There’s this friend I have…

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 (or IVIG) is a blood product made from thousands of donors to produce just a single dose, and used in the treatment of immunodeficiency and immune-mediated neurological disease, amongst other serious things.

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 and 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 had gotten some type of stubborn virus, began to worry, and decided I needed to make an 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. 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 nagging intuition that I should call back AGAIN and take the cancellation they 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–finally feel at ease.

I felt 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, because the grapefruit seed extract/olive leaf extract rinse I’d been using had–between making the appointment while in severe pain and the days before the appointment actually arrived–helped my tonsil to the point of there being no spots left. “Luckily” I didn’t. 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 M.E. is, but understands that it inflames my brain and causes progressive muscle weakness. He was knowledgable 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, that I’d never even mentioned IVIG to anyone, and no one had ever offered it to me. (If you’re not aware, there’s a certain supply of IVIG and they don’t just give it to anyone.) So, staring at my page-long medical history and at a loss of how to help me, he offered it to me!

So, 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, gotten approved 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 IVIG 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! And if I feel safe enough, they can even come do the infusions in my home!! Which, by the way? Is a method of infusion that my insurance had only begun approving three days before that appointment.

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 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. Frankly, since the severe pain has subsided, I’m content to let it work itself out, now! (With some grapefruit seed extract rinse, to help things along.)

My favourite part about this, besides the actual IVIG, is that I get fluids before and after each all-day infusion because of my chronic dehydration. And I get to do this once a month. Which means I get fluids once a month. I haven’t said anything here, but I’ve returned to needing fluids in the ER every few months. Some friends helped me discover coconut water in June, which has helped a lot–now I just come very close but can usually “save myself”–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. I finally see a new endocrinologist later this month to discuss treatment for what was in 2009 borderline adrenal insufficiency, which should help that even more.

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!

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

My loss of ability to write posts like I used to has really depressed me.

I have so many scattered thoughts written down–probably seven long posts worth, by now–that can progress no further than fragmented thoughts. I do write things, but they’re pretty much gibberish until I edit them, and the editing doesn’t go very far anymore. I can’t just open a window, switch topics in my brain and begin writing on a certain thing whenever I want. There’s a name for this ability–cognitive flexibility–and I lack it severely. That’s not a criticism of myself, it’s just the truth.

According to Wikipedia (they can’t mess THIS up, right?), the areas of the brain responsible for handling cognitive flexibility are:

“the prefrontal cortex (PFC), basal ganglia, anterior cingulate cortex (ACC), and posterior parietal cortex (PPC).”

I probably need look no further than the basal ganglia, which we all know is a problem area in M.E. (And I do have a pons lesion, possibly others granted I haven’t had an MRI in years, that could be complicating things.)

So, to adapt, I’ll have to start typing, editing, and posting in a different way. I’ll have to risk not presenting my “best self” because those days of my old best self are few and far between. Now there’s a new version of me! And she has lowered cognitive capabilities.

Luckily, because of my high intelligence BEFORE illness (and that isn’t a compliment of myself, but another fact–I didn’t choose my genes), maybe it won’t be as noticeable as I’m predicting.

Things may be repeated. Things may sound like something entirely different than what I’m actually trying to convey. Things may not flow as effortlessly as I was able to edit them to do in the past. Things most likely WILL be out-of-order, jump around, and clamber to connect to the main point. But this is me now, this is M.E., and Lyme, and whatever else is in my brain.

Let’s do this.

a rainbow at night

(P.S. – Coming soon: Guess who just got access to IVIG? And you’ll never guess how it happened…)