First off, a huge thank you to those who have expressed their support and gratitude of my recent writing… I was not expecting it. I have read your words and I want to reply as soon as I can. Right now I feel an update of sorts is in order. Forgive me while I use my spoons for expression, but know that I am actively awaiting the right words to respond to the support you have offered in my direction. :) You help me feel less alone, and on weekends like this one, I really need that…
At the beginning of May I wanted a mini-celebration of the fact that I’ve been off treatment six months and I am still walking okay. So what better a way to affirm my functioning feet than with new shoes!
This event was right before my monthly bug-flare, which still happens around the beginning of the month. I forgot about it this time, so it wasn’t until day three of being in bed that I realized why all these symptoms were happening.
I effectively went from walking “normally” in new shoes and eating at my favourite foodie joint, to being in bed four days, excessively sleeping through over half of it, and having seizure-like activity again.
Yesterday, I felt as if every inch of me was buzzing, vibrating from the inside-out. I tried to wash my face with sunscreen, use toilet paper as moisturizer, pour my milk into a sauce bowl instead of a cup, and made accidental purchases online. I found myself standing in places I didn’t have any memory of walking. Yes, I remember all of these symptoms.
But still it helps to know why it’s happening. Not only that, but I’ve noticed I’m typically worse on weekends, again…an ominous sign from my bartonella days, but a fact nonetheless.
My ego said, I would rather all this NOT occur immediately after I finish celebrating how relatively well I’m functioning after six months with no antibiotics! Why did you have to remind me, right now? Maybe I wanted to forget for a little while, just how much my body is going through, just how sick it is…
Another part of me is saddened at the reminder.
The other part of me, is thankful for it, that I don’t float away into denial, and hopes that I won’t also sink into despair…at least not for too long.
See, I go through the same emotions as everyone else. I don’t ever want to seem like I don’t. I don’t ever want to seem like the decisions I’ve made or the way I live is something unattainable.
I’ve been relatively doing so-so. I never imagined stopping treatment would have given me so much of these months back, these months that I would have otherwise spent in misery with no real benefit except more worsening. Instead, I have more good days right now, I’m determined to use them fully, and I can be mostly comfortable.
Symptom-wise, this has developed:
- I consistently see the squiggles, black dots, and smoke-fog illusions in my vision.
- My hands go numb more often, and various irritated nerves cause intermittent curling of my fingers.
- There is more numbness in my feet, and more of the old “fire foot” sensation.
- I have more heart palpitations and trouble staying hydrated.
- My left leg buckles more frequently.
- I get more spasms in my back.
- I get choked more easily.
I recently returned from two ER visits with a random virus…and just like after my last viral attack in December/January, my vasculitis is temporarily on hiatus. So for now I’ve been able to stop the daily ibuprofen which was keeping it in check, which I like, and yet this has resulted in more trigeminal neuralgia episodes and eye pain.
While the shot I had to attempt treating the occipital neuralgia didn’t go as intended–giving me odd side effects like falling backwards and an inability to recognize myself in the mirror, I suspect because of the brain lesion(s?)–it DID interrupt those signals, so it’s not as constant as it once was. There are still so many other types of pain, which was depressing to realize, but that one is better. Being on only half the pain medication that I was on before, this has unmasked many of the neuropathy symptoms I didn’t know were developing.
My favourite bit of news is that, I found out if I cover myself in sunscreen before being exposed to sunlight, the vasculitis doesn’t flare up. :) And as of my most recent echocardiogram, my heart function hasn’t worsened, so they don’t want to see me for another 18 months!
I’ve noticed I try to leave you all with something that’s helped me, recently. This time I offer you something for your friends and loved ones, and possibly as justification for your feelings, as well: The book, How to Be a Friend to a Friend Who’s Sick by Letty Cottin Pogrebin. It was mentioned on Facebook by the lovely Toni Bernhard, whose book How To Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers changed my life a couple of years back. Both of these are also available on Kindle and Audible, so pick your best function!
♥ a rainbow at night