i won’t ramble too much here in the beginning–I just want to get straight to this post, a continuation of my health update part 1.
In the previous post, I shared how I was diagnosed with Hypermobile Ehlers Danlos Syndrome (hEDS), and I explained a little about why this was such a major discovery, and mentioned it’s impeded my ability to heal from the infections inhabiting my body. I also mentioned we know I DO still have Lyme, as well as with several hEDS comorbidities and other conditions/diagnoses related to hEDS (many we knew, some we learned in July), and we still have a long road ahead–but we now have vital knowledge with which to navigate it, and guidance on our most important next-steps to take.
Let’s get down to business, to defeat * * part two!
For some background/context:
“The crash” in January 2012+1 (BP 50/30, passing out, many classic POTS and MCAS symptoms, though we didn’t know it at the time), which led to us finally getting answers, happened after taking an extremely strong immunosuppressant medication: Actemra, which works on a deeper immune system level than the previous decade of my weekly methotrexate pills/injections, 3 months of weekly Enbrel injections, 5 years of monthly Remicade infusions, prescribed at a higher dose than the suggested max dose for my body, 8 months of Orencia infusions monthly, and various oral RXs from my rheumatologist at the time.
The Actemra seemed to help at first: for a week or two, I actually had more energy and was able to skate on an outdoor rink for nearly 2 hours. It was a couple of days after that skating session when “the crash” happened. We learned that Actemra ended up lowering my immune system so greatly, it let the formerly mostly-manageable Lyme symptoms come to the surface, as the bacteria took advantage of a lowered immune system, and they went into rapidly-escalating-attack-Becca’s-body mode (I’ve discussed that whole process in more detail elsewhere on this blog).
Since discovering I had chronic Lyme & co-infections, as I previously have said, we’ve tended to attribute new symptoms to Lyme & co-infections, because they technically all COULD be caused, or triggered, by Lyme. As of a little over a year ago, I’d already tried tried most feasible, available-to-me treatments for Lyme and coinfections, without seeing a noticeable, consistent, lasting difference. So, last year we talked with my DO about it and together came to the decision that we again needed to look elsewhere to cover our bases, just to be safe.
Covering our bases led us to the genius of a doctor I saw on July 29th (appointment also mentioned in part 1), who put me through a battery of examinations, tests, measurements, mental tasks, and more, who formally diagnosed hEDS, and who explained why the many things we were trying to approach in certain ways (presuming they were Lyme related), haven’t been affected.
Things like Mast Cell Activation Syndrome (MCAS), Postural Orthostatic Tachycardia Syndrome (POTS), Trigeminal Neuralgia/Facial Nerve Pain, TMJD, Craniocervical Instability (CCI), and many more, are all conditions whose symptoms also align and overlap with Lyme, so even though we’ve known for several years I had the other conditions above (MCAS, POTS, TN, CCI et al.), we still were treating it with the attitude of: “if we can treat and kill Lyme and co-infections, these symptoms will calm down, because the buggers won’t be winning the battle for my health.“
Yet, even then, I (we) just couldn’t shake the feeling there was something yet uncovered, impeding my ability to respond to Lyme treatment, and we learned EDS is that “something.”
There is so much to explain when it comes to EDS, whether it’s hEDS or any of the other subtypes, as far as explaining what it is and how it affects the entire body, I can’t fit it in this post. Since this is a health update, I’m not going into extreme scientific detail, but I plan to do so in future posts on EDS. I know this post didn’t contain much of the specifics we’re addressing, but before I explain more in yet another post, I wanted to give y’all the context for “the crash” here, because it’s important to understanding the overall update.
Part 3 coming soon!
I hope you’re all enjoying life in the best ways you are able. Thanks for reading, and again, I’ll be back to “talk” to y’all soon for part 3 of this update (including treatment plans, how well everything fits together, and why we’re doing what we’re doing right now, in regards to health).
HEALTH UPDATE: It’s not ALL Lyme
You heard it correctly: it’s not all Lyme...so what (else) *IS* it? Buckle in, we’re gearing up for a ride.
I’ve wanted to share this health update with you since we learned the answers in late July, but it’s overwhelming and daunting to even think of trying to summarize it all in one post.
SPLITTING THIS POST INTO MULTIPLE PARTS FOR LENGTH
Let’s customarily get this out of the way:
I know I’ve not kept up with this blog in 2019 like I hoped I would–or at all. It breaks this writer’s heart to not be able to communicate via written word on a regular basis. While YouTube helps in many ways (I absolutely love vlogging–sometimes filming and talking is easier than typing), it still involves using my computer regularly, which is currently not possible, so vlogging right now is sporadic.
It’s finally time to face my fear and attempt an overall update of where I am in my healing journey, even though it’s a daunting task. So much has happened since my last post on this blog, from November 21, 2018, the eve of my thirtieth birthday.
We’ve gotten answers to many of the questions on our list of yet-unresolved medical issues needing to be addressed, Lyme and otherwise, and we’ve been praying and have been given guidance and direction on the next steps to take for further positive action.
Long story short: It’s not ALL Lyme.
I’m sure many of you who read this from a Lyme–or other chronically ill–patient’s perspective will understand what I’m about to say, because it can happen with any chronic illness:
When we have one main diagnosis that can, and often does, mimic symptoms of 300+ other conditions, issues, diagnoses, it can be easy to blame any subsequent diagnoses, conditions, and new or random symptom flares, on the OG diagnosis, be it late stage Lyme neuroborreliosis, or any other chronic illness. Even if it’s something else entirely.
I want to be clear on this:
I still have, and am fighting chronic Lyme disease (late stage Lyme neuroborreliosis), daily. I still have positive Lyme tests and other specific immune system/marker test results which indicate the continued existence of the Lyme bacteria, and co-infections, in my body.
It’s still a major issue and we continue to treat it to the best of our ability, while also giving my body the holistic support it needs.
We just also know more about why my body hasn’t responded to treatments for Lyme & Co, why I haven’t been able to reach a functional state, despite trying so many treatment avenues, and why I struggle to even just maintain the status quo after a decline (Lyme can go into remission; it can’t completely leave your system, once in the chronic, late stage Lyme neuroborreliosis stage...at least not YET–I always hold out hope for a cure!)..
So what ARE the other answers we’ve gotten?
First and foremost
I saw a chronic pain management specialist who also specializes in Ehlers-Danlos Syndrome (a genetic connective tissue disorder that weakens the connective tissues of your body). If you’re not familiar with EDS, that’s okay, although I have a feeling some of you understand it firsthand. To explain the nature of EDS a little more cohesively, here’s an understandable explanation from the Ehlers-Danlos Society:
“Connective tissue is what the body uses to provide strength and elasticity; normal connective tissue holds strong proteins that allow tissue to be stretched but not beyond its limit, and then safely return that tissue to normal. Connective tissue is found throughout the body, and Ehlers-Danlos syndromes are structural problems. An analogy: If one builds a house with faulty materials, say half the necessary wood or with soft aluminum nails, it is certain there will be problems.”
I wanted to use their direct quote here, because it summarizes its point well, and explains the very foundation/most basic level of how EDS affects the body, and why. I also love the analogy.
When seeing the EDS and chronic pain specialist on July 29th of this year, I was definitively diagnosed with Hypermobile Ehlers-Danlos Syndrome (hEDS, formerly called EDS-type III), during my 5-hour appointment with this wonderful practitioner.
Throughout the appointment, we learned and uncovered more about how hEDS has affected my entire life, and realized we always wrote it off as “growing pains,” or, when diagnosed in 2005, “Juvenile ‘Idiopathic’ (we don’t know why you have it, but you have it) Arthritis,” frequently saying things to the effect of: “that’s just something my body does,” and more. Physical things that have just been “off” my whole life finally make sense.
There have always been a few symptoms of mine that should respond to particular types of treatment, in positive ways, but I’ve yet to see lasting success, as many have, with those same treatments for Lyme & Co.
And now, all the symptoms and health oddities throughout my life that haven’t been affected by, or responded to, any kind of treatment–it all just finally ‘clicked’ at that July 29th appointment with the EDS/chronic pain specialist. We had an answer (many answers, but those will be in the next posts), and we have an extremely detailed action plan.
This has already been quite a long post, so while I do have more to share in the ways of a health update, hopefully splitting this update into a few posts will make it easier to write, read, understand, and follow.
Here, though, I wanted to at least lay out the basic framework behind, ‘it’s not ALL Lyme,’ what it means; and at least share what one major part of the rest of “it all” is.
More details on my hEDS diagnosis, why Lyme treatments have failed (thus far), and the other issues we’ve unearthed (and about which we’ve garnered more knowledge over the past several months), coming soon!
God bless each and every one of you,
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.
So, what happened to my twenties?
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.
My early 20s
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.
My early-mid 20s
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.
My mid-late 20s
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.
But I've never been one to voluntarily take the easy route...
To quote Robert Frost, from his iconic poem, 'The Road Not Taken' (bolded lines specifically)
I shall be telling this with a sigh
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 most important lesson(s) of my 20s
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.
13. Enter through the narrow gate, For wide is the gate and broad is the road that leads to destruction, and many enter through it. 14. But small is the gate and narrow the road that leads to life, and only a few find it.
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.
'For my thoughts are not your thoughts, Not are your ways My ways," declares the Lord. – Isaiah 55:8-9
I'm also saying that as a Christian, I have no option but to choose the narrow gate, the road less traveled, the road marked with suffering (promised to us as Christ followers), and even at that, none of my suffering is even an infinitesimal fraction of what Jesus endured on my part. I can hear some of you thinking aloud "Well, no, you COULD choose the wide gate and broad road if you wanted to," and to that I just want to simply say, I'm sorry, that's not true. If I truly believe in God, and the healing power of Jesus' sacrifice, and if I call myself a Christian and am truly striving to be like Christ in any way I can, I don't get the option. There is no other choice. My choice is LIFE, and not just on this earth, but life eternal, ceaselessly praising the Father in heaven, with no more tears, pain, or fears, once my life on this earth is over.
The narrow gate is the only viable option.
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 not in idols, crystals, astrology, tarot cards, prosperity gospel principles, new age mysticism, human-designed programs that promise results no human can actually guarantee, or anything else like that.
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.
So, what DID happen to my 20s?
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,
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.
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.
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. ;-)