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.
Firstly, I apologize for saying I was going to update treatment as frequently and as detailed as my last in-depth update. The reality is I have been having a hard time with treatment, and while I currently have finished “treatment month 4,” I still have at least 5 to go.
I have an appointment with Dr J on Thursday of this week (7/12), so hopefully I’ll be able to do a more comprehensive update after that appointment. We’ll also get my next IV protocol over the phone. It’s able to be a phone appointment this time, because we’re not test dosing anything new for this treatment month. I don’t yet know exactly what I’ll be on, I’m just hoping the azithromycin has had its two treatment months to shine and that I get a break from it. Vomiting is not my friend.
Slight segue to story time:
A week ago today, Sunday, Rog had the misfortune of going out to sit on the porch in the evening, only to find within a few minutes that he had newly hatched larval ticks all over his legs. Long story short, the whole process ended up with us finding 40+ on him that night, half of which were already attached, then 6 on me (3 attached), which we suspected got on me as I was in wife-adrenaline-mode helping Rog get them all off of him.
We both got prophylactic courses of antibiotics. Rog was able to get a course of doxy (21 days with a refill, which he’ll need due to what you’ll read in italics below), and after consulting with Dr J, I was told to go on oral minocycline and ceftin (I’ll go ahead and spoil mine: surprise! I can’t keep down oral antibiotics, at least not yet! Also, minocycline bring on scary hallucinations for me, demonic-looking things, it’s really terrifying. It does make sense, though, because my neurological symptoms are very far advanced, and minocycline passes the blood-brain barrier (BBB). Anything that passes the BBB affects the brain directly, hence the neurological and neuropsychiatric symptoms flaring.
Quick relevant aside: Rog found 6 more on him two days later, which we had somehow missed, and then another on Friday of last week, after the event happened on SUNDAY.
WEAR TICK REPELLENT AT ALL TIMES OUTDOORS.
We’re waiting to hear back from the Clinic about what we are going to do as far as I’m concerned from this point until I start my new IV protocol, but other than that, there’s not a whole lot about which to update. I did get some promising information this week, but it’s a long term thing and would take a lot of coordination and cooperation and working out logistics, so I don’t want to get into specifics yet, but if you can say a prayer for specific direction in my medical decisions, I’m appreciate that very much, because this is a potentially game changing decision.
Symptomatically right now, not much is different, and honestly, some things are worse, but given the nature of herxing and where I am in my treatment protocol, that’s to be somewhat expected. I still have 24/7 “brain breaking out of skull” pressure (classic Lyme symptom), pain behind my eyes (primarily from babesia, can be others), and trigeminal neuralgia (“suicide disease”) pain. I will make one MAJOR note here that’s positive, though, before I forget to mention it:
NOTHING helped my trigeminal pain for 4 and a half years. It’s always been constant. And while it still is constantly in pain, I’m now able to open my right eye much of the time, and push through the pain, even though it’s still there, which was NOT possible before. This has happened slowly, and I owe it all to Bluebird Botanicals (NOT affiliated) and their hemp classic 6x concentrated CBD oil. It’s legal in all 50 states, which is great for those of us whose states are lagging behind where they should be on legalizing cannabis for medicinal purposes, but it took 6 months of CBD oil twice a day before I noticed it happening, but when I looked back at it, it’s very obvious THE CBD OIL HELPED WHEN INVASIVE AND PAINFUL MEDICAL PROCEDURES DID NOTHING EXCEPT MAKE THINGS WORSE.
I fully support checking into CBD oil, even if you’re in a legal state, because CBD is great on its own, but I’ve read research saying the convo of CBD and THC is the ideal combination, but I am NOT a doctor and this is NOT medical advice, all stuff I read as I pray for legalization to reach Kentucky sometime soon.
Anyway, I’m herxing pretty badly overall from antibiotics, especially this acute course I was trying to take, so cognitively, neurologically, emotionally, physically, mentally, I’m just worn (cue: Tenth Avenue North, ‘Worn’). I’ve also been having trouble with doubt–about treatment, about the future, about wondering if things will ever be better–but I know that doubt comes from Satan, so I don’t really want to give it any space here. All I’ll say is God bless my husband for putting up with my currently almost daily emotional breakdowns, full of tears.
I am eternally grateful for Rog and I can’t think of anyone else in the world I’d rather do this life thing with. But when I say God bless him, I mean it. Caregivers have a hard time, too, especially when their chronically ill loved one(s) are having hard days consistently back to back, so I’d like to share not only my gratitude for him, but also a video we recorded addressing that topic.
And here’s the YouTube video about how hard days affect caregivers, too. Rog makes some really great points and really shares his open, honest truth here, and that’s just one more reason I love him.
(Sorry, not sorry for the sappiness...that’s just me).
I hope you’re all hanging in there and making it through, or even enjoying, the summer! I know it’s a constant lawnmower and nervous system Russian roulette here, since we never know WHEN a mower is going to start (and either require loud rap music and/or crying and screaming to block it out, depending on the level of pain.).
With Lyme and co-conditions like heat intolerance, POTS, Mast Cell Activation Disorder, constant low grade fever and multiple overheating/hot flash episodes in a day, summer, which used to be my favorite season, is not currently so. However, I am happy to be alive, I am grateful for my husband, my family, and the health I DO have, and I promise once again to try to continue choosing joy, not matter the circumstances. Even if that means I have to wade through some negative feelings first, and deal with them until they’re resolved, I know the joy is there and I’ll feel it again, regardless of how down I may feel at any given moment.
Because “I’ve got the joy, joy, joy, joy down in my heart to stay!”
God bless all of you,