All posts by Little M.S. Runner

Forty-something, married with two kids and two dogs. Trying hard to live every day to the fullest with multiple sclerosis, impaired vision, and deafness. Couldn't make it without my Savior, Jesus Christ.
Cochlear implant, Photos

No one is around, thankfully

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I say that while completely understanding the irony here. I’m not shy.

But seriously, what the hell is up with my hair? I washed it about two hours ago, towel dried it, and have been sitting and reading a book since then. And now there is this:

Wild hair

…which may not be a big deal relatively, but I’m not used to it. Mostly because once it fully dries it tends to calm down, and I generally keep it up in a half-ponytail so it doesn’t interfere with my cochlear implant. However, they tweaked the magnet on the headpiece last Tuesday at the audiologist’s office, and it is staying put much better now. The first magnet was strong enough, but caused pain. The second one didn’t cause pain, but kept falling off. This third time is the winner, apparently. I think only other CI recipients can understand the joy in being able to keep this thing stuck to your head. And oh, being able to style your hair in more ways than just the half-ponytail is pretty thrilling too.

The excitement never ends around here. Ha! Good night, my dear bloggy readers!

Anemia, Cochlear implant, Deafness, Multiple Sclerosis

Add blood disease to the list…

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I’ve been really tired lately. For the past couple of months, actually. I just kind of assumed it was circumstancial, or due to the m.s., or a combination of both. It would make sense. Fatigue and balance issues are par for the course with m.s., and we have the new puppy, and we’ve had lots of travelling and family events with the holiday.  So I had been telling myself that’s what it was, and it would ease up.

Only it wasn’t easing up, and I was starting to get very discouraged. I just couldn’t get back to that place of feeling like you have sufficient energy to move. And no amount of caffeine or sleeping seemed to help.

I went to see a new neurologist yesterday, and shared all of my concerns with her. She said I’m doing all the right things (though I am under orders to stop climbing on chairs) and I’m on the best m.s. treatment with my monthly Tysabri infusions. She ordered a gang of blood tests, since I hadn’t had one in quite some time.

She called this morning with some of my test results (while we were at the pediatrician with my son, who has been complaining of headaches and was up last night with headaches and vomiting. She was still waiting on further test results, but the one she was most concerned with was my vitamin b levels (or hemoglobin, or something). Whatever “they” are, they should be at 12. Mine are at 8, which means I am very anemic. Their words, not mine. The lucky thing is that my primary, who my neurologist was advising me to see regarding the anemia, is located on the second floor of the building my children’s pediatrician is in. So Mike called to see if they could see me right then and they were able to! So I left Mike with Luke and took the elevator to the 2nd floor. The primary doctor ordered more blood testing to get a better sense of what might be causing the anemia, prescribed some iron pills, and is setting me up to see a hematologist.

What FUN. After everything I went through last year with the trip to Mayo Clinic, hospital stays, plasmapheresis, etc., I was really hoping for some time off from doctors and testing. That’s clearly not happening.

I’m not exactly looking forward to more medical drama – not to mention the frustration and guilt I feel for needing my husband to take time off work to drive me everywhere – but I am somewhat relieved to learn that I wasn’t just making this up. I wasn’t just becoming a lazy person. There is a reason for this fatigue, and the headaches and dizzy spells. More importantly, there are solutions. Before today I didn’t know the first thing about anemia, but I know now that it is treatable, and depending on the cause, can sometimes even be reversed. That’s a hell of a lot more than I can say for multiple sclerosis. And compared to all of the mess I’ve been through with m.s. for the last 5 years, and the mess I go through daily with hearing loss, anemia looks like a walk in the park.

Now I just have to find the park!

Driving, Guns & Ammo, Low vision, Marriage

Range Date

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Grandpa agreed to come and watch the kids (and the puppy) after church so Mike and I could go on a date. Where do we go for fun? The shooting range! Mike shoots competitively (and does quite well for someone who doesn’t get a lot of time to practice), so when he gives me a fist bump after I’ve shot a few rounds, I feel pretty proud of myself. See for yourself in the picture below, that hole right in the middle, dead center? That was my first shot. I thought at the time I should have stopped right there, but I’m glad I didn’t.

I was shooting my Sig Sauer P238 (with new paisley decorated grips… I really ought to have a picture), my Glock .380, and Mike’s Glock .45. We had a blast, and it is such a great way for both of us to relieve stress. We were wrapping things up when Mike started chatting with an acquaintance from a couple lanes over. I think Mike must have shared how much I was enjoying shooting the .45 (cuz I was, you know?), so the man offered to let me shoot his gun: a Desert Eagle .44 magnum. This gun was a monster. Not too heavy to hold, but it was almost too big for my finger to reach the trigger. I had a hard time managing the recoil, so I was pretty surprised when I saw I hit the bullseye. I told the guy after I shot three rounds – with his super expensive and impressive gun – that I didn’t do so bad for having low vision! Maybe I should have mentioned that first? Oh well, I shot well and he seemed mostly humored that I was having so much fun with it. (He even accepted my friend request on Facebook!)

We didn’t get a picture of the target I shot with the magnum, but the one below is from the rounds I shot with the Sig P238.  I think. Maybe it was the Glock. Anyway, not too shabby for someone who only gets to the range a handful of times throughout the year. I can’t drive a car, but I can shoot a gun! 🙂

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Food

A Dessert Too Awesome for Words

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>>>Insert delicious dessert photo here

I am in the process of making a dessert for the family gathering tomorrow. This is my third time making it. The first time I made it, it turned out fabulous, and I brought it to my mother-in-law’s for Christmas. It was a huge hit. The second time I made it for another family gathering, which was cancelled due to weather. It was a good thing though, because I totally screwed up the marshmallow element. So the family gathering was rescheduled for tomorrow, and that brings me to my third attempt.

While I like recipes, they bore me at times, and I like to take a risk now and then. Attempt #1 involved a makeshift double boiler to melt down giant marshmallows we had left from summer camping trips. Attempt #2 involved skipping the makeshift double boiler method, which proved disastrous. If you’ve ever hated getting taffy stuck in your teeth, multiply that experience by 38. It was bad.

Attempt #3 is still in progress. I plan to come back and add a picture, but we’ll see. The twist on this attempt can’t be seen in the picture anyway. I won’t really know how it turns out until it’s done, but I can tell you the batter was amazing. What is the twist? Haitian Vanilla. Straight imported from a friend of mine who visits there often to do mission work. I absolutely hate using store-bought vanilla, as all I can smell is the alcohol (and not the good kind). I have always loved using Mexican vanilla. It’s a much smoother, purer alternative.

But this stuff from Haiti? A totally different animal. Simply sinful. I get high just sniffing it from the bottle. It’s amazing. And adding it to the brownie batter (did I forget to mention this dessert involves brownies?) seemed to work very well. I tasted it and it was heavenly. A perfect blend of bold sweetness, but rounded out with a darkness that is just, well, sinister. That’s the best way I can describe it. I’m not so good at the putting the words together thing. 😉

I realize I never mentioned what the dessert was. The recipe I found on Allrecipes.com calls it Krispy Brownie Delights, but that name seriously doesn’t do this creation justice. It’s just too awesome for words. So that’s what we call it! Too Awesome For Words.

*On a side note, my daughter actually doesn’t like it (what?!%?@!) so my husband has been calling it Too Awesome for Natalie. I reject that title because that doesn’t even sound like something you would want to eat.

So, batch #3 is chillin’ in the fridge. We will find out tomorrow how it turned out, and maybe we can get some suggestions, take up a vote, and find this delectable dish a proper name!

Cochlear implant, Deafness, Domestic Engineer, Family, Friends

Thursday Thoughts On “Normally” and Group Gatherings

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This week I had planned for things to return to “normal”, or a feeling of it at least. I’ll tell you how the week went and you can be the judge:

1) “Normally” I walk the kids to the bus stop. This week it was far too cold to make them walk, so Dad drove them on all but one day. (Walking through the snow really works those leg muscles!)

2) I “normally” eat breakfast, drink my coffee, and work on household chores after returning from the bus stop. This week I took a lot of back-to-bed “naps”, stretching my coffee and meals far into the afternoons.

3) I “normally” Skype with my mom every day. I was lucky to get in one conversation with her today (it was her birthday, so of course).

4) I “normally” have meals planned and grocery lists prepared for my husband every week. This week I had to throw it together at the last minute.

5) I “normally” feel like writing things that people want to read. Something about watching this puppy for “potty cues” keeps me on edge, and I haven’t felt any inspiration to write. I did write one paragraph for my book though. Actually, two, but the second one is only three words so it probably doesn’t count.

Oh, but tomorrow. I have a gang of girlfriends coming over to eat dinner and knit and crochet, and chat up a storm – though I know that won’t be like old times because I can only follow one person talking at a time. I’m excited to see everyone and am thrilled to be able to open up my home for this event. Even if I can’t follow all the conversations, it will be great to see everyone having a good time. Group gatherings are an area that I immediately started avoiding when I lost my hearing, so it has taken quite a bit of courage for me to step back into these situations. The fact that it’s in my home certainly helps, but also these are dear friends of mine who I know are sympathetic to my new challenges. I have wonderful friends.

So Friday night should be some good times. Saturday we have a belated family Christmas gathering, and Sunday I may possibly have a date with my husband. Then the kids have a couple full days and a half day off from school the next week. All that to say, “normally” is out the window. Forget normal, let’s just have fun!

Writing

I promise the book won’t be this boring

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“1/22/14: Housecleaning. So I did the dishes today, which mainly consisted of filling up the washer and running it. Then I wiped down all the counters. Then I took the stovetop apart and scrubbed it down. I didn’t find the missing rubber pad, but I did find some areas that needed more scrubbing. I used the green scrubby and the crumbs came right off. Then I wiped everything down again with the spray and paper towel. All nice and shiny. I may have missed some spots, but it’s much better than it was.”

Wow. I’m reading back through my journals from a year ago, in an effort to get inspiration and ideas for structuring the book I’m writing.

It’s not going so well.

There is a lot of mundane tedium mixed in, so filtering out the good stuff is proving more challenging than I had hoped. But once I get through reading everything I think I’ll be ready to form a thorough framework or outline for the book, and then I can just start writing. I hope, anyway. This is all very new to me. It’s very daunting, and I have numerous doubts that I can do this. But why not? Why not me? I’ve loved writing for as long as I can remember. This past year and a half life has thrown some major curveballs, and I’ve learned a great deal through all of it. So now I have something to write about. Something hopefully others will want to read. I just have to get the words out. One. Day. At. A. Time.

No, wait. You know what? Maybe I’m getting hung up on all this preparation – structure – outline crap. What if I just started writing? It’s worth a shot, right? Only this time I’ll leave out all the house cleaning details 😉

Family

Hot and cold and hot again

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Our furnace is working at the moment, but we’re keeping our fingers crossed. It had shut down again, so the men have been stuck in the basement tinkering with it for yet another day. Our friend, an expert in this subject, says it’s acting wonky, and he still isn’t confident that it will hold. We might end up having to replace the whole dern furnace. But, since it’s Saturday night, and suppliers for this kind of thing aren’t open, the only thing we can do is wait. So we are enjoying the balmy 68 degrees in our house right now, with our fingers crossed. Luke is sleeping in his boxers, I’m sitting in my recliner in shorts and a t-shirt, and the dog is no longer huddled desperately under Mike’s feet (instead she’s sprawled out near them).

At 10 pm I was remarking to Mike that I couldn’t believe it was only Saturday. It just feels like the longest weekend ever, and we still have a day to go. I’m just praying it’s a less stressful day. One can hope.

Family, Food

Lunch-No, Pee-No, School-No, Heat… YES!!

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First, let me tell you about the lunch I had planned to eat today. It’s something Mike came up with, and it’s super easy. It’s pasta (usually penne) with marinara sauce, Italian sausage, and green and red peppers, all topped with mozzarella and baked. Adding the peppers was Mike’s idea, and though it’s extra work, it’s totally worth it. The kids hate it, but It has become one of our favorite dinners. Mike buys fresh links of both spicy and mild sausage, so I make a spicy batch for him, and the rest is for me and the kids. We always have leftovers, which is part of the reward. So that’s what I was really excited about eating for lunch today. Only when I opened the container as I was walking toward the microwave, I dropped the whole damn thing on the floor. All of it. On the floor. And immediately after dropping the delicious pasta onto the floor, I dropped a big, fat f-bomb. You know the one. I try not to use it often, but situations like these call for it.

Now, onto the main topic of the day. It’s friggin’ cold in Michigan this week. I don’t mind the cold. I grew up here, it’s not a big deal. Unless, of course, your furnace dies as the sun is going down, and the cold starts invading your living space. Mike noticed the temperature on the thermostat was low and thought the air filter just needed to be changed, but upon further inspection discovered the problem was much more serious. From what he explained to me last night, it sounds like our house very possibly could have gone up in flames when he changed the filter. Thankfully it did not, but at midnight it was clear to him that something needed replacing, and would have to wait until the morning. So when we awoke this morning, the thermostat was down to 47 degrees, which only sounds chilly if you are referring to outdoor weather, but in your home it becomes quite a nuisance. We are used to 65. After an entire day of almost completely dismantling our furnace, Mike was able to get the parts he needed, and with the help of a friend managed to get it rebuilt. By 7 pm, we had heat. The temp is only up to 55 at the time of this writing, but it’s heading in the right direction.

As it turns out, the culprit was a heat exchange with two gaping holes in it. I know nothing of heat exchanges and furnaces, but Mike explained a bit and showed me the holes and they look scary dangerous. Those holes were potentially allowing harmful chemicals into the air we breathe. If that’s the case, I am so thankful that it’s fixed, and that nothing serious happened.

Oh, and this you will not believe. Surprisingly, on this crazy cold day surviving cooped up with blankets and space heaters, my dumb dog did not pee in the house. Not even once. She even led me to the back door a few times, waiting for me to let her out. We’ll see how she does tomorrow, but it’s a miracle, if you ask me!

So we are praising God for keeping us safe and providing us with the means to a solve a very serious issue with our furnace. And I am praising Him for helping my puppy hold her bladder.

Oh, and I just found out school is closed for my kids tomorrow. We’ve had sub-zero temperatures across the state all week, and it seems all the schools around us keeping calling snow days, but not us. No, we had to be the troopers. Well, it’s about time. The kids are already in bed so we’ll share the excitement with them in the morning.

That is all! Rest well and keep warm!!

Family

Dogs are dumb

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This puppy, who I thought was making good progress with potty training, peed in the house THREE times before 8 this morning. Like, between 7 and 8. If she’s going for a record she’s of to a good start.

Also, she’s bat-poop crazy. She was awake and whining at 4 this morning, three hours prior to the peeing marathon, but also not long after my husband had so graciously gotten out of bed to let her outside. But since he has a real job to go to, he woke me up to address the issue. Of course I didn’t have my ear on, and it was too dark to read lips, so I had to sort of guess that his forceful pointing towards the kitchen meant “get the dog!” (Note to self: assign the new family member an ASL name)

So between 4 and 5 I was up with Piper, trying to figure out what her deal was. Which basically involved supervising as she frantically sprinted around the living room, darting and barking at invisible foes.

She did calm down eventually, so I let her out one more time and put her back in her crate. This was at 4:45, and climbing back into a nice warm bed was heaven. Waking up again at 6:30 to get the kids ready for school was not. Every cell in my body was rejecting wakefulness. It’s a terrible feeling, but thankfully I will have plenty of time to make up for it during the day. Did I mention this puppy, crazy as she is, happens to be a skilled napper?

Happy napping, folks!