Fiery Feet

Most days, usually at night, I get a burning sensation in my feet. My neurologist calls it nerve pain, and it is another common symptom of MS. It feels like what I would imagine walking on hot coals would feel like. Or say, if you burned your hand on the stove, and the pain lingers. It’s extremely painful. When it happens at night I can usually fall asleep despite the pain, but when I can’t I take the Neurontin my neurologist prescribed. Because Motrin and Tylenol won’t work for nerve pain.

It’s funny, I had this type of nerve pain seven years ago, in the months leading up to my MS diagnosis. Thing is, the pain was in my upper arm. It was so painful I couldn’t even get to sleep, because any time something touched my skin (like the blankets on my bed) it would send sharp pains all through my arm. It was excruciating. I remember my husband had the genius idea of cutting the toe off one of his socks and using that to cover my arm. It worked like a charm, and protected the skin from rubbing up against anything while I slept. So for awhile I was sleeping with a tube sock on my arm! Funny the things you remember.

This morning I was feeling the fiery feet again. I don’t know if it seemed more intense today because I wasn’t trying to go to sleep, but it was definitely worse than normal. The pain was mostly in my left foot, which I suppose is the side that usually gives me the most trouble when my nerves are acting up. I couldn’t even bear to walk, the pain was so bad. I had to have my son go get the Neurontin for me. Thankfully that helped, at least enough to get me walking again. I can still feel the burning, but it’s definitely calmed down.

So, I haven’t been running like I was, simply because summer is so busy with the kids, and the heat wears me out so much. However, I’m anxious to get back to it. This is not because I like running, so much as I like what it does for me. I’ve said all along that it helps my fatigue levels and my balance is better. So, with that in mind, I’ve been wanting to get back to regular runs, even if they are short. I think to get back in the habit, I need to do it daily. Which means I’ll have to run today with the fiery feet. Who knows, maybe the running will take my mind off the burning? I guess I won’t know until I try.

Reading

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.

Umm… I blame the heat

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?

The Social Security Office

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?

 

 

The fruit go everywhere.

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.


Maybe I should buy a trike bike instead

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!

What is on my mind

 

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_20th Reunion
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.

Goodbye South Holly Way 2016

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!!!

 

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