Category Archives: Multiple Sclerosis

Cochlear implant, Daily Snippets, Multiple Sclerosis, Piper, Visually Impaired

Little-big victories

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I went for my six-month follow-up with my neuro-ophthalmologist today (that was a lot of hyphenating lol). After reviewing the results of my Humphrey visual field test (flunked with flying colors, you could say), the standard “look straight into this bright light while I breathe loudly near your face” test, and chatting with me for a few minutes, he was ecstatic. Like, over the moon happy to see how well I was doing. He said my right eye had definitely improved. A small improvement, but it’s an improvement nonetheless. That’s the right direction to go, you know? He was very happy to hear that I was running, and feeling good. Maybe he could even sense from the way I was speaking to him that my cognition has improved? I’m definitely more “with it” than I was when I first came to his office in 2013. He even commented that my hearing was improving, even though that isn’t possible post cochlear surgery, but I took that to mean he could tell I was comprehending speech better than before. So yay!

When he walked me out to the receptionist’s office after our visit he stood there, looking at me and said, “Now, you promise to give that husband of yours a hug from me, won’t you? You promise??” (He loves Mike, keeps telling me he’s a good man, which of course I know, but it’s still nice to hear) And I said, yes of course, but I want a hug too. So I gave him a great big hug. Then he looked at me again with this stupidly proud, fatherly-type grin on his face, nodded a few times, sighed loudly, and then turned and walked away. It was the strangest interaction I’ve ever had with medical personnel, but it was beautiful. While I don’t feel a whole lot different than when I saw him six months ago, he sees progress, and that’s good news. Lord knows I’ve had my share of bad news, and I’m always down for some good stuff.

Oh, and to top all this off, the dog didn’t destroy the house while I was gone! I’ve been leaving her out of the crate while I’m gone, for an hour or two at a time. This was the longest I left her out, but she did great! Didn’t chew anything up, didn’t relieve herself in the house, and she seems even more super duper happy when I come home. Now if we can just get her to stop barking at all the neighbors walking by…

Hearing Loss, Multiple Sclerosis

MS and Running

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This is in no way an “Official” post on what it’s like to run with MS, but the build up in my mind over the past couple weeks makes it feel like it is. I searched the internet in hopes of hearing from other runners with MS, but didn’t have much luck. Sadly, it’s probably not all that common. So I guess I wanted to share what it’s like for me, and if others find me and chime in, the more the merrier, right?

This whole running thing started more than a year ago, when we lived at a different house, in a different neighborhood, and the kids went to a different school. The bus stop was a 3/4 mile walk, so after the kids got on the bus, I would walk back home the long way, completing an almost two mile walk. It got me thinking that I could maybe walk 3 miles, or 3.1, which is equal to the popular 5k run. As soon as I verbalized this idea around my son, he was anxious to participate in a race with me. Now, his intention has always been to run a race, but I told him from the get-go that I wasn’t sure I could run it. The sweetheart he is, he said he would go at whatever pace I could. He just wanted to be with me.

See, my MS started with balance issues. I was falling a lot back then, and I still fall sometimes, or wobble when I’m turning my head. So I don’t trust my balance. To attempt running with poor balance seemed foolish to me. At the time, of course. Fast forward a little more than a year, and somehow I got it in my head that I could actually run. We have a treadmill at home, with handles for safety. I thought, “Why not try?” So I did. I downloaded a couch-to-5k program to give me some guidance, and I started training. You know what I found? I found that the intervals where I had to stop running and just walk briskly didn’t go so well. I actually did better if I just kept running.

But here’s the inside story, the way my body reacts to the running. In case you’re interested. The first thing that happens is that the ringing in my ears gets really, really loud. This tinnitus is something I experience 24/7, but it’s usually quiet enough that I forget it’s there. It’s just something you get used to. But after about 10 or 15 minutes of running, that ringing just cranks up to full volume. It’s how I know my body is working hard, I guess. And this actually has nothing to do with my MS, it’s just a side effect of my hearing loss. But I digress.

The second notable thing that happens to me is the foot drop. This is very common for people with MS. The Mayo Clinic describes foot drop as a general term for difficulty lifting the front part of the foot. Some whose disease is more progressed experience this all the time, or when they are experiencing a full-blown relapse. Mine shows up when I’ve been sitting for too long or am super-fatigued. And when I’m running, of course.  Now, when you can’t lift the front part of your foot, you often end up tripping on it. So when I’m running and I sense those toes starting to drag with each step, I have to really be careful to use all the muscle I have in that leg to lift my foot high enough to avoid tripping over my own foot and crashing head first to the ground.  The good news is that it’s only ever one foot at a time, but I never know which one it will decide to be on a particular run. I do know that it usually starts around the 2.5 mile mark so at least I can be looking out for it.

I’ve been training since early March, and by now I can run at least 3.1 miles. I run the whole way! No walking! Now I’m just working on increasing my speed. I’m pacing myself, but each run I push a little harder, run a little faster, and pray that it doesn’t kill me or send me into an MS relapse (I’m not sure that actually happens, but I plan to ask my neurologist). Overall my fatigue levels have stabilized, my blood pressure is strong, and I think I’ve even started building muscle. I feel stronger, inside and out.

My motivation started with just running (or walking) a race with my son, but it built into a more personal goal. Now I’m doing this for my health, and to give an emphatic “up yours” to this disease. I want to prove that MS doesn’t have to limit me. It’s a permanent condition, yes. I understand it’s here for the rest of my life, and someday it very well may take my legs. But not today, damn it. Today, these legs are still within my control, and with them I am choosing to run.

Our race is coming up on May 6, so wish us luck! And if you’re in town, come on down to the Mason State Bank and cheer us on 🙂

Daily Snippets, Deep thoughts, Disability, Multiple Sclerosis, Writing

How MS Defines Me

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I started this post three days ago, but didn’t get past the title. Now I’m deciding to continue with it, with the expectation that I can convey a clear and complete thought. Or maybe two.

I am fatigued. I am not handling it as well as usual, and I think that’s just because my running had given me a nice reprieve from the normal levels of fatigue. But having the kids home all week coupled with my MS medication running low (I get infused with Tysabri every four weeks), seems to have been too much on my body.

What bothers me most about the fatigue, at least this time around, is the effect it has on my cognition. I just can’t seem to make the connections, and even when I do, it takes an uncomfortably long time. So I’m awake, but I’m not really here. I struggle to finish sentences, I forget where I was headed within the house, I can’t put two and two together. And that’s frustrating, but I know this too shall pass. The kids go back to school tomorrow, I’ll go back to the infusion center hopefully Friday, and I will keep taking breaks when they are needed. And my family will be patient as always, they will pick up the slack where needed, it will be okay. We accommodate, together. I will get the rest I need. This is why I make the big bucks courtesy of Social Security, right? It will be okay.

MS is part of my life. It always will be, and I’m not sorry about that. It has taught me how to be patient and gracious, and how to laugh at myself. It has required strength I wouldn’t otherwise know I had. So yes, I guess you could say I am defined by my disability. I wouldn’t have it any other way.

Cochlear implant, Multiple Sclerosis, Partial Blindness

A little sense of freedom

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I’m trying to become a contact lens wearer. I used to wear them, years ago, but gave it up for some reason. So I figured it would be no big deal to join that club again.

I was wrong.

With my MS relapse and resulting vision loss in September 2013, I have a significantly unique challenge. While my left eye has the stronger prescription, the nerve damage left my right eye with a very small field of vision. My brain has adjusted since, so it doesn’t even pay attention to what the right eye “sees”. What normally happens when you close one eye is that everything you see shifts to the left or right, right? Well, that doesn’t happen with me. What I see with both eyes is exactly what I see with the left. Meaning my right eye is essentially blind. Where I’m going with this is, when I try to put a contact lens in my left eye, it’s jarring to see my finger coming straight at my eyeball, and it’s impossible not to blink. So I’ve been having trouble putting them in. A week ago Saturday I worked so hard to put them in, and then all day I was feeling frustrated with what I was seeing. I thought it was just because I was outside a lot, and I didn’t have the anti-glare feature that my glasses give me. That night when I went to take them out, I discovered there was no contact in my left eye. After feeling around on the bathroom counter, I found it. All dried up. I had to go back and get a replacement. Then this past Thursday when I took them out, I inspected them before putting them in the case, and noticed a small tear on the side of the left one. Strike two. I know I have to practice and find a system that works for me. The only trouble with that is that contact lenses are not really built for the level of practice that I am subjecting them to, apparently. Not to mention every time I drop the lens I have to fish around for it with my hands because even with the tint on the edges, I can’t see the lens because it blends in. I need high contrast.

All that to say, I ripped two lenses already, and was growing very discouraged. Because when the contacts are in, and I’m walking around sans eyeglasses, I feel so FREE! So uninhibited. It’s hard to describe the feeling, or rather the importance of the feeling. It’s like there is one less thing to worry about, if only for awhile. The literal weight off my ears is fabulous. The cochlear implants are there no matter what, so it gets crowded. With contacts, I can wear sunglasses come summer, I can run without having my eyeglasses slide down my sweaty nose, and I can swim with my kids and read lips and recognize faces!

I went back to the eye doctor today and she suggested getting some color contacts, which would be much easier for me to see, making the inserting process much easier and hopefully minimizing the risk of tearing the lenses. The only problem is that the colored lenses cost twice as much as the clear ones. That and the colored portion does seem to interfere a smidge with my field of vision. I’m wearing a pair right now with no prescription in them, just to try out.

So now all day I’ve been debating whether it’s worth the extra cost, and whether that smidge bothers me or not. I think the Smidge (I’m calling it that now, I may as well capitalize it) is very slight and I don’t really notice it once I get focused on other things. And after writing that last paragraph about all the benefits of contact lenses, I think I’m leaning toward going ahead and getting them ordered. I swear, I’m so indecisive at times I drive myself crazy.  But I’ll give it another day or two just to be sure. That would make Wednesday my deadline for making the decision. So there, Wednesday it is!

How’s that for letting you in on my thought process? There were other things I wanted to blog about but they will just have to wait for the next one. Happy Monday, y’all!

 

Health, Multiple Sclerosis, Piper, Uncategorized

When you realize you have the power to change

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In some of the circles I associate with, people with MS will often say, “I have MS, but MS doesn’t have me.” It’s a statement meant to convey courage and determination that MS will not keep them down. They are not willing to admit defeat. And while I’m not one of those who often repeats that phrase, I definitely agree with the sentiment.

However, I came to a realization about a month ago. In some ways, MS did “have” me. Sure, I still smile and make jokes, and I don’t complain much about the invisible symptoms I’m experiencing. But on some level I was still letting the diagnosis limit me.

I’ve never been a fan of running, but I do acknowledge the benefits of it. My siblings are runners, one cousin, a few friends. They all thoroughly enjoy the experience of it. Also, my son loves to run, and we’ve talked over the past year about running a 5k together. I know my body can’t run a 5k at this point, but I haven’t been training for it. Why? Because I was scared. Mostly scared of losing my balance mid-stride and falling flat on my face, but also afraid that on the last lap my nerves would decide to stop communicating with my feet and I would not only fall, but land myself in another full-blown relapse.

There are so many problems with this thinking. One, I’m letting fear make the decision for me. I don’t care for making any decisions out of fear, ever. Two, there is absolutely no record, that I know of, of exercise causing an MS relapse. It just doesn’t happen.

And I don’t know how I came to this realization exactly, I just remember that I did. And when I did, I got mad. But only long enough to let it motivate me to do something about it. So I decided to make a commitment to getting on the treadmill DAILY, and we would just see how it goes. Treadmill running is not ideal, but it works. I get to stay home, so I can run in my pajamas (and I do, believe me). It doesn’t matter what the weather is like outside, so there is no room for excuses there. And there are handles to hold onto in case I start losing my balance. It’s a win all around.

I’ve been running for 3 weeks minus most of last week (self-diagnosed bronchitis) and I’m feeling stronger already. My energy level definitely feels more balanced than it was. Also, I’ve lost 3 pounds I didn’t expect to lose, so that’s an added bonus. Love it when my pants fit better! I’m on a couch to 5k program. It’s supposed to be 3 times per week, but I’m doing it every day because I know it would feel like I’m skipping a day and then I would just lose momentum. So that’s victory #1.

Victory #2 involves the training of our dog. It’s actually a lot of little victories, so I’ll save that explanation for another post later this week. I promise I’ll try to make it sound as exciting as I feel. I guess if you have any idea how much I have hated this dog (but don’t anymore), you will be able to share in my excitement. So stay tuned, folks! I’m still here!

Books, Daily Snippets, Decluttering, Housekeeping, Multiple Sclerosis

Permission to purge

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“To truly cherish the things that are important to you, you must first discard those that have outlived their purpose.”

The Life-Changing Magic of Tidying Up: The Japanese Art of Decluttering and Organizing by Kondo, Marie
http://www.amazon.com/dp/B00KK0PICK

I am loving loving loving this book and what it is teaching me. I am gaining some really fresh insight about what things to keep, what to discard, and why. I have done a great deal of de-cluttering around the house that turned out making our move to this new home much easier. I started the purging process long before we even knew we would be moving, but I’m so glad I did. The packing and unpacking would have been a major cluster****. However, I am still frustrated on a fairly regular basis as I come across things that lack a home and/or take up space. But this woman who has mastered the art I strive for has given a beautiful explanation for my frustration. Why am I so irritated? Because these things don’t bring me joy. They have served their purpose and it’s okay to let them go.

It’s okay! Goodbye to the labelmaker that no longer connects to my computer. I made plenty of labels with it. I can say goodbye to that tailored green jacket. I wore it when it fit post-pregnancy and I don’t plan to be that heavy again. I can even say goodbye to the clown afghan my grandmother crocheted for me when I was a little girl. I enjoyed it, loved it nearly to pieces, but it’s time to let it go. The memories will remain. Ah, this is such a freeing feeling for me. I can discard things and forget about feeling guilty. I can’t wait to get to it.

But for now, I’m honestly still recovering from having the kids home for Christmas break, so I’m tired. And it’s flipping cold, so that doesn’t help. My legs are not cooperating, because the extreme temperatures and MS do not get along. So well just have to table this discussion for later. Such is my life, and we keep moving on. Walk on, my friends, walk on.

Daily Snippets, Family, Multiple Sclerosis

Hot booties n stuff

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And just like that, a week went by with no writing. I was super fatigued last week, but I received my Tysabri infusion for MS on Friday and I’m already feeling better. I have big plans to catch up and regroup starting tomorrow. And bonus! Since the kids are on winter break they can help keep me on my toes, so to speak.
Speaking of my toes, this cold weather seems especially troublesome for them this year. When my feet get even a smidge chilly, it causes severe nerve pain that radiates from my toes to my upper calves. Makes walking frustrating, but not impossible. I rest a lot. Wear many pairs of socks. Sometimes wear the microwavable Hot Booties my mom sent me last year. I’m getting a lot of crocheting done as an unexpected upside! 🙂

Daily Snippets, Multiple Sclerosis

One day at a time doesn’t always work

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You’ve heard people say it, “just take it one day at a time”. It’s a way to give reassurance when life overwhelms you. And generally, I would say it helps, to break big things into smaller things.
But not always. I hate to admit it, but MS fatigue really kicks my butt sometimes. This past week or so has been yet another of those times.  I struggle. Not only with keeping up with my routines caring for the house and feeding the family, but also with the most basic of self-care tasks like making a sandwich or taking a shower. It’s just utterly draining.
So here is what I decided to do with today: rather than one enormous day at a time, I took it 15 itty bitty minutes at a time. I just set a timer and when time was up, I examined how I was feeling. Some times I felt good enough to go another 15, and other times I determined I needed to rest – but only for the allotted 15 minutes.
You know what? It worked well! It helped keep me from retreating into a slump or getting distracted and losing track of time. And best of all, I stayed to feel useful again, in spite of the fatigue.

Deafness, Domestic Engineer, Food, Multiple Sclerosis, Visually Impaired

Why the crockpot is my new best friend

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This is not to diminish the value of my friendships with real people, because I have a lot of pretty amazing friends, but by golly, I am really loving my crockpot this year (I’ve had it a whopping 16). The internet holds a wealth of information and ideas for what you can make in these things, and I’m finding plenty of healthy, tasty meals.

But here’s why I’m really learning to love the crockpot – it allows me to work around my fatigue and still manage to feed my family. The fatigue that MS causes has really been kicking my butt hard this past month, and by 1 pm (even after a morning nap) I’m pretty slogged (not sure if that’s a word but it sounded good). By 4 or 5 pm, after getting the kids from the bus stop and handling the flurry of that excitement, I’m close to non-functioning. Which makes dinner prep rather difficult.

Case in point: It is almost 7 pm. We ate dinner already (tacos!!) but I’m feeling the munchies so I went into the kitchen to get a bowl of cereal (granola, actually). I pulled the granola from the cupboard, the milk from the fridge, and set both on the counter. I then got a bowl and poured the granola into it, and proceeded to put both the granola back in the cupboard and the milk back in the fridge.  Notice anything missing?? I walked all the way back to my bowl of granola, ready to eat, and discovered I had forgotten to pour the milk.

It’s really frustrating, feeling so… I don’t know, lacking in ability to perform simple tasks, I guess, and pretty damn powerless to change it. But I’ve been faced with lots of things, big things, that I cannot change. If I have learned anything from these big, unchangeable things, it’s that I do still have a choice. And that choice is to accept it, adapt, and move on.

The crockpot means I can prepare a delicious, healthy meal for my family early in the day, before I get fatigued. I refuse to give up and feed them frozen pizza every night. So, for what it represents and for what it allows me to do, the crockpot is my friend. The thing is old enough to drive now (a wedding gift), but I suppose using it for a ride to the store would be asking too much. We’ll just stick to food preparation for now 😉

Books, Friends, Multiple Sclerosis, Photos, Visually Impaired

Painting

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Oh my goodness. This past weekend was a whirlwind. Lots of fun activities going on. I can’t quite process it all. In fact, it has sort of left me in a State of Funk. (Also, I just finished reading The Giver, so I’m tempted to capitalize the Common Words. My apologies. Do you accept my apology, Giver Fans?)

Anyhoo, Saturday we went to Luke’s soccer game, and Grandpa took us out for lunch after. Natalie was wanting to do something special with me, so we went to this local “paint your own pottery” place called Playing Picasso. We had so much fun! Natalie was ecstatic, and had so much fun that she has decided she would like to have her 7th birthday party there (because her 6th is already planned). Of course she only gets one birthday per year, so she has the next three all planned out. This year is laser tag, next year pottery painting, and the year after that roller skating. Well, at least we have time to plan lol. Anyway, I really liked this place, and I’m already thinking I would like to come back on my own and paint some stuff. Maybe I’ll  even throw myself a party one of these times.

On a normal day, the pottery painting was A LOT of art for this girl here, but I didn’t stop there. No sirree, I had plans to go to Painting With a Twist with a friend that evening. This was a completely new experience for me, but I had heard from other people that it’s a lot of fun. They get 20 or so people set up at tables, with brushes and paint, and then an instructor guides everyone through painting a masterpiece. After 2 hours, you have 20 matching paintings (in theory) and they take a group photo while everyone stands proudly holding their finished paintings.

I was a little hesitant to do this, knowing I would have trouble seeing and hearing the instructor, but we had them place us right up front. This way we had a better chance at reading lips, and could readily ask questions as needed. I ended up asking a lot of questions, mostly relating to which color was which on my palette. My vision is bad, but not in the way most would think. I have a much smaller field of vision, but within that field I am able to see 20/20 with my left eye (20/40 with the right). Colors on the other hand, are hard to distinguish. So most of my questions were relating to the colors: which one is blue? Is this one green? Can you show me where I just painted the white circle? White on white is impossible for me to see, and that happened to be the first thing we did. Oh, I could have freaked out right there, but I decided not to. I was determined to have fun, no matter what, and that is exactly what I did. Even when I lost my balance trying to reach the top of my canvas and almost knocked over the entire effing table. Yes, I lost it. Fell right over onto the table. But I quickly recovered, exclaimed “oops, I forgot I have poor balance”, laughed at myself, and moved on.

At the end of the day, I went home with some fun memories and a painting that turned out to look pretty darn cool!

Painting With A Twist
Painting With A Twist

It may not seem like a big deal for most, but it was to me. I am still, two years later, adjusting to life with hearing and vision loss. I am almost daily faced with tasks that are new to me. New to the NEW Me, not the Old Me. And that can sometimes be a smidge frightening, but I am also daily making the decision to ignore that fear and just keep moving forward. Because today is a gift, and I refuse to waste it being afraid. Do you hear that? Life is a gift! Open that bad boy up!!