Week 33 of this blog
Week 126 of this situation
Weight: 49,5 kg / 109 lbs.
Last fall: 21 days ago

I found “my” meditation practice: Kundalini Yoga. I discovered this a while ago and liked it and did a daily meditation for a while but… then I stopped (I don’t remember why) and I didn’t take it up again. But last weekend I met the most amazing Kundalini Yoga teacher and she touched my heart and inspired me so much, I’m still kind of speechless about it. And I have recommitted too my Kundalini meditation practice, heart and soul, and I’ve been doing it every day and will continue to do so – forever! And I so needed that and needed it now because I’m having to make decisions about treatment options and that’s always difficult because… Well, there is no treatment that’s known to work, so I just have to decide what feels right for me for now and what I put my faith in and then live with that decision. And the alternative / holistic / naturopathic treatment options I’m looking into usually take time, so once I’ve made my decision I have to be patient and stick with it for a while to see if it works. And in the past two and half years nothing has, really. And it’s getting harder and harder to stay positive and patient as the disease progresses. Having a daily meditation practice is so helpful for making decisions and staying in touch with myself and staying patient and positive.
I finally received my Ayurveda herbs and will start taking them, six times a day on a pretty strict schedule for at least three months. That still feels like the right thing to do, despite other treatment options that have come up. And I will cut down on my other vitamin and mineral supplement intake. And my weird grain intolerance has cleared up, so I can resume my Ayurveda diet. Yay!

So, I’ve been having a really good time mentally and emotionally… Physically not so much but it’s okay.

Some thoughts going around in my head: I’m still me. Who am I?
About a year ago someone told me that ALS is sometimes called “the great reducer”. Makes perfect sense. And at the time I was very much in fighting mode, thinking: “This shall not reduce me!” (spoken in a Gandalf voice in the first Lord of the Rings movie when he fights that fire thing… never mind). I really thought if I only fought enough, moved enough, I would get better. Didn’t work. A few months ago someone else used the word “reduce” in this context but he said: “ALS reduces you to your essence”. Sounds different, doesn’t it? I’ve been thinking about that a lot. Had I been asked to describe myself a few years ago, the words “movement” and “talking” would have definitely come up. And those things are being taken away from me and yet I feel very much like me still. And I think all of my friends would agree that I’m still me. So… Who am I? I don’t have an answer yet. It’s okay to share unfinished thoughts, right? For now, I just like to focus on the feeling that I’m still me. That seems important. And I can’t get this Dr. Seuss quote out of my head:
“Today you are You, that is truer than true. There is no one alive who is Youer than You.”
― Dr. Seuss, Happy Birthday to You!

So, on that note, love, light and good night!

Today was a good day. So I wanted to write about it really quickly before something happens that gets me down.
Today was a good day. Not surprisingly, this had nothing to do with what I did but rather how I felt. Calm. Peaceful. Like I’m in the right place. And I’m so grateful for the people in my life (in no particular order): the amazing health practitioners who work with me, my family and my friends.
And now I’m going to bed, at 11 PM, not bad at all. I’ve had my good-night-tea, I will take my herbal Calmvalera drops, put some lavender on my pillow and turn off all the electronics in my room. Good night!
Health, happiness and love!

Week 31 of this blog
Week 124 of this situation
Weight: 49,5 kg / 109 lbs.
Last fall: 7 days ago & 17 days ago
Did my Physical Therapy / Occupational Therapy exercises: I don’t want to talk about it…

So, I felt like my last two blog posts where kind of… whiny… negative… I didn’t feel like writing another blog post like that. So I skipped a few because the last three weeks were hard. Still. I don’t want to talk about it too much, you can see it above: I fell twice (basically, every time I thought I had turned a corner and things were getting better) and I lost some weight.
Actually, I do want to talk about the weight: I was nauseous for about two weeks and what I first thought was a sensitivity to gluten turned out to be a sensitivity to all grains and nuts. My bioresonance practitioner figured it out and the nausea stopped pretty much the day I stopped eating grains and nuts. Crazy stuff. We don’t really know why this happened, it’s not an allergy but rather a developed sensitivity. The good news is that it can be treated with bioresonance and by the end of next week it should all be over and I should be able to eat normally again.  But that new challenge has obviously made it difficult to keep or increase my weight and I’m actually very pleased that I have been able to hang on to 49.5 kg. Doing the best I can.

I also wanted to share some thoughts about… I don’t know, just what’s going on in my head that’s not connected to the chronological day-to-day reality of living with this disease. So, here goes:

Head and heart realization: I’m really sick.
There were a few instances in the past 2 1/2 years when my head and my heart were not on the same page. My head tends to be pretty quick – I used to think that’s a good thing, I’m not so sure anymore. I’ve come to appreciate the time my heart takes to come to a conclusion and how important it is to respect that.
For example, my head knew within a week of my diagnosis that I would have to let go of my Pilates studio, that it was too much, it was taking my energy and not giving me energy. It took my heart another year and a half to understand that. I am so glad that I gave myself that time until it felt right, head and heart, to sell the studio. And at that point it was the most civilized and friendliest sale of a business ever! And still a very painful process but I can’t imagine what it would’ve been like had I forced myself to make this decision too fast.
Like I did with my tooth: in previous blog posts I’ve talked about my dental adventure, which started with having a tooth pulled. It was clear in my head: it was the last tooth in the back and it had a root canal and a partial gold crown which likely contained palladium which I am allergic to. A dead tooth. But… my heart wasn’t ready to let go. I strongly felt that as the dental surgeon was yanking away and afterwards on top of the discomfort of having a tooth pulled, I was really sad. And I wondered, was it that important to have the tooth pulled right there and then? I still understand, why I did it and it makes perfect sense – to my head. My heart has caught up now, too, but I think it could’ve been easier.
A few weeks ago, I don’t remember the exact moment but I think it was just before I became depressed, I had a rare simultaneous head and heart realization: I’m really sick. I know it sounds weird that it would’ve taken me this long to realize that, given that my diagnosis was two and a half years ago and I’ve been seriously limited for quite some time. But until a few weeks ago I thought of myself as still me (I am. Am I?) with some movement restrictions… It’s much more than that: it’s paralysis and spasticity and trouble speaking and an uncontrollable smile on my face and weight loss and weird food sensitivities and exhaustion and trouble sleeping. This is a full-body serious disease and I have it. And it sucks. But I think this realization was a good thing. It’s a new level of acceptance and now I can move on.

PS: It’s 1:30 AM, let’s see if I can get some sleep.