Tag Archives: blogging

Happy Pete – The Name Says It All!

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Seriously! I’m really happy that I found another amazing example of a person loving their life, living an awesome life, despite dealing with MS (or any other medical condition.)

I’m continually adding to my list of “personal heroes”!!!

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Musical Monday – Ave Maria (Bach-Gounod)

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Hello on this incredibly snowy Musical Monday!

I’m getting braver! Here’s a recording of me actually performing the Bach-Gounod Ave Maria in Church for their Jubilee celebration, three nights ago. I got sick a few weeks ago and haven’t quite recovered yet, but now that this celebration is over I can maybe relax and sleep. For a year or so. Or at least until I feel human again. Crappy compromised immune system!

Anyway, this was a “Damn the MS and just do it” situation for me. I had made the commitment, so it didn’t matter how I felt, I just practiced and practiced and then performed, and I’m pretty proud of how it sounds. I wouldn’t want to be in this kind of situation very often, but I proved to myself that… just maybe, I’m more capable than I give myself credit for. Kinda cool!

And yes, it really is snowing at the end of April. It’s been snowing on and off for days. I’d rather have snow than flooding, but I *would* like to see the ground at some point. And, you know, summer and stuff.

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Musical Mondays – Mike Tompkins is My A Cappella Hero!

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Mike Tompkins is amazing – he started out as a beat-boxer and now he does multi-layer a cappella tracks like this – his amazing version of Adele’s “Rolling in the Deep.”

I sent this to my voice teacher, and she pointed out that not only does he sound amazing, but his pitch and tempo are absolutely perfect for each layer that he recorded.

So: my lesson here – don’t layer bad tracks hoping that, blended, no one will notice the errors. Don’t hurry them to just “get it out there” unless there’s a reason to do it. (When I first started blogging, I was told “sloppy success is better than perfect mediocrity” hahaha!) Don’t try to get everything recorded in a single session, your voice won’t like you much after 8 or 9 hours of singing. And most of all, work each layer until you like how it sounds by itself. THEN put everything together and publish it, because THEN you’ll be proud of what you’ve done!

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Hobbies and MS – Musical Monday – The Rose!

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I’ve talked before about hobbies and singing in a post called Hobbies, Compromise and MS. I finally decided to upload a recording of me singing something! Not opera though. I’m not brave enough for that yet.

I’ve been playing with Audacity (BEST free music editor out there IMO) and came up with this – it’s all me singing, 14 different layers, and although I know there are a LOT of errors in timing and pitch, I’m still pretty proud of it!

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So there it is, my proof that hobbies don’t need to end with a medical condition, or going on long term disability. Consider taking up a new hobby that suits your current skill-set, since you NEED to find something enjoyable in your life! Or work with something you’ve always been interested in but haven’t had time to experiment with. I finally have time to play with music and harmony! It’s a learning experience – from this I learned I REALLY REALLY need a metronome because I actually sang each part slightly slower than the last, and I did the lyrics last, so by the time I got to them the timing was incredibly WAY off. But I did my best, and I think it sounds pretty good.

Hobbies are really important for your peace of mind. I made the mistake of cutting myself off from my hobbies for a LONG time, and my confidence and self-concept really suffered as a result. Hobbies help keep you rounded as a person, the opposite of “putting all your eggs in one basket” as I had done with work. I needed to rediscover my hobbies just to feel human after my “basket” suddenly disappeared. It took a long time, but I’m starting to feel better, because my hobbies are things I can actually do! Singing is a reminder that I didn’t suddenly stop being a person, with skills and talents, after becoming unable to work.

I’m going to try and post something music-related every Monday. It may be a description of how to make a video like this, or another song, or a cool tutorial. I am also open to suggestions here, just comment below! Yay for Musical Mondays!

MS Adventures – Modafinil, Day Three – Coming to Terms With It

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Three little pills, spaced over three days. I’m super jittery but I feel AWAKE! Alive for the first time in forever. Looking forward to testing my limits all over again!

And a little afraid of the crash. But only a little.

Yesterday I didn’t have my normal morning coffee, because I hoped Modafinil would do enough to keep me awake. What I FORGOT was that there’s no actual caffeine in Modafinil – it works on a totally different part of the brain. So by about 2pm I had the (by-now-familiar) withdrawal headache. I have a love-hate relationship with caffeine – we break up occasionally, but I always go back. Anyway, I don’t like drinking coffee after noon or so, because it can interfere with my sleep, so I just waited it out. I kept telling myself “You’ll go to sleep tonight, and in the morning you’ll get up and have your coffee, and it’ll be AMAZING.”

So I just went about my day, doing housework and stuff (MUCH more housework, and more quickly than usual, by the way!) and it was fine, my energy levels were still pretty good, even with the low-grade headache. Right up until about 7pm when the Modafinil, rather abruptly, stopped working. Left my system. Done.

I was at a Weight Watchers meeting. (I’ve discovered that the new system is PERFECT for me, in combination with the Wahls Protocol, to help me make sure I’m getting the nutrients I need.) Anyway, I got hit suddenly with a dizzy spell hard enough to stagger me. I was standing in front of a table, and I’m really glad the table was there, because I’m pretty sure I would have hit the floor otherwise. One of the ladies asked if I was alright, and I said “It’s fine, my new alertness drug just wore off.” But inside my head I was frantic: “How the hell am I gonna get home? I can’t drive like this!” Thankfully, I quickly realized two things: 1. I moved back home so I had LOTS of people I could call if I really needed help, and 2. the dizziness was already wearing off, even if the brain fog wasn’t.

And I honestly think the brain fog wasn’t that bad, it was just that the CONTRAST between the alertness I had felt and then the exhaustion when it wore off was so sudden and pronounced. I had just moved from what felt like my “old, pre-MS normal” to my “MS normal.”

And it scared me. And then I started to over-think the situation (as usual) and freaked myself out even more.

Modafinil isn’t a physically addictive drug. That means my body apparently won’t develop a tolerance, so once my Doctor and I find a working dosage, I won’t have to increase it over time to keep the same effect.

But psychologically? Whoa Momma! I’m incredibly grateful right now that I don’t have an addictive personality. The only addiction I’ve ever dealt with is caffeine, and I’ve weaned myself off it several times, just to make sure I still could. Heh. Another control issue?

But Modafinil? The thought of feeling normal, and all I have to do is take this little pill? One teeny tiny pill, to make such a difference…

That terrifies me. Because I want it so very, very badly.

But that means giving control to this little white pill, doesn’t it? And I know I’m going to do it anyway. The thought is accompanied by both exhilaration and fear.

So yesterday, as I said, I told myself “You’ll go to sleep tonight, and in the morning you’ll get up and have your coffee, and it’ll be AMAZING.” And it was! I actually sat and REVELLED in the coffee, quietly of course. Too early for loud revelling, and besides I hadn’t had my Modafinil yet, so I wasn’t feeling particularly bouncy.

But I was waiting for it, looking forward to it. Craving the thought of feeling normal, if only for half a day. And I understand now, in a way I never have before, how insidious addiction could be. How somebody (with fewer control issues maybe?) could be completely overtaken, suffocated by it. But welcome it anyway.

Holy crap that scared me.

And then I realized that, once again, I was over-thinking. Maybe, just maybe, I should look at Modafinil differently. I mean, if I learned that a friend was on antidepressants, I’d applaud them for reaching out and talking to someone, and taking control of their situation. Too many people, I think, still assume that therapy exists for the weak. I think it exists for those strong enough to talk to someone about their lives, people who are proactive and want to change things about their thoughts and situations. (Ahem. I finally made contact with a therapist, to discuss my control issues and learn to deal with “my new normal.” I’m now on a waiting list. But I’m still happy I finally reached out to someone about it!)

Anyway, maybe I should think about Modafinil the way I think about antidepressants: it’s a way to help regain control, not a way to give control away to a drug. So I asked myself a few questions:

Q: Is it a necessary drug for me to take? Will my condition get worse without it?

A: Well, no. Most likely not. There have been some studies indicating that Modafinil may slow MS progression, but not enough to make it “a necessary drug.”

Q: Will my experience of life be enhanced by this drug? Will it help me participate more fully in my own life?

A: Yes, I believe it will.

Those simple questions, that stated belief, has leached away most of my fear regarding any loss of control. In any case, it’s only day three, and I may have a lot more to learn about this lol!

So my lesson for today is this:

BE AWARE OF THE CHOICES YOU MAKE, AND WHY YOU MAKE THEM.

That’s it, that’s all. There are always consequences, so when you’re making what you feel is a major decision, think about it. Be aware enough that you can feel good about what you decide. Write down your reasons, because it’ll help to remind you later WHY it was a good decision for you at the time. Is the end result worth what you feel you’ll have to give up? If your answer is yes, then just do it!

MS Adventures – Modafinil, Day Two – Holy Dry-Mouth, Batman!

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Modafinil. Mo. Da. Fi. Nil. My new drug of choice.

Modafinil is a powerful stimulant, and since I’ve had dry-mouth since my first pill yesterday, I’m attempting a caffeine-free day, and just hoping the Modafinil will take it’s place. I’ll let you know how that goes.

I was concerned that the drug may interfere with my sleep patterns, especially since I took it after lunch when I had the prescription filled, but I slept just fine last night. I woke up at a normal time this morning, with no headaches, dizziness or agitation. I’ve been keeping a close eye out for the listed negative side effects, but so far (other than the dry-mouth) there’s been nothing.

One other side effect I’ve noticed is that it’s acting as an appetite suppressant. Unfortunately, I’m hypoglycemic. That means I have low blood sugar naturally, and I really do need to eat every couple of hours. So I need to pay MORE attention to food, since regulating my blood sugar levels will be VERY important if I’m not getting as many hunger signals.

I foresee a possible issue here. Not because the drug doesn’t work, but BECAUSE it works really well so far, with liveable side-effects. I know that doesn’t really make sense. I think maybe it’s my control issues coming up again – I really dislike the thought of HAVING to take something every day.

Actually, I really dislike the thought of WANTING to take something every day.

This is ridiculous. When I get a sinus infection, I take antibiotics, I don’t complain that I have to take pills for that. When I’m really congested, I take a decongestant and an antihistamine, and I’m happy when they work. I don’t complain about taking them. Maybe it’s because I know the antibiotics are short term, and I only take the antihistamines when I feel like need them. So what’s the difference?

I’m willing to bet it’s another control issue. Heh. One of these days, I’ll have to see someone about that!

I’m not sure that anyone who hasn’t experienced a loss of control over their bodies and minds can understand how SEDUCTIVE the thought of “feeling normal” is. I’ve spent the last couple of years redefining my “normal” and so far, it’s not a destination, it’s a process. An alternately lovely-and-fulfilling versus horrible-and-frustrating process.

I guess the trick is to really savor the lovely-and-fulfilling parts, while passing by the frustrating parts, taking in the lessons as you go. I mean, that’s the whole point of the Edison Tally, right? To concentrate on the lessons instead of the outcome.

So. This drug. Maybe it’s a lesson in itself. Certainly, it’ll be a constant reminder that I still have some work to do around control! It’s funny how this one little pill brought up SO MUCH STUFF for me! I actually like it when that happens, because I really believe you have to understand what’s going on in your head, behind the scenes, before you can make changes. And I’m all about making the changes.

Is anyone else out there on Modafinil, or anything else for specific symptom relief? What’s your experience with your medication? Has any of your medication brought up unexpected challenges for you? I’d love to hear from you, just “Comment” below!

The Edison Tally – Do Something New Every Day, Even If you Fail

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I’ve decided that part of living life as an Adventure is doing something new, or something you don’t want to do, every day. Especially if it’s something that scares you. So, this morning, I finally took the plunge and did something I’ve been putting off for about 3 years, due to fear.

I opened a trading account with an online brokerage. And I funded it. (The fear is still making me a little nauseous right now, and I think I’m still in shock!)

A little history: When I started my blog, I was dabbling at learning about online options trading. I’ve been ghosting the classroom site for YEARS! I’ve been virtual trading (with fake money) on and off, sometimes successfully, sometimes not. Mostly not – I really didn’t take it seriously since it wasn’t real money.

The ironic thing is, I’d started taking classes in the first place because I was afraid of what would happen if I lost my job or became unable to work. I didn’t trust the government to take care of me. But guess what?

IT HAPPENED!

The worst thing I could think of (in my privileged Canadian life) already happened. I could no longer continue working. And I still didn’t open an account. I was too busy. (Yeah, busy feeling sorry for myself!) I didn’t want the responsibility. I didn’t want to take anything else on. And then I moved. And then I moved again. And then I moved again within the town I moved to. But you know what? I got tired of the excuses! I came to realize that the only reason I hadn’t jumped in was FEAR. What if…? What if I haven’t learned enough yet? What if I don’t remember how to apply the principles? What if my brain discombobulates (again) and I can’t focus enough to do it? What if I’m too tired to concentrate? All these reasonable things covering up the real fear: What if I’m no good at it? WHAT IF I FAIL???

Today I found my answer in another question: What if, in a year from now, I look back and STILL haven’t even tried? What would THAT do to my self esteem, to my confidence, to my current idea of self-worth and ability? That’s where most of my fear comes from – not recognizing my current self in the memory of my abilities. I don’t know what I can or can’t do.

So what if I fail? Then I fail – but I don’t think I will. The other day on Twitter somebody posted one of my favorite quotes, by Thomas Edison: “I have not failed. I’ve just found 10,000 ways that won’t work.” So I posted back “Dear Mr. Edison: I haven’t found 10,000 ways that won’t work yet, but I’m working on it!” I thought I was being tongue-in-cheek, but I was actually telling the total truth!

We can only succeed if we give ourselves the chance to fail.

Holy Crap!

That was a real “A-ha!” moment for me. Sounds so simple, right? But it totally shook my world.

Then I decided it would be a fantastic idea to keep track of my “ways that don’t work” as if they were successes, with a list I’m calling The Edison Tally! I mean, in the end, the only real failure is not trying. How can you succeed if you don’t even try?

So I’ve created another page on this blog, called THE EDISON TALLY.

It’s a list of “lessons learned” and I’m hoping to add to it every day, since I’m committed to doing something new every day, and it won’t all work perfectly right away.

I’m hoping you, my lovely friends and readers, will help me add to it too! Just leave a comment at the bottom of this post, or on the Tally page itself, and I’ll copy it in. It’ll take me a long time to get to 10,000 “ways that don’t work” without you!

Happiness is Tut’s Notes From the Universe!

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I can’t believe I forgot about these!

I know I said I’d post pictures about the house reno, and I will this weekend, but I just had to drop a note about this crazy amazing service. Mike Dooley, in his “Notes From the Universe” emails (which are very short, very inspirational, and you can pick how many you want to receive in your inbox) are personalized messages that The Universe sends to you whenever you want them. They’re all about loving where you are right now, and having hope for your goals and dreams and future.

So many of us with a medical condition we get to confront daily FORGET that the most important thing is to feel good about ourselves, no matter what our struggles are. We can’t heal if we spend every moment feeling horrible.

So here’s The Universe with a “pick-me-up” for you all!

CLICK HERE TO CHAT WITH THE UNIVERSE

Check out the site, subscribe to the Notes, and have a fabulous day!

PS Last blog I christened myself “Ms. Adventure” and today I noticed my first email was from “Tut’s Adventurers Club.” Coincidence? I think not!