Here’s Looking At You, Kit

© a rainbow at night

This will not be a lighthearted post, but it has been a long time coming, as many of you have probably already suspected. The ole “I’m leaving this blog behind” announcement that’s been a couple years in the making, but of which I’ve only been certain I needed to make within the past six months or so.

For years, everyone has watched me say things like, I’ll post in this way, or that new way, or I’ll try this… But even though I have dozens of half-finished blurbs in my personal writing app (31 to be exact), most of what I’ve scribbled will never make it to the public eye. And I’m okay with that.

I imagined when I got back to a place where I wasn’t trapped in an isolated hell of cognitive confusion and anxiety, I would naturally gravitate back here, to the writing outlet and the people and the support groups that used to keep me going. Then I thought, maybe if I just quelled the desire to explain so much of my thought process, things might flow more easily to the page, while also being more digestible for my readers. Turns out, no, and furthermore, I love explaining my thought processes, and trying to make the breadth of my worldview smaller for some perceived idea of what my “audience” might be able to tolerate, is just another example of how I chronically shrink all that I am and all that I feel so as not to disturb the state of others.

When it comes down to it, as far as I can tell, I really have said everything I needed to say here. It is simply time to close this chapter.

Besides, the ultimate goal of any supportive community is that the members are supported so earnestly and wholly that they cease to require that facet of the community at all. It leaves room for those who still do, and makes room for those who will soon join.

Surely my own aging has a lot to do with things, too. The generation of people with myalgic encephalomyelitis who came before me are now slowly dying out, if not mostly already gone. And my own generation of people with M.E. are becoming less and less well-known; soon we’ll be entering into the years of early deaths, ourselves. Maybe no one will remember that we existed. Maybe no one will have learned from our plight or remember how hard we fought to help each other and society at large stay aware of the truth, believing wholeheartedly that to cure a disease you have to know which damned disease you’re actually studying. Maybe we will never get the help that we have always deserved from those with the most ability to give it, especially as the waters encompassing the ever-changing categorization of “chronic fatigue syndrome” become murkier year-by-year; especially as the knowledge of which disease M.E. actually is fades into history along with us. Because let’s face it:

There’s a reason people with myalgic encephalomyelitis die 25-30 years earlier than the rest of society, even if medicine doesn’t (or claims not to) understand why that is. People labeled with CFS probably do, too, because they cease to ever get diagnosed with whichever disease they actually had. And don’t even get me started on all the terminal diseases untreated Lyme bacteria will morph into! But my point is: For people like me, even if they cured this tomorrow, it would not undo decades of living with systemic disease. And a cure certainly would not save those who are already on their deathbeds.

But aging affects us all, and even as I aim to become more whole in spirit and healed in soul, it is the natural course of things for bodies to gradually lose functioning, and for bodies with diseases to lose it faster. It becomes more and more obvious each and every year that I am blessed to have, with each new diagnosis I acquire, that is not my job nor is it natural for me to keep going at the same pace I did when I first fell ill. Especially, especially at the expense of living this life that I fought like hell to still have. Most of you have no idea just how much, but read on to find out.

Combined with this realization is the trust I now have that the generations following us will make use of the information we’ve painstakingly provided for them, just as we made use of what our M.E. veterans left for us. I have more trust that the invention of social media has done something I could’ve never imagined when I first got sick, which is bring together all the people that the CDC and similar government agencies worldwide tried to silence, and give them a connected voice with which to Act Up during the years they are able. You can muddy the waters and call it whatever you want, but the fact remains that many people are going to get M.E. in the future, and many more are going to be put in the category of CFS or “ME/CFS.” And those people are going to talk, and demand to be studied.

To me, it’s simply a statistical improbability that the invention of the internet, the relative success of social media, and the tenacity of today’s youth should prevent the truth of things from ever becoming known, or prevent that cure. It might be too late for us but it will not be too late for those who follow, as long as those who are called to fight, answer that call. I answered that call when it was my time, and I need to look back at that and feel proud of what I’ve done and how much I contributed, instead of feeling I haven’t done enough.

I used to think there was something wrong with me for wanting to let this go. I used to look at those still holding on to the hopelessness and the anger and the dissatisfaction, and wonder why I wasn’t joining them, if I purported to care as much as I professed. It sounds ridiculous now, when I type it. And I used to respond to the guilt, when others claimed that because my writing was “so good” (even when it harmed me to produce it), or because I still had some cognitive ability intact (even when it wasn’t), or because my knowledge of our history was so extensive (because it was so much easier for people to expect me to do the learning and regurgitation of our info so others, usually others far more able-minded than myself, wouldn’t have to put forth the effort), that it was my main responsibility–in my own life!–to be their soldier. Of course this only refers to the extremists, which are present in all activism communities, but they were telling me and others like me, in so many words: We want what you’ve got, so do our bidding; Don’t deviate from the herd; You’re good at this, so you should be good at it for our sake; Continue on this way at any expense, because think of those who can’t continue at all; Tell our story, not yours.

Now I realize I may have gotten it backwards. They may still be caught in that place because they haven’t found a way to move forward, and I may be leaving because, I finally have.

I suppose there’s really nothing you can do or say in any situation like this, when anyone places their expectations on you to do something that isn’t actually your job, whether it’s an abusive family scapegoating you into taking responsibility for everyone’s problems so they don’t have to face their own shortcomings, or the social justice warriors bullying citizens into feeling personally responsible for the fate of millions while ignoring the larger role top-tier executives and businesses play, or the minorities of society being made to feel like their every action needs to speak for the whole, while society forgets they are just human beings like everyone else, with the same limits and the same needs.

Yes, as it happens more often than I’d wish to recall, I start out thinking I’m the oddball only to realize years later that I was actually responding in a very healthy and reasonable manner. Of course in the past, I’ve made those same mistakes from the other side of the fence, as a younger, more immature advocate. Don’t get me wrong; I’m not any better than anyone else. I just know different things now, and I have different strengths (and weaknesses), and my actual job, is to put that knowledge to use in my everyday life.

Here’s my question for you: What things are you doing, what are you still participating in that you might have actually outgrown?

Are there things you’re doing just because a lot of others in your community do them, but that don’t really resonate with you?

Are there people you tolerate because “the group” likes them, even when you see right through them AND the harm they cause?

Have you outgrown your community, but stay, remaining stifled because you don’t know what’s next for you, because at least where you are right now, you know the rules?

What are you doing in a particular way just because it’s always been done that way by others?

What are you doing just because it’s expected of you, when it goes against everything you think your life should be?

Stop participating in activities that stifle you. Don’t follow the herd when they jump off a cliff. Stop tolerating those people. Leave the places you’ve outgrown. Don’t stay in a situation that harms you just because someone expects you to play the supporting role to their center stage. Stop letting domineering personalities make you believe your most significant worth is how well your actions maintain their happiness. Know that it’s okay to move on, and know that you’re the one who gets to decide when.

It is my wish that every pair of eyes reading this right now will discover the full extent of their personal power to make any and all of those things happen.

In what I guess is my “send off” message, I encourage the same theme I’ve had going here for the past five or so years: If something in this post has prompted you to consider your life, let yourself consider it. More than anything, I want to help people see there are ways to do and to be what they want, and that maybe by witnessing someone do or become whatever those things are, that they find their own courage to do or be it, too. I feel very blessed that I’ve been able to do that with this particular blog over the past decade, and I plan on continuing to use my writing to empower.

Because I’m going to continue being who I am. I’m always going to be the advocate, I am always going to be the one who fights for those who can’t speak up and I am always going to be the one who speaks the truth, no matter which sphere I’m a part of at any given time, no matter which illness or injustice or imbalance I have to stand against. I will always be a little “too much” for some people and “not enough” of something for others. And I will always fight so ferociously for myself and others because of the depth of my love for us all.


Brace yourself for this next part if you’ve known me for a while, as it may come as a shock, and may also be triggering to those with PTSD, particularly Complex PTSD.

To state the bare facts: I have been traumatized and abused extensively in my lifetime, both in childhood and well into adulthood by sociopathic narcissists in my “family” of origin. I moved from here long ago, but was forced to move back to physically survive after I contracted several infections at once and became so ill that I was just barely evading organ failure at the worst of it. (Your organs start shutting down after your oxygen concentration dips below 80%, and mine was, well, exactly eighty percent.) But the only sane, truly loving, authentically compassionate person in my family died while I was still undergoing treatments. After that, my day-to-day existence became dependent upon “help” from these extremely abusive people.

Accepting help from a “narcopath” is the same as signing a contract with them ensuring they get full rights to abuse you in any way they want, with the hidden clause that you are not allowed to protest or they’ll systemically and immediately take all of that assistance away, usually in the order of most-critical-first so as to have the most impact.

I vividly remember the first time I fought back against being abused after my last loving family member had passed away. What followed became a clear message of what lengths they’d go to show me just who had the power now, and that it was no longer me. I wanted to call the police, but I knew that drawing that much outside attention to what I was experiencing would only guarantee even worse verbal, emotional, financial, psychological, and indirect physical abuse in the short-term AND long-term, as punishment. As it turns out, I experienced more and more of all those things, anyway, as the years went on. Abuse doesn’t get better, only worse. If you can identify with any of this, start planning your leave.

Indirect physical abuse is a type of physical abuse where the abuser intends to cause you physical harm, while stopping short of actually hitting you because that would leave proof which could get them arrested. For example, stranding a wheelchair-bound person somewhere without their wheelchair, or purposefully triggering someone’s PTSD (or any other illness) with the intention of causing them visible anguish. There are those in my extended family who have even been thrown into comas when their psychopathic partners intentionally triggered them into violent asthma attacks in order to watch them suffer. These incidents are usually followed by short-lived “honeymoon” periods to prevent the victim from catching on and trying to leave, but the cycle of abuse wheel will always keep turning.

There is a massive element of psychological abuse inherent in indirect physical abuse, because the perpetrator can usually gaslight the victim and even witnesses, including legal authorities, into believing that the victim “did it all to themselves,” since there is no physical mark left behind to help prove the origin of the harm was the abuser. Even though they can spend years learning the victim’s triggers and weaknesses so as to use them as weapons later on, it is much more difficult to prove malicious intent, and the abuser is usually very careful to only show this side of themselves to their victim. It is the reason “house of horrors” regularly show up on the news with neighbors claiming the perpetrators appeared good as gold to the outside world. Because these types know what is right and what is wrong, and which facade they have to apply, and when, and in front of whom, in order to continue hiding in plain sight.

There are innumerable reasons why I was forced to stay in that situation for so many years, and I’ll just have to trust that my readers will take into consideration my intelligence and my ability to make sane decisions, even when choosing the lesser of two evils. They treated me this way, for as long as they did, because they knew they could get away with it given the circumstances. When the circumstances changed and I became stronger, both physically and mentally, the abuse worsened in an attempt to keep me subdued. They should all be in jail for the things they’ve done to me and others, and in fact some of them actually are, for different abuses. But I have finally escaped from them, all of them, and I have a new roof over my head in a much safer location (unfortunately I don’t own this one, but). I have money with which to eat and survive, and no one knows where I now live.

© a rainbow at night

I haven’t escaped unscathed, but in general, I am much more sound of mind than I probably should be, given my experiences. I wish I knew definitively why that is, but from my perspective, I think I owe this in part to:

  • Looking at things for what they are, even when those things are horrible, something not everyone can do;
  • Spiritual practices, including prayer, meditation, an unshakable belief in some sort of Universal Higher Power, mindfulness, and my understanding of the bigger picture (i.e. I am not my body but the divine spirit within this body);
  • Learning everything I can about narcissistic abuse and toxic family dynamics to remind myself it’s not “just me,” especially when I begin to falter and make excuses for them; and even
  • My near-death experiences, which helped remind me of the beauty and preciousness of life, and that abusers are only a small part of this world who can never override all the wonder and joy to be had here for those who are looking. Try as they might to control the reality of others, inflict purposeful harm, and prevent their victims from experiencing or showing happiness, they cannot override the dominant, divine forces of this planet.

And who knows what else. Of course this has come with a ridiculous amount of survivor’s guilt about being able to see through the madness and escape while others still believe in and suffer from the abusers’ alternate versions of reality… Which is probably why the survivor’s guilt related to other things–surviving hurricanes, floods, and the same diseases that have killed so many friends–has affected me so severely: it’s cumulative.

If I’ve gained anything from this situation, it’s that I have found and intimately know the real inner me, that still, small voice that is my Highest Self, and I know this part of me is always, always, always okay, no matter what. I’ve talked to people who don’t even know that place inside them exists, and yet it is the only reason I have been able to survive my life. I have, however, exhausted the limits of what I can handle on my own, and now it’s time to get help. I need treatment, and because I don’t have to be around the very people who are the reason I need that treatment in the first place, I can finally go get it.

I get to build a new life that fosters even more healing from all I’ve had to endure, including the life-altering disease that is PTSD. And I know I can do that, because I’m not afraid of facing harsh truths, and throughout my life I have always taken whatever anyone intended for my harm and transmuted it into knowledge that helped me become more loving, more joyful, more compassionate, and more resilient. I see my beauty for their ashes, and I want to use this next phase of my life to help others find theirs.

“But I’ve got a job to do, too. Where I’m going, you can’t follow. What I’ve got to do, you can’t be any part of. …I’m no good at being noble, but it doesn’t take much to see that the problems of three little people don’t amount to a hill of beans in this crazy world. Someday you’ll understand that. … Here’s looking at you, kid.”

Casablanca (1942)

 

Well, guys… I’ll see you around.

— Kit

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This one is for you.

[ estimated reading time: 4 minutes 27 seconds ] © a rainbow at night
Dear reader,

As you may have discerned by now if you’ve been witness to the longest unintentional hiatus this blog has ever undergone, my creative expression has been paralyzed lately. Not only due to the sheer mass of change, but the rate at which it’s taken place. That’s not the only reason by a long-shot, but it’s the quickest explanation I can give.

For the past several years, my posts have mostly read as a chronological account of everything I’ve experienced and how I’ve felt about it, generally accounted for as it happened. Up until recently, I didn’t realize the latter was actually a luxury, and one I could lose. Again, I’m circumventing a lot, but after a certain point that way of writing became impossible, because to write anything new first required procuring necessary back story; that itself became impossible, because I’ve been coping with unprecedented difficulties concerning processing and integration. How could I summarize for others what I was unable to decipher for myself?

There was also guilt involved. One post in particular I made last year was about finally experiencing an extended period of emotional stability after killing off the bartonella (infections). Yet fast forward and what came next were some of the most daunting and powerful months I’ve ever experienced, and they were anything but serene, anything but peaceful, with no stability, save for that quiet place inside my soul. I didn’t know how to magically jump from what I wrote before, to that, without any explanation in between. It was inconceivable. I was afraid my inability to appropriately narrate the explanation would make it seem like I’d just been avoiding my emotions until I could no longer keep up the denial and hit a brick wall. Which was not/is not true at all. Continue reading “This one is for you.”

“When conditions are sufficient, things manifest.”

© a rainbow at night

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 of to 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.””

A Very Special Way of Life

© a rainbow at night

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.

Thank goodness I was wrong.

a rainbow at night


See also:

My Tonsil Got Me Potentially-Life-Altering IVIG Therapy.

And here’s how.

Intravenous immunoglobulin (IVIG) is a human blood product produced by filtering the antibodies out of thousands of plasma donations–usually over 10,000 per dose–and supplying them intravenously for the treatment of immunodeficiency, immune-mediated neurological disease, and dozens of other serious illnesses.


I guess the story starts several months ago, when I began contemplating seeing my immunologist again to have my immune function retested. Not that long after, I began getting spots on my tonsils, which, after having some lymph node pain in my neck with ear pain, I figured was the result of an ear infection trying to push its way through; the tonsils are lymph nodes, after all.

After my ear improved with tea tree oil drops for three days, the tonsil spots proceeded to go away…and then come back worse. There I was thinking my immune system had won against something, but no! Accompanying this, my neck and face felt like they were on fire, and I had stabbing lymph node pain from my face to my right arm all day. It seemed to irritate the previous nerve damage in my face. (And mind you, I’m already on ibuprofen and percocet daily–the pain was going through them.) I wondered if I hadn’t gotten some type of stubborn virus, began to worry, and decided I needed to make that appointment because I couldn’t handle this one on my own anymore. And getting that appointment went something like this:

Mentally pair my current problem with having wanted to get my immune system checked, anyway.

Decide that’s perfect, I can do two in one; have a great feeling about that.

Call to make an appointment and find out my usual immunologist left, so made appointment with new woman in the office. Suddenly start to feel uneasy that I made that decision while distracted by two people in my car.

Call back to inquire about which immunologist in that office likes complicated cases, because I am one. Receptionist says she doesn’t know, but the one I just made an appointment with was available more (in town more often), so that might be something I could consider; I say okay and hang up.

Still feel uneasy and have nagging intuition that I should call back AGAIN and take the cancellation they’d offered for The Other doctor, even though it was two days later than the one I’d just made and I was really hurting.

Try to find an explanation for this intuition (because I just like to have explanation for things, if I can); begin doing research. Find out the Other Doctor loves complicated cases, AND he has thirty years experience, AND he’s the same doctor I saw twelve years ago at the onset of the M.E. (who helped me even without realizing it by giving me a steroid to slow down the initial inflammation).

Immediately called back for a third time that day to take the cancellation/the appointment with this Other Doctor.

Finally feel at ease.

I felt utterly ridiculous calling back so many times to change appointment dates and doctors, but: Intuition over feeling silly for a few seconds. The strange thing was that when I called to change the appointment–which I’d scheduled with the reason of having tonsil trouble and needing to recheck my immune system function–they asked me, “and you’re beginning IVIG?” I said, “…No? No one has ever offered me that!” and she said, “Hmm, that’s weird! Someone wrote down that you were starting it!” Hmmm…

I’d almost canceled my appointment before ever going to see him (“Other Doctor”), because between making the appointment while in severe pain and the days before the appointment actually arrived, my herbal rinse helped my tonsil to the point of there being no spots left. “Luckily” I didn’t cancel. (By the time I arrived, he actually said it was fine!)

Long story short, my current doctor, the “Other Doctor,” who shall henceforth be referred to as My Immunologist, is wonderful. He doesn’t know fully what myalgic encephalomyelitis (M.E.) is, but understands that it inflames my brain and causes progressive muscle weakness. He was knowledgeable that once you get certain infections there’s a possibility of them going chronic, so we didn’t have to argue over that. And for some reason, in his chart as well, was written that I was there to start IVIG! I told him the same thing I told the receptionist, that I’d never mentioned IVIG to anyone, and no one had ever offered it to me. (If you’re not aware, there’s only a certain supply of IVIG, it’s extremely expensive, and they don’t just give it to anyone.) And so, staring at my page-long medical history, and at a loss of how to help me, he offered it to me!

Thus, because of this tonsil and the other dozen quirky things that got me to that appointment at that time with that doctor, I have now gone through the system and gotten approved for immunoglobulin replacement therapy with the help of test results showing that my immune system is still.. well, my immune system, and both doesn’t have enough of things or produce adequate antibodies, and am starting my first infusion tomorrow, Monday, October 6th, at 9am at an infusion center. 

This will do either one of two things: Help me, or affirmatively rule out that this is never going to be one of my options so I can finally lay it to rest. But I’m obviously banking on it helping!

Of course, my tonsil has done what it’s been doing for literally months now, and the spots have returned and even popped up on both sides of my mouth. We’ve at least ruled out strep, though. He immediately called me in an appointment to the local office to do a culture with his associate, the lady doctor, upon hearing the spots abruptly came back over the weekend after the appointment, and spread. Neither one of them is sure why this is suddenly happening, but she thinks those and my other lymph node pains have been the result of an overburdened lymphatic system and weakened immune system, because nothing else has changed besides my relapse back in June. Basically my body is probably just overwhelmed. I liken it to a skin infection I get on my neck only when my immune system is overwhelmed. This could lead to tonsil stones if it doesn’t clear up, but he’s hoping the IVIG will help that, too (and at least this helped document my need to the insurance companies). Frankly, since the severe pain has subsided, I’m content to let it work itself out, now.

My favourite part about this, besides the actual IVIG, is that I get fluids after each all-day infusion because of my chronic dehydration and MTHFR polymorphisms, the latter of which make me extra susceptible to blood clots. So I get to do this once a month. Which means I get fluids once a month.

I hadn’t written about it here yet, but I’ve returned to needing fluids in the ER every few months. Some friends helped me discover coconut water in June and that did help a lot–now I can usually “save myself” when things get close to an emergency–but it’s still a daily battle. So if the IVIG goes well, I can continue getting monthly fluids as well, and dehydration will be one less thing on my balancing plate.

Another thing my bloodwork revealed was a high eosinophil count, which for me means the bartonella and/or mycoplasma are active–no kidding!–as that was one of their first presentations. They’re not as high as they were before when things were progressing really quickly, though, so that’s comforting–maybe this IVIG can help subdue them!? I’m very eager to see what will happen when I can actually make antibodies! :D

I’ve joined the Immunodeficiency Foundation, so if you’re on there, look out for me, or let me know your username. My thoughts about primary immunodeficiency usually take the back-burner in comparison to everything else I must balance, but when I think about it, living with it really does add a layer to my life that people with full-functioning immune systems just don’t have to worry about. I’m looking forward to being part of the support community.


As of this month, it’s now been two years since the big relapse (before this one) that made me stop all treatment in favor of, um, living… Now I get to try this! I’m thinking surely it will do something, for all of these factors to have led me to this point? I don’t believe in coincidence! I’ve been visited by multiple types of owls in my backyard almost every night since this whole tonsil thing started, despite maybe only hearing a wild owl three times in my entire life before this. Owls are symbolic of intuition, wisdom, the ability to see what others do not, and their presence announces a symbolic death, major life transition and upcoming change. 

Last night the Great Horned Owl visited me again.

a rainbow at night

A Relapse Within a Relapse

Avenue of the Giants, Humboldt Redwoods State Park © a rainbow at night

First, I can’t thank anyone enough for the response on my last post; it was quite unexpected. I’m glad to have touched the hearts of so many and to have received such a beautiful outpouring of love and support in the comments and e-mails that followed. It really helped me feel less alone, and you should all stop to think of how amazing you are for reaching out to a practical stranger. Thank you.

Right now the biggest thing on my mind is, a friend of mine who I wrote about several months ago, Brooke, is in the very final stages of myalgic encephalomyelitis. There were recently several weeks when insurance troubles denied her hospice care, during which she deteriorated very quickly. I do know she is getting at least some pain relief, and that is a blessing, and recent complications hint that it might not be too long…which is probably a blessing, too, if you ask me. She worked extremely hard to produce this post and a subsequent one to cover any confusion about her decision to deny “life saving” measures (questionable terminology) such as feeding tubes, which would only work to extend her suffering past her natural end. Her family will be delivering any updates as they occur.

[ETA: As of writing this, she’s managed to produce one more post clarifying that her amazing doctor convinced hospice to accept her for another 60 days. And amazingly, her bravery has led to being a part of an upcoming documentary about the severity of true myalgic encephalomyelitis, one that might chronicle her passing from this world in an effort that will accomplish her original goal of Documenting M.E. and all that it entails, to help spread the truth for us all.]


Also, I’m in the midst of a further relapse. My health has been in a state of decline since June, and additional stressor after additional stressor pushed my body over the edge. Or at least that’s what I assume happened, because I can’t pinpoint one particular thing that did it. I do know the emotionally draining act of writing a goodbye letter to my friend–because life happens–sent me into incapacitating illness for a straight week, during which I was struggling to remain conscious every single day. It was quite scary, but I’ve since become able to stay awake more easily…

It actually took me a while to realize I had relapsed. When I first felt the decline, I expected to recover in a few days, as my health is highly sporadic and changes every day, every hour, every ten minutes some days… And I even expected this recovery might be more extended because of the seemingly continuous stream of triggers… But while I was knocked out last week, it occurred to me that my waiting to improve back to my previous levels of energy had spanned about 8-9 weeks already.

I may write further posts on this and other topics, soon, but right now it’s easier for me to do other things that only require small periods of focus. I’m updating my website behind the scenes, mostly.

Please continue to send your prayers, metta, and positive thoughts to our dear Brooke, her husband, and the rest of her friends and family. Also, to everyone who has recently subscribed here, thank you, and rest assured I will continue to write. (The Life Lessons section has a collection of my favourite posts, in the mean time.) My girlfriend might even be helping write a few sections and/or articles. If you want to contribute either with writing or links that you’ve found particularly helpful, don’t be shy about getting in touch! This site is for my expression, but the information I stand behind should be for the benefit of all.

I shall be focused on finding stability in this relapse.

a rainbow at night

Coping with Chronic Illness: Your Life Is Not Over.

[ estimated reading time: 4 mins 39 secs ]
Update: This post has been featured on The Mighty: Thank you guys!


I received a message asking for advice from a person who was new to chronic illness, having just found out they had late stage Lyme disease. In construing a reply, I came up with a bunch of things I wished someone had told me. For a good book to accompany you on this road, I once again recommend How To Be Sick.

The first thing I believe most people want to know when they get sick, is that their life isn’t over. You’re scared, and you think your life cannot possibly continue unless it continues on the path you were already on before the illness arrived. I offer you my compassion.

Things are going to change, but I assure you, your life isn’t over. I ask you to consider that it never even paused at all. Your plans might have changed, but life is still happening, which I’m sure is evident as you watch others continue their own plans while you are forced to reconsider yours. Reconstruct, don’t abandon. The ultimate goal of everything we do in life is happiness for ourselves and others, so that we can enjoy ourselves and our time with loved ones, and if you’re still here, your ability to do this has changed but isn’t gone.

In the documentary film Wake Up, the wonderful mystic Llewellyn Vaughan-Lee said to the struggling man who sought his help,

“I just see the divine within you struggling to make itself known to you, and taking you on a journey IT wants to go on…which may be not the journey YOU wanted to go on, your ego-self had in mind, but is the divine journey in you beginning to manifest.”

This really, really spoke to me on a core level, even though the film is not at all about illness. I don’t necessarily wholeheartedly believe that disease is predestined for a learning opportunity–illness and death are natural processes and not punishments–but I do believe the Universe can guide us through any situation so that it works out for our benefit. I think my spirit wants to get the most out of this hand it’s been dealt, and you might consider that yours does, as well. “What has awoken in you is not a passing phase.”

It’s okay to grieve the direction your life is no longer going. Just know there is more out there, and grieving is a part of joy. I repeat: Grieving is a part of joy. Don’t try to force yourself or your loved ones through the stages of grief faster than any of you can handle, and remember the process doesn’t follow a straight line.

You are going to be okay.

At first, you may be entirely focused on cure cure cure. You may seek validation that your symptoms are real and try to prove it to others through research, because the people in your life may not believe you, especially if your illness is invisible. If you eventually find a cure to be unavailable, you may spend long periods of time–weeks, months, or longer–trying to find a treatment to slow down your disease; your loved ones might go through this, as well. If that doesn’t work out, still, your life is not over.

Buy yourself nice things. Don’t let anyone tell you that you don’t deserve nice things just because you’re sick or have to go on disability; this is the only life you have. Don’t wait to begin your life again “when [this or that] happens” because your life is already happening right now. Remember that the future is made from nothing more than present moments like these, and

“If the present moment has peace and joy and happiness, then the future will have it also.” (Thich Nhat Hanh)

Don’t let your surroundings be drab; make sure they make you feel good, mentally and emotionally. Get comfortable clothes. You probably spend more time in bed than anyone you know, so that needs to be comfortable, too. Invest in a pill organizer that doesn’t psychologically drain you. Make pain management a priority because uncontrolled pain is its own disease.

Learn to gracefully allow people to leave your life, but don’t close your heart when they go: You’ll need that open space for better people to walk into.

Be compassionate with people who don’t believe you. Remind yourself that if they truly knew how much you were really suffering, they would never treat you that way.

It’s okay to not treat your disease, because many advanced cases are incurable. It’s okay to treat your disease by any means necessary, also. If you choose one at one point, it’s okay to change your mind. It’s okay to treat some aspects of your illness and not others. You may not have any control over the disease, but don’t let anyone–not even yourself–convince you that you’re not in control of which treatments happen to your body.

There are different groups in what many call the “spoonie” community, and you’re going to find where you belong. You’ll also probably change roles many times. There are the advocates; the emotional caregivers; the writers and bloggers; the medical advisers, some of whom are actual physicians; the philosophers…

For the people who continue to advocate and fight for advancements in how to help us, including medically, thank you, for you play a part in us being heard. For those who spend their energy enhancing their mental and/or spiritual growth, thank you, for you teach us how to live day-to-day. For those who help us navigate the scientific waters and avoid snake oil salesman, thank you, for you help us use our time and money wisely in a world where physicians may not even exist to help, yet. We are all in this together.

a rainbow at night


Relevant posts from this article:

Reflections on a Year Lived with Illness

Welcome to 2014. May all beings be peaceful.∞May all beings be happy.∞May all beings be well.∞May all beings be safe.∞May all beings be free from suffering.

I had all sorts of things planned following the end of my treatment. It delivered me a burst of energy, alongside my new-found awareness that if there was anything I wanted to do, I needed to do it now. And I had so much on my heart to do, experience, and visit. And I did them all! But I think it led me to believe there might be something wrong with me, now, for not wanting to do so much. The truth–which I just realized after starting a documentary called Raw Faith–is there simply isn’t anything calling to me right now. In perfect honesty, I feel I’m being called to let go of so much, now. And maybe that is okay! If every season is beautiful, and nature is perfect, then maybe I’m right where I’m supposed to be, and what I’m supposed to be doing right now, is just this. I’ve spent a lot of brain cells wondering if I had unintentionally turned off my intuition in the wake of so much loss from the past few months. Until today, it never occurred to me I could still be right “on track,” even in my assumed inactivity.

Last year was a whirlwind, but mindfully so. I wanted to visit close friends, revisit old friends, make new friends and visit with them, too; visit with family I’d never seen, or rarely saw; I did all of this. And I wanted to get out more because I was so tired of only ever getting out for doctors… And did I!

I spent three weekends in a row in the French Quarter, and for my birthday I stayed there for a week. I went to orchestras, ballets, aquariums, zoos, beaches, coffee houses, new restaurants, tea rooms, historic landmarks, stayed in the ritzy hotels with ocean views and two-room suites, swam in water fountain pools, saw the Dalai Lama, learned more French, took up Tai Chi, redecorated my room, sold my car for a newer one, “read” a new audiobook every month, dressed up for every holiday, spent my birthday with my best friend, fell in love, bought tons of flowers, ate tons of amazing food, took tons of amazing pictures, listened to tons of amazing music, and saw tons of amazing films, in theatre instead of at home.

I also slowly but surely upgraded my technology (even my bed) to better suit my ever-changing needs, from a bluetooth speaker that negates the need to get up and change CDs, to a television that’s now mounted on my bedroom wall with a resolution I can actually see and the colors of which I feel are a spiritual experience. These things made being in bed in between all of those excursions–with however much pain and relapse–much more easy to bear. I only went to the ER twice.

There was also heartache. When you begin to change, either your circle of friends changes along with you, or the Universe asks that you let them go. Not everyone is meant to stay in your life forever; most aren’t, actually. One friend and I parted ways early in the year, but it was safe to find closure, so we did. Another had patterns of making it unsafe to share my feelings, so it didn’t end with the closure I’d hoped, but I ultimately had to let them go, too; at least I learned self-care from it. Another simply didn’t wish to find closure, and left. Two did that, actually. I had a girlfriend for several months, but due to dishonesty it ended badly, even though I am thankful for the lessons it brought, including a profound awareness of my own commitment to authenticity, something I am entirely unwilling to sacrifice for anyone or anything. Little did I know, I had already met the woman I would fall deeply for, afterward… ;) She and my best friend for the past thirteen years, join me in 2014.

© a rainbow at night

I don’t expect this year to be like the former. I guess for a while I expected to have a similar desire for activity, but I don’t, and I’m okay with that now. My fatigue is so much more prominent, though my pain levels have stabilized for now. In March, a good friend and I shall attempt to drive to California to see the Redwood Forest and San Francisco. That’s my big plan for this year, but even if we only end up driving aimlessly, instead, it will be wonderful to adventure with someone who shares my appreciation of nature.

You may have heard the quote, it doesn’t matter what you do as much as who you’re being while you do it. 

Who do you want to be for the next 334 days?

a rainbow at night

How Did It Get Like This? I Was Not Raised to Be Peaceful.

© a rainbow at night

I had an unexpected moment of crying earlier, after realizing I had gone back to some old, unhelpful habits, but what actually brought me to tears wasn’t the slip-up. It was the sudden, immense gratitude I felt over having become this person I am today, who now not only has the tools to change and live better, but even the awareness to notice when they’ve regressed. We’re talking about me, this woman who was raised with a psychological and spiritual toolbox that could only ever bring about mental and emotional distress, whose relationship with almost everything and everyone was accompanied by intense suffering… Simply put: I was not raised to be peaceful.

I was raised to judge, be cynical, feel vengeful, hold grudges, be elitist, a perfectionist, and to never relax. No one wants to suffer like this, but we can only do what we know at that time. I am a completely different human being, now, although like anyone, I can slide back into old thoughts, habits, and behaviors when something or someone triggers my protective defenses, when I react instead of respond. But now I have enough awareness to pause, realize when I’m not happy, and decide what I can do about it. I now sit with the knowledge that I am worth my own happiness; that I’m worth investing in myself and my healing in all ways; that it’s okay not to be like everyone else around you; and it’s okay to be the first to change.

Unfortunately, what often happens when you’re the first to make positive change within your circle–whether it’s your friends, family, or family of origin–is the very people you thought would be happiest for you actually ostracize you the most. Their egos feel threatened by you trying to become more or become better, because it makes them feel worse about the damaging behaviors in which they engage in their lives. They lash out and try to stop you from being true to yourself so they don’t have to deal with their own feelings of inadequacy. It’s heartbreaking.


I remember when this path first started, for me. Don’t laugh, but my internet broke for two full weeks, at a time when I had a craving for knowledge, for “something.” So I watched two weeks worth of spiritual programming on my television–perusing channels I didn’t even know I was paying for–and found all sorts of things. I had the realization that there were many other paths to peace than the one I inherited from birth, Southern Baptist Christianity, which teaches we’re inherently sinful from the moment of conception and that only Jesus can “save” us from their god’s eternal wrath. Meanwhile, Buddhists believe in original goodness, not original sin.

The next big step was ordering the Toni Bernhard’s book, How To Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers. Like Mara trying to mislead the Buddha, I could practically hear the voices of my family in my head as I tried to deprogram my former brainwashing:

Who are you to think you can do this? Who are you to think you have what it takes to find your own peace? Who are you to investigate what YOU want to know instead of trusting what you were taught? Who are you to take enlightenment into your own hands? Who are you to think you are even worth it?

The book gave me an introduction to meditation in the form of mindfulness, which was the perfect outlet for me, personally. I don’t enjoy visualization, and I don’t enjoy posing in awkward, painful positions just because they’re supposed to “take me higher.” But I did enjoy learning how to pause and pay attention to my life and what is happening RIGHT NOW, without a need to judge it. I desperately needed to learn how to do this. My life up until then was passing me by because I was never taught to find gratitude in the present moment; I was only taught to get to the next one, and almost all of my actions AND thoughts revolved around using time efficiently.

Underneath it all was the assumption that using time efficiently would equate to a life well lived, but all it actually did was equate to a life that I couldn’t remember living.

Why? Because if you’re always living for the instant gratification and self-congratulation of “efficiently” using the moments that follow, what happens to ones you’re already in? They’re ignored. Instead of living in your actual life, you’re living in your head about what you think could be happening next. How is the brain supposed to make memories out of your life if you only ever give awareness to what’s going on in your own mind? There was so much happening around me, but I was going through life asleep.

The-Time-Is-Now

There’s a saying, if you take care of the Now, the future will take care of itself, because the future is made up of nothing but present moments. Here’s an example, for those who don’t quite get how living in the next moment leads to a life forgotten. You could be reading this half-heartedly, picking up the remote or cellphone every few minutes, distracted, wondering what you have to do tomorrow, what you need to plan in order to make that happen… But is the time to plan for later, when you’re already doing something? You can pause, and realize what you’re doing right now. You may be lying down, or sitting. Your attention is on these words and how they might apply to your life. You may be sipping a drink, cool or warm. You may be comfortable, or uncomfortable. You might enjoy the colors on this page. You might take notice of your breath and realize it’s too quick and shallow with anxiety, and relax your body. Now what are you doing? You’re on the internet–connected to a system that is literally going to outer space and back to provide you with this very moment in time–reading an article. Who knew there was so much peace to be found right here? How has your experience changed since you began this paragraph?

Ironically, while writing this, I heard my mindfulness bell chime. It’s an app you can download for your mobile device (for Android or iOS) that you can set to periodically chime throughout the day, helping you remember to pause, breathe, and focus on what you’re doing in that moment. Toni Bernhard’s describes a method in here book of taking ten comfortable breaths while you focus on one sense at a time: What do you see? What do you currently smell? What do you currently feel in your body? What do you hear?

Is there a Mara in your life, or in your head, telling you that you don’t have what it takes to live a better, more present, enjoyable, peaceful life? Asking you, Who are you to think you can do this?

I leave you with the ever-beautiful words of Ralph Marston yet again, which gave me the courage to even write this blog entry:

“Start where you are, and do what you can. Make use of what you have, in the time available to you, and there’s much you can get done.

Don’t waste your time waiting for conditions to be perfect, for they will never be. Go ahead, with things as they are, and begin making real progress.

The place to aim is as high as you can imagine. Yet the place to start is right where you are.

Let go of any concerns about not having enough time, or money, resources or anything else. Focus instead on the great value and potential of what you do have and of what you can do right now.

See the real treasure that exists in your opportunity and ability to make good, effective use of this moment. Claim that treasure by going ahead and putting forth your very best effort.

Today is your day to achieve and to make your world a better place. Start where you are, and get yourself solidly on the way to wherever you wish to be.”

a rainbow at night

How Wrong I Was: My One-Year Anniversary Without Treatment

Working on my latest piece; if this doesn’t say “artist’s desk” I’m not sure what does…

I had an experience while having coffee with the squirrels the other day. Well, sitting on the back porch, but same difference.

I was watching all of the animals, listening to the birds, and feeling the gentle breeze. A chickadee–my favourite–was chirping in the midst. Any other day this would’ve been a normal backyard, but at that moment, it was a sanctuary.

There was so much out there: I counted at least ten species of animal within twenty minutes. And as everything just went along with its life, I was suddenly very overwhelmed with the knowledge that life always goes on. It’s humbling and frightening and comforting all at once.

When I opened the door to step outside, everything had paused to look at me. I sat down quietly and started sipping my coffee. Everything went back to its business of finding dinner and fluttering about. Their acceptance reminded me that I was also part of it all—I belonged there.

I glanced over at my house and the walls that separated my quarters from their quarters. Theirs, a tree; mine, a room and bed made from the tree. There were walls to “separate” me from the outside air and ground, protect me from danger and the harsher elements just like any other creature, but all that really separated me from those squirrels and birds and butterflies were four inches of material that the earth provided me in the first place. The stars are always above us even if all we see is a ceiling. We are part of everything. And the earth made room for me to exist, right here.

A few nights earlier, I did that thing where you open your closet to get something and end up distracted by everything else you find. I snatched the sweaters and shoes I bought earlier in the year, for Autumn. Put on a hat. All layered on top of the dress I wore that day. Looking into my full-length mirror, witnessing how perfectly it all went together, I had another “moment.”

I was overcome by how blessed I felt to be experiencing all of this; all of this. Feeling okay with life, even if it is scary; sharing my days with the love of my life; being together during our favourite season; being close to my remaining family; miraculously having funds to take care of everything I need AND want; and being able to wear clothes that represented me, that I picked out instead of clothes discarded from others’ closets.

It happened in a flash of thought, but looking at my reflection, it was as if the clothes were symbolic of all the pieces of my life I’d changed and chosen over this year, hoping they’d eventually, somehow come together in the future; and the perfect way the scattered items “fit,” a reminder of how my life has worked out. All my preparation–in wardrobe choices and life choices–had proved to be more perfect than I could have ever imagined. I had a distinct sense of “I made it.”

My legs do give out more and more lately, but considering how quickly things progressed the previous times treatment failed, I honestly didn’t know if I’d even be walking at all, much less this well, after a year. I didn’t think any of this would have been possible… How wrong I was.

How wrong I was.


Today marks the first anniversary of my relapse in 2012, and the day I stopped treatment. Things aren’t going how I thought they would.

I did not experience remission from M.E. after ten years of living with it, like many do. I did not cure the bartonellosis. My pain continues to expand instead of resolve. I still have mycoplasmosis and I’m not “beating Lyme disease” and I won’t be going into any other treatment programs with the motive of being 100% cured, of any disease.

But I look at who I am now and who I am still becoming, and the people in my life, and the way I experience life, and I wonder if things could possible be any better for someone in this situation. I really don’t think they could.

a rainbow at night

The Choice of Someone With Progressive Disease to Stop Treatment, Part 2 of 2: The Call to Start Living

[ estimated reading time: 5 mins 9 secs ]
Since making my decision, I’ve continued to be pulled in this direction, even when it scares me to think of where it might ultimately lead. So much has showed up in my life to gently guide my realization into, “It’s okay,” and I’m entering a place where I truly believe that. Otherwise, there’s no way I could have any peace at all with what I’m doing.

My family supports me, as do my closest friends. Others are unable to talk about it, which I understand for now. The latest recurrent theme popping up in my life (we’ll call them, Intuitive Affirmations from the Universe) is how much better a lot of people do after their decision to live life instead of treat disease. My most recent encounter was with a woman buying something from me. Out of no where she mentioned her father and uncle who both had cancer, and how her father only made it a year after choosing to attempt treatment, while her uncle made it two and a half after he chose to not.

And of COURSE that’s not always how it works, and people are allowed to choose whatever they think will bring them the best life and most happiness. And yet this is the story the universe brought to me, and it’s been doing that a lot, lately. I’ve also been confronted repeatedly with people in our spoonie community who have passed on, not from their disease, but from their attempts to cure it. Every time, I feel the calling in my soul that this is not how I want to go. I’ve said repeatedly that I do not want to be one of those “die trying” people. That still holds true.

All this helps reaffirm to me that I really am going to face the best outcome by doing things this way. That this way, I will have some enjoyment in life and get the most out of what life has to offer.


I mentioned before that my darkest hour was when I felt like I had to make the decision the Universe approved of, lest I be abandoned by all things good (brainwashed much?), but perhaps that wasn’t entirely accurate. I did think about suicide a lot.

It was worrisome because I’d only ever thought of it when I first got myalgic encephalomyelitis. But I don’t want to harm myself in any way! I love myself and I love my body even if it struggles to be a fully functioning body. After much introspection, it came down to me actually just wanting to be relinquished from the decision of what to do, so I wouldn’t have to feel the agony of “what if I screw up.” Again, in hindsight, I can see why I thought that. If, in that state of mind, my options were to make a decision that would leave me miserable (treating disease again), or choose what I felt to be right but which I was also convinced would leave me abandoned (not treating) … It’s in these moments I have compassion for myself having had to sort through all that.

And I did make it through.


Toward the end of it, I sat and wondered if I would regret my choice to not go into “treatment mode,” having knowledge these genetic polymorphisms exist, and having knowledge of what untreated systemic infections can and will do. Would I blame myself in the future, for not taking action right now to “fix” it? There’s only a tiny possibility it could make things better, temporarily, but it’s just another way to prolong the inevitable.

The loss of life that I would experience trying to keep up with everything involved in “fixing” this, is not worth any benefit I might gain in health, later on.

I do not want that for myself anymore.

My body has a lot of disease, and I cannot devote my precious resources into planning doctor visits; going to doctor visits; finding more doctors based on test results; researching what supplements to take and how to take them; or having to be a part-time researcher in general just to validate what my doctors tell me, because I’m sorry, they just haven’t proven themselves to be competent at all and their ignorance was almost the death of me on more than one occasion, if I hadn’t trusted my gut…

In a personal post I wrote the other day, I described this as using all my energy to prolong my life, just so I could continue on with the task of prolonging my life. Where is the actual living? I wouldn’t have time or energy to do both, and I cannot, cannot, cannot put my life on hold anymore.

Some people would be driven mad if they didn’t go into treatment mode. I was like that for, what, almost thirteen years? Now, I would be driven mad if I did. Enough is enough. A season for all things, and whatnot. (All seasons are beautiful and necessary…)


These are the most personal words I’ve ever written, the most personal things I’ve ever shared. And I share them in hopes that someone out there will benefit from it. I don’t personally know of anyone else choosing this path in response to my particular “set” of diseases, so if you happen to know of someone, please send them in my direction.

As I often do, I leave you with a quote from Ralph Marston:

“You have nothing to prove and everything to be. What matters is the truth of who you are, not the way you appear to others.

Give the honest truth of yourself, and you have no reason to strive or worry about making a good impression. Give the authentic truth of yourself, for it is the most loving, compassionate, uplifting and enabling thing you can do.

You do not have to strive against your own thoughts of limitation. Allow your unique beauty to continually unfold, and experience the power of how good and right it feels.

You do not have to be held captive by the thoughts or actions of others, or even by your perceptions of those thoughts and actions. You can allow yourself to be, positive and whole and fulfilled, now and always.

You have everything to be. Feel the miracle of your existence, and fill the world with joy.”

a rainbow at night

 

Let’s talk about my New Year’s resolutions.

There are lots of things I’ve wanted to do, but chose not to in the interest of preserving spoons for a perceived “better time,” which I imagined occurring after treatment when I would feel better/not need to devote my energy solely to physical healing. Buuuuuuuut with the failure of all those treatments and my subsequent new-found sense of Now… Let’s talk about my New Year’s resolutions.


I’m going to listen to one audiobook per month since I can finally afford an Audible subscription.

Truly, “serendipity” doesn’t even begin to describe what the Universe has effortlessly brought into my life since The Big Relapse began. Everything I’ve needed to get through each stage has practically been placed into my hands with a loving, “Here you are, my dear.”

So it shouldn’t have come as too much an additional surprise when my friend Barbara posted about this book, A Year to Live: How to Live This Year as If It Were Your Last, by Stephen Levine.

Click to read more on Amazon.com

Even before I saw it, I had the mindset that I was going to take 2013 by the horns and embrace all of it as if this could be “it,” even if it wasn’t. Turns out, there’s an entire book dedicated to this very thing! And Barbara is reading it! And now I am, too, as my first audiobook. (Downloading the Audible app onto my smartphone made this especially accessible, and the Philips SHE3580 series earbuds make it very comfortable for someone sensitive to pain to listen whilst lying down.)

Another thing that I just found–or that just found me, perhaps I should say–is The Big C, one of those shows you’re interested in but it just doesn’t feel like the right time to watch it. Until you finally do, and realize it could have never impacted you more than it was right then. ♥ I’m excited for the finale this Spring! (I’m excited at the prospect of being alive in Spring, aha!)

Speaking of which, on to my next resolution.

 

Many may have seen what I’m calling “the Joy Jar.” The idea is to write good things that happen to you during the year on pieces of paper, and put them into a jar. At the end of the year, you will have a fine opportunity to get a papercut a collection of events that made you happy to reflect upon, and it can help people focus on the positive side of life when it’s so much easier to focus on what you lack, or what you perceive to be wrong. But I thought I’d augment the idea into something I can actually see myself doing.

journal
Several years ago a friend gave me this journal that I didn’t get to write in very much before illness worsened.
Every day, I am going to write one good thing/something for which I am thankful. And I’m going to continue my goal to attain fluency, so I will be writing it all in French.

 

One of the most unexpected things I realized at the end of last year, was that I am so very tired of only leaving my house for doctors. It usually takes at least two days of carefully organizing spoons, one day of rest, and several stabilizing medications, to get me out of the house in a semi-functional capacity…and arrive at an appointment. Why? Because it’s critical for my physical health. So what made me think that my emotional health was any less important? I’m such an advocate for taking care of your mind, and yet I completely surpassed the notion of that care applying to something like this, too.

So I’m getting out more, to do things that don’t involve anything medical.

I fought for years to be able to breathe again and walk again and I’d like to do things–important things, fun things, memorable things!–while I’m still able. I shall go to the theatre more–performing arts and movies, visit more with friends, and dine at one new restaurant per month with my family.

English: The 14th Dalai Lama, Tenzin Gyatso in...
The 14th Dalai Lama, Tenzin Gyatso in Antwerpen, Belgium 2006
And I have plans to see His Holiness the 14th Dalai Lama this year!

Such an event is also on a friend’s bucket list, so we’ve decided to go together. I’ve already gone to the park this month, and in a few weeks I am going to the zoo. (I love the zoo; I used to go every year.) Other things I have planned for the near future are going to see a local chamber orchestra, going to a dance performance (with seats in the front row balcony), and taking my niece to see Jurassic Park in 3D… I may think of more, who knows!

 

Finally, I’ve vowed to follow through with my artistic urges, wherever they lead.

I’m going to express myself through whatever creative means are natural to me. I’m going to write uninhibitedly, because

“Those who matter don’t mind, and those who mind don’t matter.” (Bernard Baruch)

I’m going to use those watercolours, the GOOD paints and the NEW brushes and the SPECIAL paper I’d been saving for “important” projects. And I’m going to take those pictures, I’m going to record more memories with my gorgeous new Samsung WB100 digital camera with HD video, 16.2 MP resolution, and 26X optical zoom.

“If you bring forth what is within you, what you bring forth will save you. If you do not bring forth what is within you, what you do not bring forth will destroy you.” (as attributed to Jesus in The Gospel of Thomas)
I’m going to live my life this year, and no longer put things on hold.

Did you make any resolutions this year? Do you believe in making them, or are you the type to make a decision whenever you feel ready for it, New Year or not?

a rainbow at night

This blog is changing…

When I opened this blog I was in the midst of my immune system crashing from an acute infection the year before. Bartonellosis raged from being off treatment/antibiotics for the last eight consecutive months. I needed somewhere to write it all down because no one else was talking about it to the point that I could understand, save one woman named Peggy who had M.E. for years and then got bitten by a bartonella-infected dog. I related to her because our symptoms were identical.

Eventually, that all worked out and my blog from start to January 2012 was a “diary of treating bartonellosis” in a way that I’ve never seen online, and perhaps that’s why my blog got so many visitors. What I didn’t expect was to get almost 10,000 views in 2011, and I never could have expected to get 20,000 views in 2012, last year.

So am I writing to an audience now, or should I do what I’ve always done, and just write?

Immediately the answer came to me, because the purpose of my blog really hasn’t changed all THAT much. It’s still chronicling the life of someone with chronic illness, and one of the most substantial things that happens with any life changing event like a disease is the fact that it changes your life.

If you’re the same person before and after an illness, you missed the point.

So with that, it’s natural that my blog would change with me, as I grow and adapt to a different way of viewing life, a better way of viewing life. I used to be very technical, still having the brain circuitry of someone who was inching toward their Ph.D. in neuropsychology.

For example, the categories you see on the side are for me to click and find, “When did I last experience this symptom?” If it weren’t for me staying on top of that, my doctor and I had no way for me to chart my progress in bartonella-killing, so for a long time it was essential to my even staying alive. Now, it’s.. just a reference point. I put them in a drop-down menu instead of a rolling list.

I don’t think I’ll be doing as much of the technical, research article-posting, news-commenting, advocacy-oriented stuff that doubled alongside my symptom charting. Not never, just.. not as much. I’ll always be a researcher at heart, but why I write here, I feel, is very different compared to when I started. And that’s a good thing.

The “Life Lessons” section was never planned, but after so many heartfelt entries about sorting through the emotional side of living with incurable disease, of living with disease that people blame YOU for getting and keeping (?!?), that does whatever it wants no matter how you try to make it better… Well, it birthed itself, really. It’s probably my favourite part of this site.

I imagine things will follow a similar vein as that.

 

People didn’t even know my name until a couple of months ago. Hi, I’m Kit. I’m an Optimistic realist, Writer, Artist, Universalist, Buddhist, and Spoonie. Welcome to my blog, where I always look for the colours in the darkness…

a rainbow at night

“All is well, and has been, and will be.”

[ estimated reading time: 6 minutes 26 seconds ]
This year I learned that looking forward is still looking away from the present.

Even looking forward positively, is still not living in the moment, not looking at Now. You can’t get caught up in all the things you’re looking forward to having or being, because you’ll miss the opportunities of the only life you have: The one you’re already living. It’s good to have goals! But, for some things, it is not the end result that is most important.

I’ve been noticing that now it no longer serves me to see this “attack on Lyme” as a battle to be won, where anything other than eliminating the bugs is a failure. That cannot be my focus anymore. It’s not my focus in dealing with M.E., and it cannot be my focus for dealing with neuroborreliosis, either.

I used to be okay with waking up every morning knowing I had a war to fight. Because for a while, it really was a war–beat the bartonella, do whatever I had to in order to get it under control, or it would very quickly be the end of me. And like a patient recovering from chemo and radiation, my body paid the price of all the medications needed to do that. But at least I’m still alive. I did it! I just can’t “win the war” against the Lyme that way…

I’ve had to stare reality in the face for the past several months and recognize that I may not “win the war” at all, at least not in normal standards. I have to redefine what “winning” means to me.

 

This is not a disease I can conquer forever with a few rounds of treatment. With my immunodeficiencies, very neurologically-oriented six-years untreated strain of infection, ten-year history of M.E., and twelve-year history of just trying to stay stable every single day, my body has been through a lot. So, to be perfectly honest, I may never get rid of Lyme disease. But that doesn’t mean I’m going to just let it take over.

I just can’t look at it like my goal is to “win,” where winning means nothing short of slowly eradicating the infection, because truly, why would I do that to myself? Why would I invest all my energy and focus into something that, for all intents and purposes, probably isn’t even possible anymore? Why would I do that, when there is another way, a way that brings me peace and also allows me to treat my disease?

Because that’s what I have left–I have a treatment, not a cure.

I used to think it could be a cure, because for most everyone, it is. Even if they find it late in the game, many will just have a longer battle to fight, but they can “win.” They can get IV antibiotics if their case is in their CNS, or they can at least take loads of oral antibiotics to make sure it dies and stays dead. That is possible, even for many with coinfections. But me?

Even if I could get IV antibiotics, they would probably kill me in the process; even oral antibiotics are almost impossible. (Almost.)

Maybe if Life had shown me the infection earlier, we could have cured it, even with all my additional factors. But that didn’t happen. I’m only thankful It brought information my way when It did. I am glad bartonella and mycoplasma happened, to alert me that I had something else going on that was about to irreversibly damage my body. I’m glad I am someone who pays attentions to those things, or I wouldn’t be here right now. But that’s the thing: I am still here, and I still have a life to live…even if it’s not the one I imagined!

 

I naively thought that when you go through something like this once (getting diagnosed with M.E.), twice (getting diagnosed with Lyme disease), it might be over, the whole “massive illnesses that alter the course of the rest of your life” thing…

But that wasn’t true, either. It took me almost a year to come to terms with the Lyme disease diagnosis, because inside I knew if someone like me had it, it’d probably be with me for life. I didn’t want to accept that. Then once I started getting better for a while I thought, okay, it’s not too late for me, there is still hope! And back then there was hope because it’d only gone untreated three years! And even now, I haven’t given up… But like I said, looking forward is still not looking at what you already have.

Someone shared with me a Žižek quote that pretty much sums up everything:

“Our desires are artificial, we have to be taught to desire.”

I was taught to desire an eradication and to accept nothing less. I was taught that if I did certain things, then things would work out, go the way I wanted. I fixed my focus on “I can get better again if…” and put in my head a bunch of things that could happen, should happen, that would allow me to have the life I wanted. And I went after them, like anyone would…

  • “If I eradicate the bartonella…” I did, and my reward is Life.
  • “Then I can get the Lyme disease under control…” But I cannot handle the treatments anymore.
  • “Because a lot of people with M.E. experience another remission after about ten years.” But I relapsed, instead. Twice.

 

Things didn’t go how I planned, how my doctor planned, how my friends and family planned. But my life is not over. I just have to come to terms with my new reality–a life with Myalgic encephalomyelitis, and a life with chronic relapse-remitting Lyme disease. I may eventually get a diagnosis of multiple sclerosis at this rate, but at the very least, that disease does not face the same mockery by the medical establishments (or insurance companies).

I have fought well and hard for the health I do have, and I will continue to fight to keep it, but I will not, cannot, see this as a “daily battle to win the war,” anymore. It is not. Now, it is better for me to wake up and think about my other goals, and have “treating Lyme” as just another part of my daily regimen, a part of my life that will never change just like having M.E. will never change. I cannot give away all of my spoons to treating a disease that will still be around after the fact.

“You are here, in this moment, able to do so much that’s worthwhile and fulfilling.

“Your life has real purpose, and when you let go of the superficial concerns, you can feel and know and follow that purpose. Life is beautiful, and by taking the time to look closely, you can see the beauty everywhere.

“All is well, and has been, and will be. The genuine goodness within you refuses to be compromised by any of the world’s ups and downs.”

“Go ahead, step forward, and live with total, solid confidence. Let every thought and action be filled with positive purpose and the knowledge that ultimately, you cannot fail.” (Ralph Marston)

My disclaimer: If you’re a fellow patient of Lyme, I beg of you not to take my own need for expression and use it to convince yourself that there’s no hope for you. You and your doctor can only figure out what’s best for you after a careful analysis of your individual situation. I’m not even saying there isn’t hope for me, but I’m fully aware of how some people think and thus how everything here might come across… It actually stops me from writing sometimes, but I don’t want that anymore.

Expect to see more of my uncensored thoughts in 2013, and stay strong, no matter what decisions you get to make. :)

a rainbow at night

For right now, this needs to stop.

As far as my relapse conundrum, I could not continue treatment, after all. I just.. stopped. I am still so emotionally drained, and my body is at wits’ end. I’ve been off antibiotics for a month, now, and I’m flaring at the moment because of the usual beginning-of-the-month bug-flare that happens… Only this time I am not protected, so it’s scary to think of what they’re doing in there! How can one feel this close to having the flu and not actually have influenza?

On Samhain I ultimately decided to take another two weeks off and just restore my body as much as I can, with only the necessary things and as few medications as possible. I don’t think I have any yeast problems from the long-term antibiotics, but I’m going to take a few doses of candidiasis treatment, just in case. And then I’ll talk to my LLMD and see where we can go from here.

I can’t thank you all enough for the responses to my last post. At any given moment, I am ready to reach out for help, or curl into a ball and never speak again. It’s a constant back and forth. I want to say, “the disease is what makes me want to retreat,” but it’s not even that. It’s my response to it. It’s knowing that I do have some control here, I do have a choice, and I’m terrified of making the wrong decision. Continue this grueling treatment regimen and make myself worse, an inevitable decline, or forego treatment completely and still begin an inevitable decline. But I’ll tell you what.

My intuition says to stop.

And I always, always listen to it. It says I need this break. It says I could use it to heal my body as much as I can, and in two weeks I may know clearly again what next step to take. I can’t believe in God as much as I do, and ask Him to guide me, and then not follow what I feel is the right course of action, even though I can’t explain it.

That became even more apparent today when I really wanted to take my antibiotics again, because the thought that these infections are inside me running amuck and I have nothing to stop them, is very frightening. It was then that I noticed how strong my conviction was to not resume my treatment…

Anyone think I’m crazy, yet?

I can’t help but notice that the idea of treatment helping me, which has always been my motivator in the past, has not even crossed my mind. It’s as if somewhere inside I know that to continue with it at this point in time would do me harm. Logically speaking, I think that not treating is also pretty bad, but somehow, not as bad as taking these medications; at least not right now.

So that’s where I’m at.


I also had a visit with my new neurologist, and it wasn’t as productive as I thought it’d be. Part of that is my body’s fault because I only got to ask him half of what I wanted–I was so bad-off that morning I almost passed out in their waiting room.

In response to my relapse he said, “There will be good weeks and bad weeks, good months and bad months.” And apparently when you tell someone you have myalgic encephalomyelitis they don’t think twice about you having severe daily headaches and eye pain (i.e., “I guess you do have headaches”). But he’s a good doctor who at least didn’t outright call me a hypochondriac. I’ve noticed with having this lesion on my brain, people tend not to think you’re “just exaggerating” quite as much. He said it was post-infectious demyelination, but it wasn’t changing in size so he didn’t feel I needed a repeat MRI for right now. My various damaged nerves are healing up, so that’s a good thing! So much so, that he didn’t  think I ever had facial palsy…! Luckily that’s in my notes from my last neurologist. :\

He also thinks all my movement disorder problems are Tourette’s… Which is wildly inaccurate, but because he thinks Tourette’s Syndrome is just a “group” of movement disorders rather than its own thing, and that it should be diagnosed only after the other movement disorders have been ruled out, it would make sense for him to say that. I can always see that movement disorder specialist should things progress even further, so. (I know it’s not Tourette’s because, while my TS does act up when I get new infections, it acts up completely differently than the problems I’m currently having.)

He said do NOT take any triptans for my migraines (the main reason I went to see him, actually), and gave me Cambia powder to try for my next attack. Which my insurance won’t cover, of course, so I’ll rely on samples, like the other three medications I can’t afford. He diagnosed me with complicated migraine and said I really should be on a preventative medication with this type of diagnosis, but I mentioned that not ALL my migraines do the whole “Hey I Look Like I’m Having A Stroke” thing. I’ve had them fifteen years (or at least that’s when I was finally diagnosed), so it makes sense they’d eventually progress, but I only get “those” maybe once a month or every two months…which is probably not very good, but good lord I just can’t handle another medication right now, especially when my options for preventative medications are very limited! I think he actually ran out of ideas for me since Topamax is practically my only choice and it lowers my intracranial pressure. :\ But at least Migraine is a well-studied disease and, should I live long enough, they will probably come out with something new, soon.


The best news I have is: (1) I got to visit a friend (actually, I returned to the scene of the crime of where I caught Lyme disease), and I recovered pretty easily from it with all the careful planning and tailored resting schedules. And (2) I invested in a tilting overbed table. I don’t think I have words to describe how useful it is. How have I never thought of this before? Person who is in bed most of the time, desks that go over the bed… Regardless, this thing is amazing. What I really love is the little mini-desk on the side that always stays flat so you can put stuff on it!

a rainbow at night

Fireflies, Coyote Arias and Friendships Adrift (via My CFS Life)

I’ve been struggling a lot again lately with feeling marooned. In my spirituality, I am increasingly aware that I am intended to live differently, and that it is both grace and blessing. That doesn’t make it easy – this feeling of being left behind.

As I stand here at the edge of my world, on my shore, friendships drift into the distance. Caught by other currents, destined for other ways of life and sailing for distant lands I can barely remember exist; they embrace lives I cannot have and for which I often ache. Ever greater expanses separate us and though their signal flares can sometimes yet be seen, I cannot quell all pangs of sadness as I stand with my feet planted in the shifting sands of my shore.

I look over my shoulder at this place where I stand, there is great beauty here and much to be discovered, but it comes at a price and I get so weary of paying. Sometimes supply ships come to my shore, my happiness to be among them mixed with challenge to my peace. They bring things I need and also tales of larger life that can be hard to hear, fanning the ember of longing into dangerous flame. One ship’s crew, a frequent visitor in the past, asked me how I manage here and when I said “I pray and God helps me” they left with laughter. Oh well, they asked and what was I to do, lie? I did not preach, only answered a simple truth.

Some of the ships arrive less and less frequently, more fulfilled at busier ports of call. Some, I suspect, will not return, and though difficult to accept – it may be for the best. I can do nothing to change it anyway. Read More

via My CFS Life

Slowly but Surely: The Beginnings of Improvement, and Adding Azithromycin

…I think the pieces are coming together. I had several “episodes” since I last posted, and.. let’s be clear, that by “episodes,” I mean the thing that happens when my face and tongue go numb, my arms (or arm) goes numb, I shake and temporarily cannot swallow, which may or may not be precipitated by an urge to urinate. I’ve had lots of different types of numbness over the past several weeks, so I felt a need to clarify.

I eliminated several other things that had any timing whatsoever to do with these attacks and/or Migraines: Ensure, BOOST High Protein shakes, things with Vinegar, things with nitrates, caffeine, black tea (even decaf), coffee (even decaf), Truvia, Splenda, and Aspartame (which is the devil anyway).

Because anything and everything can give me a Migraine attack these days. I had something marinated in apple cider vinegar and my body had a general meltdown. I had green olives with half a protein shake and had another “episode” almost immediately, so I can’t tell which was the culprit. But, having done all this, I actually haven’t had a Migraine in two days. I can’t believe that’s an accomplishment, but I’d been getting them every day, otherwise. I even left the house yesterday, and didn’t get one! And in the mornings, I don’t have much numbness in my arms and face, but I can’t yet determine if it’s the absence of Truvia or just a well-timed symptom. I’m scared to find out the hard way, right now. The general battle is finding out what cluster of symptoms is the bartonella, what cluster has to do with my Migraines, and how do we prevent them both. One interesting thing though: It happened this morning, and I hadn’t any Truvia, or any.. anything! Which means it can’t be purely the Truvia, despite me having a decrease in overall numbness since ceasing it. (And there’s the kicker. None of this is purely anything, but it seems to be a lot of stuff happening wrong at the right time. Which is another characteristic of my Migraines: They don’t happen until a lot of triggers add up, and then just one more will push it over the edge.) Now, what affects me worse in the mornings? Bartonella. So, which is it? My conundrum should be apparent.


My LLMD put me back on Rifampin as of the 17th since I didn’t have anything crazy happen after a month and a half on it. Then, instead of adding Doxycycline, which is driving me out of my mind with its effects and herxing and messing with my throat/vague nerve, we’re adding the Zithro! I’m pleased to report I can handle all temperatures of food and drink and have no trouble with food texture. :D I’m on just 250mg, but considering this lowest dose still makes me feel like I have the flu every evening, I’m glad we’re starting so small. I’m still on a normal dosage of Rifampin and therefore we’re killing the bartonella at a reliable level, so that’s great news for me. I will still improve at a fairly decent rate, and can expect a change in ability levels within just a few months. I’m also lucky to not have developed any reaction to Rifampin, which can happen when you stop and have to start it again. It’s apparently still working as well, because the bartonella flare I had after I restarted it (which happened to be the next day) was insane. As in, curled up in a fetal position in a dark corner of my room, sobbing hysterically, not knowing what’s going on, or even how I got there, insane. So… We definitely have to kill them bugs. Kill them dead. (This goes in the category of “things I’d never admit did I not know they happened to most people with chronic bartonella.”)


The Topamax is amazing and I’m at the full 25mg right now. My Migraines… Well, I’ve had them a long time. So I can identify when they’re coming on, but lately they have been so complex, it’s ridiculous. Usually, my migraines affect the right side of my face, with numbness and pain and temporary facial unresponsiveness; my speech slurs and I cannot tolerate any sound or light. Bartonella attacks the right side of my face too, though. :\ This recent development where my arm goes numb and my tongue goes numb? It’s anyone guess whether that’s part of a Migraine or part of a bartonella flare or herx. (It’s sometimes accompanied by this “zap” sensation as well, which I’ve never felt as part of any Migraine.) But after searching LymeNet I found out that other people with bartonella are experiencing numb tongue accompanied by numb arms. How strange is that?! One thread even talked about the general numbness that’s been creeping up on me since I started the Rifampin! And on that note, twice after taking Rifampin this time around, I couldn’t feel my legs, and all of my limbs generally have that “fallen alseep” feeling at various parts of the day now. Especially at night, when I wake up and notice my limbs are cold and numb. That’s a bit scary, but as long as the sensation returns, I can deal with it. So! The mystery of the random arm numbness and terrible headaches that often precipitated them, may be solved! My severely increased Migraines may just be an unfortunate consequence of treating bartonella. If this is true, then it makes sense why they gradually got worse throughout treatment.

In general, the “episodes” and my migraines are getting less severe and less frequent. I still have trouble when I eat sometimes, however. (Things that HAVEN’T been happening, barely at all? No dystonia, no air hunger, and no troubles with low oxygen.) I will be sticking to this “Migraine diet” until I feel safe enough to come off of it. The Ensure drinks are once again off-limits, but that’s okay because my appetite is very healthy and I’m not losing weight! I’ve been gradually adding back my supplements and herbs as well, and I’m able to tolerate them again. I’ve actually been walking around more in the past few days than I have.. possibly since January, which is amazing. As long as I don’t overdo it, I think I’m finally at a stable point again. I’m not tired, so I’m having to force myself to rest and not do more than is necessary, which is.. well, it’s annoying. It’s like sitting a healthy person in front of an amusement park with unlimited tickets and telling them they can’t get up. :| But if I’m good now, in the future I shall be able to be active without dire consequences, so I must be patient. God’s given me the best opportunity for having rest, so I need to take advantage of it. On the scale right now I’d say I’m at, 20% physical, 30% cognitive, and still 7% symptom severity. The symptom severity is definitely the worst part of this right now. They are still terrible and flare so easily, but I do have a lot more cognitive functioning so I can at least use my brain more. :)


I saw my primary physician. I had to update her on everything that’s happened during the past three months. She says not to be too worried with the brain lesion unless it changes…which is good advice, right? It’s there, it’s done; it’s if it changes that will be cause for concern. She also wants me to see another cardiologist in case something else is contributing to the mitral regurgitation. Which is, again, sound advice. Just because I have things that affect my heart doesn’t mean nothing else can be going on. So for peace of mind, my mother is taking me to one Tuesday to get a bunch of tests run, just to make sure there’s nothing there we can potentially fix.

I’ve had the same doctor for ten years. She’s seen me from the moment I started going downhill, and through the M.E., and through the remission, and then through the relapse and these infections… So her advice means more to me than any other doctor. She briefly mentioned to me something that.. sort of startled me, in a strange way. She said something to the effect of:

“I know you’re at a race against time to treat these infections, but you know, even in cancer patients, if the chemo is going to end up killing them… Sometimes it’s wise to just let things take their course, if the treatment is going to be just as bad or worse than the disease, so I really hope you can get on something that will work, soon, because it pains me to see you continuously going downhill like this.”

Hearing her say that just sort of drove everything home for me, I think. These past three weeks–goodness, nearly a month!–since ‘all of that’ happened, have just been one big blur and me taking it one hour to the next, to not upset the delicate balance that my body is struggling to maintain. Consciously I do realize what I’m up against, but there’s something about talking to your doctor for twenty minutes and having her sum it up all into that

It was never a surprise that things might get this bad. Even in my old journal from the past year, I found where I’d written things like this:

December 5, 2009
“Two weeks ago I couldn’t make it down my hallway. Tonight I shuffled around in the yard, and made a snowman. No, I wasn’t exactly running around, but I was STANDING UP and doing so for more than two minutes…
I’m making this post now because if what I feel right now is any comparison, tomorrow is really going to suck. No one wanted to come out in the yard and make a snowman with me. They walked outside for a minute then watched from the door as I shuffled about, but… Hell, I have no idea what condition I’ll be in next time it snows, especially if that’s a year from now. I could be better, yes, I hope, but I could very well be bedbound yet again, or worse; anyone faces these risks for some reason or another, but that knowledge is always in my mind because of.. you know.”

I guess it’s sort of like when everything tumbled in July of 2010, and I ended up living with family again, barely having a spare moment to think because things had reached a new level of bad and it all happened so fast… It just happened again, I guess. And now I’m realizing it. (Granted, I’m back on my olive leaf extract, so I’m much more “aware” of everything again!) But somehow–and the media doesn’t help–you just imagine that with enough determination you won’t “let” yourself get this sick. Ahaha. Like it’s a choice…

a rainbow at night

“The times weren’t right, and I couldn’t talk about…” needing a wheelchair.

There are many people who get a wheelchair before it becomes a full-time necessity.

They get it as an optional disability accommodation; an option enabling them to more easily access places they otherwise couldn’t without great difficulty; an option saving them energy during long trips; an option helping them keep up with able-bodied people when they otherwise could not; an option improving their potentially-impaired quality of life. This is a very smart thing to do, I think.

I am not one of those people.

I’m in the other group, of people so stubborn-to-a-fault, so full of unintentional, internalized ableism we won’t even think about using an accommodation unless it becomes impossible to deny. Because this is, at its core, a fight with and denial of reality.

After noticing how much further my umbrella cane helped me walk, I was fine with learning to rely on a cane. And in the past, I did entertain the idea of a wheelchair because I thought it’d be a shame to miss out on things just because of an inability to walk and/or stand for very long. Then the reality that is myalgic encephalomyelitis caught up with me, and how disastrous the consequences would be for using my arms to propel myself. And who was I to decide that my family or friends were going to have to push me, just because I physically couldn’t, just because a wheelchair would have made things “easier”? It’s one thing if there isn’t a choice, but I couldn’t allow my mere “preferences” to involve other people to that extent. To avoid deconditioning, I felt if I could still walk at all then I needed to do it whenever possible, but without causing relapse. So you see, it’s not really having a wheelchair for occasional use that disturbs me, nor is it even needing one when I go out, like to doctors. It’s being wheelchair bound that scares me, which is what would need to happen before I ever broke down and got one.

Well.

It was a month ago today that I realized I had entered into a new level of disability. I’ve become unable to write (by hand) more than a few sentences, when I used to be able to write a letter or card. I cannot chat on instant messengers but a few times per month, when they used to be a vital part of my keeping connected with friends. My blog entries now take several hours, even days to type. My muscles have started to give out way more easily and more frequently than they ever have. All activities in general are much more limited.

It’s not that I purposely avoid these things to better my chance of feeling well later, like so many psychologists would have the world think about ME patients. No, it’s that even if I wanted to do them and just “pay the consequences later,” more often than not I simply couldn’t.

There are several disability scales out there, including some specific to the effects of particular diseases. For instance, I wouldn’t be able to accurately rate myself on a scale intended for MS patients. The easiest one for me to use is the Hummingbird Foundation’s M.E. Ability and Severity Scale. As of where I’m at right now–with 100% being fully recovered–I would be at 5% physical ability, 20% mental ability (thanks to olive leaf extract), and 10% for severity of overall symptoms. Of course I have days where I am worse than this, and thank God I still have days where I am better than this, but in general, that is where I’m at. And it’s all happened so quickly… I knew I would return to this point and then some, without treatment for these infections, but…

So perhaps it shouldn’t have come as so much of a surprise, when my mother and I had The Wheelchair Talk, today. For some with progressive diseases, as I mentioned earlier, getting a wheelchair to help you get around on bad days and outings isn’t too difficult to wrap your head around, especially if having more accommodations enhances your quality of life. But again, I’m not that person. I’m the one who refuses to buy into a convenience before it becomes necessity because damn it, if there’s any ability I have left, I. am going. to use it. and no disease is going to force me into a decision before I’ve decided it’s time to deal with it… Right?

It’s much easier to accept a mobility aid, or any accommodation, if you can still technically function without it, even at a reduced level. Then it isn’t so much I am being forced into this against my will as it is I’m doing the smart thing and using all available resources to manage my disability. Especially when the decision to accept the accommodation means forfeiting independence and becoming even more dependent on others. It took me six years before I could even say the words “I’m disabled” instead of “I’m on disability.”

But I’m at that point in any progressing illness where, even if you realize using mobility aids will allow you more accessibility, you still battle with yourself, for any number of reasons. In my case the reason is, this step just reaffirms how bad things have gotten.

I’m exhausting my treatment options one-by-one, nothing is working, I’m going downhill fast, and it’s just a very scary situation. Which I do plan to deal with gracefully, I hope, but dealing with something doesn’t take away the harsh facts, or the possibility of worse things to come. Even though I cannot stand for more than a few minutes, effectively restricting my trips out to places with available scooters or wheelchairs, the ones I’ve been needing to use for the past few months thus I’m effectively already wheelchair-bound…in my head, I don’t really have to identify with this level of illness until I decide to buy one. I might be bedbound because I have to lie down 95% of the time just to maintain stability, but I can still stand up for a few minutes, and those few minutes mean so much to me because I’m well aware there’s no guarantee I’ll always be able to do it. Honestly, it’s not like “I never thought this could happen to me,” but… Now it is.

The conversation with my mother happened after I wanted to go to the store a block up the road. I’ve been wanting to go for quite some time, but had been waiting until I thought I could somehow do it on my own… And that time came. But then I walked the 80 feet/24 metres to go tell her I was going to attempt getting dressed and such, and instead had to lie down. Silent tears soon followed. I couldn’t help but feel overwhelmed, because I knew this was it. If I wanted to at least savor my ability to sit up, we were going to have to go through with it. To my surprise, she must have been reading my mind, and was the first to bring it up:

Mother: …Why don’t we see about getting you a wheelchair?
Me: …Yeah.
Mother: No, really…
Me: I know. *smiles weakly* It’s just… When did this happen, you know?
Mother: Yeah… *sighs and looks away* Yeah.

And so, here we are. I suppose the next doctor visit I have, we’ll ask how to go about getting a wheelchair covered by my insurance. If they don’t, I might can get one on my own with my credit card, such as this modestly-priced one from Invacare. (The free shipping option is nice, and it also comes in red!) God will provide me with whatever I need, I know this much by now. I have the cane, the oxygen, the hospital bed, and so if it’s time for a wheelchair, too, then so be it. I know I’ll come to accept things, even if it’s not this exact moment.

I have no idea what’s going to happen next, if we’ll find a treatment breakthrough and I’ll start to get better, or if things will get worse, or maybe things will get worse but then get better… I don’t think I’m supposed to know. Whatever happens, this blog is my testimony, of someone living with severe M.E., an illness which on its own can disable or kill a person. And Lyme disease, and bartonellosis, they too can be disabling or fatal under the right circumstances. And yet somehow I keep on going… Honestly, with all that I have within me, I think it’s a bit of a miracle that I keep going at all, that I’m even still here to tell everyone about it. Perhaps in the future, I can look back on this entry and realize that I made it, that I improved. But even if I don’t, is that okay?

“And I’m praying that we will see
something there in between
then and there, that exceeds all we can dream”

a rainbow at night

[Edit: Five years later, and I am, indeed, able to look back on this entry and realize that I made it.
Lyrics by Flyleaf.]