Memories, Multiple Sclerosis

Facebook is reminding me

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Does anyone else on Facebook get those daily reminders of things you posted “On This Day” in prior years? I’ve been getting them for some time now, and lately it’s been a heavy feed of reminders of the days leading up to my MS diagnosis 7 years ago. Today was no different. My status posted on 9/29/09 was this:

“Mindy has been having new symptoms creep up and is kind of freaked out about it.”

One of my comments on this post was this – “I don’t know, they didn’t SPECIFICALLY rule out larvae. I’ll have to ask 😉 But in all seriousness, I’m really just praying it’s not MS.” (This was in part a reply to a coworker friend who had been joking that this was all being caused by larvae in my brain. It wasn’t.)

I think on a deep level I knew it was MS before I was given the diagnosis, even though I was praying against it. In fact, I vividly remember sitting at my desk during a lunch break, scouring the internet for explanations to my symptoms. I landed on a page at the National Multiple Sclerosis Society website that described the many possible symptoms of MS. They listed common symptoms and less common symptoms. When I saw “itching” described among the uncommon symptoms, tears welled up in my eyes and I had to catch my breath.

From the National MS Society: “Pruritis (itching) is one of the family of abnormal sensations — such as “pins and needles” and burning, stabbing or tearing pains — which may be experienced by people with MS.”

This was exactly what I had been experiencing around that time, in my upper arm, and it was by far the most painful of the symptoms I had been having. It was the word – stabbing – that caught my attention. I hadn’t thought to use that word to describe it, but that was it, that was it exactly. So to see it described that way… well, I guess I just knew. At that moment, I knew.

The rest is history, I guess you could say. I’m not certain of the exact date I was diagnosed, but I’m curious to see if it comes up on my Facebook feed. I know it’s coming soon, the anniversary, but I’m not sure if I posted it publicly at that time. I guess we’ll see.

I think the most interesting thing to me as I reflect on those days is that I remember the absolute dread I felt, and the fear and uncertainty of it all. I knew nothing of MS at that time, and I really believed it would be a death sentence. I thought it guaranteed a miserable life spent home bound and dependent on others for everything. I was so scared… so, so scared.

I was also very wrong; I look at where we are now, and I am so grateful for my life. MS is just one of the many challenges our family has faced, and through prayer and patience we are coming out of each one stronger and stronger. It’s just like that saying, that what doesn’t kill you makes you stronger. MS can certainly be scary, all unknowns it brings with it, but it doesn’t have to be. No one is promised another day on this earth. No one is promised health and wellness. We must be grateful for what we have today, and really learn to appreciate and embrace each moment. I am learning step by step to do this, and I encourage you to do the same. Carpe diem, folks, carpe diem.

“Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.” Matthew 6:34

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?

Disability, Multiple Sclerosis, Running, Visually Impaired

No excuses left

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I went to that MS lunch program yesterday and had a wonderful time talking with others about staying healthy and coping with every day MS symptoms like fatigue and poor balance. Just as I suspected, it was refreshing to chat with others in similar situations to mine. No need to explain much; there was a strong sense of mutual understanding. I’m so glad I went and I am already planning to be at the next one.

But let me tell you, the most fantastic thing I learned yesterday had nothing to do with the program. I was chatting with another lady while we were both waiting for our rides, and I learned that our public transit system offers another sort of ride, similar to the Spec-Tran. I have been using the Spec-Tran for I think two years now (I can’t believe it’s been that long), and while it’s a wonderful service, it does get a little expensive. Especially when I am looking at using them to get me to the YMCA to exercise 2 or 3 times per week. It’s $2.50 each way, so every day I go to the Y, it’s $5. Which is kind of the opposite of motivational. So I’m paying for the Y membership, and $5 a day on top of that, and that really adds up. It’s almost as painful as paying for the dentist. Almost.

But this other service, the Redi-Ride, will come to my house, same as Spec-Tran, and will take me anywhere in my township – including the YMCA – for $0.60 per ride. Sixty cents, people! AND, they only need 4 hours notice, as opposed to the 24 hours Spec-Tran requires. I am beyond giddy about this. That may seem silly, to be giddy, but this is a big deal in my world. MS stripped me of my independence three years ago by taking my vision, but by golly I am getting a lot of it back (the independence, not the vision). The Spec-Tran service plays a big part in that, but this Redi-Ride will do the same, and with a lot less pain (financially speaking, of course).

So that is my excitement for the week. I’m very excited about this Y membership, because I believe it will remove any excuses I may have about running, and now with the Redi-Ride I can’t even complain that it’s too expensive to get there. No matter the weather, I can still keep moving. Is my knee giving me trouble? Use the elliptical. Hip acting up? Swim in the pool. Feeling lonely? Join a class! Yes, this was a good decision. I’m making an investment in my health. This body I’m working with is flawed. MS is a serious setback, but by getting stronger and staying healthy, I am fighting back. I want the odds to be in MY favor, not the disease’s.

I signed up for another 5k race, and it’s less than a month away. I hadn’t been sure if I would be ready for it, but now I feel like there’s a good chance I will be. One day at a time, right?

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:

2016-09-13-11-28-27

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!

Family, Kids, Memories, Photos

Summer 2016 Festivities

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In case my kids ever claim we never do fun things…

June 9 – last day of school, kids went to Grandma’s
June 14 – Dentist! (Okay, that’s a joke)
June 17 – Biked to Holt Plaza
June 17 – Lugnuts baseball game, camped out on the field with the Girl Scouts
June 18 – Selleck family cookout at Oma and Opa’s
June 21 – East Lansing Aquatic Center
July 1–3 – Dundee/Splash Universe
July 4 – Independence Day, Fireworks
July 6 – 8 – Camping with Johnsons
July 15–17 – Garden City Tournament
July 22 – Went downtown (library, Subway, The Peanut Shop)
July 23 – My class reunion, kids at Grandma’s
July 26 – Lake Lansing Park & swimming
August 2 – Ingham County Fair
August 3 – Bowling
August 6-7 – Weekend with the girls (my sister and nieces)
August 9 – Valhalla Park & swimming
August 10 – 13 – Camp Albright
August 18 – Valhalla Park & swimming
August 19 – Michigan’s Adventure
August 26 – Impression 5

QD Donuts at Holt Plaza
9/11 Memorial at Holt Plaza
Walking around the bases with the Girl Scouts
Camped out on the field
Dentist visits can be fun
Ice cream at the aquatic center
Dundee Cabela’s
Eating lunch downtown
Splash Universe
Day camping in the front yard
Waiting for Independence Day fireworks
Fireworks!
Finding frogs (toads?) at camp
$1 Snow cones at the Garden City tournament
Queen Nails manicure
The Impression 5 mouth

Some fun things are on the list, but not in the pictures, or in the pictures but not on the list. And then others didn’t make either, but the memories were made nonetheless, and we will cherish them all. We had quite a summer. Now school starts TOMORROW and we are all so excited! What was your favorite memory from this summer?

 

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.

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. 

Deaf and half-blind runner with multiple sclerosis