i am back!

With the first breath of Spring I am back!
I have wanted to write on this blog again and again, but there was always a reason for postponement, chiefly my health (more on that later) and, of course, my laziness. Well, no more.
More on being Alive with MS and eating for health is coming.

See you soon!

quest for perfect burger: birthday burgers

I love burgers! And I shouldn’t (I haven’t made the full switch yet) eat meat. Sounds like a challenge. Interesting, tasty challenge.

I would like to invite you on this journey with me. I want to deconstruct the burger to its components and try to find the best vegan versions. Bun, patty, sauces, condiments…and everything that makes burger a burger.
My first step on this journey was my birthday party yesterday. For few weeks I was dying to try this burger recipe from Chef Chloe:

You will find the detailed recipe in the video description. Here are my deviations from the recipe:
* Much less garlic. I made the sauce in two batches and only that saved me an my friends from having a sauce with single taste – GARLIC. It’s either my taste buds, or the garlic here is more powerful, than its american counterpart.
* Forgot to drain the tofu, that went into the first batch, so the sauce was not thick enough for my taste.
* No dill (I don’t like its taste).
* I haven’t had pickle relish, so I used pickled gherkins which I shredded and squeezed the water out of them.
* I’ve added few splashes of liquid smoke. Not enough to make the patties smoke-flavored, but just enough to add a little bit of zing.
* One layer burgers.

Other that that, I’ve followed the recipe to the letter.

And here is, how it looked like (apologies for poor photo quality):

Do you like burgers? What are your experiences with vegan burgers? Any suggestions, tips, thoughts? Leave a reply in comnts or send me an email. I would like to hear from you.

2nd round of corticosteroids: Day 3

Wednesday (14.5.)

The day of the last drip brought few insights and realizations.

walking & balance
Yesterday’s staying up late, drinking and cigarettes took some toll on the recovery (reducing inflammations). Walking was not good as the day before. It was still very good, I did not need my walking stick nor did I had to use handrails while walking up and down the stairs. Overall, walking and balance were much much better, that before the drips.

Was still markedly better, than before, but I had felt no improvement over Tuesday.

right thigh
No change here.

One important thing that I’ve completely forgotten to mention here. Since the start of my MS symptoms, I’ve had minor problems with my eyesight. Mostly it is the inability to focus on things, that are close in front of me (cell phone, book, etc.).
The steroids have fixed most of this and I hardly ever note anything being out of order.

smoking cessation
No progress, smoked like a Turk. And I blame smoking and putting a heavy load on my lungs for the stop and even tiny reversal of my symptoms.

I am planning to write a wrap up summarising this round of corticosteroids. There is a lot to write about.

2nd round of corticosteroids: Day 2

Tuesday (13.5.)

walking & balance
This day was the best in months! Immediately after waking up I had realized, that my balance is better than the day before. On my way out, the stairs were once again easy. Not once did I touch the handrail (after months!). Outside, I had quickly discarded the cane to my left hand and had not used it once the whole day.
After the I.V. all had only improved. While waiting for my bus I could stand, without leaning on anything for better balance. I could just stand without constantly tilting to various directions.
In the evening I went for my violin lesson and then went for a couple of beers with my teacher. I was worried, that I would have to use the stick on my way home, but, even being little drunk had not worsen my ability to walk or to climb stairs.

Even better than Monday. I think only a speech therapist, or someone who knows me for quite some time could have picked up any impediment. Even after the beers in the evening, my speech was virtually the same.

right thigh
Virtually the same as the day before. Hardly anything noticeable.

smoking cessation
My stumbling block. I’ve used the e-cigarette only a little, and kept inhaling the vapors. And I’ve I smoked a bunch of cigarette throughout the day and a lot with the beers in the evening.

2nd round of corticosteroids + Day 1

Last Wednesday I had a check-up with my neurologist. Variety of the symptoms I have, most of them slowly worsening over time, were ruled to be normal part of the disease. But, because I had a new one (reduced sensitivity to touch on part of my right thigh) and it is present for continuously for more than a month, my neurologist decided, that I have an attack (relapse) of my MS. And prescribed treatment with corticosteroids. Total of three I.V. drips spread over three days and pills after that.
I wanted to stop smoking before that, to help lessen the inflammations in the body and add to the effect of the drugs, but…well…I’ve failed. But, nevertheless, I got the first drip today and here are the results:

walking & balance
After leaving the clinic I’ve observed a marked improvement. I was less clumsy, I walked without my walking stick, could stand without constantly getting off balance. I would say, I may have had about 70% to 80% of the mobility I had before the illness (except for the ability to run).
Throughout the day this worsened, but in the end was markedly better, that before the treatment.

The usual sluggishness of my speech was nearly nonexistent throughout the day. Normally I have reduced control over my tongue, so I have to speak slowly, my diction sounds a bit awkward and I make pronunciation mistakes quite often. Sometimes I make the impression as if I am drunk. It was remarked by my mother, who I spoke with over Skype that once again I am speaking quite swiftly.

right thigh
The symptom described earlier vanished, but for some minimal tingling of the skin.

smoking cessation
I bought new e-cigarette vaporizer and made an e-liquid with pleasant taste and very high nicotine content. The idea is to get nicoting without inhaling anything to the lugs, just the oral cavity. We will see, if it works.

small dreams

I’ve always dreamt big.
Living in my own castle, people colonizing Mars, bathing in a bathtub filled with gold (both figuratively and literally), and much more.
The disease has changed me. I still dream big, but I’ve found the beauty of small dreams. Simple things, simple joys of life, whose value I had not seen, when they were possible and accessible.
Biggest of my small dreams are to be able to run again and to dance.

For the most of my life I have been overweight. I’ve always avoided exercise and sport. Even when walking through the city I was subconsciously I choosing a path, that sloped minimally.
Last summer I had sprained my right leg. Was unable to walk for a few days, had a lath for some time and been at home for a month, with only a few short walks to buy groceries and back home. I don’t remember ever running this autumn. In winter my balance was already shaggy and shortly after Christmas I’ve started to use a walking stick.
I’ve missed many trams and buses, just because running, even for a very sort distance, is just not physically possible for me. My knees are weak and my balance is limited.
Never in my life did I want to sprint so badly. To be fast. To feel the wind in my hair. To sweat from running.
I dream, that one day I will sprint

I’ve always loved music, but as I grew older I’ve been shutting the door to that world more and more. I was shy to sing and even more to dance. I wanted to dance, but never allowed myself to, out of fear of looking stupid and being out of rhythm.
Now I see and understand just how silly is to not fulfill your dreams out of fear of looking stupid. Because of completely absurd fear.
I have never learned to dance, but I am dead certain, that when day comes, when my legs are strong again and my sense of balance good enough, the first thing I am going to do is to start learning tango argentino. The pure passion on the dance floor.

I will run and I will sprint. I will dance. Tango. Salsa and bachata. Samba and rumba. Lambada. Walz. And charleston. And everything. I will dance till I drop.
And I’m not saying IF. Why? Here is the answer:

small pleasures: massage & barber

I took a day off from work and went home for few days. Sun is shining, the day is beautiful…ideal time for some small pleasures.

First I went to my friend Robert for a leg massage. Robo is not only a perfect masseur, but also a friend, who is extremely enjoyable to spend time with. The massage brings a wonderful relief to my (always tired) legs and the fun we always have brings bursts of laughter for the whole time I’m in his company. The massage always ends after an hour, but the joie de vivre does not.

Some time ago I’ve read somewhere, that a barber shop has opened in Bratislava. A real, manly barber shop for gentlemen. A dream come true for me. Since I’ve learned to read, Sherlock Holmes has been like a friend to me. And I was drawn to things, that I’d associated with him. Smoking pipes, walking sticks, nice old-style clothing, straight razor shaving and many others. I’ve never bought a straight razor myself, but dreamt about one, long before I’ve started to shave.

The visit to the shop was wonderful. First a cigarette with my barber and a talk about what beard style I wanted. Then the chair. THE CHAIR. Different, than any other I’ve sat in before. Designed for shaving, not for styling manes of beautiful ladies. Then peeling. Then oil (I never thought, that oil is needed before a shave). Then hot towel. Then comes the soap (from a ceramic mug applied with badger brush) and then THE shave. Precise, slow and perfect. Then cold towel to soothe the skin and close the pores. Then the aftershave and oil, to keep the beard healthy. Took several times longer, then when I shave myself, but was worth every second and every penny.

And paying up was not the end. A coffee (courtesy of Gentleman’s World) on the terrace in front of she shop and a cigarette with my barber. And here he is, Martin, my barber:

martinthe barber

A pleasurable day, wouldn’t you say? What small pleasures do you enjoy that remind you, that you are alive? Send me an e-mail or write in the comments.