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.
God speaks

Who’s leading whom?

1 Comment

Our pastor gave us a great analogy at church yesterday. He has been doing a series on hearing from God, and yesterday he said that as we are listening to what God is saying, we need to be willing to follow His lead. To illustrate his point, he told us about a trick he learned from a fellow dog lover. The problem was that on walks, the dog was always pulling on the leash and trying to run ahead. The advice? Never let the dog be the first one out of the house. That way they know who the leader is, and it’s NOT them.

I was slightly blown away by this story for two reasons. One, it makes so much sense, I can’t believe we hadn’t thought of it ourselves. I was immediately anxious to try it with our dog (which I did today, and it was surprisingly successful). Two, how many times do I rush out the door ahead of God in my life? How many times in a day?

I’m constantly making my own decisions. Many of my major life decisions were made without much, if any, input or guidance from God. Sometimes I wasn’t listening, but other times I wasn’t even asking. This is not to say I never ask, or never listen. Many times I do. And those are the times worth mentioning.

This blog, for example, wouldn’t be here if it weren’t for God’s pressing on my heart and clear message to resume writing (I first started blogging in 2004. Wrote my own html!).  Dating and marrying my husband only happened after countless hours of heartfelt prayer. I was so fed up with dating by the time I met Mike, I wanted to be absolutely sure that he was part of God’s plan for my life before I would make any commitments. And here we are, 16 years later, still madly in love.

I firmly believe that when we let God go first, by letting Him lead our journeys, we will be blessed. Not that there won’t be hard times along the way (Piper and I had a few missteps with puddles and such), but overall it makes for a more peaceful, joyful, and rewarding trip. As I am encouraged to let God lead the way in my day to day life, I encourage you to do the same. Let’s just see where He takes us!

Disability

Planning ahead

4 Comments

This Spec-Tran paratransit service has been a huge blessing after just a few days. I had a doctor’s appointment on Monday, which resulted in another appointment for today, and another one in a few weeks. Also, I have two doctor’s appointments next week. And none of this has required my husband to take time off of work. Hurray!

I’m learning quickly how it all works. All of the scheduling, confirming, and canceling of rides can be done online. Also, I’ve already emailed questions to customer service and was very pleased to have prompt responses.

Today I learned an important lesson: use the restroom before you are picked up. It’s not such an issue when they pick me up from my house, because so far I have been the only rider on those trips. It’s the rides going home that are more unpredictable. Especially if you are being picked up near the hospital, which is surrounded by medical offices. When the van arrives, it could be holding up to 4 more passengers, all of which may be getting dropped off at their homes before you. So you really have no idea how long you’ll be in the van once you’re picked up.

Today was a problem because my office visit/procedure required me to fill my bladder to the rim. And while I tried to empty it completely before my ride came to get me, I also made the poor choice of purchasing a large coffee at the cafeteria of the building I was in. I thought to myself as I was waiting for my ride, “Maybe I should go again, just to be on the safe side”. But then I was afraid I would miss my ride, so I ignored that wise thought. But then it turned out that my ride was running 15 minutes late. So by the time it came I was pretty ready to go, but thought I could hold it.

I was wrong. Very quickly, I began to be in some serious pain. After some bumps and turns and one more stop, we dropped off one woman at her house, and before the driver could close the door to the van, I looked at her with pleading eyes and whispered loudly, “I desperately need to use a restroom!” And she said, “No problem, we’re headed back to the hospital now”. Relieved (well, almost), I held it until the next stop. Which was not actually the hospital, but across the street, at the building I was just picked up from. Because she was dropping another woman off. I find this rather ridiculous, but I’m not complaining because I made it to the restroom without soiling myself, and I didn’t feel like I was inconveniencing anyone. Too much.

Altogether, the total travel time was around 45 minutes and only cost me $2.50. Not too shabby. Piper sure was happy to see me, as she also had a desperate need to relieve herself! 😉

Family, Food

It’s Mom and Dad’s birthday!

2 Comments

Today was my birthday. It was also my husband’s birthday (he’s one year older). I am now 37. I know once you’re in your late thirties, birthdays aren’t such a big deal anymore (heck, anything after 21 is pretty dull), but I still like to make a big deal of it. Because what better chance do you have to celebrate your life? Not to mention our kids think it’s pretty neat that they get to celebrate both parents’ birthdays on the same day.

My son and I have a mutual love for all things breakfast, and he is caring and thoughtful so he asked me what I wanted for breakfast on my birthday (kids also happened to have a scheduled day off today). I told him one of my favorites is waffles with whipped cream and strawberries, so he excitedly declared he was going to fix breakfast for me. Eggo waffles are easy to make in the toaster, and he assured me he could cut the strawberries all by himself. And sure enough, at 7 am this morning he was waking me up to eat. We had a little trouble with the whipped cream canister, but it was still delicious. And the smile on his face was priceless. It gave him so much joy, to be able to do something all by himself. For me. What a kid. I am so blessed.

The kids and I pretty much relaxed most of the day, with the exception of our trip to the Secretary of State. I needed to apply for a state ID card and cancel my driver’s license. That didn’t go quite as well as expected, as I had to go back home and get my birth certificate, but it still went better than it could have. Once I was there with the proper documents, it was a quick process. They took my money and my picture, and sent me on my way. I’m glad to have that done. No more valid driver’s license for me.

Since it’s also my husband’s birthday, I wanted to be sure to do something special for him too. The plan was to make his favorite dinner, penne sausage marinara. It was delicious, as usual, and we have plenty of leftovers for tomorrow’s lunches.

Yesterday I had a doctor’s visit, and tomorrow I have another one, so it was nice to have this one day in between to break up the monotony. It was definitely a day of celebration here. Another year in the books. A rough year, but we made it through. I look forward to the next one, and have high hopes that it will involve lots more relaxing than the past.

Uncategorized

Frankie says…

Leave a comment

Lately I’ve been struggling (and this time I mean it) with severe anxiety and worry and irritability. In short, I’ve ben in perpetual “Bitch Mode”. I’ve been on edge constantly, and the slightest misstep, accident, or loud noise can set me off. It’s not fair to my family, and it’s no way to live.

Bitch Mode ends today.

Not that it won’t ever creep back in, but today I am deciding that this state, being “on edge”, must end. And that I am the only one who can make that decision.

For one thing, it’s kind of childish to have all this anxiety over trivial things like a puppy peeing in the house or children spilling sugar on the floor. Because there are people suffering and dying all over the world. That’s just a really big thing that can’t be solved, but it adds perspective at least. Second of all, life is precious and if you’re busy worrying about trivial things, you are not enjoying and being grateful for what you have. I have these “problems” because I have a puppy and two beautiful children. Those are things I would not change. Therefore, I choose to be grateful, not hateful (see what I did there?). Just pause, breathe, and live in the moment. If something is stressing me, I’m going to stop and ask why, and if I can’t come up with a good reason, then I’ll just have to let it go and move on.

What does this all come down to? Me, learning how to relax. To really, really, RELAX.  This is something that does not come naturally to me, and I’ll likely have to go through this process again. But I suppose that makes sense. The prefix of the word is “re-“, which indicates repetition. Again and again and again.

Pull up a chair,  we may be here awhile! 😉

Multiple Sclerosis

Fatigue

Leave a comment

Fatigue is hard to describe, but it is very, very real. I would say I struggle with it, but there isn’t much struggling going on. I just don’t have the energy. So, I live with it. I manage.

Thankfully, it’s not all the time. It comes and goes on a pretty regular basis, however. So I am always hopeful that it will go.

Here’ s what fatigue looks like here in my world: I wake up at 7 to help get the kids ready for school. On days when it is not below freezing outside (which hasn’t happened in a minute), I walk them to the bus stop. After the bus comes, I walk back home. I slide into my warm bed and let my mind race until I drift off to sleep. Because my mind doesn’t seem to reach the level of fatigue that my legs do.

I sleep for a good three or four hours, waking up slowly from some weird dream I won’t remember three minutes later. I lie there, willing myself to get up. When willing doesn’t work, my bladder is more convincing. I drink a lot of water.

See, my fatigue generally seems to be in my legs.  They just get feeling so heavy. It takes more effort than normal to move them around. I’ve had full-blown MS relapses where I couldn’t lift them at all, so this leg fatigue is sometimes worrisome. There is always the possibility that I will go there again. The nerves that control these legs are scarred, so they’ll never be right.

However, if I can get to where I need to be, and can sit there, I do fine. I can write, read, crochet, fold laundry even, all while sitting down. The only things I have a hard time with are mostly in the kitchen (dishes, cooking). I remember my grandma used to have a tall chair/stool type thing in her kitchen, and I always loved sitting on it as a kid. Maybe I can get one of those for my kitchen. Just something to allow me to sit up high enough to reach the counters comfortably.

Fatigue is when you wake up from a 4-hour nap and you are still tired. Fatigue is wondering who strapped lead bricks to your slippers. Fatigue is getting up from a nap and just wanting to go back to bed. Fatigue on days like these is asking, “Where is my motorized scooter?”

Coffee, Domestic Engineer, Family, Food, Friends, Housekeeping, Piper, Writing

My Comfy Writing Spot

2 Comments

Not sure what to write about, but I’m in my little comfy spot in the kitchen. In the corner next to the window, surrounded by shelves and with Piper puppy sleeping peacefully in her crate at my feet. And hot coffee at the ready, of course.

The exciting point of my day may be when the mail is delivered, but probably not. I already received what I was waiting for, which is the Spec-Tran approval I blogged about last night.

When I’m bored like this it’s nice to goof around on Facebook. A friend announced she found the best granola, so of course that sparked a lengthy comment thread. The food posts always do.

This has been a wonderfully uneventful week so far, which I much appreciate after last week. Last week was brutal. All the sickness and the cold. Kids home for the better part of the week, which I should love, but.. I was (am) feeling pretty fatigued. And throw a four-month old puppy into the mix? Just a little more than I can handle. And now hubby sounds like he is developing what we all had. That was inevitable, I suppose.

So when life has slowed down what do I do? I nap, first and foremost, but then when I feel mostly rested I clean. Dishes, laundry, floors, etc. It’s all never-ending. Meaning you are never “done” with laundry or dishes or cleaning floors. These are things that are constantly in progress.  Once I realized that fully, I stopped putting them on my to-do-list. It seemed silly to keep crossing them off only to put them back on again. So now my to-do list consists of more irregular things like paying bills and clipping my toenails.

I would really like to get back to writing that book. The process (which honestly hadn’t really begun) got halted when we all fell ill. And now I need to get back at it. To be honest, I feel extremely inadequate at this whole book-writing-thing. Am I even doing it right? I’m just writing, hoping it turns into something I can have published so that people can read it. But publishing, well that’s a road I have not traveled and have no clue how to find. Yet. Let’s write the book first. And this corner spot in my kitchen is the perfect place for it.  As long as Piper complies, I could make this a daily ritual. Sitting here, sipping my coffee, tapping away at the keys. That sounds like a Happy Place if you ask me.

Now, enough rambling for me. I will let you go. I have words to write!

Disability, Driving, Low vision, Multiple Sclerosis, Partial Blindness

A glimpse at regaining independence

2 Comments

I received approval today to use the paratransit service, and I am beyond excited. The service provides people like myself with rides to pretty much anywhere in the city. All I have to do is schedule the pickup within 24 hours, pay the fare, and off I go! I can apparently schedule online, which I tried already for two of my upcoming appointments, and I’ll probably call tomorrow to confirm that I did it right.

image

No more pulling my husband out of work for doctor’s appointments, dragging him and the kids out at dinner time for my support group meetings, and who knows what else? I can go on shopping trips, get groceries on my own (up to 8 plastic bags), even take the kids to the library or the museum on days off! Just dreaming of the possibilities is more excitement than I have had in a long time.

Be thankful for the independence you have, because it can be taken in a heartbeat. My optic nerves were damaged as they are in a matter of weeks. I used to enjoy taking trips, sometimes just driving for the fun of it. The second to last time I remember driving (and enjoying it) was when I went to the abbey for a weekend getaway with my sister in august 2013. Even then I should not have been driving. A week later I drove my kids to their first day of school, with one eye closed to reduce the cloud in my left eye’s  field of vision, scared out of my mind and feeling reckless and over the top stupid for putting my children’s lives at risk. And that was my last time driving.

So there goes my Nascar dream. Is there a competitive arena for bumper?

Okay I got off track, didn’t I? Here’s the lesson: be thankful for your independence, whatever form of it you have. It is a gift.

Uncategorized

Change and Control

Leave a comment

This is all so so true, and truth my friends and family all try to convince me of, only I’m stubborn and I forget and revert to old negative guilt – ridden patterns of thinking. So I am sharing these profound words, both for me and for my readers. I hope to return to writing this week. Lots of thoughts floating around. Lots.

hearingelmo's avatarHearing Elmo

change for the better

I’m not a big fan of change. So when faced with a year that is sure to be chock-full of change, I can feel a little overwhelmed. Ok. That’s actually not true.

I can feel freaking terrified, sick to my stomach, near panic attack, bite my nails to the quick, SOMEONE LET ME OFF THIS MERRY-GO-ROUND called life screaming, “abandon ship! abandon ship!”

I’m not even a spontaneous person. My family knows not to ever throw me a “surprise” party. To me ordinary is extraordinary. I just hate change. For me, it’s all about control. That’s right. I’m a bit of a control freak. There is an upside to being a control freak. I am very organized. I’m punctual and responsible. There are, however, all kinds of negative things that come from being a control freak and refusing to accept change too.

I had fairly significant OCD tendencies throughout my…

View original post 1,139 more words

Photos

Interesting holes

Leave a comment

I know. Holes are not very interesting. My son and I went to see a Christmas play years ago about holes. Someone stole all the holes. Donut holes, holes in straws, stuff like that. It was quite a problem for the elves (Christmas elves, of course).

I have this thermal shirt my sister bought for me years ago, with Rocky on the front, so of course I love it. And I have worn it so much, I have lovingly worn holes in the sleeves:

image

It’s oddly comfortable, like a cozy little home for your thumb. Which is why I’m amused and only partly surprised to find these SEWN INTO my brand new sweater:

image

And that is all for today. Sickness abounds in our home. Until next time, may you be well and may your thumbs be cozy.

Anemia, Disability, Multiple Sclerosis

Three units short

1 Comment

I went to see the hematologist today.  He seemed pretty confident that my anemia is a result of many years of horrifically heavy periods. I’ll spare you the details,  but will say they must be cause for concern if they have led to permanent loss of red blood cells.  As I was educated today,  those are the ones you need for energy,  and I happen to be three units short.  A healthy person should have at least twelve,  and seven is real bad.  I have 8.7.

Of course,  I have been taking iron pills for a couple weeks now, so it’s possible that number has come up.  They took more blood today to see.  When I told the doctor I was taking the iron pills with my meals because they upset my stomach, he didn’t seem very optimistic.  He said it’s best to take them on an empty stomach so the body absorbs them before they are digested. I’m not real crazy about that,  but if that’s what it takes then I guess that’s what I’ll do.  Worst case scenario, I’ll have to get the iron via infusion, but I’m a regular at the infusion center so that doesn’t bother me.

I should hear back from the doctor with the test results and his recommendation for treatment within the next day or so. Beyond that,  I’ll see the hematologist next month for follow-up and more blood work. He wants me to see my gynecologist as well to see if we can get those monster periods under control. (Mom, don’t say hysterectomy.  I know it’s a possibility.)

I was remarking to Mike while we were waiting that I don’t think I would know what to do with myself if I were healthy.  It’s just become such a normal thing for me,  to be dealing with health issues. But – with God’s strength I am still here, still living, still thriving, and still finding joy in the simple things. Still Mindy.