Category Archives: Multiple Sclerosis

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!

Memories, Multiple Sclerosis, Running

Fiery Feet

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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.

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, 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!

Family, Kids, Multiple Sclerosis, Running

Warning: this may get a little whiny

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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!

Multiple Sclerosis, Visually Impaired

Sensory overload

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A Trip to the Store; Sensory Overload – MultipleSclerosis.net
https://multiplesclerosis.net/living-with-ms/a-trip-to-the-store-sensory-overload/

“I have to walk down the aisle like I am balancing on a tightrope in a circus, look for what I need like I am looking for an abnormal tissue cell under a microscope”

Yes! This is so so ME! And meanwhile there are people waiting to get by or to get to where I’m standing and they don’t know why I’m taking so long and I feel pressured which makes the focusing even more impossible. This is also why I let people cut in line sometimes. At fast good restaurants, for example, while I’m straining to read the menu. I just don’t like making people wait on me.

I am still working on adjusting and adapting to vision loss. I’ll get there, eventually.

Daily Snippets, Multiple Sclerosis, Running

World MS Day 2016

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Today is World MS Day. From their webpage:

For World MS Day 2016 we’re celebrating all the ways that people affected by MS maintain independence and get on with their lives.

By sharing examples of independence from lots of different countries, we want to inspire people to challenge perceptions of what people with MS can do.

I’ve shared lots on the blog here about my struggles and victories with MS. While I’ve struggled with losing aspects of my independence, I am determined not to let MS get the best of me. This year I stepped out of my comfort zone and became a runner. You can read about my 1st race HERE. This has been a life changing experience for me in so many ways, and I’m thankful for every day I am still able to run. So today, I guess, I am celebrating running as my way of maintaining independence and getting on with my life, in spite of MS.

These are some things I’m thankful for today: an air conditioned home, freshly ground coffee, and a body that moves when I tell it to. What about you? What are you thankful for today? Do you have struggles you are overcoming? Toot your own horn here so we can all celebrate together!

Multiple Sclerosis

MS Confessions

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Today for most of the day I was feeling unwell. Not outright sick, not even on the verge of sick, just unwell. It’s hard to describe, but I was feeling a little more off-balance than usual, borderline dizzy, and I was getting short of breath after singing only one or two songs at church. I just felt like something wasn’t right. And while this sort of strange feeling would typically go unnoticed or ignored by the average person, I was feeling a little uneasy about it. MS is not a controlling factor in my life every day, but when it does hit, it can hit hard.That uneasy feeling I was having was quickly veering towards an all out fear that I could easily go back to where I was in the fall of 2013 – sleeping 20 hours a day, not knowing what was going on the other 4. We’ll never know what really caused all that, but since it accompanied the loss of vision – which was caused by the MS – it’s probably safe to say MS was the culprit.

So I guess this is just a confession that sometimes I do still  get scared. I really don’t want MS to steal any more life from me than it already has. I know there is no cure, so it will always be around, but I can’t dwell there. I can only take this one day at a time. Today was just a slow day. But I rested as best I could, spent quality time with my family, and will go to bed tonight thanking God for allowing me another day on this earth. We must enjoy the moments we are given. Make those memories, and hold onto them. Seize the day.

carpe_diem

Family, Health, Multiple Sclerosis, Running

Our first 5K

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The Mason State Bank 5k Run 2016:
Mindy – Age 38 – 39:42
Luke – Age 8 – 31:07

People, people. My son’s and my first 5k was a huge success. I achieved my goals and then some. And Luke, not knowing at all what to expect, ran an amazing race. He said aside from the day he was born, which of course he doesn’t remember, this was the Best. Day. Ever. He was over the moon excited, and is already talking about his next 5k. I think we have ourselves another runner in the family.

2016-05-07 20.31.22

What an amazing experience this was. I had no doubt that I would finish the race, and without much walking even. So there was no surprise there. The best part about this race though, was that I felt immensely supported by my family and friends. My brother and sister, who are both rock star runners and have been such motivation to me personally, were both there. My sister-in-law, my two nephews, my father-in-law, a couple dear friends even. All of them came. I even had one friend who told me just hours before the race that she was going to run it too! And even those who couldn’t make it wished me well beforehand and I truly felt them there in spirit. And while my husband was not there at the end (he was helping our daughter start her one mile race), he was there to give me good luck kiss at the starting line. He’s been my biggest fan through this whole process. He helped me find good running gear, like breathable shorts and shirts, and decent running shoes (my slip-on Sketchers were laughable for distance running). Just hearing him say how proud he is of me helps to keep me going. After all, I’m doing this for him and the kids. I want to be healthy, and I want to be around for them as long as I can.

The actual race was fairly uneventful. I think I must have been a little nervous, but I held onto my cookies (mostly). It really helped having a friend running beside me (at least until I left her in the dust after the first mile lol). I kept a good pace the whole time, and only tripped on my toes once, but recovered gracefully with a skip and kept on plugging away. At mile 2 (I think) my sister was waiting to take a picture, and then joined in and jogged beside me for awhile. That was nice because when you feel sluggish, like a tortoise crawling through molasses, it’s nice to have a distraction. My sister is one tough broad and she is an enthusiastic supporter. It was really, really, fun to run beside her, even if it was only for a portion of the race.

The final stretch of the race was up a major hill, and when I got to the top I was not only taxed, but couldn’t see where the finish line was. I knew it was near the end because of all the people standing around (and the smell of food from the local vendors) but the actual finish was just far enough out of my visual field that I wasn’t sure. So I decided to walk just then, to rest my legs and give myself time to gain a better awareness of my surroundings. After a few steps though, I looked to my right and I could see what I assumed to be the finish line, so I started running again. As I ran I started to recognize the banner reading “FINISH” and I started to get a smidge emotional. Not wanting to be a bawling mess at the end, I covered my face and tried to breathe as slowly as possible. As I crossed the line I saw my brother and Luke running towards me to congratulate me and bring me a water bottle. And, of course, to make sure I made it safely to a sitting position. My left leg was genuinely out of commission for a good 10 minutes. I did manage to withhold most of the tears, and just enjoyed the moment. I did it. I ran a 5k, all the way. And I can’t wait to do it again.