Resuming Antibiotics for Lyme-Induced Multiple Sclerosis (MS)

© a rainbow at night

In case you missed it buried within my last post: I learned I do have multiple sclerosis. My neurologist said the official diagnosis as of right now is “Clinically Isolated Syndrome,” which can present with or without optic neuritis. Mine presented with, but I recovered well from that attack and my ophthalmologist confirmed there is no permanent damage to my optic nerves.

CIS and MS are the same disease process, but since MS literally means “multiple scars,” CIS is what you call the first episode, because there are a few people who never go on to develop another attack. But that wasn’t actually my first attack, or even my first documented attack. Because I refused to get a spinal tap at the time, the last lesion was attributed to “post-infectious demyelination” or “atypical MS.” They wanted to test my cerebrospinal fluid for Lyme antibodies at the same time as MS markers, and I couldn’t afford to risk a false-negative Lyme test, which my insurance could’ve used to deny coverage for my antibiotics. I have personally watched someone have their treatment revoked until they did additional spinal taps to prove the bacteria were there, and there was no way I was going to chance that happening to me, as horrendously ill as I already was.

I’ve had about five neurologists since 2008 because they keep moving, so my current neurologist is under the impression this is only my first attack, hence the CIS model. Most doctors rigidly hold the belief that neuroborreliosis (Lyme disease that has spread to the brain and spinal cord) and multiple sclerosis are not related, so my “official” diagnosis will change depending on which doctor I see and their level of understanding about my history. At any given time it’s one or more of the following:

  • Post-infectious demyelination
  • Clinically isolated syndrome
  • Multiple sclerosis
  • Atypical MS
  • Relapse-remitting MS
  • Neuroborreliosis
  • Inflammatory disease of the central nervous system
  • Demyelinating disease of the spinal cord
  • Disease of nerves in arms, legs, hands, and feet (what even is this diagnosis?)
Image from “LYMEPOLICYWONK: Misdiagnosis of Lyme disease as MS” by Lorraine Johnson, JD, MBA, and the Chief Executive Officer of LymeDisease.org. Click for more information.

Without medication, I regularly and predictably relapse about twice a year, about 5 months apart. I think the reason for this is, when my immune system starts to run out of options against the accumulating spirochetes, I usually develop a bacterial infection and require a short course of antibiotics, and those antibiotics also beat the Lyme back into remission for about 4-5 months max. But then the bugs build back up again, and my immune system gets stressed again, and I can’t fight off another bacterial problem again, requiring another short course of antibiotics which tithe me over for another 5 months… And so on. Rinse and repeat for the past five years since stopping Lyme disease treatment in 2012.

It wasn’t always so much like clockwork, though, for many reasons but largely because since “the big relapse” in 2012, I’ve only been able to tolerate an infant’s dose of antibiotics for maybe two days before my brain felt like it would explode. That is, until this year’s miracle happened:

In March, I was able to complete a 10-day course of antibiotics with absolutely no problem, for the first time since The Big Relapse. So, coupled with my new diagnosis, I decided to brave Lyme disease treatment again.

Yes, you read that correctly. What I wrote here five years ago has finally come to fruition:

“My friends say I can always begin treatment later after I’ve rested a bit more, but this is the equivalent of waiting until a cancer is stage 3 or 4 to begin treating. The disease is advanced, it’s harder to kill, and the treatment will be that much worse. … But regardless, this may be my only option, and all I can do is hope that with more rest, I will be able to begin treatment again in the future, and be able to handle it.”

My God, to be typing these words… There have been a lot of tears this past week. Over all my suffering, over all the life lessons learned, over all the years it looked like I would never make it here because of the constantly relapsing infections, over all the miracles that took place just in time, every time, so that I evaded further damage, and that I’ve actually healed from much of the damage already sustained… But mainly, over the fact that I am now here, having survived it all physically and mentally, and in a position where I am able to do something about it.

I made it.

And I’m starting treatment again.

We’re going to push it back into remission ON PURPOSE with an ACTUAL TREATMENT PLAN and an ACTUAL DOCTOR, not just skate by on whatever antibiotics I end up on, hoping it’ll be enough to fend off MS for as long as possible. The diagnosis is here! Time is up!


I’m doing pulsed antibiotic therapy this time–please research if you haven’t heard of it–because it turns out this is the best way to handle late stage Lyme disease that anyone knows as of yet. Continuous antibiotics may be necessary at first, but it will eventually come time for maintenance dosing instead of sustained eradication, because while chronic Lyme disease cannot be cured, it can be managed.

And please don’t come at me with your “it CAN be cured!” comments: People can be functionally cured, where the bacterial load is so low that it cannot cause problems, but there is no known way to permanently cure late stage Lyme disease, yet. It goes up there with all the other infections your body just learns to adapt to and live with, but which can cause problems again if conditions arise, and that is okay.

I wish someone had told me this when I first got diagnosed, but we truly are so much more advanced as a society in our knowledge of “chronic Lyme” than we were 11 years ago when I got infected. Back then, biofilms in Lyme were just a hypothesis, as was the idea that antibiotics were causing the bacteria to hide instead of die, both of which are proven facts, today.

It’s actually a comfort to know that even the strongest of bodies cannot keep these spirochetes under complete control, because it keeps in perspective that this is not just “my” body’s failure, or “your” body’s failure, but it’s not even a failure at all: It is the natural course of this disease to relapse and remit, and it is not your fault. There is nothing you were supposed to have done to keep it from doing whatever it’s doing, what it already did, or what it’s trying to do. I repeat, it is not your fault that you still have Lyme disease, and again, late stage Lyme disease CAN be managed. Alright.

Now, according to this 700 patient survey, only 55% of people with Lyme-Induced Multiple Sclerosis get better with antibiotics once the disease has advanced to this level. However, I’ve beaten the odds many times before, so I’m just going to do what I can do for as long as I can do it. This online research has many limitations but it does mirror the general consensus I’ve heard throughout the years.

Image from “LYMEPOLICYWONK: Do antibiotics help patients with Lyme disease who are also diagnosed with MS?” by Lorraine Johnson, JD, MBA, and the Chief Executive Officer of LymeDisease.org. Click for more information.

The reason for these hit-or-miss success levels is believed to be because killing the bacteria when they have already initiated an attack on your nervous system has the potential to further advance the disease instead of abating it, because when the bacteria die they cause an inflammatory reaction. Adding further inflammation, in the form of your immune system going in to clean up dead bugs, to an area that is already inflamed because the immune system is already active there, will make things temporarily worse. The $64,000 question is whether the brain will recover or is there so much infection that this additional inflammation caused by the dying bacteria will be just as bad if not worse than the inflammation caused by just letting the disease take its course.

People with tapeworms in their brain face a similar dilemma: Because a dead worm in your brain could trigger such a massive immune response to clean it up, many must simply live with the parasite latent in their brain instead of attempting to kill it, which could actually turn around and kill them, too. We need to realign our focus with living a good life, not becoming “bug free.” They are not mutually exclusive.

I couldn’t pulse antibiotics five years ago because treating bartonella was the priority, and you cannot do pulse therapy with bartonella bacteria present. They mutate far too quickly in their attempt to survive, and become resistant to the antibiotics used. Some antibiotics like Rifampin can lose their efficacy after just one break in treatment, rendering it permanently ineffective against the strains present. So, long story short, I needed continuous antibiotics for bartonella for about two years, with lots of complications, it still relapsed, and only starting IVIG two years later saved me. But before all the latter happened, I made it about six months on continuous Lyme-specific antibiotics–the same ones I’m on now–before I hit the infamous treatment wall and became too ill to tolerate absolutely anything. I.e. “The Big Relapse.”

(I feel like I repeat myself a lot here, but I know most people don’t have the time or energy to go back and read how I got here or why my treatment is taking/has taken this route. All that is available, though, if you’re interested–there’s a directory of categories and tags/content at the bottom of this site.)

We’ve no way of knowing how I’ll respond to things this time, but just based on how I responded to mere Amoxicillin at the beginning of this year, I think I stand a chance to respond favorably. I’m running out of time to do something here, regardless. According to my last MRI, there’s a potential “something” in the front part of my brain that they’re going to “watch.” I just did two spinal MRIs and should find out the results this week.

One amazing thing I learned, though–again, only by getting a copy of my MRI results–is that I have successfully REmyelinated! The biggest brain lesion from my first Lyme/MS attack is fully healed!! About a year or two ago, I suddenly realized I could walk in the dark again without falling over, which I hadn’t been able to do since my hospitalization around 2010/2011. I assumed my brain had found some way around this damage by using its innate plasticity (i.e. maybe it formed some new pathways to circumvent the lesion) but no! Even better! It HEALED!

I am so proud of my body and its resilience. It’s things like this that inspire and remind me that it’s not too late to heal, and that my body still prioritizes towards homeostasis and wellness.

I’ve finished my first pulse, and I already feel so much clearer in my head it’s ridiculous. I owe this entire post to those antibiotics. In fact the last several blog posts I published before this one were antibiotic-induced (haha), where I hadn’t been able to finish anything since they wore off. The only thing I managed to type for this post before starting treatment last Thursday was one paragraph that took me an hour and a half, that absolutely exhausted me and ultimately made such little sense I had to delete it altogether, anyway. But after antibiotics? I typed the entire draft of this post you’re reading, in one day. Another day was spent editing, and today I finished polishing it up to be scheduled for tomorrow morning. But go ahead and tell us, IDSA, how antibiotics don’t do anything for us, will you?

Experiencing this phenomena again essentially confirms to me (1) how I was ever able to maintain this blog all those years ago, and (2) why I steadily and progressively lost the ability to write the longer I went without antibiotics, eventually getting to the point where I could only post when I’d taken an antibiotic or two, or when I’d scraped together one paragraph per month until I had something legible:

All I ever needed was treatment for this disease.

Damnit.

Until next time,

Kit

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Trusting Myself to Build Healthy Relationships After Surviving Narcissistic Abuse

Into the Fire

Sometimes, mental illness makes me overly reactive. Other times, as I’m “coming back,” I retain that “edge” needed to take constructive action towards the situations that actually needed it, all the tiny things that simmered low on my priority list because I had more important fires to tend. But even though fire burns, I remain grateful for its role in purification.

“Pre-menstrually we tap into our firepower — our ability to rage and destroy. … The greatest gift of our moon time is in learning to clear space and enter the darkness, in order to be reborn as fertile, creative beings once more. We learn that this letting go, this cocooning in the darkness, is integral to our health. Again and again we must learn to be comfortable in the formlessness of transformation, and rest in the mystery.”

— from Burning Woman, by Lucy H. Pearce

In the past, this edge had sometimes been the only thing connecting me to my power, the only thing to show me that the things I was upset about actually had merit and deserved greater attention. Lucy also paraphrases this very astutely in her other book, “Moon Time”:

“I use the sword of my intolerance to cut deep and true. I keep hold of my vision and manifest it.”

I can think of no better metaphor than this. Allowing the innate wisdom of our frustrations to guide us to their roots, the one place from which we can actually enact change, because we’re finally courageous enough to look at why these seeds have sprouted in the first place. So maybe…

Maybe I should pay more attention when people breeze past painful details I’ve chosen to privately share with them, because that’s a clear sign they lack empathy.

Maybe I shouldn’t keep any digital platform that worsens my mental health, especially just to stay in touch with people who have lots of other ways to stay in contact with me, if they wanted.

Maybe it’s okay if I don’t want to be the only one who tries to keep in touch, 100% of the time.

Maybe I shouldn’t give privileged access to my life to those who only want to be spectators, or to those who only want to get involved in the fun parts. Maybe it’s okay to not be okay with that.

Maybe I should remind everyone that you are not entitled to anyone’s personal information just because you ask kindly, because kindness should not be a manipulation tactic.

Maybe I should remind everyone that my “no” demands as much respect as my “yes,” and that I will not be coerced into feeling a sense of obligation to perfect strangers.

Maybe it’s okay to trust my intuition when things don’t add up and I feel someone isn’t being honest with me.

And maybe I’ll try appreciating myself more for carefully selecting the people with whom I’d like to build long-lasting friendships from here on out, instead of chastising myself for being cautious.

Because I want and need to get back to offering myself to this world, and maybe it’s finally safe for me to believe I CAN manage my new mental and physical limits, and get back to living within them on my own terms, instead of constantly apologizing for not being able to meet everyone else’s.

Responsibility

For the longest time I’ve been trying to find the right way to interact with others, as a survivor of all types of abuse. For example I used to think it was normal to build a relationship with someone emotionally unavailable, because in my formative years it was very dangerous to have my own needs, emotional or otherwise. What better way to emulate not having your needs acknowledged than to pursue someone who would never acknowledge them?

I think that’s another reason me being unable to be there for anyone during my recent downward spiral, affected me so drastically. It’s no secret I live with obsessive compulsive disorder, which constantly tells you that you’re an awful creature who’s going to end up hurting everyone and then tries to convince you secretly like hurting people. (Oh, did you think OCD was just hand washing?) So while all my mental illnesses were jacked up on steroids, OCD really latched onto the idea that by taking time for myself to heal, I was the abuser, now. It makes no rational sense, but such is disorder. Anyway.

Narcissistic types are drawn to people like this, and those struggling with codependency: people-pleasers with an addiction to approval and/or relationships, who feel their only value lies in being who or what someone else wants. I’ve been a recovered codependent for years now after at least ten years of treatment, but I still attract narcissists because they are also drawn to compassionate, empathetic people who enjoy listening to and validating others; you know, people who will give them their “supply” of attention.

Sometimes it’s still hard to trust myself about this, initially. When I start to like a person I immediately think, “What if I only like them because subconsciously they’re exhibiting behaviors that mimic those of the pathological human beings I grew up with, and this is just another quick dead end?” That does happen to me quite a bit, but that’s the chance any of us take in attempting a new relationship. Now, I can spot the red flags relatively quickly and be on my merry way, instead of wasting years in unfulfilling one-sided relationships that I unfortunately tolerated.

When things aren’t working out in your relationships, you have to ask yourself: Which patterns do I keep repeating, and what is my role in it? What are you putting up with that you probably shouldn’t? What do you need yet aren’t actually requiring of anyone? To put it bluntly, what aren’t you requiring of yourself?

It’s uncomfortable being around those who don’t have empathy, but if I see the red flags and still keep them in my life, I’m just as much responsibile as they are, for the pain that comes from being around them. You know the Maya Angelou quote by now: “When people show you who they are, believe them, the first time.”

It’s painful when others don’t want to keep in touch with you unless you’re the one bridging the gap, but if you’re always the one meeting everyone else on their terms, you will eventually discover some friendships existed ONLY because you were meeting them on their terms.

And it’s jarring when people pop back into your life out of no where feigning interest in your well-being, only to disappear into the background again if you happen to be in a rough patch. But I’m the one who has to look that dead in the face and decide either “Yes, I’m okay with this person only being in my life in this superficial way,” or “No, I’m absolutely NOT okay with opening my life up to people who only show interest in being spectators, not friends.”

In other words, my dears, there comes a point in your healing from abuse where you understand you are no longer a passive victim but an active participant in the way your life and relationships are unfolding. When you know better you do better, etc. Victims don’t have any responsibility for their situation; that’s why they are a victim. This means they don’t have any power, either. That’s also why they are a victim. We may have been made victims in the past by predators of all varieties, but now, we are transitioning to survivors, which means we not only get to take responsibility for our healing, but we also have the privilege of taking responsibility for whatever new relationships we build along the way. We’ll make lots of mistakes, but don’t worry: Mistakes are just a natural part of burning through toxic bridges and outdated ways of existing, so that the fresh new ground underneath–fertile, healthy foundation–can finally be revealed.

Strength

I am a creature of many strengths, but I must regularly take inventory that I haven’t surrounded myself with people incapable of showing love. I have to remember that with my gifts of knowing how to make people feel heard, accepted, and appreciated, comes the extra need to protect those gifts from those who just want to take advantage.

I finally trust myself now to not be afraid of my own boundaries or the reactions of others once I set them. I finally see that it’s not my fault I attract predators, that boundaries are okay, and FOR ONCE–even if it’s only this very moment that I type this–I DO NOT FEEL GUILTY. It’s one thing to think these things and live by them just on their virtue, but now I actually FEEL this truth; the gentle power and mutual respect that lies within every human’s right to set healthy emotional boundaries.

The fact that anyone gets confronted with another’s healthy boundary and then runs away, is just a tell-tale sign they don’t like being told “no.” And I’ve realized that if someone is too weak to hear my “no,” they will never be able to handle my “yes.” They will never be able to handle me, at all. I am a force to be reckoned with, and I need to start surrounding myself with other strong, loving people who can handle everything I am. Sure I have difficult patches, but everyone does, and OCD be damned, that doesn’t make me a monster. I need more people in my life who know their worth, who recognize their resilience, who can hold their own, and who see boundaries as a sign of another healthy individual.

You see, narcissists can’t handle being around strong people. That’s why the moment you show them you have a backbone–that you can say “no,” that you aren’t afraid to speak up for your needs–they find another target or lash out, because they know if you’re not looking for others’ approval they don’t have a leg to stand on when it comes to trying to manipulate you. You can’t be controlled by fear, obligation, guilt, or them playing the victim by being offended. There’s certainly a large gradient between “immature” to “narcissist” and then further down the line to “psychopath,” but I am DONE surrounding myself with these types. Any of them. All of them. I’ve had enough to last me twelve incarnations. For all I know it’s already BEEN twelve incarnations of me trying to do exactly what I’m doing right now: Learning day by day, month by month, year by year how to keep energetic vampires out of my life.

Recovery

I learned I do have multiple sclerosis. More specifically, the official diagnosis as of right now is “Clinically Isolated Syndrome,” one of the MS disease courses, which can present with or without optic neuritis; mine presented with, hence those particular symptoms. There’s less than a 15% chance I won’t have another attack, and a 95% chance this IS caused by my untreated neuroborreliosis (Lyme disease). This isn’t my first attack, or even my first documented attack, but since the last one (that they found by accident while I was hospitalized) was attributed to “post-infectious demyelination” or “atypical MS,” and most doctors hold the belief that neuroborreliosis and multiple sclerosis are not related, the “official” diagnosis–clinically isolated syndrome, atypical MS, relapse-remitting MS, neuroborreliosis–will change depending on which doctor I see and their level of understanding my history.

I am now mostly recovered from this most recent attack, and my ophthalmologist confirmed last week there has been NO permanent damage to my optic nerves! Also over the last couple of months, I’ve successfully been able to manage my problem of becoming too easily overstimulated, and I’ve been learning to identify the tiny things that precipitate a shutdown. For example I’m able now to share with people that I need to retreat, before I need to retreat, before I feel forced to disappear without any warning at all.

I’m also significantly better cognitively, after a short course of antibiotics for some random infection back in March. Maybe Lyme or Mycoplasma is playing a role, or it’s the PANS/PANDAS–an autoimmune disease that first presents in childhood which causes my body to attack my own brain when I’m battling any infection–or it could be related to the MS and its own inflammatory process in my nervous system. Or some combination of all of it, who knows. But! What I do know, is that I knew I knew I KNEW this wasn’t just something I was doing to avoid life!!

After finally coming out of my extended mental and physical relapse, after seeing the results of my lumbar puncture, after getting the diagnoses from my neurologist and ophthalmologists, and feeling my profound improvement after antibiotics, I feel… It’s as if I can trust myself again, because it gave me solid proof that my brain really was significantly altered, and it had very little to do with me “choosing” to isolate. I isolated because my brain was trying to process trauma, while being inflamed by lots of extra immune cells, while trying to prevent neurodegeneration and/or blindness, while fighting pathogens literally designed to spiral into my brain tissue, AND I have an autoimmune disease that makes these processes not only cause new mental illness but exacerbate all the preexisting ones. It makes perfect sense why I was unable to function normally or converse at any length.

I spent months rationalizing everything to the end point that I must just be inherently careless and awful. And I had started to believe it. Now I know better.

And if it happens again, instead of being terrified that I’ll lose everyone I love, I will know what steps to take to attempt treating the symptoms, AND feel more confident that I can share with whomever happens to be present that this is literally a symptom of disease, not just maladaptive behavior of my personal choosing. Between that and having unlearned the unproductive coping mechanisms I tried along the way, I have so much more faith that I will be able to deal with whatever happens…WITHOUT believing the guilt.

As I think my writing showed, I was making a lot of progress, and finding significant healing, until the flood happened… I feel back on track now.

Burning Women

Thank you Lucy, for teaching me and millions of other women that the energy in I’ve Had Enough doesn’t automatically have to be feared, especially for those of us who’d never seen it used correctly:

“In the heroine’s journey we realise that the dragon lies not in a far-off land, but curled within. And so we are called inwards. Into the dark cave of our unconscious. …

“This power is mine. I have come to claim it.” Repeating it until you, and the dragon, know it for truth. …

And suddenly the danger is gone. No fight necessary. That dragon had sat on your power for so long it had come to believe it was its own. You had spent so many years listening to the myths of the dragon, hearing him growl within, you got so scared of these stories, that you never thought to come and meet him for yourself. The dragon never was your enemy. The treasure never was his. It’s yours. It always was. All he was doing was waiting for you to claim it, protecting it from those who would steal or misuse it. He knew his job was to protect it until you were able to care for it as fiercely as he. Until you knew yourself as its rightful owner. Until this great wealth would be used wisely, not to do damage to yourself or others. Until you were learned enough in the ways of the world not to squander it or give it away. That was his sacred role, as your greatest ally and protector. …

[W]e are brought up to hand over our power, to let others take care of it, and ourselves, in exchange for us taking care of them, emotionally, physically and spiritually. It is a heavy burden, one usually done unconsciously, and yet expected culturally. A woman who is not willing to engage in this exchange is usually shamed as selfish and immature. But it is an exchange. So as Burning Women we make a new deal: I take back my power, and I learn to take responsibility for myself…and you in return take responsibility for yourself. We may share ourselves and our lives, experience deep love, care, intimacy and connection, but we are each the keeper of our own power. This is the move from co-dependency — the model engendered by our culture — into independence. Intimacy, penetration and sharing through choice, and consent, not obligation.”

Burning Woman

Thank you Marianne Williamson for also shining the Light on this topic with one of my favourite quotes from you:

“Your playing small does not serve the world. There is nothing enlightened about shrinking so that other people won’t feel insecure around you.”

A Return to Love: Reflections on the Principles of “A Course in Miracles”

And thank you Roshi Joan Halifax, for eloquently explaining the value of anger–again, especially for those of us who’d never seen that used correctly, either–when you spoke these words:

“I think one has to understand anger in perspective. Anger, for one thing, has within it the seed of wisdom associated with clarity, with discernment. If you cut the value of anger out of your experience, in a way you’re taking some of the structure that allows us to see clearly into things as they are. So the seed of wisdom in anger is discernment. That’s the first thing. The second thing is, our anger toward the experience of disempowerment that is going on… We should be angry. And that sense of moral outrage, in other words the violation of equity. . .gives us the arousal level necessary to mobilize ourselves into action.

“And it’s essential that we act. We can’t just sit there, gaze at our navel, and say it’s all love.

“Love does not mean that we are passive in the face of harm. I think Martin Luther King was clear about the relationship between love and justice. Anything that stands in the way of love is unjust. The absence of justice points to the absence of love. So I don’t separate love and justice in this regard. I see them as intimately intertwined.”

— Be Here Now Network: Mindrolling Ep. 183 – “The Integration of Justice and Love”

Until next time,

Kit


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New month, new progress, new test results

Spider Web, Rockefeller Forest, Humboldt Redwoods State Park © a rainbow at night

I’m pleased to be writing that I’ve made many great strides in getting my life back on track over the last three weeks. I logged back into my Twitter account and began using it on a daily basis; participated in two “spoonie” meet-ups online, #SpoonieChat and #SCTweetFlix; am replying to some messages when my brain has readily-available thoughts on the topic; and have joined a sort-of spoonie/artist/support group/project, even if I only participate sporadically.

Other things haven’t changed so much. I have yet to open any e-mails, or even log-in to my account for that matter. And I’m still staying far away from the M.E. community and the Lyme disease community, i.e. anything to do with that style of advocacy or activism. I momentarily tried to look at how the Lyme community was fairing, but immediately saw memorial posts concerning a young woman’s suicide. I’m not psychologically prepared for that constant exposure again, as I think I’ve made very clear. I stepped into the M.E. community to test the waters, also, but that was equally a mistake.

Mostly, I’ve gained back a lot of personal power that I didn’t even realize I’d given away. I’m on a journey here, and no one has the right to tell me how far along, or at what point on their map, I should be at. I don’t even have the right to talk to myself that way. I’m also under somewhat less stress now that I’m no longer shouldering my family members through their own recoveries. I still have a lot of trouble communicating, particularly in person, but since being on antibiotics for two weeks, that has temporarily improved. In hindsight I wonder if all my temporary improvements in brain function were due to the antibiotics, or just this time.

Now that I’ve moved into the part of grieving where you can look back and see why you handled things the way you did, I realize that I didn’t do much honouring of the choices I made, even the unconscious ones. But I now have the opportunity to re-frame and integrate the experience, so I’m going to take it.

I honour the parts of myself that knew not make my drama everyone else’s responsibility. I honour the parts of myself that recognized I had to heal a little bit more first, or all my interactions would be coloured by distortions too thick to see through. I honour the parts of myself that knew I needed merciful stillness, not ruthless force, and I honour that which gave me permission to listen.

Whereas part of me assumed I’d be swallowed by deep regret over the time lost, friendships lost, and God knows what else once I finally got free, I very surprisingly feel gratitude. 

I’m grateful for even having had the opportunity to take that “time off” to recover. I’m grateful for all the fights I didn’t provoke out of my own pain, had I forced myself to socialize. (Although, in the state I was in, I can’t imagine I’d have been able to find the words for any argument, honestly.) I’m grateful for me being able to realize I was the one who was overburdened with grief, and that it wasn’t anyone else’s job to revolve their life around me to fix that. (Not that I would even do that, but I recently witnessed someone who was blaming an entire community for their own emotional suffering, to the point that they thought the community had to change to make them happy. It did make me think, “Damn, I may have trouble being around certain groups, but at least I realize this is a personal issue, and that no one owes me an apology for living their own life the way they’re entitled to do.”)

I’m still terrified that the day will come when I’ll wake up and everything will have changed without me knowing why, that I won’t be able to tolerate anything again, or another severe trigger or actual lived trauma will set me back months or years. Just as I fear that the next bad headache will be the start of another relapse. Just as someone with depression fears that that one day of sadness will turn into six months of crushing despair. The difference now is.. well, probably something neurological, as the antibiotics have shown me. But I’m no longer allowing that fear to stop me from participating in whatever ways I can choose to, while I’m able.

Thanks to meditation, I have long since found the place in myself that knows It’s not the feelings, nor the thoughts, but the One who is experiencing those things. That place in me is always still, no matter what. To be simplistic, that’s what we call “the lion’s roar” in Buddhism, the ultimate truth within us that causes all other noise to fall away, like beings from all four directions bow away from the sound of the mighty lion’s roar claiming its territory.

From my current perspective, I have two options. I can listen to the survivor’s guilt, the irrational shame, and ruin my life (or at least this stretch of it). Definitely allowed, but not recommended, and clearly unbeneficial. Or, while I’m healing, I can remember that the end point of treatment will be to eventually FEEL that those thoughts are untrue, as well as know that. But the way I see it, there’s zero reason for me to wait until I FEEL those things aren’t true before I start living better. I know the chaos is full of lies, regardless. I know they’re lies now, and I’ll know they’re lies after recovery. Why do I have to wait for my ever-so-fickle feelings to catch up with what I already know, when I can just start living that way, right now? Yes, I’ll still have the thoughts, and they’ll still feel true for the time being, but I know they’re not, and I’d rather have the thoughts while I’m attempting to put my life back together, than have the thoughts while I’m holed up in my house for months.

I can’t give away my power to change the things I can. Because this is how I gave away my strength, by forgetting the immensity of power lying within all the tiny, monotonous choices that actually make or break your life. When I saw myself writing in my last post that I’d started to self-perpetuate my suffering, I knew I had to change that, or it was not going to end well. It also gave me a little hope, because I finally saw a piece of this that was within my control. If there was something I was doing to make this worse, then that also meant there was something I could do to make it better, simply by making a different choice. So I did, and here I am, three weeks later, continuing the momentum that sprung from me publishing that last post after six months of complete silence. That post took me three months. This one took me three weeks. That should say enough.

I don’t doubt I’ll still have “good days” and “bad days.” I’m trying to mitigate the chance of another “disappearance” a bit by taking Sundays offline, in hopes that, like so many other symptoms, if I just rest for a bit regardless of how I feel, I may be able to prevent whatever it is that builds up and make me cognitively shut down. I’m not sure if it’ll work, as I still have no idea what causes that, but I’m trying, damn it.


My latest tests results are equal parts disturbing and fantastic. Good news first?

My last homocysteine level before this one–which, in conjunction with a methylmalonic acid bloodtest, helps determines the rate of your folate metabolism, as well as suggest your risk of stroke and blood clots–was almost 30 (29.4). It’s supposed to be under 10.4 at the maximum, which means it was literally three times as high as it should ever be. Not great! Before my folate deficiency really kicked into gear, it was a lovely 7.2 umol/L. Well as of March, it’s all the way down to 15.8, which is basically only 5-points-above-normal. I’m almost cured of my folate deficiency!

Similarly, when I began treating these methylation problems, I could only tolerate a meager 100 mCg of methylfolate every 3 days. Now, I can tolerate a wonderful *500 mCg* every 3 days, and I’ll probably be able to increase that, soon. (As well as B12, of course, but I need more methylfolate than B12 at this point. I’ve found the hydroxo-cobalamin works much, much, much better than any other type, for me. So heads up: If you have the MTHFR C677TT homozygous polymorphisms, in addition to being homozygous–that is, having both/two copies–of COMT V158M, COMT H62H, *and* MAO-A R297R, like myself, you definitely want to take the hydroxocobalamin form of B12 and just save yourself the money and suffering of trying the other forms. Yes, it works even better than methyl-cobalamin.)

My cholesterol levels are also fantastic and I don’t know if I mentioned here yet, but I’m no longer pre-diabetic after a lot of dietery changes to help treat PCOS. No relapses, there, either!

Now the bad news, even though I don’t know how significant this is yet because I don’t see my neurologist until next week. First, I haven’t found the results of my intracranial pressure reading, or else they aren’t putting it on my online chart, so I don’t know what’s going on, there. I did however get the results of my spinal fluid analysis, and while my glucose is normal (I think?), my protein is normal (I think?), and my white blood cells appear normal (pretty sure?), there were two things that were present that were absolutely not supposed to be: Lots and lots of neutrophils, and blood. I know this could point to meningitis, but I’d like to think if that were the case, my doctor would have called, because that’s serious? So I hope there’s some other explanation. I refuse to Google anything and scare the hell out of myself over what could be going on. I’ll find out soon enough.

Also, while I know the results of my MRI must be in by now, they, too, have not yet posted to my online chart, so I don’t know the results. And honestly, with the wave of fear that overtook me while reading the CSF results, maybe that’s a good thing, in the event it does reveal something troubling.


The spinal tap itself went great, but the recovery was peculiar, and combined with missing my IVIG for two additional weeks, I was feeling beyond terrible. The most bizarre symptom was that I could not stand more than two minutes without severe shaking, all over; the kind of trembling that makes even your teeth chatter together. But I wasn’t cold! Luckily it resolved as soon as I lied back down, but that definitely wasn’t in the “this could happen afterwards” care sheet.

About a week after the lumbar puncture/several days after my eventual IVIG infusion, I had all the symptoms of fighting some type of infection, but without a fever. It was enough to make the room tilt and spin whenever I moved, have hot and cold sweats, cause ringing in my ears, and ultimately a severe headache toward the end, but no fever? Then I remembered, I rarely ever get a fever, no matter what is happening. So after several days of that hell, I said “screw it” and started my antibiotics. I immediately began feeling better, as quickly as the next day. I spoke with my immunologist and was given more antibiotics, and I moved my appointment up by two weeks so we can discuss why my immune system isn’t able to stop all these bizarre infections from happening these last six months, even with the IVIG. I’ll also ask about mold exposure, because that’s a real possibility that I haven’t forgotten about.

During all of that mess I spent most of my time tweeting to pass the hours, and in the process befriended some great people. I tend to feel like an outcast on Twitter the longer I’m on there, so we’ll see how long I last on there this time.

Until next time,

 

Kit

The Path of Least Disruption

“You don’t have time for perfect,” reminds Elizabeth Gilbert in her book, Big Magic.

I’m still alive. And one of the reasons I haven’t been around is because I knew when I returned, I’d inevitably hear about all the people who were not. That might sound a bit crazy, but, even when I’ve taken a month long break, anywhere from 3-6 people in our community will have died. With the winter stretch of the year always being the worst, I can only imagine who we’ve lost, now.

I don’t know how anyone is supposed to be okay with this. No one can possibly be okay when the only people they can truly connect with are those with similar diseases, and then to continually, year after year, watch all those people keep dying. Or otherwise become unable to communicate in a sort of living death, something that happens all too often in my communities. How do you not develop some type of complex around this? How do you deal with the constant stress of knowing that any time you go to make contact, there’s a 50/50 chance you’ll be knocked out by grief for weeks by the death of yet another friend? If anyone knows (and most do) what it’s like to live with a loved one as they’re dying, it’s the same fear you feel that the next time you enter the room, they will have already passed. That’s been my reality for years now, and I feel backlogged with grief. This can’t be healthy for anyone.

I’m 100% out of the loop with everyone. It’s as if I ran off to meditate in the remote forests of India for six months without telling anyone, and just got back. I haven’t been in a position to be anyone’s friend, as cold as that might sound. Or maybe it just sounds honest. There’s a family that needs me here; to coax them away from their fears by being their voice of reason, which is really just their own voice that they haven’t yet given themselves permission to hear; to nudge them towards seeking help, seeking God, and taking care of themselves; to fight for and protect the needs of the children, who might otherwise be overlooked; to show them the possibilities of loving life even when nothing goes the way they expect, or desire; and most importantly, to lead by example that you can face life exactly as it is; it might not feel great, and you will probably feel overwhelmed for large stretches of time, but it’s possible. The pain of facing the hardship of life is far, far, less than the destruction of a lifetime that comes from trying to avoid or ignore it. I’m so glad I’m able to be this person, still, for those in my immediate vicinity. But with the condition I’m in otherwise, it’s both the least and the most I can do. My cup is always full, and any spare “spoon” I pick up I try to use doing something I enjoy so I still want to keep living. So far so good.

"If you can sit quietly after difficult news; if in financial downturns you remain perfectly calm; if you can see your neighbors travel to fantastic places without a twinge of jealousy; if you can happily eat whatever is put on your plate; if you can fall asleep after a day of running around without a drink or a pill; if you can always find contentment just where you are: you are probably a dog." Jack Kornfield, A Lamp in the Darkness: Illuminating the Path Through Difficult Times (2011).

Of course, when I do feel happiness–which happens more often than my serious, direct style of writing here belies–I’m immediately courted by survivor’s guilt. I’ve come to accept those intrusive thoughts for what they are–mental lies–and try not to take them too seriously. I know they’re a sign I need help, which I plan to get, somehow. As I keep saying: I won’t abandon myself. I just wish it didn’t feel like I had to abandon so many others to get through my own life, at the moment. I might be pouring too much thought into that, but that’s just part of who I am.

Lately, most of my attempts at self-compassion immediately detour to shame and guilt. Only after meditation did I even notice this had been happening. One moment I was feeling gratitude that I was able to wake up and listen to music for an hour and meditate, the next I was thinking of children in war zones who can’t do that, and people with illness so severe they can’t listen to music, and my brain’s idea of logic was that somehow me being able to do those things makes me “bad”… Because of course, me feeling guilty over the things I enjoy will help other people feel better, you see. Sigh.

My succinct, “life lessons style of writing” was never something I planned to do, but the extremes of my life birthed it. What I’m going to try to do now, is to take my site back to old school journaling. If you like to read that type of thing, read it. If not, don’t. I’m still non-existent on e-mail and social media for right now. There are “good days” and “bad days,” good stretches and bad stretches.

“Needing to isolate has to do with us, the sufferers. Pushing you out of [life is a] way to have some control over what is going on… We can’t handle the shit going on with us when people are always present, adding little things to the swarm going on in our heads. Sometimes it’s just too much and having people around, especially the ones we really love, it adds to overload. We get feelings of insecurity, worthlessness, and don’t want to put that on others. Being in a relationship with someone with PTSD means understanding a sufferers need to isolate, and all the other shit that comes along with it.”

via user “silver.” on MyPTSD support forum

With a few exceptions, this level of distance from others has been the case for me basically all of 2016 and thus far this year, after a period of extreme acute stress in late 2015; the straw that broke the camel’s back and turned my solitude into survival. When I read that bit above, it’s spot-on about how the presence of people, even people we like, somehow adds “little things to the swarm” of mental overload. Just asking me a question can cause my thought process to short-circuit, but it’s impossible to describe why. I know how I feel inside, and what I think inside, but getting that across is another thing entirely. It reminds me of a certain interview with Whitney Dafoe before he became 100% bedbound, where he said he wished sometimes he could just be around his loved ones without them talking to him, if they could just let him be around them without actually interacting, he’d enjoy that very much. I enjoy that immensely, as well, but it’s nearly impossible to experience unless you’re with another Buddhist or on a silent retreat somewhere.

Last Spring I got to thinking I was just in a rut, so while having a good spurt, decided to force myself to socialize in the event it might help. But while I enjoyed myself at the time, it backfired spectacularly. Even that which I actually want to do, accumulates into a ticking time-bomb of how long I last before I need weeks of isolation to counteract it. This has been worsening for years, and after the flood… I just don’t know.

Louisiana Flood Damage Debris Pile, Before Pick-Up © a rainbow at night, 2016

It’s taken me years to realize that what I’m doing is a response to something else that’s happening internally, that I’m not just choosing to do this because I feel like being alone. I do enjoy being alone, and I will always make the best of things even if I can only tolerate my own company. As I read somewhere and found quite truthful, sometimes the fight to fit in becomes worse than the illness. But enjoying solitude is not the same as wanting to socialize and engage with your community, and care for the friendships you’ve cultivated, and in fact even knowing you need to socialize because isolation begets all sorts of awful things, but then being completely cognitively stunned by the first response you’re required to generate. I don’t know what’s happened, I don’t know why this is so much more difficult than other mental tasks or why it affects me so profoundly, but whatever this is, it is very clear to me now that it isn’t just some preference. And I have to stop beating myself up about it. I can’t be the only person who goes through this. In fact, I know I’m not.

The gist of it is: Sometimes interacting makes me worse, but sometimes I can handle it, and there is unfortunately zero difference in how it feels to me at the time, so absolutely no warning I can give if a disappearance is about to happen. It’s like trying to predict when my OCD or stuttering will suddenly worsen. Or like asking someone with RA or Lupus or MS when their next flare-up is due. It just doesn’t work that way.

Because of this, I’ve noticed it’s started to become self-perpetuated, also. There have been times when I wanted to finally reach out, only to then stop myself because I feared so much being unable to continue the momentum; that I’d just end up disappearing again. It’s my way of trying to minimize the damage of suddenly disappearing around people I thought I could keep contact with. I don’t want to hurt anyone, but this is all so unpredictable, so that feels inevitable. As one person said, “Who the hell wants to be around a touchy individual who tends to disappear off the map for reasons most people cannot fathom?”

© a rainbow at night

When I write this, and really look at it, I find compassion for myself in dealing with multiple, multiple diseases–of brain, of body, of thought–that make isolation my current reality. Being in stillness was, and can be, very therapeutic. I can find acceptance for where I am, and others tell me I’m some sort of inspiration for finding a way to enjoy life despite all of this, but I still end up thinking about my inability to be what others want, or need, or deserve. On top of it all, maybe I’m also grieving yet again for the loss of my former self, this time the person I used to be just a few years ago, who was able to engage with the world. Everyone I met, even strangers, would tell me that they could somehow feel my love for life when they were around me. And now…

More to say about my brain, so switching gears. Sort of.

Opportunistic infections are something I’ve been dealing with constantly since the flood. Skin infections, fungal infections, follicle infections, eye infections, repeated ear infections, repeated sinus infections, gastrointestinal infection from probiotics because I accidentally ate yogurt more than once… Then my seasonal winter relapse, followed immediately by a major health discovery that I’ll have to talk about on a different day.

Right now, I’m being worked up for multiple sclerosis, and/or increased intracranial pressure (aka intracranial hypertension), or both, or who knows what. Two doctors have confirmed my optic nerves are very pale and not getting adequate blood flow (suspected papilledema). My neurologist thinks this is because the pressure around my brain is.. well, pressing on things, and causing a significant amount of my symptoms. Yesterday I got a shit ton of bloodwork to make sure my kidneys can handle upcoming tests, then I’ll be getting another MRI with contrast, and an infrared-assisted lumbar puncture (spinal tap), both next week.

Much of the time I can literally feel a pressure in my eyes. Then with my ever-present headaches, the vision problems, worsening dizziness, tinnitus, and photosensitivity, alongside my significant changes in personality and cognitive decline, intracranial hypertension seems a given at this point. If confirmed, it will then boil down to why is it happening. There are endless suspects. I wonder if the IVIG may have either initiated this, or worsened something already in progress, because a lot of the changes I’ve experienced started immediately after that. Not that I’m complaining, because even if it did contribute to this, without the IVIG I would not have beaten the bartonellosis, or even be here to talk about this. I also wonder if the Lyme disease has any role, because while I haven’t had the symptoms I used to associate with it, these things currently happening are pretty much exactly what happens in late stage neuroborreliosis, which still, no ones knows whether or not is curable. You’d think it’d be as easy as checking for bacteria in my cerebrospinal fluid, but system-wide, borrelia prefer body tissue to hanging around in fluids where they’re more vulnerable. It’s almost impossible to tell what’s caused what, at this stage. And who knows, it may be something entirely new.

"I am scared. I'm scared that I don't know how many more good days I'll have. I'm scared of what this illness means, and I'm scared of what I know it can do to my life and my body. I'm scared that I'm not spending enough time with my family, I'm scared that I'm not telling the people that I love what I have to say and what they need to hear. I'm scared that I'm not living my life to its full potential. I'm scared that at any given moment my health could take a drastic turn in any direction that it wants to, and that it's out of my control. But no matter what happens to me, I know that my fears are because I care, my fears are because I still have good things in my life. I'm scared because things matter, so maybe it's not so bad after all." By @mrswelches

As for multiple sclerosis, I already meet all criteria for it, alongside a significant predisposition to developing it, so an official diagnosis could be imminent… But again I wonder how one would differentiate that from everything I already have going on? We shall see. But until the results are in, my IVIG infusions are on hold, because the possibility that an immune response to the blood product or a reaction to the intravenous fluids could worsen the pressure in my skull is too risky, not to mention getting others’ antibodies infused into me could alter my own test results. And “you have to do another spinal tap” is not something I ever want to hear.

I’m not going to say I’ll keep posting, because I’m not sure that I will, even if I want to. I won’t say I’ll try to get back to replying to comments and emails, because even though I want to, I’m not sure that will happen. I just know that I’m here, I’m posting right now after a huge effort to accomplish this, and despite 1000% evidence to the contrary, I still expect good things to happen in the future. Until next time…

Kit

My house was part of the Louisiana Flooding Disaster.

Hi everyone, 

Just a super quick update from my phone for anyone who doesn’t follow my Twitter: My house was part of the current flooding disaster taking place in Louisiana. Between 4-8 feet of water quickly enveloped our area early Saturday morning, August 13th, depending on the height of the ground. Despite getting multiple alerts sent to my phone in the previous days for other rivers, there were surprisingly zero alerts for my area. My neighbor woke us up just in time to save our outside dog from drowning, move the cars probably minutes before they went under, and get out before having to be part of the 30,000 people who needed rescued by boat and air. My house was highest up, so “only” 4-6 inches got in, but it was enough to cause major problems with my foundation, air vents, flooring, etc. My steps are gone.

For someone in my condition I know it is extremely important to avoid mold exposure. I’m currently in a hotel and will be for some time, perhaps a month while things are repaired. I will not be available for any online activity except for the short amount of time I spend updating Twitter, so consider this site (and most all forms of my online communication) on hiatus until further notice. 

I am extremely, extremely lucky to have anything at all to return to: 40,000 homes were damaged or destroyed (so far), and in some parishes up to 75% of all homes suffered this fate. Only 15% of people affected had flood insurance because so much of this has happened outside of flood zones and despite what the news is telling people, flood insurance is cost prohibitive here due to what most consider price gouging.

I also didn’t lose much inside that I absolutely need, like my medical grade bed, refrigerator, etc. Most people affected by this disaster are in a shelter and have absolutely nothing to their name except the clothes they were rescued in, but will hopefully be moving to temporary housing soon while insurance and FEMA help them get back on their feet (like they’re doing for me and some of my family). It’s a real mess, a true disaster zone down here. No one is going to be talking about the flood of ’83 anymore. They’re going to be talking about this one.

If you want to help, please donate to the Red Cross. They are amazing, and can be trusted to put your funds to the best use possible.

In the past decade alone I’ve had to evacuate and stay for weeks/months in hotels at least four different times; at least one time, I lost my house. I’m really growing weary of southern Louisiana. I don’t think I want to do this any more, here.

Until next time.

Kit / a rainbow at night

Facing My Worst Fears On Social Media: Am I Really So Terrible?

“You own everything that happened to you. Tell your stories. If people wanted you to write warmly about them, they should have behaved better.” ― Anne Lamott, Bird by Bird: Some Instructions on Writing and Life

Short answer: No. No I’m not.

Reasons I almost didn’t write this:

Because of a pathological and unwanted sense of obligation to protect others’ public image, especially if it involved abusive and/or shameful behaviour, even more so if it was directed specifically at me. Because of decades of being made to feel that it was never their behaviour that was shameful but rather my speaking about it that was the problem. Because of decades of spiritual abuse that, also, mostly condemned those who spoke about wrongdoings instead of the wrong behaviours themselves. Because I was programmed to have emotional loyalty to people no matter how they acted or treated me. Because old habits die hard.

Reasons I absolutely AM writing this:

Because the very act of publishing this is an act of healing. Because the God I actually believe in supports those who speak the truth, not accuses them of being “unspiritual” if their truths make others uncomfortable. And because I can assure myself that no names or identifying characteristics will be mentioned, nor are they even remotely likely to ever read this.

So here’s something I’m actually excited to write about… Last month, or maybe the month before, I’m not sure but right before I returned to social media because I had healed enough to start responding to messages and e-mails once again… Some time ago, I faced my very worst fears in social media and relationships:

Someone not only misunderstood me, but thought the very worst of me, used my benign actions to justify their irrational belief that I was of ‘bad character,’ insinuated that I was being selfish with my time, and looked at things I’d written or shared on social media with an authentic energy and interpreted it instead as directly passive aggressive or malicious against them. Then they said what they thought they needed to say (I’m being generous, here), and blocked me everywhere, before getting to see the physical proof that they were actually 10000% wrong in their assumptions. Not a single conversation about what had been bothering them. Just accusation, character assassination, gone.

They took some of my worst fears, (1) that someone would use my words against me, (2) that I should never speak because people will just misinterpret it to mean something completely different and probably malevolent, (3) that someone would stalk things I did or said on social media to concoct a narrative in which they assume the worst of me, (4) that someone would guilt-trip me over the time I needed for self-care and (5) respond to it with accusations of selfishness and/or view it as an ill-conceived personal attack on them, and (6) that any or all of it would be used to justify abuse, character assassination, and/or emotional abandonment, and rolled it alllll into one. big. grand. gesture.

And guess what. I immediately recognized that it was completely unjustified.

I refused to accept blame for things I hadn’t done, because I knew none of it was true.

I didn’t go into hours, weeks, or months of self-abuse thinking I possibly deserved any of it.

And I survived.

Not only did I survive, but I even assertively stood up for myself (before they bailed, at least).

And, as a bonus, I didn’t move to contempt. Hurt over being thought of in such a way by someone I’d started to trust, yes; anger at being mistreated (a good sign for someone who’d always been punished for expressing anger), yes; disappointment and confusion, yes. But not contempt, not hatred, not a sudden need for self-protection by going on the offense, and no thoughts of “what a terrible person you are for doing all this.” They’re not. I know why they did what they did even if they don’t understand it, themselves. I’ve been a version of them in my past, believe it or not, when I didn’t know the true depths of my mental illness. And because I have compassion for the situations in my life that caused me to behave irrationally with others, I can have compassion for the situations in their life which caused them to do this. (Plus I lived with an infection for 7 years that reliably turned my brain chemistry upside down every 5-6 days. But anyway.)

As Elizabeth Gilbert wrote in Big Magic, about a woman who’d read her book and imagined a narrative within it that wasn’t actually written: “Their reaction doesn’t belong to you.” I’m only responsible for what I put out, not how it passes through others’ personal filters, for better or worse. I know now that I don’t have to allow those “worst fears” to have power over me anymore, because I know I will not only survive should it happen again, but that I have healed so much in at least this area, that I won’t be sent into a spiral of self-loathing, automatically assuming I deserved it. I can’t even explain the pit “old me” would’ve had to crawl out of in the past, the way it would’ve stirred up abandonment depression and sincere beliefs of “maybe I am everything they think.”

I’m making tremendous progress this year.

This isn’t even counting what happened at the beginning of the year, when I warned people about someone who had copied and posted my work but changed the words around to reflect their own story and history. Instead of any “thanks for letting us know,” and despite me sending them the link to my piece, I was met mostly with people incredulously claiming it wasn’t mine, and how dare I say such things. Ha! So part of my path this year seems to be learning to not be affected by blame or praise. But especially the blame.

“How equanimous are you when people express their views of liking or not liking what you do? Do you take it personally or understand they are simply expressing their own bias? Does praise or blame disturb your balance?”¹ “As the Buddha said, pleasure and pain, gain and loss, praise and blame, fame and disrepute constantly arise and pass away, beyond our control.” He said, “There is always blame in this world. If you say too much, some people will blame you. If you say a little bit, some people will blame you. If you say nothing at all, some people will blame you.”²

I think I’m doing pretty good so far. Don’t you think?

On second thought, don’t respond to that.


I cannot live my life letting fear of what someone might misinterpret decide what I do or don’t do, what I say or don’t say, what I share or don’t share. I’ve lived most of my life walking on eggshells for everyone else, and I’ll be damned if I’m going to spend the remainder of my life doing it, too.

Even now as I write and edit, I feel fear over what others will think about this. Maybe that won’t ever go away. But it doesn’t have to: I’m going to write, speak, share, and live, regardless.

I’m happy about all the progress I’ve made, even if it took something painful to help me realize it.


Takeaways for others, I hope:

  • I didn’t include this part of things, but make sure you’re not accusing someone of something that may actually be partly or entirely due to a technological glitch.
  • Don’t take your thoughts so seriously. Some meditation practices help us contemplate situations from the perspective of, “Do I really know this is what’s happening?” Much of the time, we truly don’t. This can help us find that place of spaciousness from which we can choose to respond instead of react out of past hurts or abuse.
  • If you have mental illness, try to remember your sick brain may colour your perspective of what’s going on. Although not everyone has the luxury of being able to find that spaciousness, not even myself, at all times; the key word is “try.”
  • Likewise, remember if someone has a disease affecting their brain, there’s very little chance it won’t also affect their thoughts, as well as the way they process information. Have compassion.

Above all, remember everyone is doing the best they can with what they have to work with, and for goodness sake, try to think the best of each other.

"To love somebody is to let them be who they are and do what they have to do."

a rainbow at night


1. Focused and Fearless: A Meditator’s Guide to States of Deep Joy, Calm, and Clarity, by Shaila Catherine, 2002
2. http://www.dharmanet.org/samples/bv4a.htm

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.”

The Parts of ME: Does “Post Exertional Malaise (PEM)” exist in other diseases?

When the National Academy of Medicine (NAM, formerly the Institute of Medicine/IOM) released its recommendations for Systemic Exertion Intolerance Disease (SEID) as a replacement for “ME/CFS,” I saw a lot of people spreading this myth: That “post exertional malaise” (PEM) is what differentiates myalgic encephalomyelitis (M.E.) from other illnesses. This is not true, nor is this what’s explained in the NAM’s report. At most, the report says that the presence of PEM helps distinguish it from other conditions, while it is what best distinguishes “ME/CFS” from idiopathic chronic fatigue. PEM alone is not specific to M.E., Chronic fatigue syndrome (CFS), or SEID, just like unrefreshing sleep is not specific to any one disease. Continue reading “The Parts of ME: Does “Post Exertional Malaise (PEM)” exist in other diseases?”

IVIG Can Help Eradicate Bartonella Infection: My Success Thus Far.

[estimated reading time: 5 minutes 12 seconds] © a rainbow at night
After almost seven years with this infection, I think the bartonella may be gone for good.

If you recall from this previous post, I talked about how my health was either about to nosedive, or finally overthrow this infection thanks to the millions of antibodies I now get infused into my body every four weeks (certainly many of which are bartonella antibodies, since this bacteria is so common)… Guess which one happened? Continue reading “IVIG Can Help Eradicate Bartonella Infection: My Success Thus Far.”

“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.””

ME vs. CFS vs. SEID Information & Advocacy Chart

  • Click on the chart for the full-size version, as your browser may have resized the one below.
  • If you’d like an extra large version (say, for special eyes), click here.
  • To download as a PDF file (which I optimized for printing), click here.
  • For Facebook upload onlydownload this special Facebook size of the graphic, because Facebook has annoying rules about photo dimensions.
  • On Twitter? Click here now to Retweet/Quote/etc. the graphic
    • If you try to share the image anywhere else and it uploads blurry, link to this direct image.

ME CFS SEID chart via arainbowatnight


  • Click on the chart for the full-size version, as your browser may have resized the one above.
  • If you’d like an extra large version (say, for special eyes), click here.
  • To download as a PDF file (which I optimized for printing), click here.
  • For Facebook upload onlydownload this special Facebook size of the graphic, because Facebook has annoying rules about photo dimensions.
  • On Twitter? Click here now to Retweet/Quote/etc. the graphic.
    • If you try to share the image anywhere else and it uploads blurry, link to this direct image.

You may share any of the graphics or downloads linked in this post.

Today is International Awareness Day for Chronic Immunological and Neurological Diseases. Feel free to share this page or download the graphic and share it on social media with friends, family, and your circles. Like most diseases, people never hear of this one until it happens to them or someone they love, but facts about classic M.E. have effectively been buried beneath 30 years of misinformation. Many have lived with these diagnoses for years and never heard any of this before! It doesn’t have to be like this.

I’m hoping people diagnosed with CFS (or diagnosed with “ME” but by using CFS criteria, which happens often in places like the UK) will read this, think twice about how exactly they got their diagnosis, and begin looking for the real cause of their symptoms with a doctor’s help. Or, if they do unfortunately meet the criteria for M.E., they will learn what they’re really up against, how to manage this disease appropriately, and might even be able to find specialists to help with specific symptoms. Learning that you have the real M.E. also gives you the opportunity to slow disease progression with things like mitochondrial support, immunoglobulin replacement therapy, treatment for secondary infections, and energy management such as pacing and switching, in contrast to forced exercise most recommend. Repeated episodes of paralysis can cause additional permanent damage to the muscles; those unaware they have M.E. wouldn’t know this.

Just remember: Whatever your symptoms, whatever your diagnosis, all of us in this community understand your suffering and want the best for each other. If you’ve had a long day of advocating, here’s some very good news, and your invitation to rest.

With Love,

a rainbow at night


Quick links:

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:

The Parts of ME: What If It Were You?

Throughout this series, but especially in this part, I only ask you to remain open. But what does that mean? To quote Thich Nhat Hanh: “Usually when we hear or read something new, we just compare it to our own ideas. If it is the same, we accept it and say it is correct; if it is not, we say it is incorrect. In either case, we learn nothing.” So by being open, we agree to allow the information in and integrate it with the use of our intelligence instead of thoughtless reaction.


So much of the M.E. vs CFS debate is clearly a matter of perspective.

If you’ve been offhandedly diagnosed with myalgic encephalomyelitis (M.E.) or diagnosed with chronic fatigue syndrome (CFS), there’s a good chance you tend to to speak with those in the community who also have your symptoms. It’s easy to reinforce your own version of things when there’s nothing to challenge it; if everyone around is just like you, who wouldn’t feel right? You generally support research efforts into “ME/CFS” because you feel confident this research will actually help you and others, so your main advocacy cry is “More funding!”

But hold on…

Would you still feel just as confident that research being done on your illness was ACTUALLY being done on YOUR illness if all the people you talked to didn’t have your symptoms? Or would that make you wonder which disease researchers were ACTUALLY studying/what group of people the studies were ACTUALLY helping?

To quote a friend: “Before you jump on the bandwagon and decide that this is just a silly name war, consider the implications.”

What if everyone you talked to with your illness said they actually weren’t very fatigued and could exercise five times a week? Your thoughts are probably the same as what an M.E. patient thinks when we hear of someone getting an M.E. diagnosis (1) without getting sick after a virus, (2) without having any neurological damage, and (3) without experiencing any exertion-induced muscular fatigue and/or pain (with subsequent exertion-induced paralysis): How can they have a disease without any of the core manifestations of that disease?

Or, what if your version of CFS were suddenly renamed to “idiopathic rash disease” just because a lot of people with CFS get rashes? Over time, your disabling fatigue, post-exertional malaise, pain–none of it is required anymore for this new diagnosis, BUT! It’s now called “CFS/Idiopathic Rash Disease.” You might ask, but Kit, if none of the symptoms for CFS are required for Idiopathic Rash Disease, why on earth was it ever combined? Well, because the Idiopathic Rash group advocated so strongly that the illnesses should be combined–after all, even though they have little in common now, it did originally start as a type of CFS, right?–that it ultimately becomes known internationally as “CFS/Idiopathic Rash Disease.” This looked like a good thing to the thousands of people who had no idea what “real CFS” was, so there wasn’t much protest from society at large…even though this combination further muddled everything (especially research!) by combining what used to be called CFS–your disabling fatigue, pain, sleep problems, etc.–with a new category that the government invented to study unexplained rashes.

Meanwhile, CFS advocates are feeling increasingly helpless that the majority of their patient group is being replaced with something that only barely describes their condition–your condition!–pleading, “This rash disease used to be called CFS, because we all had excruciating fatigue and post-exertional sickness! What is left to study our illness if all research is going towards unexplained rashes that could be caused by a million different things? Some of us are dying!” Incredulously, the people diagnosed with Idiopathic Rash Disease truly think they have the same illness as you, as classic CFS, even though they didn’t need nor have any of your symptoms for diagnosis.

How do you suppose research on “CFS/Idiopathic Rash Disease” will actually study people like you, now, when classic CFS is being buried year after year by more and more people who just want answers to their rashes…? And truly, they deserve those answers, don’t you think? You wouldn’t want to deny them their own research just because the government made a nonsensical decision to replace CFS with a focus on this new rash disease. But nonetheless, both groups are synonymous with each other, now, and across the globe people are starting to forget that CFS was once its own category, with its own symptoms that had nothing to do with idiopathic rash.

One day, you realize thirty years have passed, and all the new patients being diagnosed with “CFS/Idiopathic Rash Disease” don’t even remember when CFS was its own illness anymore. Funny thing is, everyone is quick to remember the part where Idiopathic Rash Disease started because of some CFS patients with rashes, but no one seems to remember that that’s where their similarities ended. You’re no closer to science figuring out what’s wrong with you, nor is anyone with Idiopathic Rash Disease any closer to finding out what’s really causing their symptoms. In fact, these new, uninformed patients are now yelling at you, an original CFS patient, claiming none of this even matters. Why are you so caught up on a name? Idiopathic Rash Disease is the same as CFS because it was created from CFS patients. And if no one likes the name of “idiopathic rash disease” maybe we’ll just petition the government to call this “CFS” again–that would help everyone, right, if we just took all these random rash patients and said they have CFS?

Hopefully that scenario upset you. Hopefully it made your head spin to think that anything so nonsensical and unscientific could ever happen. Maybe you’re even outraged and ready to end this hypothetical situation…

But this is exactly what happened to people with classic M.E. when CFS was invented. CFS was created to study “chronic fatigue of undetermined cause” and as the years have passed it’s morphed into a hybrid that still doesn’t describe any one condition. And it is not the fault of the CFS patient (or “ME/CFS” patient) that they’ve been so misinformed by the people they thought they could trust, or that those in power leave out major details when discussing ME and CFS history. But if it were you, if you REALLY WERE being replaced and forgotten in favor of a new illness that doesn’t describe your disease, wouldn’t you want someone to speak up for you?

So why do people look at us like we’re doing something wrong by reminding everyone that chronic fatigue syndrome is not M.E.? I quote again: “Before you jump on the bandwagon and decide that this is just a silly name war, consider the implications.”


Luckily, the illness defined by Ramsay et al. called myalgic encephalomyelitis is not that easy to get. But

  • we all got sick after a virus;
  • we all have measurable neurological damage; and
  • we all have a very distinctive muscle pathology, a sign that was described by multiple doctors who all came to the same conclusion without having any communication with each other: “Muscle fatigability, whereby, even after a minor degree of physical effort, three, four or five days, or longer, elapse before full muscle power is restored and constitutes the sheet anchor of diagnosis. Without it I would be unwilling to diagnose a patient as suffering from ME, but it is most important to stress the fact that cases of ME of mild or even moderate severity may have normal muscle power in a remission. In such cases, tests for muscle power should be repeated after exercise.” (Quote by Dr. Melvin Ramsay, although all M.E. experts explain this same phenomenon in their own way)

ME CFS SEID criteria-only

And finally, none of us are being studied at all unless we piggyback into research with other illnesses. People with classic M.E. have been forgotten, and this has been worsened irrevocably by (1) fighting to have ME and CFS combined into “ME/CFS” without fully understanding what this does to us or how much it further harms everyone, as well as (2) efforts to rename CFS to M.E., which is entirely illogical. Several recent polls have revealed that patients prefer the name M.E. because it sounds more legitimate, even though most people diagnosed with CFS–and even people diagnosed with ME without thorough inspection–do not actually have classic ME.

It makes no sense to rename CFS (and SEID) to “M.E.” without also changing the diagnostic criteria to actually reflect M.E.This is not 1988, the CFS bucket no longer contains just people with my illness, or just people with your illness, but dozens of misdiagnoses combined under one label. So why on earth would we rename one condition to another condition that it isn’t? I think the only thing these poll results prove is just how misinformed our community really is about our history, which is a major reason I’m writing this series. (I also left a comment to that post.)


So what’s my point in all this?

People who do get this infectious neurological disease–classic M.E. as it was defined before being unduly influenced by CFS and psychiatry–deserve to be and should be studied on their own, NOT forced to share the diagnosis and subsequently the research opportunities with other illnesses, all because a mistake was made thirty years ago. It’s not about the name itself as much as what the name used to stand for: I don’t care if we start calling it Egg Disease, as long as it actually describes and studies us, and only us! Until we consistently group people like us together and study them, we will never know what is causing this illness or how to relieve the suffering of people who move into the chronic, incurable, relapse-remitting or progressive forms.

All of these outbreaks didn’t just just magically stop occurring when CFS was invented. M.E. outbreaks are still happening even though the epidemics are no longer being recorded or studied. Cort Johnson wrote that Dr. Byron Hyde mentioned having “reports of over sixty” M.E. outbreaks from just 1988 to 2003, which were “no longer figured in the literature” and “were not given any mention in the ICC” (International Consensus Criteria). This should horrify people, and yet…

So please tell me how people with classic M.E. are supposed to be okay with what’s happened. Please tell me how research on people who became gradually fatigued is supposed to help people who all got sick after a virus. Please tell me how research on people who are chronically fatigued is supposed to help people whose breathing muscles are so weak many must sleep propped up or suffer from hypoxia; who exhibit clinical heart failure after exertion; who can’t write without risking arm paralysis; who can’t get up from the lying position using their back and abdominal muscles (which used to be such a prominent feature at the onset it was almost a diagnostic sign). And please tell me how giving people a diagnosis of M.E. without requiring the core manifestations, without checking for bacterial infections like Lyme disease, or even without giving them an MRI, is supposed to result in anything other than continued disaster (for us and the integrity of research).

If you want to pretend none of this is true–that you didn’t read any of this, that infectious M.E. doesn’t still exist–you won’t run into any shortages of other places to go. There are countless patient groups for you to join that will say none of this matters because it’s not THEIR symptoms that are being ignored. You’ll still have those options… But I ask you to contemplate having your disabling condition replaced by idiopathic rashes, like we’ve had our disabling condition replaced by idiopathic fatigue. After reading this, you are aware that we still exist and that M.E. epidemics are still quietly occurring. Don’t forget us.

All of that said, I do think we’re too far gone to erase CFS or SEID, despite some claiming it is the only way forward. I do not think it is the only way, nor do I think it’s even plausible. In reality, while we’re fighting for change, people are going to be misdiagnosed with CFS (and SEID, if it’s implemented)…including thousands of people with M.E. This is terrible because it diagnoses us too late for intervention, doesn’t give us the treatment advice we need in time, and doesn’t allow us to partake in research that applies specifically to us. But not all “ME/CFS” research has been fruitless. Some researchers select specific subsets–such as focusing on post-viral acute-onset cases while at the same time selecting patients who meet the Canadian Consensus Criteria, the only criteria that specifically require muscle fatigue–and we do get somewhere. That is exactly how the recent “robust evidence” paper selected their patient group, and it most likely included many patients with actual M.E. because of it; to that effect, the results actually match historical knowledge about ME in several ways. I also personally hypothesize that if SEID inadvertently catches a greater number of people with M.E., coupled with increased funding, this may one day force science to separate us into our own group yet again, if we repeatedly show abnormalities that others CFS subsets cannot reproduce… But I’ll have to explain all that in a later post, as this one is getting uncomfortably long.


Lastly, consider this:

There are thousands of rare diseases that will never be studied or researched. I think sometimes we get lost in the idea that it’s others’ jobs to fix us instead of our job to continue living our lives as best as possible. It’s wonderful that we’ve created a system to study diseases and relieve suffering, even if those systems get it very, very wrong sometimes. But M.E. has existed for centuries and will continue to do so, no matter what people call it, no matter how many people try to say we don’t exist. So listen to me:

I believe you. I’m sorry we’re on this particular journey together. And it is my most sincere wish that you not only discover the truth about this disease to the extent that it will help you (the books by our experts are some of the most validating things you’ll ever read) but that you’ll also do everything you can to increase your quality of life while you’re here, because you do matter. Dare to find enjoyment in your life, even if it’s difficult, because your life isn’t over just because you or a loved one got sick. In the mean time, we have to help each other, and I hope to do my part by not letting the truth die out. If you are also a person with classic M.E. or their carer, I invite you to share your story with the world, as well.

“If you destroy the record, you destroy the truth.

I’ve learned in my adult life that the will to silence the truth is always and everywhere as strong as the truth itself. So it is a necessary fight we will always be in: those of us who struggle to understand our common truths, and those who try to erase them. …

All so precious and fragile. Don’t let anyone tell you that the truth can’t disappear. If I believe in anything, rather than God, it’s that I am part of something that goes all the way back to Antigone, and that whatever speaks the truth of our hearts can only make us stronger. Can only give us the power to counter the hate and bigotry and heal this addled world.

Just remember: You are not alone.”

(Paul Monette, “Last Watch of the Night: Essays Too Personal and Otherwise.”)

Until next time…

a rainbow at night


See also:

Books and Materials on Myalgic Encephalomyelitis:
  • Missed diagnoses: Myalgic Encephalomyelitis & chronic fatigue syndrome (2nd ed.), by: Byron M. Hyde, M.D. with a foreword by Professor Malcolm Hooper. (2011)
  • The Clinical and scientific basis of myalgic encephalomyelitis/chronic fatigue syndrome, by: Jay A. Goldstein, M.D. and Byron M. Hyde, M.D. (1992)
  • Myalgic encephalomyelitis and postviral fatigue states: The saga of Royal Free disease (2nd ed.), by: Melvin A. Ramsay, M.D. (1988)
  • Click here for more Resources on M.E. and CFS

The Parts of ME: Introduction & History: How Did We Get Here?

It takes a long time for me to integrate new information.

And as anyone in the ME community knows, we’ve had a ton of that since February. Instead of blindly powering through, waiting has given me a month to gather facts, opinions, and input from our advocacy leaders, my trusted friends, and even the IOM committee members. The best way for me to write and for you to read (that is, if you want) is to break it into parts.

Please note that each post will be able to stand on its own: Don’t fret about having to remember plot-lines from week to week; this is not a story. This is definitely. not. a story.

All right. Fasten your seat-belts, gather your friends, because here we go. It’s time to make some sense out of all this.


The Parts of M.E. (Upcoming posts)
  1. Introduction & History: How did we get here?
  2. What if it were you?
  3. Does “Post Exertional Malaise (PEM)” exist in other diseases?
  4. The IOM Committee Speaks Out
  5. The Problem with M.E.-only Advocacy, and How SEID May Help
  6. Does encephalomyelitis really exist in Myalgic Encephalomyelitis (ME)?
  7. The ICC or CCC as an M.E. definition: Are we promoting bad science?
  8. Why do we advocate?
Note: Some of these might be combined or further segregated as I go along.

Let’s begin by clearing something up: How did we get here? The confusion between M.E. and similar states has always been a point of controversy. Today’s over-inclusion involves M.E. vs Any other disease with chronic fatigue; before CFS, the over-inclusion was of M.E. vs. Any other disease with chronic post-viral fatigue. These illnesses have also always been thought by many to be purely psychological in origin…along with 95% of all other ailments, because that’s just what people did back then. (Hysterical wandering uterus, anyone?)

But why hasn’t M.E. moved forward with all the others, especially after decades of documented outbreaks and with so much research proving it’s an acquired disease of non-mental origin?

The major denial of M.E. in both the US and UK has stemmed from people with too much power failing to examine a single patient.

McEvedy and Beard–both psychiatrists*–wrote their deplorable 1970 re-analysis of the 1955 Royal Free epidemic without doing a physical examination on a single patient, basing their feedback on data which they decided could just as easily have been hysteria…not out of some moral obligation to scrutinize data, but because McEvedy was a psychiatry student who needed an easy paper to write for his PhD. Professor Hooper writes of this:

“McEvedy stated that he did not examine any patients and undertook only the most cursory examination of medical records. This was a source of great distress to Melvin Ramsay who carried out the first meticulous study of the Royal Free outbreak. The outcome of McEvedy’s work has been described by one of the ME/CFS charities as “the psychiatric fallacy”.” (1)

Dr. Hyde writes of his personal visit with McEvedy in 1988:

“Why had he written up the Free Hospital epidemics as hysteria without any careful exploration of the basis of his thesis? I asked.

His reply was devastating.

He said, ‘It was an easy PhD, why not’.” (2)

While over in the US, it is well-known that the CDC did the exact same thing:

In response to several 1980s M.E. outbreaks, CDC investigators looked only at patient charts–NOT actual patients–and returned to their offices to make jokes about our presumed “hysteria.” It wasn’t until the doctors attempting to manage these outbreaks took over $200,000 of their own money to pay for MRIs, that they found their patients had brain lesions indistinguishable from those found in people with AIDS; because these findings were not seen in ALL patients, they were not taken seriously, despite being consistent with myalgic encephalomyelitis. In 1988, the CDC christened the continuing outbreaks as a new illness–chronic fatigue syndrome (CFS)–effectively because three M.E. experts left the committee early due to a lack of patient information and the remaining committee’s preoccupation with Epstein-Barr Syndrome. (2)

From the criteria that developed to study CFS (which was only intended “to provide a rational basis for evaluating patients who have chronic fatigue of undetermined cause“), we have helped cultivate an old mess that still exists today: Thousands of people diagnosed with everything under the sun, whose illness is being called myalgic encephalomyelitis. This includes thousands who don’t meet even a single criterion for what was actually M.E. before the invention of CFS or the watered down post-CFS model of ME that exists in many countries today.

ME CFS SEID criteria-only

As you can see, this is the reason some diagnosed with CFS do have M.E., and the reason much research does still apply to M.E. even if the titles “CFS” or “ME/CFS” are used. The trick lies in checking the methodology: If patients were selected using the ICC or CCC (especially in addition to another criteria), there’s an excellent chance the results could apply to classic ME. If they were selected to meet certain additional M.E.-like criteria, such as a post-viral onset, even better. But if patients only had to meet one CFS criteria (or something equally nonsensical, such as the UK’s “NICE guidelines for CFS/ME”), proceed with caution, because this may mean the only thing the participants had in common was “a fatiguing illness.”

“Even if the truth is buried for centuries, it will eventually come out and thrive.” (Burmese Proverb)

To be continued…

a rainbow at night


(P.S. – I thought I should finally publish a Facebook page so I can be engaged with the wonderful groups and people there, and also share things that are both too long for my twitter and too short for blog posts. Watch it for updates of new posts, things relevant to ‪‎Myalgic Encephalomyelitis‬ and related diseases, ‪Lyme Disease‬ and related content, ‪Buddhism‬ and ‪spirituality‬ (theists and non-theists welcome), ‪Mindfulness‬ and other meditations, ‪‎coping‬, ‪advocacy, and more. You CAN post to the page, but things will be moderated–checked by me for inappropriate content before they go public–to keep it a safe place: Differing opinions are NOT seen as confrontational, just don’t talk down to others. :) Thank you for your “Like”!)

Explaining to Those with “ME/CFS” That They Cannot Have Both

ME CFS SEID criteria-only

Here are some things I used to think about people who tried to tell me chronic fatigue syndrome (CFS) was different from myalgic encephalomyelitis (ME):

  1. They’re just trying to cause a problem where there isn’t one.
  2. They’re “those advocacy-type people” who “make a big deal out of everything.”
  3. They just want it to sound more serious, when it’s actually the same illness.
  4. It really doesn’t matter what people call it; they just want their disease to be “special.”

Yes, I *legitimately used to think these things.*

Have you ever wondered why people continue using terms like “ME/CFS” “CFIDS/ME” (and now “ME/SEID”), despite being confronted with information that clearly details their differences? Ever wanted to inform someone you care about, but aren’t sure how?

I recently witnessed this exchange that took place across several days, about what all too often happens when people try to educate others on this matter. Brooke and her friends have graciously allowed me to post their conversation on why people resist this truth so fervently, as a guide for all of our understanding.

(She would post it on her own blog, but now lacks the cognitive flexibility to organize and edit as I’ve been blessed to accomplish here over the past week. I’ve edited the quotations only to clarify the intended meaning and combat the effects of cognitive disability.)

“All truth passes through three stages. First, it is ridiculed. Second, it is violently opposed. Third, it is accepted as being self-evident.” Arthur Schopenhauer, German philosopher


Renee Roszkowski: “Just got called ‘disrespectful’ for trying to educate on the fact that M.E. and CFS are not the same thing and the term ME/CFS is not really a good term.”

Brooke: “I’m sorry to hear that. Unfortunately, it’s not too uncommon for (some) people diagnosed with CFS to get upset when people try to explain the difference. I can understand: They go so long not knowing what’s wrong with them, being judged, told it’s all in their heads, etc, and then a doctor finally gives them a diagnosis frequently linked together with a very real, fairly well-understood, officially recognized neurological disorder, so they want to cling to that. Being told they may not have M.E. (and most likely don’t), puts them back in the position of, “Well, then what’s wrong with me?” And that’s difficult to accept.

It’s hard for those diagnosed with CFS to accept that they *don’t* actually have a diagnosed illness, yet; that all they have is a diagnosis that says doctors don’t know what their diagnosis is; that it’s not a single, treatable illness able to be researched like so many have been led to believe. (It was never intended for CFS to be its own disease; it was intended to “to provide a rational basis for evaluating patients who have chronic fatigue of undetermined cause.” ¹). Finding out that they need to go back to pushing doctors to do whatever tests are necessary to find their *true* diagnosis can be extremely disheartening. …

It’s just difficult to help people get past the initial frustration or fear-induced reaction of disbelief, and help them move on to the idea of, “Hey, if I don’t actually have M.E., there’s a decent chance whatever I *do* have has at least some level of treatment available–maybe even a cure.” It’s difficult to go back to pushing for answers, but it is oh-so-worth-it for those who finally find them, and find some level of relief from their symptoms!

Renee: “I can totally understand, having been diagnosed with CFS, but actually having Chronic Epstein-Barr Virus, endometriosis, probable POTS (not yet diagnosed but I meet the diagnostic criteria), and potentially having a thyroid disorder, ALL of which have fatigue as a major symptom. I totally understand.”

Brooke: “Yeah, a lot of people diagnosed with CFS also have other diagnoses, which is kind of crazy if those other diagnoses can explain their fatigue, because a requirement for a CFS diagnosis is that your fatigue is not explained by any other illness ² (again differing from M.E., which, like any other neurological illness, you can have even if you also have other conditions causing similar symptoms). Why do doctors diagnose people with CFS if their symptoms are explained by other (testable) conditions? Not only is that medically incorrect/[completely against the criteria for diagnosis], it just doesn’t make sense to me. Diagnosing these individuals with CFS [when other conditions explain their symptoms] then saying it’s the same as M.E., is like doctors issuing a statement that everybody with a condition that causes any form of fatigue will now also be diagnosed with cancer.

Jennifer Phillips: “What people mean is too often not what actually gets heard. ‘CFS is not a real diagnosis’ can all too easily get heard as ‘CFS is not a real disease and you’re making up how sick you are.’

You need to approach it like this:

“You probably know that CFS captures a lot of different diseases that doctors just don’t know how to diagnose, right? People with CFS are sick, but not all in the same way. But M.E. has a distinct diagnosis and known cause. So if you’ve been diagnosed with CFS, you may or may not have M.E., depending on if the doctors have done these diagnostic tests or not. If you don’t have neurological problems, you probably do not have ME. This does not mean you are not sick, but that the knowledge about M.E. likely can’t help you and chances are your doctors need to keep figuring out what your CFS really is from.

Brooke: “That’s generally how I approach it when explaining to people who don’t already know all this stuff. I’m a bit more blunt (or rather, I just don’t take the time/energy to be extra careful in wording) with people who I know already get it and have the same views, but I agree, when educating you do have to be careful not to come across as saying the person is not sick. Most people diagnosed with CFS have heard that too much in their lives, and will be quick to get defensive–I know, because at one point I, too, was (mis)diagnosed with CFS. The vast majority of people with CFS don’t have M.E., so in a way I ‘lucked out’ once I had the CFS diagnosis, in that it wasn’t too hard to find the accurate diagnosis from there (with the proper tests to correctly diagnose it). But I do think most people with CFS have at least one physical illness of some kind. Even for those whose illness is psychiatric, that’s nothing to look down on. (For example, one study found over 30% of individuals with Major Depression were misdiagnosed with CFS: “Findings indicated that 38% of those with a diagnosis of a Major Depressive Disorder were misclassified as having CFS using the new CDC definition.” ³) There are often very real chemical/physical causes behind mental illness, too. They simply need to find the truth, whatever their true diagnosis is, so they can look for appropriate treatments.”

Renee: “I told them that I have CFS and a friend with ME, so I don’t think I sounded dismissive.”

Brooke: “One of the issues I see all too often is that many CFS patients actually *don’t know* that CFS includes people with lots of different illnesses. They’ve actually been told by their doctors and others that CFS is one single illness (“otherwise, why/how would anyone research it?”) and that “it” is synonymous with ME. They think that as long as you have unexplained fatigue lasting six months or longer, you have ME. Getting people to understand that (1) there is no single “it” when it comes to CFS, (2) that ME is something *entirely* different (most M.E. patients don’t even list “feeling fatigued” as a major symptom; our fatigue is at a cellular level and can contribute to the transient paralysis many of us experience), and (3) that *every* diagnosis of CFS is a misdiagnosis [because CFS is not a single disease but a diagnosis given when you have unexplained fatigue, nowadays particularly when you have unexplained fatigue with a post-exertional crash] – that can be a real challenge.”

Jennifer: “Which is why I phrase that point up front, as something they either know or don’t know, *not* something open to debate or telling them what to believe. Like you said, that confusion is why you want to educate people.”

Richard Heckart: “A closed mind is worse than an empty one. That’s my new saying from now on. Pass it on.”


To additionally put this in perspective for you:

It’d be like if the government suddenly stopped diagnosing Multiple Sclerosis and started calling all new cases “Weak Leg Syndrome,” deciding that the primary symptom of this new syndrome is weak legs. Eventually it gets dubbed “MS/Weak Leg Syndrome.” And now they’re saying that all you have to do to help weak leg syndrome is exercise because some people got better that way; they think other people simply have weak legs because they’re too depressed to move. Oh, and because MS = Weak Leg Syndrome now, no one ever gets diagnosed with actual MS anymore, so people with actual MS never get the correct life-saving treatment, therefore everyone who actually has Multiple Sclerosis, dies. Sounds crazy, right? Can you see this actually happening with any other well-known disease like this? Not at all. But that’s what happened to people with classic ME.

I hope people understand we are not just trying to nag you, or get validation for “our special disease” while leaving out everyone else. This isn’t a club anyone wants to be in. Everyone is suffering because of this international confusion. And because you can’t reliably study anything that isn’t clearly defined, no matter how many times they rename it or move around the same criteria, CFS still won’t be its own disease. There was no need to ever create CFIDS/CFS/SEID when the illness occurring in the 1980s epidemics already had diagnostic criteria, it already had a known cause, and it already had a name: Myalgic Encephalomyelitis. But instead of continuing to use it, the government created something entirely different, and all government-funded research on people with classic M.E. abruptly stopped. 

If you get diagnosed with CFS but don’t meet the diagnosis for the original illness (M.E.), it means you have something else that your doctors haven’t yet identified, ranging from the potentially treatable to the potentially fatal. So please continue to educate yourselves, *and* your doctors, because they are not omnipotent gods incapable of mistakes. There are also things you can do to slow down the progression of M.E., if you do indeed have it. And last but not least, don’t think that just because you have Post-Exertional Malaise (PEM), that you automatically have ME, because post-exertional malaise does exist in other diseases.

I have a friend in the UK who’s been diagnosed with “ME/CFS” for several years without having ever been given an MRI. But yet she’s in a wheelchair, getting worse, and shows several defining symptoms of MS.

Maybe she just has Weak Leg Syndrome and needs to walk it off…

a rainbow at night


Resources for M.E. and CFS

Note: Because of thirty years of confusion, some information labeled under CFS may be relevant to M.E., since some researchers use additional characteristics and biomarkers to select for different subsets of patients; for example, selecting the most severely affected (which through no coincidence tend to be those with M.E., often due to years of being told to exercise when this leads to disease progression and premature death), those with an acute viral onset, and those who met diagnostic criteria which required muscle fatigue on exertion. Likewise, not all information labelled “M.E.” is actually referring to the specific disease of myalgic encephalomyelitis, and may only be borrowing the name while in fact the data therein describe general CFS or “ME/CFS.”

(1) Holmes, G. (1988). Chronic Fatigue Syndrome: A Working Case Definition. Annals of Internal Medicine, 387-387. “We also present a working definition for the chronic fatigue syndrome designed to improve the comparability and reproducibility of clinical research and epidemiologic studies, and to provide a rational basis for evaluating patients who have chronic fatigue of undetermined cause.
(2) The IOM recommended on Tuesday, February 10, 2015, that this requirement be lifted, but please bear in mind this has not yet been implemented by the CDC or become customary for doctors; diagnoses of CFS are still and have always been made on the basis of unexplained fatigue, whereby any other diagnosis is supposed to disqualify you from having CFS, because CFS is a diagnosis of exclusion, i.e., not a specific illness but a category people are put in when doctors cannot explain your fatigue and other symptoms, even if your symptom of fatigue is post-exertional fatigue.
(3) Jason et al. Evaluating the Centers for Disease Control’s Empirical Chronic Fatigue Syndrome Case Definition. (2008). Journal of Disability Policy Studies, 20(2), 93-100. Almost 2 of every 5 people diagnosed with Major Depression meet all the criteria for CFS, too. “Findings indicated that 38% of those with a diagnosis of a Major Depressive Disorder were misclassified as having CFS using the new CDC definition.”

“Of Course It’s Easy For YOU” Syndrome

© a rainbow at night

“Education is an admirable thing, but it is well to remember from time to time that nothing that is worth knowing can be taught.” (Oscar Wilde)

So how do you respond when someone looks at something you’ve worked your ass off for and thinks you only got it because the odds just fell into your favor? How do you process this inherent invalidation of all your struggles, and what does it mean about the person who said it?

When I look back at all that I’ve done over the past year, it really blows my mind. And I did it all because I first made the choice to live and enjoy within the confines of my circumstances, just like I did last year. I set in my mind what I wanted, made whatever arrangements I could on my own to help them manifest, and let the Universe work out the rest based on what I needed to experience.

If I wasn’t supposed to have something yet (or at all), well it wouldn’t have been from my lack of trying.

None of it would have happened if I just blindly accepted the identity of “sick person” that most family members and even doctors wanted to give me; that for too many years I gave to myself, as well. With this identity comes the belief that you must wait until you’re better before you can enjoy your life, whereas nothing could be further from the truth, especially when it comes to long-term or chronic illness.

But in general people don’t want to hear that. Some don’t even want to hear about all that I was able to experience (although I’ve already written about my past endeavors-while-sick), and that’s okay. I know the things I lived, I don’t need further documentation. And because it involved a lot of travel, I don’t imagine they’d be all that interesting to anyone else, anyway, in the same way slide shows of your vacations need to be ambushed upon unsuspecting house guests if you plan to share them.

I might be a little biased on this next part, due to people continuously asking my advice on how to get something I have (emotional freedom and the like, usually), yet being very unwilling to actually do anything that’s even mildly uncomfortable in order to get it. Then they turn around and play this card:

They wish something in their life was as “easy” as I “seem to have it.”

More than a few people have said that to me within a week’s time, and I couldn’t help but laugh.

Because nothing–absolutely nothing–has come easy for me. No one comes to acquire the traits that make life’s difficulties seem “easy,” because life actually WAS easy. No, they arise from having had so much hardship that you eventually learned coping mechanisms to deal with them. Even still, what one might perceive as my ease of living is actually my choice to experience it as such, and I’ve crossed over mountains to get to this place from where I was, because I was not raised to be peaceful. (Please read that. Okay?)

But people only hear what they want to hear, and until they’re ready to change, they resort to, Of course YOU did it, you [insert excuse for why it’s easier for everyone else besides them]. Or else they want to be spoon-fed the exact steps they need to take, as to (1) only do and invest as much work as is necessary and (2) eliminate the natural consequence of following less-strictly-defined steps: fear and anxiety.

This “Of Course It’s Easy For You” Syndrome is also troubling because it’s an unconscious confession of (more fear) self-sabotage. This is inventing excuses for why you can’t have what someone else has, to convince yourself not to even try. It’s giving yourself an “out” based on an external factor out of your control, or something internal you perceive yourself not to have but which someone else does, helping substantiate your belief that the situation is out of your hands.

But if you want things to be easier, it doesn’t start with changing your circumstances, because you can only manipulate your circumstances to the extent that you realize what is really yours to control.

And that all starts with manipulating you.

Society tells us from the day we step outside that your life is supposed to be about getting from point A to point B, and to pass your days filling in the rest with your to-do list of how to accomplish that. But that’s incorrect. Our lives aren’t defined by only the big decisions, goals, and occurrences. However much impact they have on the rest of our days, those major game-changers are few and far between.

Life is mostly made up of all the little moments you encounter between those perceived checkpoints. It’s all the smaller things you do day in, and day out, that make up the most of your life and help determine your happiness. You can have a radically different life without changing a single external circumstance, because the only common denominator in your entire existence, is You. In other words:

When it comes to enjoying your life and finding peace, it has nothing to do with someone else having something you don’t.

And I guess that’s why it doesn’t matter too much to me anymore to explain all that I’ve been able to do, even while sick. Although reaching those goals was inexplicably amazing, it’s the process of living and thinking that helped me manifest them at all, which holds the most value in the long run. And that’s the part I really want to share with this blog.

a rainbow at night

The Killer in the Crowd

♪ “Who is the betrayer, who’s the killer in the crowd?
The one who creeps in corridors and doesn’t make a sound.” ♫

Something I never considered the IVIG might do was the one thing I’ve diligently avoided doing at all costs for the past two years: Wake my immune system from its compromised state of complacence. Because that, in turn, as has happened every single time over the past six years, would reactivate my latent bartonella infections.

But that’s exactly what it did.

Some of you may not remember my ordeal with this infection unless you’ve somehow been following my blog since the beginning, but this short post from January 2012 might help a little.

I realized a year later that my symptoms were re-emerging and my bloodwork showed increasing signs. From then on I did everything I could to not stimulate my immune system, especially avoiding antibiotics at all costs (i.e., in the event I caught something extra; because as we know this entire treatment-failure conundrum was caused by me being unable to tolerate antibiotics to treat the Lyme, bartonella, mycoplasma, etc.). Because of this, and thankfully so, it remained somewhat latent in contrast to how quickly it spread the first few times it was active. From past experience, I’d seen that activating my immune system in any way triggered it to attempt fighting infections wherever they existed, despite my immune system not having everything it needs to actually fight, or even being able to use what it does have, efficiently. I’d found out the hard way that to reactivate bartonella was to initiate my imminent decline: The first time this happened, I was bedbound within eight months; the next, within just four.

Well. All the symptoms that have occurred periodically since the bartonella relapsed, are once again emerging VERY reliably every 5-6 days (usually five, as is part of the reason bartonella “quintana” got its name). There are the frontal headaches; the unusual rashes and bumps on my feet, ankles, lower legs, and hands/fingers; the foot pain; the shin pain; chest pain; more arrhythmia; more anemia; the volatile moods that occur the worst on that 5th day, leading to rapid cycling between hopelessness, suicidal ideation, rage, paranoia, and anything else you can imagine, before fading as quickly as it arrived; the worse “brain fog” and neurological dysfunction; low-grade fevers; excruciating fatigue; worse dehydration… Unsurprisingly, its pattern started five days after my first infusion in October, and has continued ever since.

A part of me just cannot believe this is happening again. The other part of me has not experienced something so dangerous since practicing Buddhism, and is able to be objective enough to find it fascinating how a body reacts to infection.

The worst flares–the ones that scare me–happen right before my infusions, when my immunoglobulin levels are at their lowest. I get IVIG every four weeks, but at my current dose the effects only last three weeks… So the fourth week, my system has fallen back to its usual, immunodeficient state, which means I am at mercy of a potentially-fatal infection with little to give it pause.

I discussed this with my immunologist today and he has upped my dose. We’ll see with my next infusion if this new dose will last long enough to stretch the entire four weeks, but if not, we’ll try every three weeks. If that doesn’t work, then I’ll have to do it subcutaneously every week just to stay stable. :\ (I hope not; I don’t know if I could handle that, mentally.)

I felt so horrible the morning of my last infusion, I thought I might more likely end up in the emergency room than their office, and wasn’t even sure if I should go. But within two minutes of praying for guidance, my doctor’s office called me and told me to come in, come in immediately. So I did, and by that evening I was a different person. For one, I was hydrated, but I also no longer felt like I was being mauled by a bear from the inside out. The flare completely stopped.

For the first time in over two years, I feel like I have a chance to slow these diseases’ progressions. And after seeing how my body can now fight back after receiving an infusion containing the parts of my immune system I’ve never adequately been able to create on my own, I have hope that maybe I can be like everyone else who gets a bartonella infection, and just kill it off before it kills me. This can really only go one of two ways.

If I can continue getting IVIG reliably then maybe several months from now my new-and-improved immune system, thanks to literally thousands, upon thousands, upon thousands of donors, can finally overthrow bartonella (and maybe the other, less-rapidly-progressive bugs?), and I’ll never have to worry about it again. That’d be nice… Really nice. But if not, I know this is still my path.

I regret nothing.

a rainbow at night

There’s This Friend I Have…

National AIDS Memorial Grove in San Francisco © a rainbow at night

Update: This post has been featured on ProHealth: Thank you, Julie and Rich!


I make sure they take their medicine on time and I’ve helped them figure out what’s actually helpful so they won’t have to take any more than necessary. I’ve helped them find interesting pill cases to take off the mental stress of staring at a dozen pill bottles always by their bed, which I know they have to reach for multiple times a day. I listen to the extensive list of doctors everyone wants them to see, and help them figure out which appointments are really important and suggest they prioritize those above the rest. I’ve called and written for them so they can get any procedure possible done from home, so they won’t have to deal with the physical exhaustion of leaving the house “just” for uncomfortable treatments, or the mental burden of being surrounded by a medical establishment that has traumatized them over the years.

I’ve helped them find clothes that were of soft fabric to help with neuropathy; helped strategize their budget to find money for important purchases that make their life easier, like an overbed desk, a smartphone to stay connected to friends that only exist outside their city, and a stereo that uses bluetooth so they can listen to anything instantly using their phone as the remote. I’ve introduced them to mindfulness and stressed how important it is to take care of their inner world, almost more so than their outer body, because they can’t always control their circumstances, their disease, or natural physical changes, but they can always decide how to think about them.

I’ve helped them make extremely difficult decisions about their treatment and supported them endlessly in whatever they had to choose, trusting that only they know what’s right for them, and that no matter what, it will be the best for them and subsequently everyone around them, including me. I’ve shared with them any and all of my collective wisdom to help make their travels on this earth a little easier, hopefully none more difficult than they must be. And I’ve done all this and more because I love them and want their life to be the best possible. I’m already so proud of them, for things sometimes I wonder if they even realize.

I’m proud of them for getting out of bed whenever they have the option. I’m proud of them for not giving up on life after it turned out so drastically different from their plans. I’m proud of them for continuing to try new things whenever they have the capacity, and for acknowledging, accepting, and loving themselves whenever they DON’T have it. I’m proud of them for taking care of their body even though that can be a full-time job in itself, and they’re disabled. I’m proud of them for continuing to do the things they love, even though they had to learn to participate in new ways; I think that’s so amazing. I’m proud of them for reaching out to others even when not many reached out to them. And I’m very proud of them for letting go of the ones who never reached out to them, because I’ve seen that it left them more energy to spend on the people who truly cherish them. I’m proud of them for not settling for anything less than authenticity.

And once the time comes–because it will–for them to move forward to the next phase of their existence? Don’t be fooled by the media or even friends and family: They’re not losing any battle against disease. They’ll simply be finished here.

To paraphrase Eckhart Tolle: You don’t “have” a life, you ARE life. They are Life. I am Life. You are Life Itself, and you cannot lose something that you are. And the friend I mentioned, is myself.

a rainbow at night

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

Sisterhood of the World Bloggers Award

Thank you A Figment of Fitness for the nomination! I had no idea you were following me and wouldn’t have known had I not checked my Referrers sections–what a pleasant surprise!

sisterhoodoftheworldbloggersaward

Rules:
(01) Thank the blogger who nominated you and link back to their site.
(02) Put the award logo on your site.
(03) Answer the questions the tagger has given you.
(04) Nominate ten people, and
(05) Make up ten new questions for those people to answer.

My Questions

(1) What made your today most special? There are a thousand special moments in my day. When I take my first steps; when I drink organic fair trade coffee and think of all the people who harvested it for me to enjoy in that moment; when I drink it out of the cup I bought in San Francisco, an impossible yet fulfilled dream; when I take my pain management medication and know that I’ll soon have enough relief to actually live another day; when my dog, Muffin, and I see each other for the first time; when I hear the birds outside chirping; when I turn on my music and can forget that I’m sick; when I turn on my phone and see text messages from loved ones; et cetera. What made today even more special was being able to work on this website, at my leisure, without much suffering to distract me, and create a new blog post. Lately all of my energy has been spent toward coping with new challenges, and it hasn’t left me with anything remaining to actually do things I WANT to do.

(2) Why do you blog? What a wonderful question. This blog started because I felt I was talking too much about health problems on my personal journal. I needed to write it down somewhere, but the way I was doing it made it seem like that’s all I was: Someone with health problems. So I made this separate blog to keep up with my symptoms, treatment, and developing issues. I made it public, and a few friends followed, but I didn’t think many people would actually read it–now, every month people from over 45 countries visit my site, to my utter astonishment. Somewhere along the line I realized my way of thinking and writing was helping people, so now I feel like I have to keep that in the forefront of my focus, because with that also comes a responsibility to make your intentions clearly known, and not use words carelessly. Luckily, this is also a main part of being Buddhist, so they both teach me to be mindful. Now my blog is less about every new health development as it is how I feel about living with them and what I’m doing to continue enjoying life.

(3) What is one thing that you wish people understood about you? Maybe I used too many brain spoons on the first two questions, but, I don’t know…!

(4) What is on your desk right now? If you’re not at a desk, describe your surroundings. I’m using my overbed desk and all it has on it right now is the remote to this adjustable bed and my cellphone (face down, because no distraction). Oh, and the laptop!

(5) What is your favorite season? Describe how it makes you feel. AUTUMN!!!!! The weather makes me feel my best, symptom-wise, which is a major perk. Since it’s started, I’ve been able to drop 400mg off of my daily ibuprofen dosage and 3.25 off my percocet. I love the cool air; being able to keep my windows open even at night, and listening to the frogs and crickets; making a pallet on my porch to sit outside with my dog, a cup of coffee, and read, or listen to audiobooks, or draw zentangles, or just watch the leaves fall and enjoy the fresh air. Fall has always felt like the real beginning of the new year, to me. Plus, it is THE BEST season for theatre! The best dance performances, orchestras, and singers come to town.

(6) What do you do when it is o’dark-thirty and you are stressing so much you can’t sleep? I don’t. There’s no point in berating your body for not being able to fall asleep, or cursing the moment for not being what you want. It is what it is and your body will fall asleep when it’s able. Audiobooks almost always put me to sleep at some point, or at least help me enjoy that time.

(7) What is your obsession? Nothing really comes to mind! There’s a lot I’m passionate about and/or really enjoy–music, learning, reading, documentaries, dance (watching), but I can’t think of any one thing I’d call an obsession.

(8) When you are walking down the street, do you pick the street side or the building side of the sidewalk? …What?

(9) What is the town you live in like? It’s the halfway point between a large city and small town, part of a metropolis. Not enough people to drive you crazy, not small enough that major necessities like hospitals and doctors are missing. Outside friends who visit have told me that the people here are nice, but I’ve been around nicer, aha!

(10) What is your favorite quote? Oh, lord. I’ll just put a few that I like, because I have tons.

“When there is no enemy within, the enemies outside cannot hurt you.” (African Proverb)

“What would you be like if there was nobody else in the world. Who would you be if the only opinion that mattered was yours. Because if you want to be truly happy, you must be that person.” (An Englishman in New York)

“When a tiger, a powerful creature, forgets who he is, he will allow himself to be intimidated by a whip and a chair.” (Iyanla Vanzant)

“Never pretend to a love which you do not actually feel, for love is not ours to command.” (Alan Watts)

“Science is how God thinks.” (Deepak Chopra)


The Nominees


Your Questions:

(Just going to say this, now: I’m stealing some of the original questions–my brain is exhausted!)

  1. What made today special for you?
  2. Why do you blog?
  3. What is one thing you wish people understood about you?
  4. Which place that you’ve visited is your favourite?
  5. Do you have a phrase, mantra, or quote that gets you through those exceptionally-difficult days?
  6. What are you most proud of/feeling personally accomplished about?
  7. Do you have any creative outlets aside from writing?
  8. What are you doing/have you done to leave this world a better place?
  9. Do you enjoy documentaries?
  10. Is there a life tip you’d like to share?

a rainbow at night