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?
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?
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.
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!
1. I’m type A, lists help me function. I feel discombobulated sometimes and I get confused (especially later in the day when I’m fatigued), and making lists just really seems to sort things out in my brain and help calm me down.
2. I went to my high school reunion Saturday and it was even better than I had anticipated. Most of the girls I was close with in high school were there, and it was *refreshing* to sit and catch up with them. Ha! I’m so glad I found that word, refreshing. I think I’ve been subconsciously searching for it since Saturday. Anyhoo, yes, it was refreshing. I didn’t realize it at the time of course, but it was. It was refreshing because all of these people knew me when I was young and carefree (to an extent, I guess) and they treated me that way. They remembered the old Mindy, and seemed to remember her fondly, but were also overwhelmingly accepting of the new Mindy. Everyone was sharing different memories – just the good ones, of course – and it was interesting what some of us had remembered and others had forgotten. It was nice. No expectations, no judgments. Oh, and also my husband, who had been not-so-secretly dreading the event, enjoyed talking with people throughout the evening, and as a result I never felt rushed to leave. It was a great night, and I think we all left ready for the next one 🙂
Class of 1996, 20 years later
This picture only represents about a fourth of our class, which was small to begin with, but in this case the old adage “quality over quantity” definitely applies. What a great group of people. Oh, and if you’re having trouble finding me in this photo, I’m in the front, fourth from the right with the ginormous tattoo on my arm.
3. Life is short. Just days after our class reunion, while everyone was still sharing photos on the private Facebook event page and discussing ideas for the next one, we were informed that one of our classmates (who was unable to attend the reunion) had passed away. On the same night of our reunion, her family’s van was struck by a drunk driver. Her husband and two children were injured as well, but her injuries were much more serious. She passed away late Monday night. Her name was Lorri, and she was literally a friend to all of us. Seriously, I don’t think there was a mean bone in her body. She was kind and caring, and always ready to share a smile. She will be missed by so many in varying degrees, but our hearts break the most for her husband and children. To lose your wife, your mother, so tragically is unimaginable. And all because some bonehead (I had to put it mildly to keep this PG, but insert R-rated insults if you wish) decided to get loaded and get behind the wheel of a vehicle. Senseless, reckless, stupid, stupid, stupid.
Ok, so I know that’s a major downer, and I promise I won’t leave it at that, but I want to say some things about all this. One – never ever drink and drive. Don’t put yourself in a position where you may be tempted to drink and drive. Hand the keys over, make arrangements, whatever you must do, while you’re still sober and thinking clearly. And two – it floors me how people have been rallying together to support Lorri’s family through this tragedy. Not only has her husband lost his wife, but he was injured as well. They are going to need a lot of help going forward, and thankfully they seem to be getting it. All the good that Lorri poured into people’s lives throughout her life is coming back to her family. A sick twist on paying it forward, I suppose, but it’s still comforting to see.
4. We finally sold our house, the one we moved out of last August. The closing is scheduled for tomorrow, and we couldn’t be more thrilled. My husband grew up in that house and it was also the first home we had purchased, so there’s a twinge of bittersweet there, but our new house and neighborhood make it all okay. When we come home at the end of the day, we are among friends, and we are in the first home we chose for our family. And we have a garage, so who’s complaining? Tomorrow it will be official. No more second lawn to mow, driveway to shovel, utilities to pay. Such relief. Goodbye, South Holly Way. You were good to us, and we thank you.
5. Summer. Friends. Children and their friends. We are making the most of it, for sure. Some days we play, some days we rest. Some days I clean. The screentime rules I usually set for vacations have been neglected repeatedly, but not entirely forgotten. I make the rules around here, and I say it’s okay. So there.
6. Feeding the children. That’s a thing that must be done. Now, in fact, so I’m outtie. Have a superb day, bloggy people. Embrace the moment and hug the ones you love!!!
I have a sign hanging in my living room that says “Do more of what makes you happy”. I look at it regularly and it always makes me wonder: what makes me happy? I really want to know, so that I can follow this rule. I feel like I lost some of this self-awareness when I lost my hearing, and I certainly don’t do many of the things that make me happy. So I thought I would start a list (I love lists) here on the blog, and maybe it would help me to think of those things and perhaps take some steps to start doing those things.
What makes me happy:
1) Drinking coffee – I do that plenty
2) Tattoos – I only have four, plenty room for more
3) Concerts – The hearing loss makes this extra challenging and scary, because I don’t know if I would enjoy them the same, but it’s worth a shot, right?
4) The city – I love walking around cities, big, small, it doesn’t matter. Chicago, Lansing, Mason, they all fascinate me.
5) Reading – On any given day my mind is partly stuck in a good book. Reading makes me happy, for sure.
That’s it. I can’t think of any more. I’m sure there are more, but that’s a start. Maybe more ideas will come to me in my dreams tonight.
What about you? Tell me readers, what makes YOU happy?
It’s quarter after 11 and I’m still awake. Meaning, my mind is still processing things like a normal person. This is not usually the case. But today I was somehow able to take a two hour nap, and I guess it was effective.
So I’m up in my bedroom, nursing a beer, and I just finished chatting with my mom (she’s an hour behind in Oklahoma). And now I’m thinking about the upcoming days. I have no plans on the calendar until Saturday. That’s three whole days of nothing, and I’m really looking forward to it. Lots of resting and recuperating will happen. But then there is Saturday, and it’s a big day.
Saturday is my high school reunion. Twenty years, baby. I know some may joke and say high school reunions are lame (or torture, if you’re John Cusack in Grosse Pointe Blank), but I’m actually looking forward to this one. I went to a small school, with a graduating class of 98 students (I think), and I had some really good friends and not really any enemies. I went to my ten year reunion, before Facebook and all that, and it was interesting to see that we were all still kind of finding ourselves. But twenty, that has to be different right? After twenty we may as well be different people altogether, right? I know I am. I am a completely different person than I was at 18. I am not ashamed of who I have become, and I’m happy where I am. So I don’t fear intimidation or judgment from my former classmates. And I look forward to reconnecting any way I can, even if it’s just for one night.
I’m sorry, though, I don’t have much else to say on the matter. This reunion has been on my mind for several weeks, but I still have nothing interesting to say about it. I will try to bring back some good anecdotes for you after the reunion has actually happened.
My son was driving me absolutely bonkers today. For the third summer in a row, I’ve enfoced the “No Screen Time Until…” rule. It’s a set of tasks that must be completed each day prior to getting any screen time (tv, tablet, etc.). This year I’ve been getting a lot of grumbling and whining about the whole thing, and this morning I had decided on-the-fly to make a rule (something I tend to do and then later regret) that the kids must always put their things away when they are not in use. For example, don’t leave your laptop on the couch when you’re off doing something else. If they were to leave said item in it’s inappropriate spot, unattended, for more than five minutes, then I would dispose of it.
Yes, in the trash it would go. Harsh, I know, but I was feeling kind of desperate.
So, my son left his laptop on the couch this morning and I graciously gave him a five minute warning. When two minutes went by and nothing and nobody had moved, I let him know that he had three minutes left to clear the item. I did not realize at this time that he was in the bathroom. But he did hear my warning, and when he came out, he immediately started arguing that the “timer” should stop if and when he had to use the restroom. Knowing he loves to argue – usually only for the sake of arguing – I was hearing none of this. Yet he continued to argue his case for extra time. Which is downright laughable, because with all the time he wasted arguing, he could have put the computer away and then gone and made himself a double decker sandwich.
Pretty shortly after all this happened, I received a call from one of my best friends. The great thing about best friends is that when they ask you how you are doing, you can tell them. So I told her how frustrated I was, and she empathized. She has two boys, one who is a couple years older than mine, so she totally understands this age and behavior. She had a really great suggestion for motivating the kids to pick up after themselves, one that is far less drastic, and probably more effective at teaching them responsibility. A win-win, right? Her idea was to have a box dedicated to those toys you find lying around. When you find them lying around, you put them in the box. Then, if and when they want their toy back, they have to do a chore to earn it.
I love, love, loved this idea and implemented it right away. Now it’s evening, it’s only been a half a day, but already I’m noticing a change in my son’s behavior. We came home from his baseball game and I noticed he left his cleats in the middle of the kitchen floor. I was tempted to put them straight into the lost and found box, but decided since this is still a new concept, I would give him a little warning. I simply told him I had noticed his cleats on the kitchen floor, and without a word he got right out of his seat and put them away!! I didn’t even have to tell him to, or remind him of the rule, he remembered all on his own! He understood that it would be a lot easier to just get up and put them away NOW, than it would be to have to do a chore later to get them back. Which is totally what I am trying to get through these children’s heads!
Putting things away, right away, makes your life so much easier in the long run. This is a habit I’ve developed for myself over the years, and I would be overjoyed if my kids grew up cultivating this same habit. Their future roommates and spouses will thank me, am I right?
Ok, so yeah, I’m feeling quite better now. Not stellar, but better. It’s after noon and I’m still in my pajamas (technically), but I’ve accomplished a lot today so far. And half the kids are fed (who knew my son liked chicken salad?), so I’m gonna call that winning.
Here’s what’s on my mind today: I get really frustrated when the house starts to become untidy, when I see things laying (lying?) around where they don’t belong (confession: that’s on my mind EVERY day). A lot of it is the kids’ stuff, but a lot of it too are areas I am intending to sort and organize. Kids bring home a lot of stuff from school. Some of it is not important, and can be pitched immediately, but then a lot of it I believe is worth hanging on to, at least for a little while. I will sometimes hang artwork on the fridge, take a picture of it for proper archiving, and then recycle it after a few weeks.
I’ve been doing pretty well at keeping up with the inflow, but those last few weeks of school were a whirlwind and I kind of gave up for a spell (yes, I said spell). So I have been wanting to get that last batch taken care of before we’re too far into the summer. And guess what? Today I did it! It’s all been archived and/or stored (some things are hard to photograph, so I keep them) and now I’m getting ready for next year!! I am abhorrently against clutter, so it may seem odd that I’m choosing to keep any of my children’s elementary school mementos, but I am sometimes a sucker for sentimental things. Also, I at one time enjoyed looking through the crap I made as a kid. I once created a watercolor painting of a giant can of Campbell’s Soup. Not exactly the kind of thing you would frame and hang in your kitchen (maybe), but even after all those years I still remembered how hard I worked on that painting, and how satisfying it was to complete. So, you know, memories. I expect my children may have some memories wrapped up in these things I’m keeping, and maybe one day they’ll want to revisit them. Or not, it will be their decision.
My only issue at this point is that the small boxes I’ve been using to keep these mementos are rather full. So I need to find the sort of boxes where I can keep these things in decent shape, but also sorted by year. Do such boxes exist? I’m sure they do. I’ll be scouring Amazon later, of course. Maybe Etsy or Pinterest will have some good ideas too. Do you have any ideas? I’ll take any suggestions you’ve got!
Oh, well. I’m in that grumpy, bitchy, unmotivated, frustrated mood. These moods are so much easier to “cope” with when the kids are gone and I can just ease back to normalcy at my own pace. But now I feel that added pressure to be the responsible mom and take care of things like feeding the children and making sure they’re not killing each other. And of course, being available to listen when they feel the need to ramble on about the latest YouTube video they watched. I’m so not up for this.
Thankfully, my kids are not crazy demanding and on these really hot days they are content to stay in their pajamas, watch movies, and eat cereal all day. That’s very similar to how I spent most of my summer breaks too, and I loved it. I have fond memories of fried bologna sandwiches and The Price is Right and watching the same movie over and over (the Princess Bride), with the occasional bike ride or fort building with my brother and sister. So really, I feel like I’m doing my kids a favor, so they’ll grow up and have fond memories to look back on too.
I haven’t been running in the last week or so and here’s why: I can’t leave the kids home alone (only one is willing to run with me) and it’s stupid hot outside (MS and heat = very bad). However, something occurred to me today and I felt a little ridiculous that it took me even this long: I can run on the treadmill – home with the kids, in the cool basement. That’s how I started running in the first place, for criminy sakes! So I’ll just have to use the treadmill as my primary running location for the summer, and we’ll get back to the outdoors when kids are back in school in September.
I have to mention that I do recognize that my recent increase in debilitating fatigue could very well be related to my lack of running, coupled with the timing of my Tysabri infusion, coupled with that evil curse we women have. But the running is the only thing within my control, so I definitely need to get back to that. Hopefully even as soon as tonight, if possible. Tomorrow is out, and I hate to keep putting it off. Tomorrow is out because the kids and I are meeting some friends at the local aquatic center for a day of swimming and picnicking. We are all really looking fp orward to it!
So that’s my journaly-type update of sorts. If you read this far, I’m sorry hehe. Just kidding, I’m glad you’re here. Make it a fabulous day!
Deaf and half-blind runner with multiple sclerosis
Little M.S. Runner 