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

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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:

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

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

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

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

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

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

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

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

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

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

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

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

How wrong I was.


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

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

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

a rainbow at night

My year so far, after choosing to truly Live.

Thoughtful

I’d like to start out this post with a bit of astrology, because I think it perfectly describes how my year has been thus far. (Bear with me!)

“Get ready to dig deeply in 2013, Leo. You’re going into a phase of complete and total metamorphosis. This will require considerable self-analysis and probing into your past patterns, but all the work will be more than worth it. You’re on the verge of discovering just how powerful, strong and resilient you are at your very core. If you have ever doubted your strength, after 2013 you’ll never question your resourcefulness again. Saturn, the great karmic lord of trials and tribulations, will be camping out at the base of your horoscope until 2015, so you’ll have plenty of time to delve into the depths. Family issues and psychological patterns inherited from your parents will come to the surface this year, making your more aware of — and able to avoid — negative patterns. Wake up, Leo! Get ready for a major rebirth.

Lucky Jupiter will continue to bring good fortune to your social sector and help you dream big until June. You’ve been so blessed with the amazing people you’ve met over the past year who have helped you reach your goals. The second half of the year, you may want to pull back when Jupiter enters your retreat zone. This is a time of dreaming and scheming before launching into the next chapter of your life in 2014. So the first half of the year will continue to be incredibly social, but give yourself permission to come back to a more internal and creative space during the latter part of 2013.

The eclipse patterns of 2013 will shake up both home and career sectors, so get ready for rapid advance and decline in both arenas. Don’t get too attached to any of the gains or losses in either of these life departments, as they will constantly be in flux until you reach a healthy middle ground — and you will!”

I was expecting such a popular site to conform to mainstream and just dish out stereotypical messages, but that right there sums up everything I’ve felt about this year, all the way down to the little details! In June, I even talked to my friend about finally becoming settled and just resting starting in July–after the busy first half of the year, it’s what I want, now–and even THAT is in there! Incredible. I encourage you to click and see if yours applies as much as mine does!

Lion representing the Leo sign in astrology. (...

So, if you’ve been following my journey through the year so far, you’ll know I stopped treatment for late stage Lyme disease in October of 2012. After several months of grieving, I decided I was going to truly live, because I don’t have time to wait anymore for a better day when I might feel better. I also have Myalgic encephalomyelitis, for which there is no cure, and bartonellosis, which was once cured but now has crept back out of remission. I’ve been focusing on symptom management and taking care of myself as best I can with food and whatever “exercise” I’m able to handle. Because of the incredible planning skills I’ve accumulated over the past thirteen years of chronic illness, but most importantly, proper pain management, I’ve been able to put all my spoons in one basket each month, and have incredible adventures. I attempted them even at the risk of symptom progression because realistically speaking, there will be no better time than right now. The past six months have been my surge of energy that comes from stopping toxic treatments, and I used it well.

Life is a precious gift. Don't waste it being ...
Life is a precious gift. Don’t waste it being unhappy, dissatisfied, or anything else you can be (Photo credit: @Doug88888)

In January, I met my extended family for the first time (yep). February was pretty rough and scary, after having to be on antibiotics for a week to get my teeth cleaned, finding out I had a new genetic diagnosis, the passing of a friend, and the one year anniversary of the passing of my Dad. So most of it was spent in recovery. But I did celebrate Valentine’s, Mardi gras, and a friend’s birthday to the best of my ability. In March, a good friend came to stay with me for a month, and we had innumerable outings to parks, new restaurants, coffee shops, and a beautiful experience at the orchestra. In April I went to see a world renown ballet group (my first trip to such an event in at least twelve years), sitting front row balcony because a wonderful family miraculously had a spare seat; they turned out to be the same family who was sitting behind me the night I went to see the orchestra in March! I also met two amazing local friends with whom I had several lovely visits.

In May, I went with a friend from Florida to see the Dalai Lama, and as if that weren’t enough, perused my favourite city on a vibrant Saturday night, admiring the culture and appreciating everything; I watched the sun set from the top of a seventeen-story building. My family hosted a garage sale for me and I got rid of 90% of my stuff. I went to the aquarium for the first time in seven years, with friends I haven’t seen in eight years, and some new friends. In June I went BACK to the aquarium with my family, which, if you knew how rare it was for all of us to be free at the same time, you’d understand to be something of a miracle. Then my best friend came from across the country to visit with me for a week; several times we stayed up til 5am giggling at nonsense like we were teenagers. I witnessed the historic removal of DOMA and Prop 8 from our country’s legislation. I planted sunflowers. I received a message from my all-time favourite musician via Twitter. And I rediscovered my love of electronic music.

As I said, in July I began resting, but something incredible happened, still. The love of my life, the best friend who stayed with me in June, told me she loved me, and since I’ve also been in love with her for the past year, we became a couple. ❤

Even still, each month I successfully set out to watch one new movie in theatres, “read” one new audiobook, and eat at one new restaurant. For now, I take a much-needed break, as my body tries to hold itself together after all that activity. But in August I’m going back to the heart of New Orleans for a week for my birthday, to stay with another friend who is also coming cross-country. And in September I get to spend more time with my girlfriend as we arrange another, longer visit. After that, who knows…

But I’ve been divinely assisted in everything I’ve set out to do, and whether this year turns out to be my last truly being able to function, or just a temporary rut (however doubtful that seems), I can go forward knowing I gave it my all while I still had the chance. I know without a shadow of a doubt that I made the right decision to stop treatment and focus on having a life.

I have more to say, how symptoms are going, what happened with the doctor who wanted to erradicate some of my nerve endings… But that’s for another post. To be continued…?

a rainbow at night

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

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


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

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

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

Click to read more on Amazon.com

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

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

Speaking of which, on to my next resolution.

 

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

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

 

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

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

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

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

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

 

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

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

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

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

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

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

a rainbow at night

Relapse Journey: Is Choosing Treatment Still Choosing Life?

Here, let me type this so you all won’t think I live in a happy-land bubble. (That’s not really why I’m typing this, but it’ll probably confirm it unintentionally.)

This relapse has sent me on quite a ride, physically and emotionally. I did need to take the full two weeks off of treatment, and I’ve only been back on treatment one week before hitting the point of “why am I doing this,” because I’m still relapsed, feel like hell, and I can’t handle this. I’m generally better than I was during the initial crash, but I haven’t bounced back from that point, yet. And the pain…

I have been on twice my usual pain medications, every day, for almost the entire past three weeks. I think there was maybe one day I was okay without anything (and I really wish I knew how it happened!). This has mostly resulted in me subjecting myself to psychological torment over needing them. I used to be able to take breaks from ibuprofen, for the well-being of my stomach; now I cannot. I used to be able to take Lortab (vicodin, as most people know it) once or twice a week to get through the worst of things; now the pain is so bad I cannot function without taking it daily.

Even typing that–that I can’t function without painkillers right now–makes me feel guilty!

In my head, all I hear are family members who took them, who REALLY DIDN’T need them and therefore think no one else actually does, either; other spoonies who have said incomprehensible things like “this suffering is unbearable but I ‘don’t believe in’ taking pain medication”; and society saying that anyone who takes Vicodin is probably one step away from being House, MD during one of the really bad rehab episodes. So yes, cue the shame over needing something to make it through the day, when I previously could just tough it out.

I’ve done a lot of thinking about this, dissecting it from various angles… It’s like I feel I am somehow responsible for needing it, as if I did something to make this happen instead of realizing my body is severely ill. Well…

My favourite quote is the African proverb,

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

Which translates to: Someone’s ill-conceived judgement of you is not going to hurt you unless you actually believe what they say to be true. I even wrote it on my mirror in dry erase marker a few months ago, to remind me of it. This helped me realize that it wasn’t what I thought everyone else was thinking that bothered me–it was actually what I was thinking about myself. I was the one condemning me, not anyone else.

The people who love me were actually very glad I had adequate pain relief! It was (is) the only way they’ve gotten to see or hear from me at all the past three weeks!

It all boils down to a loss of control, I think.

  • Maybe I’m just not ready to accept that I’m still under the effects of this relapse and haven’t bounced back from it yet.

  • Maybe I’m scared my disease is worsening or my Lyme treatment isn’t working or has done all that it can do.

  • Maybe I’m uneasy because I’ve never been dependent on a controlled substance before.

  • Maybe I’m not ready to accept that I’m a chronic pain patient again.

  • Maybe it reminds me that things WILL eventually get worse.

  • Maybe I’m scared that there is no turning back from this point (even though there probably is).

These are the ways relapsing makes you feel. I’m frustrated over my Lyme treatment, and all these medicines, and I’m just.. so tired of all this. I’m so tired of this fight to prolong my life.

Sometimes I just want to stop taking everything and see how far I make it. But I also feel that’d be almost the same as suicide.

I just think, Well, if I’m going to keep going downhill, at least let me not fight/make it happen even quicker; it’d be better to enjoy what I still have than waste what’s left on a battle I can’t win. My doctor once told me that, even. If the treatment is as bad as the disease itself, to weigh my options. Treatment for chronic Lyme disease is like chemotherapy for cancer; don’t let anyone tell you differently. And even if you get relatively symptom-free, it can always come back. My old bartonella infection could always come back, even.

So for now, I’m returning to once-a-day Biaxin for the Lyme disease and Mycoplasma treatment. It’s either I go back to that, or I stop treatment completely. I’m emotionally worn out from getting better and then relapsing, with each event being worse than the one before it. (Quite a predicament to be in when my subset of myalgic encephalomyelitis is relapse-remitting–that’s pretty much all that my future holds!)


This might all seem like a 180 from my last post, but it’s not. Maybe I had to express how grateful I am to be alive, so I wouldn’t think this (what I’m feeling) was because I wasn’t… Because I am grateful, and all of this isn’t because I’m not.

My being thankful to be alive and also tired of fighting are not mutually exclusive.

I am so happy to still be here, to have all these things that help me, and people who love me… And sometimes, I just want that to be enough. Sometimes, I just want to embrace my accommodations, enjoy what I have, what life I have left, and live out the rest of my days in as much peace as possible, without the fighting to stay alive part every day, without the medications that are keeping one disease from progressing but which may be setting me up for worser things in the future.

The choice is ultimately mine, I know.

I don’t often say this, and it might be a bit crude, but I should get an award for not offing myself yet. I have friends with this disease who have tried, and friends who have succeeded, and I don’t blame them at all. No, I don’t blame them at all, in the face of a disease that takes you oh-so-slowly. To hold on when there is little hope of a cure, and you know what you’ll face later on: that is a true survivor, no matter what the disease does to you.

Well, actually, I did get an award; a blog award, and I’ll talk about that… In my next post. Along with some facts about the me, the person behind the blog.


For others going through a relapse right now, I offer you this:

What is a relapse?
It is an unexpected deterioration in the condition of a sick person after partial recovery.

Conclusion: A little Allegory
Imagine, if you can, a tranquil English breakfast table. The kettle steams, the electric toaster is in action, but someone forgets to adjust the thermostat. Suddenly the smoke alarm shrills from above and is wrenched from its socket before upsetting the neighbours.

Despite our wonderful self-regulating kitchen gadgetry, all is in chaos! In future, pay careful attention to your body’s thermostat, your daily variation in energy and activity and remain grateful for the commotion set up by your immunological stress alarm if it prevents another set-back. Good luck!

http://www.tymestrust.org/pdfs/nosmoke.pdf

a rainbow at night

Attention: I’m not suicidal.

Unpopular Opinion? The Taboo of Gratitude Within Chronic Illness Communities

[ estimated reading time: 5 minutes 23 seconds ]
I don’t know why this is an unpopular opinion, but it is:

I feel blessed to live in a country where I can obtain so many accomodations to offset the effects of my disease.

If I were in many other places, or a third world country, I would have died within a few months of getting sick; there would have been no chance for me. Obviously that wasn’t the journey I was meant to take, it would not have given me the lessons I was meant to learn, so here I am.

Things are not perfect, but it is a wonderful thing that we do have support systems in place for people in my situation, regardless of how many politicians call us malingerers or how many bitter people try to loop everyone on social security/welfare into one big “something for nothing” group.

All these things–social security, medications, things like laptops that help us connect to others in a housebound state, and things like wheelchairs and adjustable beds and home IV therapy–give us a chance at life that many before us never had. (Hell, when I was growing up we had to endure illness without the invention of the internet! Can you imagine? Haha.)

This thinking I’m doing comes from a frame of mind that doesn’t expect other people to owe us anything. It comes from pondering Buddhist philosophies which seek to be realistic, accept What Is, and not live life in a constant state of wanting. Because that’s certainly not the mindframe of most here in the West. It comes from thinking that we are worthy of love and joy and peace simply because we exist, but hey, suffering also exists: as a fact of life, not a punishment.

Yes I am upset at the discrimination of the now-infamous “47%”; yes I think it’s our responsibility as human beings to try and care for one another and get help to those who need it; yes I think it’s our responsibility to speak out against injustice, when we have so many means to help people, and those in places of power are not cooperating. I’m not suggesting we simply turn up our noses, say “it is what it is” and not try to change it.

But while you’re waiting for things to change, you have to accept the way things currently are; you have to become aware of what you already have, and realize how fortunate you are to even have that.

It is amazing that you have methods to help manage your illness: Medicine to help ease your pain; soft beds to lie in; the right food to eat; indoor temperature control, which is an often overlooked accomodation. Many in developed countries, I think, forget that the majority of the world does not have these things to the exceeding surplus that we do. If you have something that the majority of the world does not, you are blessed.

I cannot forget that if I were somewhere else without these accommodations, I would perish. My daily life makes that uncomfortably apparent.

Of course it is disappointing when there exists external items to help you even further, that were created for the purpose of helping–like money, certain foods, medical treatments–and for whatever reason, you don’t have access to them. All the time, I see people with myalgic encephalomyelitis with no hope of getting better because research for our disease is not being funded (though the FDA did recently vow to find medications to treat both CFS and M.E.–not “ME/CFS,” but both separate, distinct conditions). All the time I see people with chronic Lyme disease and its related co-infections trying to raise their own funds for their treatment and cure, because our government does not currently believe we even exist and getting the proper medications can be impossible. And I see people who are disabled and who should be able to receive benefits to live on so that they won’t become homeless, but who are not getting them due to flaws in the system. Things are not perfect.

But what about what you do have? What about the things that help you face the day, without which you’d have been gone long ago? Does it truly not matter that those things have helped you stay alive up until this point?

Sometimes when I am grieving the things I’m “lacking” but “should” have, at some point I try to practice gratitude for those that do have them. I.e. I try to be happy for those whose test results and various means of funding enabled them to get the PICC lines and ports and hyperbaric oxygen therapy and infusions. And somewhere out there is a person who cannot get any antibiotics, who wishes they had the medication I do; a person who wishes they had a doctor who believed them, like I have; who wishes they had adequate pain management; had funding to get daily living accommodations; friends who were there for them; family who supported them…

I’m still going to be extremely disgruntled when my head feels like it’d be better off removed than attached to me.

I’m still going to feel like crying when I hear another child with M.E. has been forced into a mental asylum because their doctors do not understand the harm they’re inflicting.

I’m still going to be bothered by the fact that I will never be able to get IV antibiotics with my test results, just because my immune system functions too poorly to make those tests show enough positive antibodies.

Again, I am not saying we are to be emotionless zombies without a reaction to anything. I was honestly scared to post this. I feel like, if absorbed in the wrong way, it will seem like I’m saying, “You’re lucky to get what you get, so shut up,” and that is not my intention. I also don’t want to type this and make it seem like I live in a fantasy world where nothing bothers me. I’m trying my best to improve my state of being through whatever means available, just like the next person, even if often my body cannot cooperate yet.

I just find it better to guide our thoughts into gratitude instead of dedicating our limited, precious time and precious energy to all the things we don’t have; self-compassion is better than self-pity.

I find it better to realize that having anything to help us through disease is a miracle, because we are not, in fact, entitled to it, but blessed that we got sick in a place where anything at all could be done for us.

I just find it better to live in gratitude.

a rainbow at night

(Postscript: I know I’m not entirely responsible for how people perceive my writing, but I do hope I’ve framed this enough in the way of, “You are lucky to get what you get, and I think it’s best to focus on that while you try to get whatever else you need.”)

I am not my body.

digital painting by a rainbow at night, based off the original photography of Heather Bybee

And yet, I am.

I am not my body because I am not the sickness, the weakness, the pain, or systemic dysfunction that prevents me from doing what I attempt on any given day. I am not my body’s shortcomings. I am not what my disease does, whether physical or mental, and I will not feel guilty because my body is sick. It is not my fault that it cannot function like that of the next able-bodied individual.

But I am my body because this is the vessel through which Life is expressing itself, and we have one very important thing in common:

No matter what is going on, it always functions to the best of its ability. Each and every moment it aims to support and accommodate me in all that I–and disease–attempt to do. You’re never going to wake up one morning and have it go, “No, don’t feel like giving my all today, sorry.” It may feel like it sometimes, but it never slacks off. It’s always calculating priorities and options and will always do everything within its power to run as smoothly as is possible for the situation.

“Your body didn’t betray you. It just compensated and compensated until it couldn’t anymore.” *

Have truer words been spoken?

This morning I woke up with a rash on my neck; it’s always been a telltale sign that my immune system is strained. My first instinct was to berate my immune system for not working properly–don’t I go through enough?–but wait a minute…

Did it purposely fail me? Did it not try hard enough to function properly? Did it just get lazy and decide to rash me up? No, not at all. It’s actually trying its best to support me.

Sometimes what our body is able to do isn’t enough to give us the outcome we desire. Sometimes it might even attack itself out of confusion, causing us more suffering. But our body–like you and I–will always do what’s perceived to be right, will constantly accommodate changing circumstances, and always aims to do the very best.

Repeat after me:

My body is doing the best it can to support me.
My body is doing what it thinks is right.
My body is not my enemy.

:)

a rainbow at night

* This profound statement was shared by the doctor of one of our fellow Lymies.

Migraines and Caffeine and Surprises, Oh Yes!

I’m pushing it by typing this, but I just can’t help it. I will rest extra tomorrow to make up for it.

I’m excited. There are flowers in my room and I’ve realized they make me very, very happy. Today while lying in bed, I looked around and just admired how incredibly gorgeous my surrounding are, and allowed myself to feel gratitude for it. This is what I wanted, after all–a place to feel peaceful. The weather was wonderful and I looked out of my open window.


That headache I got the other day was a migraine. It kept going away and coming back, so it had me confused, and it didn’t respond to Treximet, which had me more confused. But today, not wanting to take another Treximet because of how awful they make me feel–numbness and dizziness and generally an awakening of all those weird symptoms I get during my autonomic neuropathy “episodes”–I chose to take a risk. I’ve been able to handle some caffeine for a while now, and recently I’ve pushed the boundaries further with no ill results. So I took an Excedrin Migraine, the one thing I’ve used to control my migraines for the past thirteen years. Some may or may not remember the insane reaction I developed to caffeine, but today, nothing happened. Oh, except my migraine going away, that is! I didn’t get any of those dreaded symptoms! I feel I am finally free and healed of whatever occured in my body/brain that made caffeine such a trigger for the past nine months. And I am elated!

Caffeine is a drug, and one that helps me do far more than just stay awake. I can stay awake on my own. But now I can use it to stand up in the mornings, earlier than the two hours I usually need beforehand to avoid passing out. Now I can use it to help me digest food if I begin experiencing post-prandial hypotension. Now I can use it to get rid of my migraines. Now I can use it to help my brain in general! I mean, look at me, typing these entries!

But I am not going to start taking it everyday. Nor am I going to allow it to mask my symptoms so that I overexert, which is dangerous. I’ll probably mess up a few times–not being used to differentiating, after not using it for so long–but that’s all right. I will figure it out!

With that in mind, I shall close this entry, but I wanted to post about this wonderful news. :)

 

a rainbow at night

(P.S. – Oh! And I have a surprise for December!)

Still Waiting for the Symptom Limbo to Cycle Out

Times like this when I wonder if my treatment has stalled out, or if I’m just being impatient.

I think the breathing episodes from yesterday could have been the result of redirected blood flow to my intestines, even though I didn’t eat a lot. I had a small episode of breathlessness about two hours after last night’s Rifampin, and again two hours after today’s. The culprit was dysautonomia, which has been getting more irritable since this last Lyme flare started, as I mentioned here in reference to the numbness rearing up again. After the digestion stopped, things went back to normal again. I can’t say for sure that’s what happened for three hours yesterday, but it’s worthy of note, regardless. My limbs went numb, and I had physical symptoms of anxiety without the mental anxiety; typical of “the episodes.” It’s like I’m herxing worse, for some strange reason.

Today I’ve been in another limbo. The entire day has been a back-and-forth of “I feel okay” to “I feel horrible.” I wish it would just pick one so I know how to react. This instability is maddening. Right now I’m in one of the bad parts, and my evening headache has arrived so I’m on more Lortab. I need to add ibuprofen because the other one alone does not relieve inflammation and therefore doesn’t do much. My eyes hurt and are sensitive. My neck hurts. It’s been hurting a lot recently, actually. It now pains me to look downward, and I can’t past a certain point, which I noticed today. I halfway wonder if I’m dealing with subclinical meningitis. I mean, if it can happen in syphilis (A chronic subclinical meningitis (meningismus) is sometimes associated with syphilis)… There’s no telling what goes on inside you when you have at least three infections in your brain and spinal cord. (Ironically, the next few lines after that quote talk about offering Rifampin as a treatment. The book is about the hidden connection of AIDS and syphilis; in modern days, we’re dealing with another retrovirus + spirochete combination, with XMRV and Lyme.)

It feels like I go through stages with the headaches, as well? Honestly, the strange patterns these diseases take. I go through a spell where I barely have any headaches, and then I go through a few weeks where I get them daily. And back and forth.

You know what I don’t feel the need to do anymore? To say I’m thankful. To remind people that even though I’m frustrated, I do appreciate the things I have. I used to care too much of what people thought, that if I took a moment to explain why I was distraught, someone might take that the wrong way and act like one of my doctors or ill-advised family members, responding with, “You just need a better attitude! Think of the positive!” Well, I no longer feel the need to explain that I always do that, even on the days that I’m frustrated. If I can gain any lesson from days like this, I’ll take that one.

a rainbow at night