When the fatigue hits, it hits hard. But I’m not freaking out because my infusion is tomorrow, and then I should soon be feeling a bit more normal. MS sucks.
Category Archives: Multiple Sclerosis
Everybody does it
I drink a lot of smoothies. Just about every day, a smoothie packed with bananas, berries, yogurt, and spinach. Sometimes I’ll mix it up and add a little juice or milk, or vanilla for flavor. But always the banana, berries, and spinach. Because fiber, y’all. I need it. We all do, of course, cuz it’s an important nutrient, but I seem to be of the brand of human who needs a little help in the elimination department. Oh sorry, I didn’t warn you this post might be TMI for some. But seriously, folks, why does no one ever talk about this? Is it really that sensitive a subject? It’s not for lack of commonality, I assure you. I think it’s just because it’s icky. But I’m not afraid of self-disclosure (clearly, I have a blog for crying out loud) and I’m not afraid to share that I have trouble.
In fact, I’ve always had trouble, so I can’t really blame it on MS – although MS can certainly compound the issue. No, I remember as a young girl having to drink mineral oil and being given enemas. I still vividly remember drawing a picture of my poop once so I could show it to my mom, I was so proud. (You realize what we’re talking about now, right?) She doesn’t remember this, but I do. I don’t know if I should be hurt by that or thankful she didn’t save the picture!
So, back up to the smoothies. It’s really just been the easiest way for me to consume enough fiber. Berries are packed with it, as is spinach, which is virtually tasteless when you grind it up in the blender. Not that I mind spinach, I love it, just not with my fruit so much. My doctor recommends I consume 30 grams of fiber every day and OH MY GOSH, that’s a lot of fiber. So it’s been a struggle, but most days I hit the goal. And it has been helping, but not always enough, so once a day or so I go for a glass of your good ole prune juice. Yech. It’s the most unpleasant beverage I’ve ever consumed, but if you water it down it’s not so bad. It certainly beats mineral oil.
Oh! I almost forgot to mention the best part of this development. In recent weeks I was having a lot more balance problems than usual, and I was starting to use my cane on a pretty regular basis. It had not occurred to me that one issue could be related to the other, but when I started getting “regular”, my balance issues almost disappeared. I’m walking so well now! Now I know I could attribute this improvement to other things like exercise or the change in the weather, but the improvement was so sudden, like within the following day, that I have to give it credit. And the fact that my balance has remained well as I’ve been on this increased fiber – and resulting regularity – just confirms it for me.
I have so much more on my mind regarding food I want to share with you, but I’ve got a lot on my plate this week so it will have to wait for another day. Eat your fruits & veggies, people!!
**If you caught my puns, I applaud you. I love puns 🙂
2016 Hot Cider Hustle 5k
Oh boy. The days just keep moving along, don’t they? And I feel like I’m forgetting something, constantly. Sometimes I actually am. Usually I’m not, or I am but it’s inconsequential. But I do remember I said I was going to blog about something… the 5k I ran last weekend, perhaps?
Okay, yes. Last weekend I ran my second ever 5k, the Hot Cider Hustle. I signed up for this race back in August, with no other runners committed to running it with me. I had just decided that I needed to get it on the calendar, to give me something to work towards. And if anyone else ran it with me, even better. Then football schedules came out, and it turned out my husband and my son both would not be able to be there, as they had their respective football responsibilities. So it was just going to be me and my daughter. Now, I could get us there with the trusty Spec-Tran, but the problem would be that my daughter would be left alone while I ran the race. Not an option, as she is only 6. So a dear friend of mine offered to take us to the race and sit with my daughter while I ran. That is the first thing I had to be grateful for that day, but it gets better.
As we were driving to the park where the race was being held, I received a text from another dear friend, telling me that she was there, and had just signed up to run! She had run my first 5k with me, signing up at the last minute for that race as well. I love happy surprises. The first race I finished before she did, but only because she hadn’t even been training. This second race I was able to keep up with her new pace for most of the time, but towards the end as it got more crowded I wasn’t able to keep up with her and pass all the people safely. We plan to run more races together, and hopefully next time she won’t wait until the last minute to sign up!
And my most favorite part of this race? My big brother drove up to run it too. He told me 
just a few weeks prior to the race that he was going to join me, and I was both shocked and thrilled. I hadn’t even asked him to run. Why would I? He lives an hour away, and he’s a serious runner. He’s run marathons, so these 5ks are small time for him. I’m still not entirely sure why he decided to do the race. Part of it maybe was him missing the thrill of it, but I believe a bigger part was his desire to support his little sister (at least that’s what I’m telling myself). Of course he was a huge support to me, big time, and I’ll never forget it. Since he finished the race long before I did, he was able to run right alongside me during my final mile, coaching me to the finish.
This was definitely a difficult run, especially after I lost my friend in the crowd. I had to be sure I was on the right course, because there was a 10 mile race going on as well, and signs directing the runners. I only lost my balance once, and fell into the runner I was trying to pass, but I apologized and kept moving on. No harm, no foul. My brother suggested I get a bib to wear on my back that tells people I’m disabled, so that they don’t assume I can hear them, or that I can maneuver the way the other runners can. I think it’s a great idea, and I’ll definitely be looking into it for future races.
After I crossed the finish line, my brother came around to help me walk, because I really am a mess during those minutes following, when I’ve stopped running. The race volunteers were concerned, but my brother and friend (who had joined in helping me walk) assured them I was fine, that I had MS and I just needed to rest awhile. It may seem silly, but it makes me feel proud for people to know I have MS, and am running in spite of it. I may not run fast, but I’m running, and I’ll keep running until I’m forced to stop.
So, at the end of the day, I ran a very satisfying 3.1 miles in 38 minutes, 34 seconds, and was able to celebrate and share in that achievement with my big brother and two very good friends. It was certainly a day I’ll never forget.
My very first reader question!
An interesting question was raised here on the blog earlier this week, and it’s one I felt important to answer. The question? What is a cochlear implant, is it for MS, and does it help?
Well, first off – a cochlear implant is a device implanted into the skull near the ear in order to replace a malfunctioning inner ear. I can’t speak much for the inner workings of the ear, and all the moving pieces natural hearing involves, so I won’t. But the cochlear implant takes the place of the cochlea, which is the auditory portion of the inner ear (Thanks Wikipedia). Basically, the cochlear implant restores hearing.
It’s not a terribly invasive surgery, and most people are able to go home the same afternoon. After one is healed from the surgery, the device is activated with the use of a processor that sits on the ear and is connected via cord and magnet to the implant. It’s kind of fascinating, if you ask me. When the magnet and processor is not attached, I hear nothing. Actually, that’s not accurate. It’s only when the magnet is unattached that I hear nothing. Complete and total silence. But when it’s connected, I’m back in business and hearing again. The processors that hang on my ears look like your typical hearing aid, but they work in a totally different way. Hearing aids amplify sound, but cochlear implants take sound and process it for you, communicating that sound to your brain.
Cochlear implants are only used with people who are permanently profoundly deaf, and who are not helped by hearing aids. It’s nothing like natural hearing, and everyone responds differently to the implants, but in general it’s been a very good thing for me and pretty much every cochlear implant recipient I’ve spoken with. I was a late-deafened adult, meaning I lost my hearing in adulthood. I didn’t grow up in the Deaf community, so it was a severe loss, losing my hearing. I had almost no way to communicate. I was profoundly deaf. I didn’t just lose some hearing, I lost it all. So the cochlear implants have been a huge help for me. I’m able to have conversations with my children, make phone calls (with the help of a captioned phone, usually), listen to music, follow along with church worship services, etc. It’s been a wonderful gift.
I do have MS, and while some people with MS experience hearing loss, my hearing loss was not caused by MS. When someone with MS loses hearing, it’s usually in only one ear, and is not always permanent. I think I saw a statistic that said only 6% of MS patients reported symptoms of hearing loss. My diagnosis was Autoimmune Inner Ear Disease, which affects less than 1% of people with hearing loss (including Rush Limbaugh, who is also a bilateral cochlear implant recipient). How’s that for odds? Maybe I ought to buy a lottery ticket.
I hope that answers your questions, MSersgettingfit! I’m sorry if I went more in depth than necessary, but it’s a big topic for me. Hard to scale it down. I still feel like I left so much out, so if I only raised more questions, please don’t hesitate to ask. Actually, this goes out to all my readers: I absolutely love answering questions, so please feel free to ask away. I am at your service!
Facebook is reminding me
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
Monday, you are so good to me
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?
No excuses left
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?
Free lunch and learning
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.
Every day kinds of memories
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!
Fiery Feet
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.
Little M.S. Runner 