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.
Daily Snippets, Domestic Engineer

Checking the mail

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I look forward to getting the mail. Yep, I’m one of those people. I never used to be, but now that I’m stuck home most days, with not a lot to do other than boring domestic stuff like cooking and cleaning… well, sometimes it’s the most exciting time of my day. The sale ads come every Tuesday, and that’s fun to glance through casually before tossing them into the recycle bin. Most other days it’s the normal bills coming in, which I’m always happy to handle. I still love accounting, so balancing the checkbook and managing the budget makes me feel like I’m still using my skills.

This time of year is especially exciting because we have been receiving all the end-of-year tax forms. And I love preparing tax returns! I used to do it for others, as a side business, but can’t do it now due to my vision. There’s just too much room for error. If I screw up on my own return, no biggie, but screwing up on a client’s or friend’s return is just not cool.

So I’m raring and ready to go on our 2016 return, but we are missing two forms that had to be resent, so I’m anxiously waiting their arrival in the mailbox every day. I’m also waiting for my new handicap parking placard to arrive, since it’s expiring this year. Unfortunately, today was not the day for any of these items. Maybe tomorrow!

And now for your amusement, I’ll show you what my husband thinks of when he sees me run out and check the mailbox on a Saturday, when he’s actually home to see my excitement…

Mailtime!

Multiple Sclerosis

Follow up to the whiny post

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I’m feeling a little bit less whiny… a teensy less. I did get my eyes checked, and they were worse, as I had suspected. So we postponed my Tysabri infusion and instead got me set up for three consecutive days of Solumedrol, a high dose steroid that is given intravenously. This is a common treatment for MS patients when they have flare-ups of symptoms. I’ve had them before, and I’ve always responded well. So I wasn’t too worried about the actual treatment, but I was pretty devastated to be back in this situation. The MS flare-up. I had been doing so well, for so long, that I believe I got too comfortable. So I wasn’t really ready for this. But I suppose you never really can be ready for this kind of thing. That’s the cruddy thing about this disease, it’s unpredictability. But, with lots of support from family and friends, we got through the infusion part. Now I’m just back at home, with my routines, and taking oral steroids (Prednisone) to taper down from the high dose infusions.

I’m not crazy about the side effects of Prednisone, but I guess it’s a necessary evil. I do feel like my vision has changed already. I noticed Monday it felt like my visual field had opened back up a bit, at least up close. I still have difficulty recognizing faces from far away. I’ll go back to the neuro-ophthalmologist on February 17 and we’ll see what progress I’ve made. I’m hopeful.

So that’s my update for now. The Prednisone has me kind of moody, so I realize I’m lacking any real spark, but I’ll get it back – I promise! 🙂

Disability, Family, Kids, Motherhood, Multiple Sclerosis, Visually Impaired

One big whiny post

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Um… This week is starting out kind of rough. First of all, my monthly infusion is due, which means the last batch in my system is running out, which means I’m fatigued. I don’t know why it does this to me, because it certainly doesn’t flood me with energy when I get the infusion, but there’s no denying it. And knowing it’s coming doesn’t make it any easier. It still sucks, every time. It’s disruptive and discouraging and a constant reminder that yes, I am still disabled. The fatigue is debilitating, and there’s not much I can do to fight it. This angers me.

Also, I’ve been feeling lately, and especially yesterday, that my vision has grown worse. It’s so subtle that it’s hard to say for sure, but yesterday I was absolutely sure that the fog in my field of vision has closed in a bit more. This angers me too, and scares the effing poop out of me. I fear losing all my vision, I fear not being able to see my family’s smiling faces or the sun rising in the morning. There are so many beautiful things to see in this world and I don’t want to miss out on seeing any of them. 

So we are working on getting in to see my Neuro Ophthalmologist, and in the meantime I am trying ro enjoy what I still have and holding fast to my faith in Christ. He brought me through my darkest times and I don’t expect him to leave anytime soon.

The problem with all this, of course, is that life around here doesn’t stop to cater to my issues. The people still need to eat, laundry still needs to be washed, and the dog still needs oodles of attention. Last night my daughter spent the evening puking her guts out, and I was happy to clean up after her. Because I’ve got a tough gut and I can’t see the puke anyway. They point to where it lands, I take care of it. Cuz I’m still the mom, after all. And I’m thankful to still be able to be here for my kids, even with MS.

Some days (nay, weeks) I just don’t have the energy to be cheery in spite of the mess. This is one of those weeks. And it’s only Tuesday! Pray for my survival, would you please?

Funny story

I think it’s called the heeby-jeebies

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We stayed overnight at my mother-in-law’s house for Christmas, and the next morning she was showing me how to make biscuits. (My daughter was given a cookie cutter set for Christmas that included a biscuit cutter.) Well, I was excited to learn how to make biscuits, because I can really appreciate the quality of a fresh homemade biscuit – topped with homemade sausage gravy, of course. But then she started describing the part where you roll it in the flour or something, and that’s when she lost me. “Oh no, I can’t do this. I’m not gonna be able to make these.” I’m standing in the kitchen, trying my very best at hiding my discomfort, but ultimately giving up and just moving away.

I just can’t do flour. It makes a small sound when it touches things that only freaks like me can detect. It sends shivers running down my spine. Even the thought of the sound creeps me out. I don’t know why, but it does. It’s been like that for me for as long as I can remember. I met someone once who understood this, only it was not flour that got him – it was the color teal (The 80’s must have been torture for him). My dear mother-in-law, shocked into disbelief at my reaction, asked my husband, “Did you know about this?”

“Yep” he offers, “she also hates sand.” And chalk and powdered sugar. Oddly, the brown and white sugars don’t bother me too much. We’ll call those tolerable.

It’s funny that my mother-in-law has known me for 18 years and she’s just now hearing about this quirky aversion of mine. A well-kept secret, I suppose. I guess the cat’s out of the bag now. Just hopefully not the flour bag.

Deep thoughts, Family, God speaks, Holidays, Kids, Memories, Miracles do happen

The light in the darkness

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It’s Christmas Eve, and we’re all ready for Christmas morning with the kids. Breakfast fixings are ready in the fridge, gifts are surrounding the tree.
We went to church tonight and were reminded that Jesus came to be a light in the darkness. Then we drove around looking at Christmas lights, a tradition we’ve been doing since before the kids were even born.
And do you know, my 9 year old son made the connection between the sermon at church (which I thought he was sleeping through) and the decorative lights everyone puts up at Christmas? I don’t know for certain the origin of Christmas lights, but I think my son might be on to something. The lights we put up at Christmas are a representation, a reminder, that Jesus is the light in the darkness. That just blew my mind, to hear something so wise coming from his mouth. I was pretty impressed. And for sure, I will remember that connection and from now on our annual tradition of driving around looking at lights will hold much greater meaning for me.
Merry Christmas, and may you find the light in the darkness.
Holidays, Piper

Dog demoted

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Our dog, Piper, has been really great about not chewing things, generally. We stopped putting her in a crate a long time ago, trusting her to behave while we were gone. As long as we didn’t leave toys or candy out in plain sight, she was doing pretty well. That is, until we brought home this year’s Christmas tree.

I would come home after being gone for a couple hours and she would cower, knowing she had done something wrong. I would quickly look around, and eventually find the remains of a Christmas ornament or decoration. She destroyed ornaments that my kids had each made in preschool, which saddened me, and she came really close to destroying a couple ornaments I spent hours and hours cross-stitching. You have to understand that the ornaments on our tree are not there for decoration. Almost every ornament holds a memory for us. So I was not about to let this dog destroy our memories, one by one. To prevent her from destroying more of our precious memories, we relocated all the ornaments on the bottom of the tree to the top so that she couldn’t knock them down and chew them up.

It worked, in that she didn’t destroy anymore ornaments. However, it wasn’t enough. She was reminded that she really likes chewing stuff, so she found alternatives. One alternative, actually – my shoes. Now these were not expensive shoes, but they were useful to me. I wore them every day, except for that day of course – but that was only because I wore my snow boots – so I guess I’m in the market for a new pair of sneakers.

And, more importantly, Piper has been demoted to the crate when we leave her home alone. The crate we were using before was borrowed, so we had to go and buy a new one, but it’s cheaper than a new pair of shoes, and certainly worth it when you consider all those ornaments holding memories that cannot be replaced. Piper seems to be fine with the change, because she knows it makes us happy. As much as she loves chewing stuff, she really really hates it when we’re mad at her. This way, everybody’s happy. Let Christmas come!

Daily Snippets, Deep thoughts, Photos

A momentous occasion for sure

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Please ignore my awful complexion, I’m working on that. What I wanted to share with you here is that today I discovered my first gray hair. Do you see it? Right there on top, just bending towards the right? I wasn’t sure if I would ever notice my hair graying, because I don’t see colors well, and my hair is a version of blonde. My mom is a blonde and she still doesn’t have much noticeable gray hair.

So I’m surprised! I don’t know why this excites me really, I guess you could say I’m having a slow day for entertainment.

I think I’m “supposed” to dread the aging process, gray hair, crow’s feet, wrinkles, etc. But I don’t mind. I think with age comes experience and wisdom and personal growth, and those are all good things I treasure. So I’ll take it all in one big package and will hold me head high, thank you very much.

Family, Holidays, Memories
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I remember when we were kids (back before the internet) when you would take the Toys R Us ad and circle all the things you wanted for Christmas? Times have changed. Now my kids make lists – very specific lists – or they guide me through finding the exact items on Amazon. “Google it Mom, it’s a real thing. Just pull it up on your phone.” he says, of the bungee chair he wants for Christmas. It’s true, it’s a real thing.

I don’t remember every Christmas in great detail, but there are a few I can recall fondly. I remember the year I got a Cabbage Patch doll. When I woke up Christmas morning and looked under the tree, I knew it was there because they came in these distinctly shaped boxes. So unless you repackaged it, it was a dead giveaway. My best Christmas memories though are the times spent with my family. Waking up to Christmas breakfast, running around my Grandma’s house with all my cousins, knealing around the Christmas tree with my brother and sister. Just being together. That was the biggest gift. And I hope those are the memories our kids hold onto as well. Because that’s the stuff that lasts. Everything else wears out, fades away.

Of course Christmas is not all about the presents. We now, as parents, love to give gifts to our kids, and every year we manage to go a little bit overboard. Hopefully we are not creating spoiled children by doing so. Christmas is the celebration of Christ’s birth, so we think a lot about God this time of year, when we maybe wouldn’t have otherwise. And I believe God is the biggest gift giver. He loves to give us good things the same way we love to give our kids good things. And maybe He runs the risk of spoiling us, but He does it anyway, doesn’t He? As much as the commercialization of this holiday busts my buttons (lol), I can reconcile it in my spirit by remembering who we are modeling our lives after. It may sound pathetic, but I do feel that by giving to others – our kids, our extended family, friends, neighbors, etc. – we are modeling a bit of Jesus’ character. He gave His life, the ultimate gift. So would it be wrong to say we are honoring Him by giving to others? Maybe? Maybe. I don’t know…

 

 

Coffee, Daily Snippets

Lovely leftovers

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I still have some whipped cream left in my fridge from hosting Thanksgiving, and there’s no pie left to go with it. So I’ve been putting it in my coffee! I don’t put sugar in my coffee normally, but the whipped cream offers just a touch of subtle sweetness that’s not too overwhelming. And on a cold day with snow on the horizon, it really hits the spot!