Sunday, November 15, 2015

One Year of Lyme Treatment

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. 

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.

Here is my one year treatment video

My songs of the moment:

Thank you so much for reading!