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,
It's OCD awareness week, and since this is something which which I have a lifelong struggle, I wanted to share with you an expanded version of something I shared on Instagram yesterday evening. It's always my goal to be transparent and honest, and to let you all in to the reality of life with chronic illnesses, the ups and the downs and the in-betweens, but that applies to mental health/illness as much as it does to physical, especially when I know there is a link between Lyme and co-infections (particularly Bartonella) and psychiatric conditions. I'm in no way saying my OCD was caused by the infections, because I had a genetically loaded OCD-gun, ready to fire at any moment, but there is a strong correlation, and it plays a role in deciding how we approach my treatment for Lyme and friends.
Please never, I repeat, please never use the phrase “I’m sooo OCD” in reference to liking to keep your things straight and tidy, liking to be organized and clean, or even simply preferring things be a certain way.
The statement is not only dismissive and reductive, but it is actively harmful in minimizing the struggle so many fight every day, often behind closed doors for fear of judgment, whether it is the intent or not. The statement itself also makes no sense, whatsoever.
Which brings me to:
2. Have you been diagnosed with OCD by a professional? Does OCD interfere with your every day life or limit your ability to function? Is it sometimes debilitating because you can never do something the “right” amount of times, do something the “right” way, say the exact “right” thing in any given moment, meaning you miss out on life because you feel the urgent need to perform compulsions to calm the constant stream of chaotic obsessive thoughts in your brain? Do you live each day with a looming sense of, “If I just make sure I do X perfectly, the Y bad thing won’t happen. It’s up to me. I have to do it perfectly right, otherwise the terrible thing will happen and it will all be my fault!”?
If not, please don’t use the the phrase in a casual attempt to describe common idiosyncrasies many people share.
It’s cool that your organized.
It’s cool that you’re clean.
It’s not cool that I’ve avoided all cracks in all sidewalks since I was 6 years old. As a kid, I had to do it because it “felt right” and I knew something bad would happen, but I didn’t yet have specifics. Around age 14, I remember the specific bad thing started to most often be the death of a family member. I couldn’t risk the lives of my family by hanging stepping on a crack. And it was, and is, so much more than listening to the old playground rhyme about breaking your mother’s back (although, to be fair, I worried about that before the death thing overtook my obsessive thoughts).
Two separate years of my life, one in high school and another in college, saw me washing my hands, often 30+ times a day, with straight Clorox bleach, scrubbing them raw. I remember the deep sense of embarrassment and shame as I stood over the sink in my college dormitory, sobbing, unable to stop scrubbing my hands and arms, because the bleach wasn’t working “well enough.”
I also always carried my own plastic utensils, toilet seat covers, etc, during these times, and was unable to sit on upholstered furniture. I even sometimes chose the floor over a couch or chair, because unless the furniture was plastic/ceramic (school desks)/easily cleanable, my mind reasoned that the floor was safer. If it was a “good” day, I could take a towel with me to therapy and use it as a barrier to cover the chair, sitting only on the edge of the seat for minimal contact, even though I had used my towel to cover the chair. Sometimes the floor still won.
I mention this to highlight the fact that OCD is irrational in its very nature, but if you know someone who struggles with OCD, and specifically if s/he struggles with contamination or cleanliness obsessions or compulsions, what s/he does and how s/he chooses to do it may not always make sense to you.
Regarding that, all I can ask of you is to please respect us, and believe us, and when something comes up that seems contradictory to another thing we may have said or done, yet we are still dead-set on doing something the way we feel it has to be done before we can move on to the rest of our day, know there is a connection in our minds in which the compulsion makes sense and must be performed. And, even when we recognize the illogical nature (I’m fully aware my obsessions and compulsions are not logical), that doesn’t absolve us from the need to perform the compulsions, because OCD is an irrational illness by definition.
I don’t think my family really believes me when I say I blame myself for the death of “my person” (my great aunt). On New Year’s Eve 2012, I was so worried about the next 365 days. I was dreading living 365 days in a year that ended with the the last two digits of the year after 2012.
That night I expressed my concern over 7 family members, none of whom were seriously sick at the time, saying I was scared one of us (I was one of the seven) would die due to the year number. Midnight struck, leading us into January of that year, and with little to no warning, she died in mid-February. I didn’t get to say goodbye while she was still alert, and I missed the last call she made to my cell phone the day before she went to the hospital unconscious (never to regain consciousness before dying a few days later), because I had finally been sidelined by Lyme and co-infections, and I just didn’t feel like picking up the phone. Never did I imagine it might have been my last chance.
I’ve been physically paralyzed, literally unable to move, from fear and tears and and terror and anxiety, more times than I can remember, due to OCD.
There is so much more to my story. This barely scratches the surface of what living with OCD looks like for me, but these are a few instances that stick out in my mind, because they are as fresh in my mind as if they were all happening yesterday. (As is the counting. I've counted everything my entire life, which is why I can tell you it was 537 steps from the Hard Rock Cafe to our Toyota Sienna when we visited Broadway at the Beach on vacation, the summer after fifth grade.)
On a daily basis, my mind is still a battleground. My OCD has played a major role in my 15-year battle with anorexia, which is a daily fight in itself, but the OCD as its own entity, never leaves. I’ve gotten better at “managing” it (meaning I’ve learned how to do my compulsions efficiently much of the time, so there’s minimal interference with my day), but my mind is almost always chaotically stressing out over an obsessive thought, often made worse by my physical inability to perform some of my "necessary" compulsions, due to chronic illness.
Exposure and Response Prevention therapy is perhaps the most studied/popular treatment method to address OCD directly, but it has never been the key for me, and I've tried it extensively. Some people also drastically improve with either psychotherapy, natural/alternative interventions, or prescription medication, but the latter most of those is something I was on for a decade, and I never saw a difference in my OCD (and boy, did we cycle through just about every available led before I realized my body/mind just doesn’t respond to them, and the side effects weren't worth the lack of efficacy).
QUICK NOTE: If you are struggling with OCD and you feel like nothing has helped, and if you think medication may be an option you want to explore, I am not discouraging it. I do think that America is overmedicated as a nation, but that does not negate the value of medications that can actually help some people regain real control over their lives, so whichever path(s) you choose to manage and treat your OCD, I want you to know that you have permission to do whatever you need to do to live your life as unencumbered as possible. Society, stop the stigma.
I would venture to say many people living with OCD, like myself at times, have mastered performing their compulsions so well, you may not notice that’s what they’re doing in the moment. But even those who can keep it under “control” (I know it’s not really under our control, but I’m talking about managing, as described above) still likely have times when it feels so overwhelming and crushing to even exist with these thoughts, and accompanying actions.
While OCD can sometimes be very obvious (as in excessive cleaning rituals and other obviously noticeable compulsions), unless you know the subtle signs, it's very possible the person next to you at work or in school or on the bus is fighting a mental battle so chaotic they couldn't put it to words if they tried, and you could know nothing about it, which means OCD, at times, can also be classified as an invisible illness.
Some OCD fighters are successfully treating with any number of the methods I mentioned above, along with others I didn’t directly address, and I always have so much joy for those who have reached that point. The point where it no longer keeps you from living, and enjoying, your life. My heart overflows with genuine, heartfelt joy and happiness for anyone who is able to wake up and defeat this monster every day, going on to thrive instead of scraping by and just existing.
I know it’s possible to get there, so while I’m not to that point yet, I have faith that one day, I will be. Because God is greater. For now, I'll approach it just as I do my physical health battles–one day, one moment at a time, clinging to that faith, until deliverance comes.
Writing. It’s something I’ve referenced here on the blog a lot, both by literally writing my posts, and also by telling you about my passion and love for the art of writing that runs deep in my soul, coursing through my veins. Even when I’m not writing, I had a writer’s spirit. Even when Lyme and friends have stolen my ability to write on any given day, I still have a writer’s heart. And even when I feel like I’ll never again be able to write as I once did, I still have the soul of a writer…and the fire in the soul of a writer is one that never abates.
It’s there, anytime I’m listening to or reading anything; be it books, audiobooks, the radio, the television, YouTube, movies, Spotify, the newspaper, songs that randomly pop into my head throughout the day, anything that contains words in any form, my mind is working. It is editing, writing, correcting grammar, thinking of rhymes, writing raps, writing entire chapters of books in my head, thinking up plots and immediately shooting them down and coming up with another. The writing, whether I’m physically able or not, is always happening. The soul of a writer is always with me.
(You may be thinking, “Whoa, hold up there, aren’t you a Christian? This sounds awfully sacrilegious.” To which I reply, YES, I am a Christian, and having the Holy Spirit in my soul, being the very reason I exist, is also the number one reason I’m alive and able to write this today. But for a moment, I ask you to please indulge me as I talk about the soul of a writer, and please understand I’m not using it to replace the fact that my soul is committed to, and inhabited by, the Holy Spirit and Light of the World. I’m merely emphasizing, to excess, the writing-fire who flames sometimes engulf everything in sight, and whose coals sometimes smolder a deep red, but whose light never goes fully out. Meaning, it’s the light of a passion I’ve had since before I entered Kindergarten, and it’s only grown stronger with time.)
I was talking with a friend the other day, and she mentioned a scenario I’ve mentioned on here before, which is also a scenario with which I am intimately familiar. It’s that writing bug. It’s late at night, even early-AM hours, and you are lying awake and a thought hits you. Following that thought is the thought, “I HAVE to get this down onto paper/my phone/my laptop, etc., or I’m not going to be able to focus on anything else.
I say that to emphasize this point: if words demand to be written, a writer will always find a way.
My writer-soul cannot abide having something already perfectly formed in my mind, yet not being able to immediately translate it to paper, at least not without major anxiety, along with the aforementioned internal turmoil that comes from not being able to concentrate on anything else until my thoughts are written or typed and therefore tangible. It may sound ridiculous to some, but I know other writers understand this. It’s a very real phenomenon. So real I think it deserves its own name, and while I’m in no position to say this is the official term (heck, there may already be a scientific term, but I’m unaware of it), I’m going to propose: Write or die. Because that’s how it feels sometimes, like I’ll physically explode if I don’t get my words out of my head.
Ever since “the crash” in January of 2012+1 (which landed me in the hospital and eventually down the long, winding road that is finding a doctor who was knowledgeable and looked at my full health history and complete picture, then getting diagnosed with Lyme and trying various treatments over the past nearly 6 years in an effort to heal), I’ve not been able to write as I know I once could, and as I’d love to be able. It’s not a matter of time, because being mostly-bedridden for the better part of 6 years, but rather is a matter of the cognitive effects of chronic Lyme disease.
I want to clarify that CHRONIC LYME DISEASE IS REAL, I’m not talking about “Post Treatment Lyme Disease Syndrome,” just to make that clear, since there’s a lot of talk happening these days.
Yes, I started this website and blog near the beginning of my official diagnosis, but over the years, I’ve become less and less able to keep up with posting regularly. I’m not going anywhere, though. If I think about it too much, this particular reality can really get me down in my emotions, very down, in a bad way. I start to question if I’ll ever be “me” again, when I can’t even commit to being able to write to type just 1-2 sentences daily, never knowing what a day is going to bring. That’s how much writing means to me.
But the thing is, I know my identity is not defined by writing, even though the diploma on my wall suggests it’s a major part of who I am (and it IS; I wouldn’t have devoted 4 years to getting an English degree if it weren’t the case), because like I mentioned near the beginning, I know my identity, at its core, is found in Christ and Christ alone. On a day to day, human-functioning level, however, writing is very much a part of who I am and is something that can get me excited more than just about anything else when I AM able to write.
“But Becca, why are you writing this blog post today?”
The answer is actually quite simple.
I am able to write this today.
But even more so, I was inspired to write this based on how I’ve been feeling lately, and also because I have had some important writing-related news to share with you! If you’re not in my immediate family, you don’t know this, but I spend a good portion of my time at home, alone in bed, thinking about the memoir(s) I’ve planned on writing for over half of my life, and I also get easily overwhelmed when doing so, because I’ve never been able to figure out a format that makes the task seem manageable.
I NOW HAVE A FORMAT AND I’M BEYOND ECSTATIC!
I obviously can’t disclose all the details about my format, but I found a way in which I can share stories, anecdotes, and lessons from all times in my life, without the familiar “Oh no, I can’t do this, it’s too hard to write down, I can’t just pick a few things, I can’t handle this,” etc. feeling. I’ve found a format I know it doable, and now I’m excited to get writing, as often and as well as my body is able. It may still take years, but at least one is getting written, and I also have plans for a fiction series, along with many children’s books, but the memoir is what I’ve wanted to write for over 15 years, and now that it doesn’t seem impossible daunting, I’m more excited than I’ve ever been when it comes to this memoir matter.
Maybe some of this seemed unnecessary, but as I’ve said before, and as I again discussed it with my friend, sometimes the words just need to get out. And the fact I’ve been about to write over 1,200 words is one of the biggest victories I’ve had to date. No exaggeration. Praise the Lord for just the ability to type these words!
Thanks for sticking with me if you’ve made it this far. I really do hope to start posting more frequently again, but we’ll see how my body decides to act.
For now, I love and appreciate you all, and I’m forever thankful for any and all of you who visit this site and are able to maybe find a little encouragement, or even just solace or camaraderie. We’re all in this together, even if we’re each behind our own screen/in our own bed/house.
Of all the things Lyme has stolen from me, my ability to write as I used to and as I know I once was able is among those things I've lost that hurt the most, even if it's temporarily. If it were up to me, and my body and brain would cooperate, I wouldn't just be keeping up with this blog nearly every day, but I'd also spend most of my time writing any of the several books I have inside, waiting to be put to paper.
But alas, that's not something I can currently do, so instead, I've tried to keep up with the vlog as much as I can. Below I'm sharing parts 1 and 2 of my most recent treatment update, for those of you who may be wondering how I'm doing and what our current plans are.
Hopefully I'll be able to reconnect with my ability to pen words in ways I feel are special and unique, but for now, here are my most recent health and treatment updates.
I'm so sorry to disappoint, friends. I know blogs are intended for sharing via the written word, but please believe me when I tell you the loss of ability to write as I once could is so profoundly painful, and no one wishes I had it back more than I.
For now, here are my video updates. I hope they're able to keep you somewhat up to date until I'm able to type or share more in any format. You can always subscribe to our youtube channel to follow us on this journey, since that's the main place I'm able to share updates right now, but I'm really working on getting my brain back to a place where it can write. And not just health updates, but REALLY write.