Category Archives: Daily Snippets

Cochlear implant, Daily Snippets, Exercise, Food, Multiple Sclerosis, Photos

Monday, you are so good to me

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Happy Monday!! I was feeling pretty grumpy yesterday but I’m feeling a little better today. I went to the YMCA first thing this morning, after the kids were on the bus. I really, really love the elliptical machine. It’s able to work so many muscles in my legs in a much shorter time than walking or running does. So I’m getting a better workout, and I’m not overheating or getting fatigued. Well, I do get a little fatigued, and I have to be very careful getting off the machine and walking back to the locker rooms (next time I’ll bring my cane). I feel weird having to literally pick up my leg to remove it from the machine, and then hobbling across the room. It just seems backwards, that I would be able to exercise fine, but then have trouble simply walking to the locker rooms. But I see lots of people walking around with canes there, so I don’t feel self-conscious about it. Granted, those people with canes are much older than I am, but that’s ok. MS has only taken bits and pieces, so I’m happy to keep working with what’s left.

And now This. This is why I’m straightening my hair. The longer it gets, the less curl it can hold. My hair is thick and heavy, and those curls, while I do love them, just can’t stand up to the weight. Not that I tried to help it along today, as I tend to do with mousse, but even with that the curl seems to fall quicker and quicker. Now that I have the hair at my  implant sites shaved short, I’m able to wear my hair down without it knocking the magnets off. So it’s nice, but it was funny to see what my hair was doing when I walked past a mirror. And that is why I snapped a photo, so you all could share in the laughter! I suppose it’s not super crazy, just different I guess. I’m not used to seeing myself with my hair down. Ever since my cochlear implant surgeries, I’ve been wearing it in the same half-ponytail: every day, basically, for the past two years. It gets SOOO boring. Bleh.

Y’all, I’ve got barbecue ribs in the crockpot for dinner! They are gonna be so yummy and I just can’t wait. What are you having for dinner?

Daily Snippets, Friends, Multiple Sclerosis, Running

Free lunch and learning

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I just registered for a lunch seminar-event-type deal, and it’s way out of my comfort zone. The MS drug manufacturers sponsor these events all over the place, and I see my neurologist is often the keynote speaker. However, she is not the speaker at the event I signed up for (oh, well). The one I signed up for is truly just a topic I’m interested in, “healthy living with MS”, and I thought it couldn’t hurt to go. Several reasons: it gets me out of the house, I may learn something new and helpful, and it will be nice to be surrounded by others who can relate to the struggles we all face with MS. Also, it’s free!

It’s Friday, and this completes the second week the kids are back in school. I’m just now starting to settle back into my “normal” state. I did some outdoor running this week, as the weather is cooling off a bit (we’re coming into my favorite seasons, fall and winter). Also, I was able to spend a lot of quality time with friends this week, and I know that did my heart some good. I have some pretty incredible friends. All in all, it’s been a good week.

Cochlear implant, Daily Snippets, Photos

Changes to my hair

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So today I went to the salon for my usual trim. During my haircut, I sent this photo to my husband, and told him I was getting my head shaved:

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That is, indeed, a razor in my hairdresser’s hand. My husband texted back and said I should ask her if she had a couch I could sleep on. Because he’s a funny guy.

Of course, I wasn’t pulling a Sinead O’Connor and shaving all of it. We were just shaving the small spots where my cochlear implants are, so that the magnets would have a stronger hold. I have thick, curly hair, and the longer it was getting, the more difficulty I was having keeping the magnets connected. Every time they fall off it wears on the cord, not to mention the sudden loss of sound I experience. It’s super annoying, y’all. Anyhoo, my hairdresser has another client with a cochlear implant, and when she moved to town and started seeing my stylist, she already had the implant site shaved, and just has it trimmed back up. When my stylist told me about this, it was the first I had heard of doing such a thing, and I was skeptical at first. But after several more months of frustration with the dang things, I decided to go for it. And let me tell you, I am so glad I did! It is amazing how much stronger the connection is. I could feel the difference right away. I mean, these things won’t budge. I’m loving it.

My next plan is to go back in a month and perm my hair straight. I’ve enjoyed my natural curl as my hair has grown longer (it’s a real pain in the rear-end when it’s short, with all my cowlicks), but I think I’m ready for a change. My husband and my son both like my hair when it’s straight, but when I told my daughter my plans for permanency, she took it pretty hard. She says she loves my curls, and it just wouldn’t be the same without them. Somehow I think she will get over it. We’ll see. She has four weeks to say her goodbyes, I guess.

Daily Snippets

Yes, ma’am

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A woman getting off the Spec-Tran van last week said to me, “Have a nice weekend ma’am.”

I looked to the woman sitting next to me and asked, “Did I hear that wrong, or did she just call me ma’am?”

“There’s a first time for everything!” she replied.

“I guess so. I didn’t think I was quite a ma’am, yet.”

“Let’s see… I would guess you’re what? 35?”

“Pretty close! I’m 38.”

And then of course, she wanted me to guess her age, which is frightening because you never know how a stranger will react depending on how far off you are. So always, always, guess on the low side. Unless you’re talking to a kid, I suppose.

I don’t usually converse with the other passengers, but sometimes I get stuck with a chatty one, and that’s always fun.

 

Daily Snippets, Family, Food, Kids, Memories, Multiple Sclerosis

Every day kinds of memories

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As happy as I am to have the kids back in school so I can have “my time” back, I must admit I really enjoy their company when they are home. Especially as they are getting older, it seems. Today was especially memorable.

My son woke up at 5:30 this morning (in hindsight, he said that was earlier than necessary) to make homemade pancakes for the family. His intention was to surprise me, but his nosy sister spilled the beans last night at dinner. That didn’t matter though, because in the mornings I have a hard enough time remembering which button to push to snooze my alarm. So I was still surprised, and delighted, really. He makes really great pancakes! Of course he learned from the best (wink, wink). What I loved about this gesture is that it was genuine. He almost seemed to be doing it as a thank you to me, for everything he sees me doing. This is the first year he’s been entirely responsible for packing his school lunches, and I wonder if that’s sinking in with him already. I’m tempted to say it’s making him more grateful. It makes a momma proud.

That was memory #1. Memory #2 was far less significant but still worth mentioning.

My daughter loves the library. She loves reading books and loves that they are free. Also, she still loves horses. This morning she was telling me about the book she just checked out from the library. She said it had the ‘a’ word in it. I looked at the cover. Out was a horse book, and it was clearly a children’s book, so I thought a second more. Then it dawned on me: they were talking about a donkey. Ha! So I explained to her that in that context, it was just another word for a donkey, and that was ok. But when she asked if it was okay to read it out loud at school, I told her I was fine with it but that she would have to run it by her teacher, because she would have to be sure the other kids understood it was not a swear word when used that way. Maybe they could have a class discussion about double meanings and word origins. Might not be a bad idea!

So I started the day with some great moments with the kids and now I’m at the infusion center getting my monthly Tysabri treatment for MS. A typical day in the life of Mindy, you could say. 

Also, it’s Friday. Thank the good Lord that you were given the gift of another day, and go out and make it count!

Books, Daily Snippets, Family, Kids, Memories, Parenting, Photos

Reading

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When I came to bed last night I found a note on my bedside table from my son. He was asking if we could go to the library the following day, and if so, he asked that I wake him up. That last part is laughable because he’s an early riser – no way am I getting up before him. But I was touched by the request anyway, and super proud that with one week left of summer, my kid wants to walk two miles to READ. 

We had a great time. Luke checked out some Michigan Chiller books he had been wanting to read, and Natalie perused the children’s cookbooks. Then they both put on a couple puppet shows for me, and we headed back, stopping for lunch on the way. 

Nothing super special, but we all really just enjoyed each other’s company and had a good time. These are the times I hope they will cherish and store away in their memory banks for years and years to come. 

Daily Snippets, Movies, Multiple Sclerosis

Umm… I blame the heat

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I know, I’ve been a stranger. WordPress keeps reminding me I haven’t posted in awhile. But dang it all, it’s just been so hot and that seems to suck all the life right out of me. Even when I stay indoors with the air conditioning as much as possible. I feel like Westley in the torture chamber with Count Rugen – “I’ve just sucked one year of your life away. ” That’s a Princess Bride reference, for those of you who haven’t had the privilege of seeing my all-time favorite movie. If you haven’t seen it, I can’t help you. I just can’t.

But back to what I was saying. Life. Sucking. Heat. It drains me. Fatigues me. And makes me feel generally ill. Every time I go out in the heat for even a few minutes, and before I even realize it, I’m overheating. I can cool off easily enough and get some relief, but it still leaves me drained of all energy. So I decided to take my neurologist’s suggestion and a buy a type of cooling vest designed for people with MS. I actually bought something more than a vest – it’s a whole set of cooling products: a scarf, a torso wrap, and bra coolers (eek!). They work really well, and I’m happy with my purchase. Just another weapon to add to my MS arsenal.

I did some really fun things in the past few weeks, and I hope to reflect on them this week and share with you here on the blog. But not tonight, because it’s late, and all I’m really up for is reading or continuing my binge watching of The Gilmore Girls on Netflix. A girl’s gotta have her priorities, right?

Daily Snippets, Deafness, Disability, Funny story, Grown-up Stuff, Health, Hearing Loss, Miracles do happen, Multiple Sclerosis, Visually Impaired

The Social Security Office

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I had to visit the Social Security office today. Here’s the long version (because that’s the only way, really):

I’ve been receiving Social Security Disability Income for a full two years now. After you’ve received benefits for two years, they automatically enroll you in Medicare. I have health insurance through my husband’s employer, so I wasn’t real interested in Medicare, but if it’s free, I guess I can’t complain. What I learned, however, is that Medicare comes in different forms, and the two I was enrolled in were Part A (hospital insurance) and Part B (medical insurance). Now Part A is free, but Part B is not.

Now Part B could be advantageous, if it covered what my current health insurance doesn’t, and saved me more than I would be paying for the premium. But I never looked into it, because I learned that my participation in Part B would deem me ineligible for another program I’m part of. I currently receive assistance paying for my monthly Tysabri infusions (for MS, $20,000 before insurance PER infusion), and if I didn’t receive that assistance I would be stuck with about a $5,000 deductible. (I did warn you this was the long version.)

So basically, I could pay $120 per month for Part B Medicare and possibly $0 deductibles OR I could pay $0 premium and definitely $0 deductible. Now I was a straight A student, and I went to college. I chose the latter.

Simple, right? Not so. In March, when they sent me my Medicare welcome packet, I returned the card stating I was opting out of Part B. Then June came, and with it a welcome letter – and a statement of my insurance premium for PART B. I called to say W-T-F and they told me that was just a standard letter and that I would receive another one telling me it had been cancelled. Another month went by and my benefits came, less the $120 for Part B premium. I was not so happy, and I called again. They acted like they knew nothing about my opting out, and told me I needed to sign a form requesting cancellation, and that they would mail it to me.

At this point I didn’t believe a word they said, but I gave it a week to see if the form showed up. It did not. I called once again, but this time made the call to the local office, in case I needed to make an appointment. They said an appointment was not needed, but that I should come down and they would get it all straightened out. They made it sound so easy but I was still doubtful. I made arrangements (thanks Grandpa!) to get to the office today and guess what? It really was easy. The hardest part, literally, was signing myself in at the kiosk to get in line, when they asked me this question:

Are you….
1) Blind/low vision
2) Deaf/hard of hearing
3) (to be honest, I really don’t remember what was after those first two, but I was looking for an “all of the above” option)

I waited for about an hour, which is what they warned me it would be, and when they called my number I had to ask a few of the people waiting where #10 was, but they were all happy to direct the obvious newbie to her station, and I found it just fine. The gentleman was exactly that, a gentleman, and immediately put me at ease. He reassured me that cancelling was a simple process, and showed me where to sign, and before I even had a chance to ask, he was telling me they would be refunding me the two months of premium I had already paid, and the check will be on its way within the week!

I was so pleasantly surprised at how smoothly it went and I felt pretty silly for having been such a nervous wreck. No worries though, it’s done now and I can move on with the rest of my week. Is it really only Monday still?

 

 

Daily Snippets, Food, Funny story, Housekeeping, Photos, Piper

The fruit go everywhere.

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Have I mentioned I don’t multi-task well? Not that anyone does, really. It’s very difficult, if not impossible, to do two things at the same time. So add in my clutz factor and you have a mess on your hands, literally. I was walking into the laundry room holding an empty laundry basket, a stack of clean towels, and a fruit smoothie. 

And then all of a sudden I wasn’t.

Piper was quick to lend a helping tongue.

I thought I had cleaned it all up, and even thought I had photographed the entire mess. I had not. When I proceeded to work on the laundry I discovered more fruit blend not just on the dryer to the left, but above and BEHIND it. How on earth I had managed such thorough coverage of the laundry room I’ll never know, but I’m guessing I looked like a total spaz trying to save my fruit smoothie and that image alone gave me quite a chuckle. 

I do hope I cleaned up the last of it. I guess if I didn’t, my nose will alert me sooner or later.


Daily Snippets, Family, Funny story, Multiple Sclerosis, Photos, Visually Impaired

Maybe I should buy a trike bike instead

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I went on a bike ride with my daughter today. I don’t know why I try, really. It almost wears me out more than running. Almost. And it’s not the riding part that’s so hard. It’s the stopping and going. No wait, it’s just the going. Stopping is easy. Getting going again requires balance, which a normal, healthy human would probably not think twice about. But for me, the MS girl, it’s kind of problematic. I just don’t have the balance required to get it done without looking like a complete goofball. It’s fine when I catch myself, and better yet when I actually get moving again, but when I don’t? This kind of thing happens (I know it’s a little gory, and I apologize, sort of):

Ouchy-wah-wah is what we like to say around here. Yikes. And is it crazy that I didn’t realize the damage until AFTER we finished our shopping trip? I mean, a half hour later and a mile more of riding happened and I was completely oblivious to the bleeding. I had inspected the scrape right after it happened, but I guess I missed that upper part. I blame my right eye, it’s useless.

Of course now we are home and resting, and I cleaned up the wound and it hurts like the dickens. I’m pretty sure it was getting infected. Eeewww.

I might wait until I’ve built up my core strength a bit more before attempting another ride. Gotta stay safe!