For those of you who aren't familiar with NEDAwareness Week (proper name: National Eating Disorders Awareness Week) and are wondering what the heck I'm talking about, you can either click here for the entire website about the occasion or you can continue to read here as I express my thoughts, testimony, feelings, and various other things as they pertain to this week.
No, this isn't primarily Lyme-related, but there is a connection that will come at some point, and even though the focus isn't solely Lyme & Co, I still feel it's important to write about because it is/has been a very big part of my life for a long time, and as I've said before, I tend to be transparent when discussing issues I deal/have dealt with because I truly think that's one way to reach people and spread the message that no matter what you're facing, you are not alone and there is hope.
NEDAwareness Week (henceforth referred to as NEDAW because it’s a lot easier to type) has been a very important week of every year for me for nearly a decade. My first official participation in NEDAW activities was in 2007, my senior year of high school, over 3 years into what would eventually become a 10+ year battle with various eating disorders (the 3 previous years I had only participated on a small, personal scale, not involving anyone else). 2007 was also the year I first began giving public speaking presentations on awareness at local high schools and garnered attention from our local newspaper about the events we held that year.
Throughout college, NEDAW was something I looked forward to every year. Being an officer in a small-but-awesome group who took on the responsibility for the NEDAW activities on campus each year, I always felt more energized and more connected during this week than any other, and my passion for public speaking grew exponentially every time I was able to speak to another group of high school students. I continued to do the presentations throughout the year, whether it was NEDAW or not, and this was true after I graduated college in 2011, as well.
But this year, for the second year in a row, I’m faced with the reality that I can’t give my presentations, I can’t drive/walk around town and talk to business owners and plaster my awareness posters on their windows/bulletin boards, I can’t organize a guest speaker, I can’t even travel the 20 miles it would take to attend NEDAW events at the college closest to my home because even if I could make the ride/drive, I wouldn’t be able to sit through an entire discussion or presentation without worrying about a weird symptom flare-up/falling asleep because of severe fatigue/a sudden-onset herx reaction (past posts have dealt with this phenomenon).
So obviously, when I look at it like that, the first thoughts I have are of the negative and defeatist nature. And that’s no surprise, because when I go back and read the previous paragraph, one word leaps out more than any other--can’t. (And goodness gracious, I could go on and on about how I hate that word, but that’s another post in itself.)
Yes, the reality is I truly can’t do those things this year, and that hurts on a very deep, emotional level. But, thanks to the social media era in which we currently live, I can do things like write this post and connect with people from around the world (because even though this is awareness week in the U.S., this entire month is commonly accepted by those who champion the awareness cause as eating disorders awareness month), and that is still pretty daggone cool!
If you haven’t known me for very long, or if we’ve not been friends (in real life or on social networks for a decent length of time, you may be wondering why exactly I care so much about this week. I’m hopeful your curiosity will be satisfied in the following paragraphs.
As I type this sentence, it is 1:52am on February 24. I am wide awake, as is the case typically 3-5 nights a week—honestly I probably won’t be able to sleep until the rest of the world is up and working, and I typically attribute this to Lyme & Co and the wonderful annoyingly frequent day-night reversal Lyme & Co causes for so many people fighting this battle. Tonight I think it’s something different, though. I think God has kept me awake for 2 reasons:
1. So I can write this post just in case I’m unable to write/share later, and in doing so share my personal testimony of why this week is so important, and
2. So I can spend quality time with Him, something of which we all could use more.
As for addressing bullet point 1, I’ll be as succinct as possible, but be warned that’s difficult for me when writing about something that incites such a level of passion and emotion. But I promise I’ll try.
There are times in my life (ie. The past decade, particularly before this Lyme craziness had a name and was at the forefront of my mind in all things health related) where being wide awake at now 2:08am would have been due to various aspects of struggling with an eating disorder. Through personal experience and relationships, I’ve decided insomnia is a universally shared symptom among most, if not all, eating disorder sufferers. Whether my insomnia was due to any specific eating disorder behavior (I won’t list them here because I don’t believe that’s helpful to anyone), or whether it was a result of the physical and mental state the behaviors ultimately caused and my uncanny ability to lie wide awake having a conversation with Ed (eating disorder, for those who aren’t familiar with the acronym/personification) about everything I did “wrong” that day or everything I must “fix” the next day, or whether it was a combination of these as well as the fact I was in high school/college/newly married/new to the work force, I honestly can’t say. The only thing I know for certain is that insomnia and Ed are BFFs. Meaning, not only was I constantly plagued with eating disordered-thoughts and battles throughout my days, but also throughout a majority of my nights for roughly a decade.
But while the insomnia apparently deserved its own paragraph, it’s merely a segue into a much larger scale aspect of my eating disorder/recovery story. As I mentioned above, Lyme & Co gets most of the blame for my sleepless nights nowadays. This is bad in that the nights where I get literally zero minutes of sleep seem to be at an all-time high, but I’d rather focus on the ways this is a good thing, and how it relates to the overall picture of my life.
Since being given my official Lyme diagnosis in June of last year and continually learning about everything that goes with it, Ed has taken a back seat in my life. Meaning, while Ed still sometimes puts thoughts into my head, especially if it’s a day I’m already feeling emotionally frazzled, they don’t dictate how I live. Yes, there are days where I’m reminded of old thoughts/habits, and even days where I’m put in situations where I have to face things that formerly would have sent me into a downward spiral in all things Ed-related, and these things/situations still aren’t easy. But you know what is surprisingly easy? Ignoring anything Ed tries to say. Because I’m currently in a situation where, if I listened to Ed or let him dictate my actions, I wouldn’t be doing a fraction of the things I currently have to do to beat these illnesses (Lyme, et al.), and if I weren’t doing everything I’m currently doing as part of my treatment protocol, my chance of healing, or even staying alive, would be seriously diminished.
One cool thing about all this is I’ve realized it’s possible to ignore Ed and live a life where my every move isn’t dictated by him, and I have no desire to go back to the way things were. Ever. Because I enjoy, and deserve, this freedom from the dictatorship Ed ran in my life for over a decade.
I’ve written before how living with a chronic illness can change your priorities and outlook on life, and while I wouldn’t recommend lying in a tick-infested area and praying you get infected with Lyme & Co as a viable or safe recovery strategy, it has essentially been the best thing that has ever happened to me as far as my recovery from Ed goes.
Because when faced with the choice to either dig in my heels and fight as hard as I possibly can to get my health and my life back, or to continue to hang out with Ed and do further damage and making regaining my health and my life an impossibility, the choice doesn’t really seem all that difficult. In fact, in my mind it’s not even really a choice, because choice implies there are two possible options, and the second scenario isn’t even an option. And while it took being faced with these new health battles for me to fully realize this truth, I’m writing about this here, where everyone can see, to offer hope that a life outside of Ed is possible, no matter how long you’ve been in the trenches, even if you’ve thought for years it isn’t.
I didn’t choose to develop an eating disorder all those years ago—after all, no one who has an eating disorder chooses to have an eating disorder, because eating disorders destroy lives in every conceivable way—but I can make am making the choice to continue to live the rest of my life outside of Ed’s tyrannical reign.
Because I can.
First off, Happy Valentine's Day! I hope everyone is tolerating this full moon as well as can be, and hoping that some may be having an unexpected good day! Or even an expected good day, because let's be real, sometimes expecting good things--and then having them happen--is sweeter than the gluten-free, dairy-free, sugar-free candy we Lymies can eat! ;-) But in all seriousness, I know some people enjoy Valentine's Day and others aren't such big fans, but I hope for every single one of you there is at least one thing that brings a smile to your face today.
I realized a couple weeks ago that I never actually posted an in-depth update about my first appointment with my new doctor--who is an absolute Godsend--after aforementioned appointment in December. Sorry about that. In the interest of not making this a doubly-long post, I'll just say this: I have never felt as confident with any doctor I've had in my entire life as I do with this doctor. He's truly brilliant, a wonderful man of God (who prays at the end of every appointment), cares genuinely about each and every patient he has (that first appointment was 4.5 hours long!), and I have zero doubt that we are finally in the right place and that God is going to restore my health 100% through the hands of this doctor.
That being said, after that first appointment 2 months ago, we didn't immediately start treatment. Instead, we had several tests sent off that I hadn't had before (believe it or not!), and we re-worked my supplements/added new supplements and started me on a 28-day detox that was one of the single best things I've ever done as far as improving my cognitive function--I can actually hold conversations a lot of the time, now, and I lose my train of thought/say the wrong words/phrases much less frequently! I mean, I did call my pillow a "pillendar" last night and not realize it till after the fact--and I have no idea where "pillendar" came from--but at least it was funny. ;-)
Anyway, I had my second appointment (well, technically my third because we had a 45-minute phone consult mid-January to address some concerns I had) on Tuesday, February 11th, and it was every bit as encouraging as the first. Mainly because....drumroll please....we are starting treatment!
We found out that in addition to Lyme I also have chronic, active Epstein-Barr virus infection as well as mycoplasma pneumonia. My doc also strongly believes Bartonella is at play, even though the test didn't come back positive (we all know how "reliable" the tests are), so as of now I also have a clinical diagnosis for that. That means there are currently 4 known "heavy-hitters" as far as illnesses we know we'll be treating long-term.
We're attacking the EBV first, because it will be the "easiest" of the 4 to eradicate--and will also probably be the shortest course of treatment, averaging around 6 months. Then we'll tackle the others one at a time, with Lyme most likely being the last target. Kind of like taking care of smaller student loans before you pay off progressively bigger ones. Get the front lines taken care of so you can go after the big guns. Similes and metaphors, yeah!
The treatment method we're using is outside the box as far as standard methods go, even among chronic Lyme & co believers, but I truly have complete faith that this is the right treatment for me. I know long-term antibiotics, oral or IV or both, are the paths many choose to take, and I believe that's the right course for some people, but I couldn't even tolerate and make it through 30 days of doxycycline several months ago so I don't believe antibiotics are the right choice for me.
We're going to be treating each infection with Series Therapy formulas from Deseret Biologicals. Basically the idea behind this (DesBio, for short) is the same principle as receiving a flu vaccine. For years (likely 20 years or so for some infections), my body has had these different viruses and bacteria taking up residence in every tissue and organ that exists. With the years of super-strong IV, injectable, and oral medications to treat what we used to think was just JIA, as well as the many other prescriptions I've been on (the list is embarrassingly long, as is the case for most of us), my immune system became suppressed so much that it doesn't recognize any of these bacterial/viral organisms as foreign invaders, meaning it's unable to attack and fight them off and heal itself right now. With the DesBio Series Therapy, I will actually be drinking vials every 3 days that contain varying doses of the actual disease itself. It sounds scary, but basically the thought is that by introducing [disease X] into my system in pulsed, concentrated doses, my body will actually start to recognize the bacteria/virus as something bad that needs to be attacked. And once it starts to realize that, it will go after all the bacterial/viral organisms of that type that have built up in my body through the years. Meaning my body, itself, will be doing the killing of the organisms. Which is just super cool to me, and which will spare my super-sensitive system to some of the intolerable damage/side effects I know I, personally, would get with long-term antibiotics, just based on the few weeks I tried doxy in the fall.
So Wednesday night I took my first vial of the DesBio EBV series (I'm actually starting out at half doses for the first couple weeks, so I just took half of the first vial and will take the second half tomorrow, Saturday), and I'm eager to continue. This type of treatment is long-term and causes herxes just like antibiotics or some herbals do, so in that way the process is very much the same, but I have complete confidence God is going to use this as the method that will bring deliverance from disease and restoration of health, happiness, and LIFE!
If you took the time to read all that, you deserve a medal! And, as always, whether your battle is Lyme & co's or something completely unrelated (because we all have battles of some kind), know that healing, deliverance, and hope are always within reach, even when things seem impossibly hard.
And this modern-day version of the hymn "Just as I Am" with the added chorus by Travis Cottrell sums it up perfectly and always gets my mind in a place of comfort, encouragement, and hope. Give it a listen.
"I come broken, to be mended, I come wounded to be healed. I come desperate to be rescued, I come empty to be filled. I come guilty to be pardoned by the blood of Christ the Lamb. And I'm welcomed with open arms, praise God, just as I am."