin hurt, and if you touched me anywhere, it would feel like a bruise. There were many sleepless nights with back pain. Yes, some may say that was the Fibromyalgia, but not me, I knew that it was just a symptom of something much bigger. Currently, I only get some pain in my upper back and neck, on and off.
-No more anxiety. I didn't have anxiety on the list, but boy was I living with Lyme related anxiety. I've calmed down quite a bit in a year.
-Brain Stuff. There is still brain stuff going on, but it is much better now. I may have a flair with treatment and herxing, but for the most part my brain is ok.
With treatment I do still have herx reactions that bring some symptoms out and make for some bad days. For example, muscle twitching, heart palpitations, light and noise sensitivity, headaches, dizziness, brain fog, tingling in fingers, and eye problems. This is to be expected with treatment and herx reactions. But overall, things have gotten better, I don't feel well yet, but there are good days :)
Every time I go to the doctor, she asks me what my top three symptoms are. I'd say as as of today:
1. Neck and back pain
2. Eye swelling and irritation
3. Brain exhaustion. This one is hard to explain, but it feels like you are functioning on no sleep, but you slept 8 hours. My body is awake, but my brain checked out, kind of feeling. It sucks!
Everything else has pretty much diminished, unless it pops back in for a herx, or for just a day or two.
Now that's pretty good, considering my symptom list from a year ago! So Lymies out there, remember, there was a period where things were much, much worse. It will get better with time, and treatment. If you're at your rock bottom, I'm here to give you hope, that things will get better. I have to remind myself of this DAILY, in order to get up in the morning, and remain positive, in my thinking.
Here is an updated treatment video, minus the Rifampin, that has now switched to another Bartonella killing drug. I'm going to make a video on my horrible experience on Rifampin soon.
Sometimes you just need somebody to tell you everything is going to be alright...But that's for my next blog.
I'm waiting for the day when I get theall clear from my LL. People say you never fully recover from Lyme disease, even Dr. Richard Horowitz, one of the leading doctors researching and treating Lyme disease. The key is to get your immune system to function at a level where it can keep the bacteria under wraps. So you are then able to have your symptoms under control and fight the disease naturally, without medication.
You go into REMISSION.
The scary word that I've been neglecting to talk about. I truly want to presume that all the lil fuckers are gone, but the truth is, nobody really knows.
This is a really great book written by Dr. Richard Horowitz.
This book is meant for doctors to read, but anybody who struggles with their health should read it. There are a lot of people being diagnosed with mystery illnesses, such as Chronic Fatigue, Fibromyalgia, ALS, POTS, MS, Multiple Food Allergies & In-tolerances, Thyroid disease, Psychiatric disorders, Rheumatoid Arthritis, Lupus, and other Autoimmune conditions. If you have been diagnosed with any of these or have symptoms that mimic these conditions, there is a good chance you have Lyme disease or a co-infection of Lyme.
One thing I know is that I can do everything in my control to kill bacteria and once I am in remission, continue doing those things, forever! My LL is a freak about it, she had Late Stage Lyme disease herself, about 10 years ago. I know she's doing well today, because she is running a very busy practice in Seattle, and you can't do that with Lyme bacteria thriving. You know what else she does? Takes really good care of herself! She continues to eat healthy, keeps her body alkaline, and takes the necessary steps to NEVER, if one bug was left, let it thrive and spread. I am going to be the same way. Taking great care of myself prior to my diagnosis was a priority, but Lyme has taken my health to a new extreme and that's something that will always stick with me!
I've begun to start planning my new Lyme free future! I have so many exciting things I want to do. I have been sick for 5 years, treatment could last another 1.5-2 years. I've been feeling better so I'm already going to get the ball rolling, and here is what I'll be doing to better myself during the remaining parts of my treatment:
1. I'm going to start taking classes toward my new major of choice. I contracted Lyme about the the last quarter of my schooling for my associates degree. Even though I was able to take a few classes after that, it really put school on the back burner. When you can't read a sentence, how do you continue with schooling? What's fascinating, is that while sick for 5 years with Lyme, I was able to recognize what I am truly adept at... And guess what? There is no science and math involved!!
2. I'm going to focus on myself. I always thought I was an independent person and I am in many ways. One thing has always eaten at me though...I've relied on people in my relationships too much. I want to be self-sufficient. Nothing can set me up for this more, than what I've been through over the course of the last 6 months!
3. I want to fall in love. Romantic is a word that does not describe me, nor is it in my vocabulary, but Lyme disease has given me a great amount of love. A love for life that I have never had before, and why wouldn't I want to share that with somebody?!
4. I am going to work on me from the inside out. Healthy foods, trying new forms of exercise, making new friends, being alone and being ok with it, helping others, making change, remaining positive, trying things that scare me. I am going to be open and receptive to this world and all that it has to offer me.
5. Get strong! As strong as my body will allow me to get.
6. Keep only the people who deserve to be in my life...in my life. To hell with the others, life is too short.
Okay.......Here is what I'm gonna do when I get the all clear
1. Go to Hawaii! Vacation is not in my vocabulary nor is it something I've done in 12 years. So you can bet as soon as I'm feeling 100% I am going to Hawaii to celebrate. Or maybe travel across Europe?
2. Move. I have no idea where, but moving from Bellingham is something I've wanted to do since arriving in Bellingham 8 years ago.
3. Get new headshots, get an agent, and get back out there in the acting world. I dislike seeing my Lyme symptoms on my face in my current photos. I've got quite the acting resume built, it's now time to see what other challenging roles can be added.
Tan
Not so tan
4. Continue to advocate and spread awareness about Lyme disease. I'll speak for the people who are too ill to speak and march for the Lymies too disabled to walk. The Lyme community needs the continuing support, we are not there yet. We need to know that there is a cure and we need to be able to get properly diagnosed! Chronic Late Stage Lyme needs to be recognized and treatment needs to be affordable. This illness has changed my life forever and it's shaping me into somebody I never thought I would be. There are really low lows and amazing highs, stories need to be told, and hope needs to radiate.
5. Be the best person I can be, physically and mentally, and live life that way too. There is no doubt in my mind that I am going to be climbing mountains and doing back-flips off beams. Late thirties are gonna feel like early twenties. I like the person I'm becoming, I have a purpose in life, previous to Lyme I just freewheeled by.
Thanks girls, for taking a bite out of Lyme for me. I was unable to make it to my friends wedding in Cleveland...So this is what my girls did for me!!!! So awesome, I love them all.
Before I start this post I want to say that I have been feeling phenomenal. There has been lots of downers, (one of which you'll read about right now) to get me to this point, and I know there will be more low points during my treatment. But if my highs feel like this, then I'll take the down days, killing more bacteria! I have been ill for 5 years with Lyme disease. For the first time in five years, pieces of the real me are shining through. It feels unbelievably great to be feeling better, there are no words for it, just smiles. :)
My body has been unresponsive for five years. For the last six years, up until I started treatment for Lyme disease, I used to wake up at 5 am and go to the gym to do fasting cardio, followed by weight training. I did this 5 days a week and I also ate a clean diet of 1200-1400 calories a day, anymore I would gain weight.
Throughout the last five years I've eliminated gluten, dairy, grains, and sugar. Still, my body is unresponsive. Did this frustrate me? Yes. Did I work as a personal trainer and struggle with my own body? Yes. Do I still? Yes. Did I know why my body wasn't working correctly? No. That is until I figured out that I had Lyme disease, which had hindered everything in my body, including, my hormones and thyroid.
My body has a great amount of healing left to do, and my thyroid and Lymphatic system still aren't functioning where they should be. I try not to stress about it, because I know things will get better, but my health has to get there first. It is disheartening, I'm not gonna lie, it's hard to know that I do everything I can physically, and I'm unable to achieve my fitness goals for reasons beyond my control.
I had a bad experience when I entered the second antibiotic into my new protocol for my treatment of Lyme. I had my first herx reaction from hell, and I broke out into a horrible rash all over my body. If you are unaware of what a Herxheimer reaction is, head back to this post. http://brewlifewithlyme.blogspot.com/2015/03/lets-talk-about-herxing.html
This happened because I was not detoxing my body like I had been previously. I wasn't taking the best care of me; pushing myself too hard at the gym, nearing passing out on several occasions. I stopped taking epsom salt baths, wasn't drinking enough water, and wasn't eating foods that heal. I know this wasn't an allergic reaction, because I made sure to do my trusty scratch testing. Below you can view my scratch test for Amoxicillin.
This is only a 2 on my scale.
With every new challenge that arises in my treatment for Lyme, comes a lesson. I'm always trying to figure out the lesson from my Lyme. I believe that certain things happen to certain people at definitive moments in their life. Lyme found me in the field, and it sent my life on an entirely new path. I can be pissed about it, or I can take this experience and grow from it. Once I've crawled my way out of this hole, I will be a changed person, I already am. My Lyme lessons will be with me wherever I go.
The video above describes my feelings about this rash, and what exactly was going on with my body.
Below are a few photos.
By the way, I feel fucking amazing. I am killing those lil fuckers.
There is a lot of superficial in life.
I work in an industry where taking selfies in front of a mirror is the norm, people put sole value on their external appearance. We all know that external beauty fades and I'm lucky enough to experience my body in a completely different manner. Having an illness like Lyme disease, does that to you, it takes away all control, and weird bacteria take over. The saying, "you are what you eat" doesn't apply to me, because I have lil spirochetes eating away at cells, collagen and entire systems within my body. That's one of the first things I remember feeling when I knew I was sick, but didn't know with what. I remember feeling as if aliens had taken my body over, I had no control. When your entire body is infected and not functioning properly, you begin to see the human body for what it is, not just a nice ass and a hot pair of shoulders.
If this rash could happen to me because I wasn't taking the necessary steps to detox my body, it got me thinking....How else am I damaging my treatment and overall purpose to get better?
As symptoms started to improve, I began to overdue some things and became a little too nonchalant about my current health situation.
I'm learning to find a peaceful balance, but it takes time, a little trial and error, and a lot of love. Self love.
Don't overdue it, only do what you are able to physically.
If I overdue it, you can find me on the bathroom floor, puking...and where is the self love in that?
I have had enough large needles shoved in my ass, that I can now share with others some tips, if you are about to receive IM Bicillin injections.
I have a pain tolerance of a superhero, so to me most of the time, these are not painful. They are uncomfortable and sometimes, if you go through an artery it can result in pain and a large bump.
Overall, the pain I feel daily, and the pain I have felt over the course of the last five years is far greater than these IM Bicillin injections. In fact I enjoy getting these, because I know how much they are helping me. There is always a little bit of nerves before a shot, because I never know if it's gonna be a "stingy one" or not. Currently, I go to a separate Dr. than my LL to receive the shots and I get them by a handful of different nurses.
Here's what I've learned...
1) Be bossy, you are about to get a 2 inch needle shoved in your ass, deep into the muscle. Know your stuff, and tell whoever is giving you the shot exactly where you want it, and how you want it done. Trust me, they love you for this. My nurses tell me often that they wish every patient was like me, because I know my stuff. I know what I want, and I know how I want it done, and where, every time I go in. If you are going to a regular Dr. for these, most nurses have never injected Bicillin, this is also an opportunity to spread awareness. So let the nurses know why you are getting Bicillin injections and how they help you. Talk about your experience with Lyme disease, they are in a position where they can help people, so EDUCATE them!
2) Warm up the Bicillin. It is stored in the refrigerator so it's cold and when it's cold you kind of feel a pressure building up during the shot. You may also feel the medicine travel down your leg. Warm the medicine in your hands, it doesn't take long.
3) Inject slowly. The slower the better with this medication, it is really thick. If injected quickly, you feel a lot of pressure and radiating pain afterwards. I had one nurse inject it in 4 seconds, this was after I told her it's way less painful to inject slowly. It was horrible, I didn't know if I was about to puke or cry after the injection; I cried.
4) Apply light pressure with your hand, if the shot felt more painful than usual. A vet friend told me the needle probably went through an artery. You need to mend the damage, if you roll it out on a foam roller right afterward fluid leaks out and a large bump may appear. I'm talking about a bump the size of a golf ball. I made the mistake of rolling really hard on a foam roller after a few painful injections, only to develop the golf ball bumps. It wasn't until I started to apply light pressure to the"stingy ones" that they turned into little marbles under the skin, rather than large balls.
The golf ball hiding in my ass.
5) Jump rope afterwards! It gets the medicine flowing.
6) Lightly massage the area around the injection afterwards, to spread the medicine.
7) Roll your butt out on a foam roller, not immediately afterwards though. Wait a little while. This breaks up the scar tissue that will start to develop.
8) Rotate injection sites
(Sooo many people viewed this video)!!!!
(I made another one, with music and a few side notes)
I have not done the shots in the shoulder because the needle is too long. Also, I have not done the thigh. I've stuck with the ventrogluteal and dorogluteal muscles. To rotate sights, you do, upper right, upper left, lower right, lower left. Repeat. Keep track and inform the person giving you the shot, where it needs to be done.
9) Clean the area with alcohol prior to injecting, wait until it drys, inject the needle. Aspirate! You must check for blood. If you don't do this, you could inject into a vein or artery, and that would not be good.
10) Heating the area afterward and walking around to spread the medicine after the injection. I stopped heating mine, because I usually went to work directly afterwards, but when I got to work I would jump rope and apply light pressure to the area. Heating helps the injection site feel better.
11) Ignore the weird comments, the injector says to you. They will say things like...
"Wow, this is a long needle" (right before they shove it in your ass)
"I have never done this before"
"This medicine is soooo thick, it's not going in"
"I really can't believe how thick this medicine is"
"Does it hurt"
"How long are you doing this"
Don't ignore these comments, because they make good comments too.
"Wow, you are so strong"
" I don't know how you do this" (because I'm a bad-ass that's why)
" You poor thing, you just stay here as long as you'd like"
"You really do so well with these"
"I thought about you the other day in a conference"
"You did a great job"
"I wish all patients were like you"
12) Find the biggest guy or girl at the gym and ask if they have any tips for you. :) Steroids are injected the same way, and I received some of my most valuable tips from a gentleman who injects steroids.
If you get a large bump, there is nothing really you can do about it, other than avoid hitting it. The golf balls are pretty painful to touch, but go away in a week.
Good luck with your injections!
I find that these shots have given me more mental clarity and more energy. I have done them for about 3 months and I am currently in the process of stopping them. I'm moving on to my next level of treatment...dun...dun...dun...
Here is an updated treatment video that goes into my new treatment plan.
