As I type, I'm sitting on my bed, on the eve of my thirtieth birthday, the last day of my twenties. That feels very weird to write. However, I want to get one thing out of the way before I say any more: I am NOT upset about getting older, and I will never utter the phrase "this is my second/third/fourth 29th birthday," because, quite frankly, that's a ridiculous societal expectation and custom and I refuse to engage. Turning 30 (which yes, I know is still young) is a reason for CELEBRATION! I've been alive for THREE DECADES. I'll elaborate more below, but I wanted to say from the outset that my title to the post is not one written in desperation, but merely in reminiscing, as I approach what is a major biological age milestone.

The short answer is: life, and a lot of it.
But I don't want to leave you with that answer alone. I want to recap (and condense as much as possible, even though there's an entire decade, here) and make note of some of the significant things that have marked this third decade of my life, which I can't wait to officially celebrate tomorrow.

The first two years of my twenties were both amazing and difficult. I turned 20 my sophomore year of college, and while I was in the middle of many eating disorder relapses that year and every year in college, AND while I had the campus security on speed dial for late-night ER runs due to my (at the time) "Juvenile Idiopathic Arthritis" (which we now know DOES have a cause–undiagnosed chronic Lyme disease), I truly loved my college experience. I can't put into words just how much, but I did try one year. You can read more about that in the post I wrote here. My college years gave me some of my most treasured relationships, as far as friends go (Roger gets his own sections), and I got to immerse myself into the English language and dedicate my time to studying English and Creative Writing as my major and minor, respectively. (I also have an Education minor, but the program is not currently offered)

I also was fortunate enough to be the head of a couple campus organizations my junior and senior years: the BCM (Baptist Campus Ministries), and BALANCE: a club where we strived to engage in the campus community promoting messages of moderation in all areas of life (including moderation), and healthy living, body acceptance and diversity, and we always hosted all events during National Eating Disorder Awareness Week each year (usually a speaker one night, and other activities and screenings at the health center during the week).

I also was constantly spending time in the student health center, whether it be due to my weekly therapy appointments, periods of time where I had weekly weigh-ins with the nurses because they knew my mind was disordered and couldn't be trusted when I started letting things slide even a little, or due to the fact I caught every "muggle illness" within a large radius of our campus (including H1N1 my junior year). A few times I was "threatened" (for lack of a better word–I was upset at the time, but I now clearly see it was for my good) to be sent home before I could finish the semester because I had let my disorder take over and was deeply entrenched in relapses. Thankfully, the one time I did actually get sent home early, it was close to finals and I was able to complete them without actually having to withdraw.

These are not proud moments for me, and there are many more things I could say on this topic, but this post isn't about my eating disorder in college, or even just college itself, this is about my twenties as a whole. I do want to mention the most amazing thing about my college years, though: Roger! We dated all four years, we got engaged my junior year (October 15, 2009), and we got married on June 18, 2011, three weeks after I graduated in May. Having Roger in my life is not only my biggest blessing today, but it has been since the day we started "officially" dating (September 4, 2007), and having him to lean on, and to help guide my back to the right path when I was slipping with my recovery (even if it meant emailing my mentor himself), is probably the way I was able to make it through periods I otherwise may not have.

Above all, though, we had FUN! We made each other laugh (some things never change), we knew from the start that it was meant to be. We went ice skating when he'd come visit, we'd watch several movies over the course of a weekend, we'd walk around my small college town, we'd have fun in the ocean when our families were at the beach on vacation, we listened to music, watched TV together, went to premieres, had fun just being together (again, some things never change). We smiled far more than any of the above difficult moments, and it's extremely important for me to note that, because I love this man with all of my heart and more.

Once we got married, things weren't easy. Three months into our marriage, I had to go to my third treatment center, because the sheer number of changes in life (even though they were positive) sent me into a tailspin of a relapse faster than I could have imagined. So we spent 5 and a half lonely weeks apart, other than the week he was able to visit me in Chapel Hill while I was in UNC's Center of Excellence for Eating Disorders. We made it through, by the grace of God, and we had a great first Christmas together and I've avoided such a major relapse since, also by the grace of God alone. And also with Roger's support, and other life circumstances.

At age 24, I started this website, along with the @lymeislame Twitter page (and eventually our YouTube channel and Instagram feed), so a lot of the specifics over the past 6 years are chronicled in some way shape or form online, but some are also worth mentioning here, if for no other reason than this is cathartic, and typing it is temporarily helping my tears stay in their ducts, which is ideal, because I need to see the computer screen clearly to type. Also, there may be pieces of the narrative that have never been shared in this way, and I'm sharing my life here.

In February of 2012 (age 23), something medical-timeline noteworthy happened. I first got diagnosed with mononucleosis, and received a simultaneous diagnosis of strep throat. The strep diagnosis was a familiar one, but the fatigue and lack of appetite that had surfaced that led us to go to the doctor and uncover what was going on...to a point. We didn't know about Lyme quite yet, so we didn't realize I actually was dealing with a resurgences of what we now know are a chronic systemic strep infection, along with chronic active Epstein-Barr virus. But at the time, we just waited it out.

​I was feeling better enough to start working at a retail eyewear store in May 2012, a job I kept till the following January, when Lyme finally sidelined my life as it was, and eventually put me on my current path. Since my 18th birthday, and through my early twenties/June of 2013 (when we learned the truth about Lyme), I was on monthly infusions for my "idiopathic" arthritis Remicade for 5 years, then Orencia for 8 months, then finally Actemra in 2013, all immunosuppressant drugs, the lattermost of which being the strongest suppressant, and the reason Lyme was finally able to rear its head and make every system in my body go haywire as we searched far and wide for answers, before finding them that June. (Yes, we still search for specific answers as issues arise, but we at least know the major underlying factor, and it's a much different experience).

I was on the infusions the entire time (a whopping 8 months) I worked at the store, and even then, my last few months required my using a cane because it was becoming increasingly difficult to walk. I was 24. We then entered a long period of trial and error and finding answers (and some tests I never would have believed had I not had them done personally) across the country before we finally saw a doctor who was able to get to the bottom of things and let us know all about Lyme, causing me to cry tears of gratitude for having an answer, but also leaving me unable to sign off on my paperwork, because by the end of the appointment, because I couldn't remember my name or how to form letters when they were told to me. Thankfully that part of my brain has improved due to dietary changes and changes in medications and supplements and lyme treatment, other than when I'm having a bad brain fog neurological herx and I can't speak/communicate/physically connect my thoughts to words.

I'll try to avoid overlap here as much as possible. Like I mentioned above, much/most of my Lyme journey from the point of diagnosis onward is chronicled here on this website, and you can read it at your own pace if you decide you want to, so I'm instead going to focus less on naming the diagnoses (chronic Lyme disease and many coinfetions and other conditions) as much as I can, to talk about life the past 6 years.

Living a life as a young couple in which one is chronically ill and dependent on the other for nearly everything in life is not easy. Roger didn't sign up for this when we got married, NS I didn't sign up for this when I was born, either. We both did, however, promise "for better or for worse," and "in sickness and in health," so even though we didn't know this journey lay ahead, we made that fundamental commitment to each other, and I acknowledge I have my biggest blessing in my husband who is not only committed to me and shows me love every single day, multiple times a day, despite how I'm feeling or how well I am or am not functioning, and who loves the Lord and serves Him weekly at church and in daily life throughout the week, as my husband and as an educator. I have never once truly doubted Rog's devotion, and that's something I don't take for granted. I've never truly had to wonder if he was going to leave me due to illness, because he's made it clear time and again that will never be the case. Better or worse. Sickness and health. He's the living embodiment.

Even still, it's not been easy, the past nearly six years (ages 24-almost 30) and everything that has come with them. The constant trips out of town to see my doctor, the daily grind of working his "real" job and then coming home to another full0time job of caregiving. It's not easy when we think of the things we "should" (oh boy, do I hate that word) be doing, in our minds, at our ages. We both long to start a family, but know that's not a realistic thing right now, and that gets harder with each passing year. We want to be able to take even just a weekend trip together and not have to pack 6 suitcases full of medical equipment or worry about health. We want to be able to walk next to each other, holding hands, without a mobility aid necessary, we'd settle for that.

It's not easy when most of my days are spent flat in bed, in the dark, due to any number of symptoms, almost always primarily led my the 24/7 headache that hasn't gone away once since at least January 20, 2013, or by my type 2 Trigeminal Neuralgia (facial pain, formerly nicknamed "the suicide disease" because so many take their lives due to the severity of the pain. It's not easy needing your husband to carry you from the bed to the couch because you can't even crawl on your own. It's not fun depending on a feeding tube and central line to my heart to stay alive. It's not easy when I have to miss all of Roger's band concerts, or when we can't attend church together, or when I have emotional breakdowns multiple times a week because I want Roger to be able to live a life free from worry and I want to be healthy so illness isn't something constantly on his mind. I could go on, but I won't. It's not good for anyone.

It is, however, extremely easy to get caught up in, and obsess over, the things that have not been easy. And that's one of biggest lessons I've learned about life in general as we've navigated this Lyme and other chronic illness road (chronic illnesses including the still-present eating disorder voice in my head, even though I'm doing better with it than I have in the past, which is encouraging for the future): it's easy to ruminate on the things this illness has stolen from me.

It's very easy for me to sit here and say "Lyme and illness have stolen my twenties," and allow myself to be consumed by the inevitably negative thoughts that follow. It's easy to let my mind focus on what I don't have and what I, and we, don't or can't do because of illness, but like I said above, this also isn't worth elaborating further. The bottom line is: it's easy to focus on the negatives, especially when it feels like my nearly-over twenties have been defined by being sick (whether from my eating disorder, or from Lyme and friends), and when I get overwhelmed by the things others my age have accomplished in life, wishing I were in a different position.

To quote Robert Frost, from his iconic poem, 'The Road Not Taken' (bolded lines specifically)

If I've learned anything over the past 6 years, I've learned the road less traveled by comes with many bumps, twists, hairpin turns, screeching halts, and detours, but I've also learned that without all of those, it's impossible to appreciate the good amidst the trials. The road less traveled in chronic illness is, I believe, one in which we choose to respond to our circumstances not with negativity (this was my previous default-mode for myself, though not for others), but with an open heart and mind, allowing ourselves to grieve for the losses we feel in our human hearts, but also looking and listening to those losses for lessons – loss lessons – as we continue to move forward and fight another day for life. The road less traveled is one where we take control of our health and don't let it define us, but rather use it as a means to connect with others who may need to hear things only we know from our own individual experiences.

The Road Not Taken could, intentionally or not, be somewhat taken as a loose parallel to the Narrow and Wide gates referred to in Matthew 7, verses 13-14, with the road less traveled mirroring the narrow gate.

Now, Jesus is speaking about entering God's kingdom, and resisting the urge to follow the broad path (the path traveled by the crowd, because it's easy in this life), so the circumstances here aren't the same as Frost's roads diverging in a yellow wood, but the concept of choosing the narrow gate and the road less traveled is just too good an analogy for my literature-loving self to not acknowledge it. The difference, however, is that one is directly spoken by Jesus, and instructs us on how we should live this life. This is one tine passage among many, but it does let us know that the narrow gate may not be an easy path, but that the suffering(s) we will encounter along it as followers of Christ are for our sanctification, the refining of our faith, and the strengthening of our ability to let go and truly let God take the reins when all our human side wants to do is control things ourselves.

I am not going to get into this topic in-depth right now, because it merits an entire post (or series of posts) itself, but I want to share something I've noticed in the chronic illness community, largely online, since many of us aren't able to be out in the world. Everyone wants to be "fixed." Heck, I want to be fixed, I truly do. I want to be healed. If God let us create a single pill that could solve all my health issues and I could take it and become the perfect picture of health, that would be awesome! Could God do that? Absolutely. Has He done it yet? Nope, and since we can't have any idea if any such thing ever will happen, we do our best to manage and heal with the methods and modalities He has given and revealed to us.

But here's the kicker: we can do EVERYTHING within our power, try EVERY treatment we can find and get into our hands/bodies, go through EVERY program that promises to heal XYZ if you only follow steps ABC for [number] of days, read EVERY book on health and self-help that exists on Amazon or in our local library, and HEALING IS NOT GUARANTEED. At least not guaranteed in the way we like to believe it is, on this earth.

I'm in no way saying I think God is going to leave me sick for the rest of my life. I'm also in no way saying God is going to heal me 100% in this life. I can't say either of those with any conviction, because my mind is not God's, and His ways are so far beyond human understanding we can't begin to comprehend.

A good rule of thumb to follow is one I've discussed with a friend, and one each of us has heard throughout our lives (I'm sure many of you will be familiar, because it's not an uncommon saying): If something seems too good to be true, it possibly, and even probably (almost definitely) is. As a Christian, any time I've let myself put any amount of my faith in a program itself (this happened unknowingly with a popular brain retraining program I did in 2016 and cannot recommend any more), or into anything other than Christ and God's grace and promises, I notice things in life just aren't going well. Not just health-wise, but in every area. However, once I realized that anything that's not of God has no actual power to help me, I have felt freer, and healthier, than I have in years, despite that not yet physically being the case. I'm spiritually healthy and that helps inform every other area of my life, including my physical and mental health.

I'm not talking about medical devices and similar proved things/aids–those are innovations God has given man the knowledge to create to help us have a better quality of life and lifesaving treatment when needed. But I'm talking about anything created by a human that promotes the idea that either 1.) the object/words/program have the power to heal you if you just follow the steps and try hard enough (insert eye roll), or 2.) we, as humans, have the ability to speak things into existence (e.g. "manifesting" our own healing). One of the greatest threats to Christianity today, and Christians ourselves, is the pervasiveness of the following message in our society:

"You can/will be healed:
if YOU do XYZ 
if YOU try hard enough
if YOU pray enough/the 'right' way
if YOU just believe 'enough'

God doesn't heal you because you manifested your healing yourself by speaking it aloud. God doesn't heal you based on how hard you try, or how much or how "hard" you pray, or your exact degree of belief (yes, faith is required for Christians, I just mean He's not concerned with its usage as it is in the above example of a toxic, dangerous societal message). God also often doesn't heal us in the timeframe we would prefer, but we have to keep in mind that His ways are not our ways, and His way is always the best way, even if it takes longer for healing to come, or, sadly, even when healing sometimes doesn't come in this life.

​I also think it's worth pointing out that just because someone may not receive physical healing in this life doesn't meant that person can't have complete spiritual healing and be at peace with anything God allows to come their way while alive. We don't like to think about the possibility of not having physical healing, but the reality is that Christians can have a joy and peace only found in Christ, even amidst seemingly insurmountable, tumultuous circumstances, and even when there's no end in sight.

Going through life-altering trials, especially early in life or early in marriage, has a way of changing the way we look at the world, and how we respond to the challenges we face result in either a pessimistic view of the world, or one of optimism, despite troubles and circumstances. If you know me, or have read any of my posts or seen our vlogs, you probably know my faith in Christ is the driving force behind why I'm able to keep fighting each day, and it's what gives me a reason to embrace each day I AM alive, because without God's grace, there are times I medically probably shouldn't have lived, yet I did, and I'm here, and I refuse to take any moment of this life for granted, because tomorrow is never promised.

My faith is in God alone, the Creator of the Universe, and the One who knew me by name before the very foundations of this world. The One who created me in His own image, and the One by who's grace I'm alive today. And I wouldn't want it any other way.

I may never be able to answer this question satisfactorily, other than to say: they passed. As of tomorrow, they will have passed and be a thing of the past. That's both scary and exciting to say.

One question I can definitively answer, though, is "What happened IN my twenties?"

When it comes down to it, the answer lies in the word and concept of change, but I didn't change in my twenties of my own accord. God has been changing me throughout the past decade, as He has throughout my whole life, and He's particularly been hard at work the past several years, revealing  things to me in His time, and giving me a peace I never knew was possible to have in my soul, regardless of what life looks like from the outside. Regardless of the things society tells me I "should" be able to do or "should" have already done by now.

God has used my twenties as a refining fire of the hottest kind, and while we still don't know what lies ahead, I know the One who holds the days ahead, and He's the same One who holds my life in His hands. Every moment of every day. He has also used these past several years to draw me closer to Him, and He's instilled such a passion for theology and a love for the His Word that I may not have otherwise had, at least until later in life.

What happened in my twenties?

Through all the fires, God changed me.

I can't wait to see what He has in store for the next decade of life, if I'm granted that blessing, because I know no matter what, all that has happened already, and everything to happen in the future–every bit of it will be used for His glory. That alone is enough to assure me my suffering in this life is not in vain, because my main objective in life is to glorify Him, which I can do bedridden as much as anyone can in any other situation in life.

Thank You, Lord, for twenty-nine years on this earth.

​Come tomorrow, I will be celebrating my three decades with joy and peace that passes understanding in my heart, not dwelling on things I don't have, not putting my faith in anything but Jesus, giving Him ALL the glory for this beautiful, messy life.

Soli deo Gloria

God bless all of you,

Becca

Hey friends,

This feels a little surreal to write. The title isn’t 100% accurate, I’m slightly over halfway through, but I have made it through my half vials without having to lower or skip a dose. As a reminder, in the past, I was only able to get 1-2 drops max before the herxing was intolerable and I was making no progress because of my body’s inability to detox.

The past 2 and a half weeks have definitely been full of herxing–it’s been nearly constant, with a couple brief reprieves, and we’ve also been dealing with significant grief in the house as we had to say good-bye to our grey tuxedo cat, June, 8 days ago. (I won’t write much about this now because I don’t want to cry, but we’re slowly going through the grieving process, but that’s added to the overall stress on us both, mentally and physically, so I wanted to mention it. The house doesn’t feel the same, and this is coming from a person who didn’t realize my dog-person self had become a dog- AND cat-person, until it was too late to enjoy my time with her. But that doesn’t even hold a candle to the loss Roger is feeling, because he was her entire world, and in many ways, she was his.).

More on the nature of the herxes below.
​

​​Today, Sunday November 10, I took half of vial 6
.
As I readjust to the constant herxing nature of this treatment (I still wholeheartedly think it’s one of the best out there but I legally have to say I’m not a doctor, just a longtime fighter, who has tried so many meds, supplements, herbs, IVs, procedures, and so many other therapies and treatments over the past...well, a very long time. Also, this is 100% not sponsored, I just truly believe in this treatment), I’m learning that either:

1.) I’m much better at enduring these herxes and pushing through these half-vial doses–even though the pain and other symptoms seem insurmountable at times right now–simply because I’ve had to learn to endure what I thought many years ago would kill me, but hasn’t.

OR

2.) The IV antibiotics and the antimalarials did enough in the 6 months to knock down bacteria to a degree, and that is also helping me endure half-vial doses and subsequent herxes, whereas in years past, I was only able to take 1-2 drops at a time, every 5 days, instead of half a vial (~15 drops?) every 3 days, as mentioned above.

REGARDLESS, we know one thing is true:

N-U-T-R-I-T-I-O-N has absolutely been a key factor, regardless of what else has contributed to my ability to endure.

And, of course, all credit goes to God regardless of the other factors, because He put them all into motion. After all these years (15+) of fighting anorexia, I’m finally in a kind of-decent place in recovery even though triggers can still send my mind into a pretty dark place, but I’m rejoicing for the lifesaving GJ tube that has kept me alive and helped me regain much needed (100% unintentionally and NOT ED-related) lost weight last summer before we discovered gastroparesis.

I’m not happy in the disordered way of “Oh yeah, I’m sick enough to need a feeding tube,” but rather in the “Thank you, Lord, for a device that can help me until my body can once again absorb adequate nutrients orally” way ... and I can’t wait till that day now that I’m slowly making recovery progress.

As far as the herxing goes, it’s been all over the place. One vial may trigger more nerve pain and trigeminal neuralgia flares along with more intense than usually eye and ear pain, one vial may result in GI herxing: bloating, distension, and I’m pretty sure there’s some kind of small sentient being living in my intestines, making roaring sounds at will. Sometimes I’m flat in bed, unable to turn over due to joint pain, and others my herx manifests in the form of an extra headache or migraine that forces me to keep my head under the pillow.

Basically, there’s no rhyme nor reason yet, and that’s because I’m still readjusting, and the wide array of herx symptoms occurs because of the sheer variety of symptoms Lyme and co-infections can cause. So I’m detoxing as much as I can (burbur and pinella, activated charcoal, coffee enemas, dry brushing, etc.), and just taking it and making it one day at a time.

Three positives:

Two weeks ago tomorrow, Rog and I had a car date night, went and saw the autumn leaves, and sat at the park for a while (in the car). He got out for a bit to let Lucy look around the dog park, but it got cold fast and I ended up wearing down, but it was a night full of laughs, which was needed with the unexpected weekend that was ahead of us.

Tuesday, November 6, through a lot of pain and tears (and medication and supplements and kratom pain relief), I was able to physically go with Roger to the polls and vote!

We then seized my brief adrenaline burst and immediately went to shop for our Operation Christmas Child shoebox items. I lasted about an hour total on Tuesday, and even though it was painful and I was pushing through fatigue, I enjoyed the time with Rog...and he goofed off a bit while shopping.

Other than that, you can find me here in bed or at the doctor’s office. We travel to Tennessee on the 28th for an appointment on the 29th, so we’ll see how everything’s going by then. Trusting God the whole way, even when it herx...uh, I mean...hurts. ;-)

God bless,

​Becc

Happy November, friends! I can’t believe it’s already November–2018 is almost over! Also, I’ve been listening to Christmas music off and on for a solid two and a half months...no judging allowed. It’s happy music, so I choose to listen to it, and often at various times year-round.

But I’m getting off track. Today, I want to share with you something I also posted on my @lymeislame Instagram feed. It’s something I plan on doing all month. I don’t know if I’ll be able to post it all here, so if you want to make sure you see it all or if you want to just follow along (or join me!), you can do so over on Instagram.

Below is the text and explanation from my Instagram post, which I used to caption the picture above.

Anyone want to join me, friends? Whatever this challenge looks like for you, I urge you to consider just adding a daily thankfulness practice to your life, even if it’s just a quick mental note. There’s always SOMETHING for which we can be thankful.

Stay thankful, my friends.

​Becca

Hey y’all,

I promise there’s a person under all of that gear–it just takes that much to get out of the house.

I have spent most of the past two weeks flat in bed, no pillow, in the dark, as still and quiet as I can be. I’m not able to even fake my former/best writing style right now, so I apologize if this is bullet pointed.

2 weeks ago today, I had an appointment with my Lyme doctor. (Reminder, I’m back with my former doctor, and no longer seeing Dr. Jemsek–I wrote about this a few posts back, I think).

At that appointment we learned many things:

- I’m still very anemic, despite iron supplementation. I was hoping this would have gotten better once off antibiotics, but it’s obviously a deeper underlying issue. This could explain my can’t-move fatigue.

- The EBV we were scared was reactivated is DORMANT! That was a bright spot for sure!

– My CD57 (which we just use as a marker) is still in the chronic Lyme/very low range, so that confirmed what we already knew: we still have a way to go to treat Lyme and co-infections, which I’ll come back to in a moment.

- I also received the low doses of the LDA mixes for foods and inhalants while there. (Subcutaneous injections)

- We got a referral to a specialist for help with something specific, but I’ll delve more into that at a later date.

– Yesterday I saw my PCP in town and got a referral to Ohio State University’s Otolaryngology department for a suspected chronic, undiagnosed CSF (cerebrospinal fluid) leak. We’re waiting to hear from OSU. This could explain a lot when it comes the the nature, intensity, and frequency of my headaches (2,100 days and counting). If not, they should have the tools to see what else may be going on physiologically at this point, because while we still need to treat Lyme and friends extensively, we know there’s more going on, as well. With this and in other areas.

– Today, I restarted the DesBio Series Therapy for Borrelia-Babesia (I’ve done the DesBio series therapies for chronic active EBV, which was obviously successful, as you can see above! I’ve also tried it for Borrelia-babesia and bartonella in the past, but my body wasn’t able to respond to to treatment at the time, and we’re hoping solid nutrition will make all the difference this go-around, because I truly do believe it’s an excellent and effective treatment). I took my first dose this morning, and throughout the day my joint and neck pain, along with headache, have steadily gotten worse, so maybe a herx has already started to rear its head. Eye pain and photosensitiviry are coming out to play more, as well.

The last time I did this treatment, I was taking one drop at a time, and this time I was told to start with half a vial (equaling several drops). These remedies are very strong, but I’m abandoning all preconceived notions based on past reactions, and hope to be able to report back as often as I can.

I know there’s more, but my brain fog and inability to keep typing mean it’s time to end this for now.

i apologize for any typos, my eyes can’t proofread in this moment.

We are hopeful! And letting God carry us through.

God bless you all,

​Becca