Here are some of the changes I’ve made within the last.. wow, has all this really only happened within the last two months?
Exchanged everything I use on my body for an eco-friendly, recyclable, sustainable, chemical-free and usually organic version. (With the help of Amazon Prime, if you’re wondering.) That’s organic and chemical-free shampoo, conditioner, body lotion, deodorant, powder, lip balm, sunscreen, toothpaste, facial wash, and soaps.
Exchanged household items for eco-friendly, recyclable, sustainable, chemical-free versions, that don’t harm the environment. Like dish washing materials, laundry detergent, fabric softener, household cleaners, paper towels, bathroom tissue, facial tissue, drain cleaning, and even tape.
Sent everything I had to get rid ofto TerraCycle, which offers free recycling programs “for previously non-recyclable, or difficult-to-recycle, waste.” This includes unwanted beauty products, foil-lined granola wrappers, water filters, even cigarette butts and ashes; i.e. lots of things you can’t put in your recycle bin. And they even pay you to ship it to them! Continue reading ““When conditions are sufficient, things manifest.””→
I’m not used to living this kind of life. It’s so different from what I was supposed to have.
I barely see anyone. I barely go anywhere. I have no local friends and I think I’ve permanently lost my ability to drive. Disease puts me in bed an average of 23 hours per day, or at least to somewhere I can lean back and my legs are propped up to ensure proper circulation. When you tell people these things, they immediately pity you and interpret it as a bad kind of life, or a sad kind of life. “Oh you poor thing…” But I feel neither sad nor pitiful. And if you knew how much worse things actually could have been, you’d understand that only 23 hours in bed is a fucking miracle.
What I actually feel is peace, and I’m content and I’m happy and this fact truly boggles my mind.
This isn’t complacency. I know intimately the “lurking dangers” of this life and never have my head in the clouds–it’s not my style. Just last month I tried an herb that had once helped me for seven years; it failed. The month before I temporarily stopped a medicine I was on to see if it really makes a difference; it does. Two weeks ago I upped another med because one of my symptoms has worsened. And I’m only narrowly avoiding having to start a new neuropathy medication. Meanwhile, with much help I’ve planted spider lilies and a peach tree as investments in the future, bought a chaise lounge for my back porch so I can be outside more, have written and advocated a lot (obviously), put new wind-chimes directly outside my bedroom window, made reservations for a four-day beach vacation with my family next month before it gets too hot, because four days means at least one of those days I’ll be able to actually see the beach…
And I also have neurologist, immunologist, pain management, primary care, and endocrinologist appointments, although I struggle immensely with getting to them. As well as four semi-important blood tests to do that will probably never actually get done because I’m sorry, it is just not possible that someone as ill as myself can awaken and get up four hours earlier than usual without any caffeine, any pain medication, or any food, while having autonomic neuropathy, suicide-levels of pain, and pre-diabetes thanks to polycystic ovarian syndrome…
No, I’m not complacent.
There’s no wool over my eyes so that I can smile in the opposite direction. I’ve spent enough of my time in emergency rooms and hospitals and grieving the deaths of others from my same diseases that a bubble of blind optimism offers me no protection. Nor have I given my resignation to life, although I know I’ve exhausted my treatment options. Even if this was as good as it ever got, I’ve done enough living for many lifetimes, I think. And when the theatre season picks up next month I do have plans to go and to see. There’s a choir, another chamber orchestra, another beach, another ballet, all evenly spaced so that I’ll have time to rest then go then rest again to ensure my attendance at the next.
But for the past four months I’ve been what can only be described as a recluse, and I am so perfectly fine with it, that my peaceful surrender actually gave me pause. I had to stop and make sure nothing was wrong with me, that I wasn’t secretly anxious or scared or complacent or depressed or suffering a lack of motivation, because in my naiveté I thought those were the only reasons anyone could be in their own company for as long as I have and not crave “more.” As it turns out, my definition of “more” has changed dramatically, and being peaceful this consistently just isn’t something I’m used to, so I’ll sit with it for a while until I understand it fully, like Buddha under the Bodhi tree.
Most of my life has been spent in some form of chaos. Even growing up, I had no idea what it meant to relax, although ironically I never put it together that such a hellish environment was the very definition of stress, because that fact was so vehemently denied by the chaos-makers in favor of the illusion of happiness. It occurred to me later in life that this may be why I only accept authenticity and facing life head-on: I know what it feels like to be surrounded by fake emotions and others’ delusions instead of reality, and I never, ever want to live that way again. Life is much less frightening when you face it, trust me. There is safety in the truth.
Even though this is the kind of life that most would consider boring–especially my fellow Americans–I am so happy, and my quiet existence fills me with such joy. After living chaotically for such a long time, there’s now a sweet comfort in my predictable routines, an intense pleasure to be found in what most call mundane. The paradox is that I’m faced with allowing myself this happiness.
Confronted with better alternatives to old toxic patterns, there’s a bridge I must cross every time solutions seem too easy, too good to be true. I used to feel guilty for feeling calm amongst awful situations that were tearing other people apart, situations that in fact used to tear me apart, also. You think I just woke up like this one day? Oh, definitely not.
I still remember where I was the first time I noticed everyone around me was crumbling under a crisis, yet I, instead, was overcome with internal peace, finally aware that I could still not only feel calm, but I could actually be the calm, even as I acknowledged the situation’s dark potential. The difficult part was no longer finding that quiet internal space, but allowing myself to be as okay as I sincerely felt, and understanding it didn’t mean I was any less concerned than everyone else. Unfortunately, that’s how everyone else interpreted it even as I openly expressed otherwise, but you can’t please everyone.
I’m learning to be okay with this type of stability.
People do everything they do because they want to be happy, feel safe, have an impact on the world around them, and live in harmony. I used to think there was only one way for me to get there.
“Education is an admirable thing, but it is well to remember from time to time that nothing that is worth knowing can be taught.” (Oscar Wilde)
So how do you respond when someone looks at something you’ve worked your ass off for and thinks you only got it because the odds just fell into your favor? How do you process this inherent invalidation of all your struggles, and what does it mean about the person who said it?
When I look back at all that I’ve done over the past year, it really blows my mind. And I did it all because I first made the choice to live and enjoy within the confines of my circumstances, just like I did last year. I set in my mind what I wanted, made whatever arrangements I could on my own to help them manifest, and let the Universe work out the rest based on what I needed to experience.
If I wasn’t supposed to have something yet (or at all), well it wouldn’t have been from my lack of trying.
None of it would have happened if I just blindly accepted the identity of “sick person” that most family members and even doctors wanted to give me; that for too many years I gave to myself, as well. With this identity comes the belief that you must wait until you’re better before you can enjoy your life, whereas nothing could be further from the truth, especially when it comes to long-term or chronic illness.
But in general people don’t want to hear that. Some don’t even want to hear about all that I was able to experience (although I’ve already written about my past endeavors-while-sick), and that’s okay. I know the things I lived, I don’t need further documentation. And because it involved a lot of travel, I don’t imagine they’d be all that interesting to anyone else, anyway, in the same way slide shows of your vacations need to be ambushed upon unsuspecting house guests if you plan to share them.
I might be a little biased on this next part, due to people continuously asking my advice on how to get something I have (emotional freedom and the like, usually), yet being very unwilling to actually do anything that’s even mildly uncomfortable in order to get it. Then they turn around and play this card:
They wish something in their life was as “easy” as I “seem to have it.”
More than a few people have said that to me within a week’s time, and I couldn’t help but laugh.
Because nothing–absolutely nothing–has come easy for me. No one comes to acquire the traits that make life’s difficulties seem “easy,” because life actually WAS easy. No, they arise from having had so much hardship that you eventually learned coping mechanisms to deal with them. Even still, what one might perceive as my ease of living is actually my choice to experience it as such, and I’ve crossed over mountains to get to this place from where I was, because I was not raised to be peaceful. (Please read that. Okay?)
But people only hear what they want to hear, and until they’re ready to change, they resort to, Of course YOU did it, you [insert excuse for why it’s easier for everyone else besides them]. Or else they want to be spoon-fed the exact steps they need to take, as to (1) only do and invest as much work as is necessary and (2) eliminate the natural consequence of following less-strictly-defined steps: fear and anxiety.
This “Of Course It’s Easy For You” Syndrome is also troubling because it’s an unconscious confession of (more fear) self-sabotage. This is inventing excuses for why you can’t have what someone else has, to convince yourself not to even try. It’s giving yourself an “out” based on an external factor out of your control, or something internal you perceive yourself not to have but which someone else does, helping substantiate your belief that the situation is out of your hands.
But if you want things to be easier, it doesn’t start with changing your circumstances, because you can only manipulate your circumstances to the extent that you realize what is really yours to control.
And that all starts with manipulating you.
Society tells us from the day we step outside that your life is supposed to be about getting from point A to point B, and to pass your days filling in the rest with your to-do list of how to accomplish that. But that’s incorrect. Our lives aren’t defined by only the big decisions, goals, and occurrences. However much impact they have on the rest of our days, those major game-changers are few and far between.
Life is mostly made up of all the little moments you encounter between those perceived checkpoints. It’s all the smaller things you do day in, and day out, that make up the most of your life and help determine your happiness. You can have a radically different life without changing a single external circumstance, because the only common denominator in your entire existence, is You. In other words:
When it comes to enjoying your life and finding peace, it has nothing to do with someone else having something you don’t.
And I guess that’s why it doesn’t matter too much to me anymore to explain all that I’ve been able to do, even while sick. Although reaching those goals was inexplicably amazing, it’s the process of living and thinking that helped me manifest them at all, which holds the most value in the long run. And that’s the part I really want to share with this blog.
Something I never considered the IVIG might do was the one thing I’ve diligently avoided doing at all costs for the past two years: Wake my immune system from its compromised state of complacence. Because that, in turn, as has happened every single time over the past six years, would reactivate my latent bartonella infections.
But that’s exactly what it did.
Some of you may not remember my ordeal with this infection unless you’ve somehow been following my blog since the beginning, but this short post from January 2012 might help a little.
I realized a year later that my symptoms were re-emerging and my bloodwork showed increasing signs. From then on I did everything I could to not stimulate my immune system, especially avoiding antibiotics at all costs (i.e., in the event I caught something extra; because as we know this entire treatment-failure conundrum was caused by me being unable to tolerate antibiotics to treat the Lyme, bartonella, mycoplasma, etc.). Because of this, and thankfully so, it remained somewhat latent in contrast to how quickly it spread the first few times it was active. From past experience, I’d seen that activating my immune system in any way triggered it to attempt fighting infections wherever they existed, despite my immune system not having everything it needs to actually fight, or even being able to use what it does have, efficiently. I’d found out the hard way that to reactivate bartonella was to initiate my imminent decline: The first time this happened, I was bedbound within eight months; the next, within just four.
Well. All the symptoms that have occurred periodically since the bartonella relapsed, are once again emerging VERY reliably every 5-6 days (usually five, as is part of the reason bartonella “quintana” got its name). There are the frontal headaches; the unusual rashes and bumps on my feet, ankles, lower legs, and hands/fingers; the foot pain; the shin pain; chest pain; more arrhythmia; more anemia; the volatile moods that occur the worst on that 5th day, leading to rapid cycling between hopelessness, suicidal ideation, rage, paranoia, and anything else you can imagine, before fading as quickly as it arrived; the worse “brain fog” and neurological dysfunction; low-grade fevers; excruciating fatigue; worse dehydration… Unsurprisingly, its pattern started five days after my first infusion in October, and has continued ever since.
A part of me just cannot believe this is happening again. The other part of me has not experienced something so dangerous since practicing Buddhism, and is able to be objective enough to find it fascinating how a body reacts to infection.
The worst flares–the ones that scare me–happen right before my infusions, when my immunoglobulin levels are at their lowest. I get IVIG every four weeks, but at my current dose the effects only last three weeks… So the fourth week, my system has fallen back to its usual, immunodeficient state, which means I am at mercy of a potentially-fatal infection with little to give it pause.
I discussed this with my immunologist today and he has upped my dose. We’ll see with my next infusion if this new dose will last long enough to stretch the entire four weeks, but if not, we’ll try every three weeks. If that doesn’t work, then I’ll have to do it subcutaneously every week just to stay stable. :\ (I hope not; I don’t know if I could handle that, mentally.)
I felt so horrible the morning of my last infusion, I thought I might more likely end up in the emergency room than their office, and wasn’t even sure if I should go. But within two minutes of praying for guidance, my doctor’s office called me and told me to come in, come in immediately. So I did, and by that evening I was a different person. For one, I was hydrated, but I also no longer felt like I was being mauled by a bear from the inside out. The flare completely stopped.
For the first time in over two years, I feel like I have a chance to slow these diseases’ progressions. And after seeing how my body can now fight back after receiving an infusion containing the parts of my immune system I’ve never adequately been able to create on my own, I have hope that maybe I can be like everyone else who gets a bartonella infection, and just kill it off before it kills me. This can really only go one of two ways.
If I can continue getting IVIG reliably then maybe several months from now my new-and-improved immune system, thanks to literally thousands, upon thousands, upon thousands of donors, can finally overthrow bartonella (and maybe the other, less-rapidly-progressive bugs?), and I’ll never have to worry about it again. That’d be nice… Really nice. But if not, I know this is still my path.