Last night I stayed up way too late watching Pretty Woman on tv. Because I don’t know why. Because I had recorded it, and then started watching it not being entirely aware of the time, and then not being able to turn it off in the middle. Because you’ve gotta finish what you’ve started, right? I won’t get started on what a classic, feel good movie that is. It just is for me, and I don’t care if you judge me for it. Julia Roberts is just genius in that role. That’s all.
Anyway, so I was up way too late, and then had to get up early this morning to wake my daughter to get ready for the second day of horse camp. Then, even though I kept telling myself I was going to go back to bed, I just sort of kept moving on with my day. Luke and I rode bikes to get lunch at Taco Bell, my vitamins from Rite-Aid, and then ice cream at Sweet Sensations. It was a great afternoon, and then I thought maybe I would catch a nap before Natalie got home from camp, but I just, well, didn’t. Then I made dinner for the family and now I’m sitting here wondering when I’m going to hit that wall of fatigue. Yet, it just doesn’t seem to be coming. Hallelujah, praise the Lord, I’m operating like a normal healthy person!
This may be the healthiest I have ever felt. I don’t even remember having this kind of energy when I was in my twenties. I’m sure I did, I just don’t remember it, ha! So I’m writing this down so that I can remember how I feel and perhaps what I’m doing to feel so good. I believe it’s all the healthy things combined that work together to allow my body to operate at its best. Staying active with running, cycling, and walking. Eating my fruits and veggies, taking my greens daily, drinking lots of water. Even the celery juice I’ve been drinking every morning seems to be having a positive effect on my sleep quality, somehow. I know the celery juice is a fad right now, but you never know, this might be one that sticks. We shall see. But all the exercise and the healthy eating (with itty bitty cheats here and there) is really working.
The best part about feeling good is that I am feeling confident about the upcoming commitments I’ve made: leading a bible study, a discipleship group, and a Financial Peace class. I’m not afraid that it will be more than I can handle, or be too much to take on as a person living with MS. I do realize that none of this healthy living makes me immune to a relapse, so I’m keeping a level head about that, but I’m praying that all this healthy stuff I’m doing will make a relapse far less likely. I’ve always said I don’t want to let fear drive my decisions, and that applies here. I can’t say no to these exciting opportunities to serve God for fear that I’ll relapse. I’m trusting that He’s the one that gave me these desires and that He’s leading me down these paths, and if that’s true, He’ll take care of the details. M.S. is no match for my God!
Today was a really great day. Nothing out of the ordinary or spectacular, it was just a good day, so I wanted to share before I head off to bed.
The kids and I went to church this morning. Hubby was at a shooting competition so it was just the three of us. We had been preparing to ride the bus, but were able to secure a ride with the pastor’s wife at the last minute. So while we were a bit excited about doing something new by riding the fixed route bus, we were thankful we didn’t have to get up super early to catch the bus. We’ll hopefully try again on another day before the summer is over.
Church was great, as usual. I love my church family, because they are just like that: family. I was able to have a bit of time after the service to catch up with the some of the other women and invited two of them to BSF in the fall.
The afternoon was spent relaxing, having lunch with the kids, chatting with my sister, and doing a bit of bookkeeping for the church. By the evening, after dinner, I was feeling pretty sluggish and the sun hadn’t set yet, so I threw on some running clothes and went for a quick two miles around the neighborhood. I’ve been doing a pretty good job with resting my knee and doing the exercises the doctor gave me, and tonight’s run really showed me that it’s paying off, because I only took a few brief walking breaks and I had no knee pain throughout the run! Even after I got home I didn’t feel any pain. Not only that, but my pace was pretty strong for the time I was running, at around 11 or 12 minutes, which is pretty fast for me. I usually average closer to 13 minute miles. So I was pretty ecstatic about that run, and it really gives me hope that I’ll still be able to complete the half marathon in 56 days!
I’m excited about the upcoming race, but I’m even more excited about a lot of leadership opportunities I have coming up. Leadership is not necessarily my comfort zone, but I feel like God has really been working on me in this area, and helping me to step out of my comfort zone little by little. I can still be my introvert self and interact with others. I really enjoy getting to know people and hearing their stories. In the fall I’ll be leading a Bible Study Fellowship group, a discipleship group through my church, and Financial Peace University. That sounds like a lot, but I’m hopeful I’ll be able to keep a good balance and manage my time well enough to handle it all.
Shifting gears here, but I recently saw the dermatologist and I thought it was just going to be a follow up to get refills on the antibiotic for my rosacea, but the doctor I was seeing left the practice so I was seeing a new one. Not new to the practice, just new to me. I was very reassured from the minute he walked in the room because he actually examined my face under the light, and the last doctor never did that, which I always thought was odd. This new doctor is changing up my medication a little bit and putting me on something stronger, with the hopes that eventually I won’t have to take the antibiotics. He also gave me a prescription for a cream that should help the specific problem areas on my face. So that was a really positive visit and I went home feeling hopeful that we can get my face cleared up even more.
So the last couple weeks were filled with a couple doctor’s visits, my monthly Tysabri infusion, and lab work to make sure I can still take the Tysabri. Then in a week or so we go to the dentist for cleanings, and take the kids to the orthodontist for evaluations. Not exactly your idea of summer fun, but you gotta do what you gotta do. Being healthy is super important to me because if I didn’t have this energy, I wouldn’t be able to do any of the volunteering that I’m signed up to do. So I’m staying focused (i.e. mildly obsessed) with the running, daily exercises, eating my fruits and veggies, drinking my greens, and taking my vitamins. Staying healthy for this M.S. girl is kind of a full time job.
I am the kind of person who once I find something I love, I stick with it. I commit. Seriously. I wore the same pair of Doc Marten sandals until they were literally falling apart (and was devastated to find I couldn’t replace them because they had been discontinued 10 years prior). I’ve been using the same scent of body wash since college (sweet pea & violet). I’ve been married to the same man for over 20 years. And my favorite band has not changed since the 90s (R.E.M.). I’m loyal, and I’m not crazy about change, especially if I’ve found something that works.
So believe me when I tell you this is a product worth trying. The greens was the first product that I tried from It Works many many years ago, and I still love it. This is a powder that you can mix with just water. It is soy-free, dairy-free, non-GMO, and vegan. Its loaded with 34 fruits and veggies and 52 herbs and nutrient rich superfoods. It also has a blend of magnesium and potassium to fight acidity in your body. Y’all, this stuff is a game changer. I love to eat my fruits and veggies, but I know I still leave a lot of nutrition on the table. This is a super easy and delicious way to give my body the fuel it needs to function every day.
I first tried the orange flavor greens from a vendor at a hot air balloon show several years ago and what I remember most is that the day after I drank it, I had one of the best bowel movements I had had in a long time. Because this was way back when I was still struggling with constipation and that was kind of a big deal. So I’m sorry if you think that’s too much information, but come on. We all do it. They even wrote a book about it.
Moving on though (no pun intended ha!!).. They didn’t keep the orange flavor greens, which makes me kind of sad, but they kept two great flavors with the chocolate and the berry. If you like sweets, you’ll love the berry. If you’re a chocolate lover like myself, go with the chocolate. I’ve been trying to make a point to drink this stuff every day because I feel very strongly that it’s contributing to how great I’m feeling lately. The mental clarity I have when I’m taking it is significant. The brain fog that comes with multiple sclerosis is very common, and its both frustrating and scary. To be honest, I hadn’t really noticed that the brain fog was gone until I stopped drinking the greens regularly for awhile and it came back. I was starting to feel crummy again and it dawned on me that the only thing that had really changed was that. So now I’m making a point to drink the stuff every day, and my brain is back to its happy self again.
If this sounds like something you would be interested in trying, or if you have questions, let me know! Or if you just want to chat about your health journey and what’s working (or not) for you, I’m all ears! I am always eager to talk with others about their successes and struggles. We people gotta stick together, right?
I use my phone every day, all day. It has tons of useful features to support my life. It helps me keep myself and my family on track. Lately I had a thought I wanted to share. My phone is like a metaphor for my life. Let me explain why.
I was canoeing a couple years ago and the canoe tipped over. My phone was in a Ziploc bag, in my running belt, and water leaked into the bag, damaging my phone. I was able to soak it in a bag of rice for awhile, which restored most of its functions, but the one thing I can’t do is use the back button and that other one on the bottom left (the one that shows you all your open apps).
However, I found a workaround by using the s-pen to use those two buttons. The phone responds to the s-pen, just not my finger. A couple weeks ago I was replacing the pen into the phone and it snapped on me. It still works the way the pen should, it just doesn’t have that spring action needed to get it back out of its slot. So now if I want to use my back button, I need to bang the end of the phone on the heel of my hand in order to get the s-pen out. Other than that, the phone works great! It’s kind of ridiculous and it makes me chuckle.
It looks like a completely normal, functional phone. It just has a few broken features but there are workarounds. And that is a metaphor for my life. I am deaf but I have cochlear implants to help me hear. I am visually impaired but have friends, family, and public transportation to help me get around. I look completely normal, I just have a few broken pieces and I have my workarounds I’ve discovered I can use in order to continue functioning. So there. That is how my phone is like me.
We started off our summer break with a trip to the dentist yesterday (because I’m the best mom ever) via Spec-tran. Then today we went to Taco Bell via bikes (theirs) and feet (mine). I refused to buy fast food for the kids so they opted to pay for their meals. I was just in it for the miles.
This run went pretty well, considering my recent knee problems. I wore a new knee brace that was surprisingly comfortable to wear. I still had some knee pain beginning in the 4th mile, but the compression from the brace seemed to keep it tolerable. What I noticed in the beginning was that the added support on my right knee seemed to help me lift the left leg when I began to experience a little foot drop. I’m not sure how or why that works but I’m not complaining. The drop foot used to be so much worse and now I barely think about it. I’m just praying my body continues to cooperate as I add on more miles.
I really love that my kids enjoyed riding their bikes while I ran. This will allow us to go to a lot more places around town. They get their fun and I get my training runs. It’s a win-win. Of course the ultimate bonus is that we are spending quality time together.
I am super excited for this summer. Kids are getting bigger, I am getting stronger, it’s gonna be great.
My relationship with food is a tad dysfunctional. I’m what Oprah (or most therapists) calls an “overthinker” and that’s certainly true when it comes to food. But I can never seem to find a middle ground. Either I’m obsessing over what I should be eating, or I’m eating whatever is available. Like, I love leftovers. You cook once, you eat for days! But sometimes the leftovers aren’t even mine. They are left from my family members, who won’t eat leftovers (with the exception of cold pizza). So I see them in the fridge and I think, “Hey we don’t want to waste that delicious food I prepared a few days ago! I better eat it.”
But the other day I was introduced to a novel concept by a friend who is also a health and nutrition coach. She talked about eating only what your body needs, and pairing healthy proteins and carbs. So you aren’t feeling deprived, and your body starts using those fat stores. I think. I maybe have it a little wrong. But here’s what I started doing. New Plan: eat 6 meals a day, up to 200 calories per meal, every 2 to 3 hours. Each meal should have a healthy protein and carb, heavy focus on the protein. And drink lots of water! And exercise.
Folks, I’ve been on this new plan since Memorial Day and I have needed zero naps to get through the day, and I’ve lost 3 pounds already. It’s crazy! I almost think it’s a fluke but I’m gonna keep going with the plan in case it’s actually working. I mean, what a concept. Exercise daily, eat healthy portions of nutritious food, and your body is happy. I’m doing all this because I had gained weight this past year. Not a ton, but enough that I had to buy new pants and I don’t feel so good in my skin. So I had started counting my calories and I lost a whopping 6 pounds and then… nothing. I was stalled for several weeks. So it’s incredible that in less than two weeks I got the scale moving in the right direction again. My end goal is to lose another 16 pounds. Folks, that may not sound like a lot, but on a 5’1″ frame, it’s significant. It’s as if I’m carrying around a gallon and a half of milk around my waist and legs. I would really love to shed those gallons.
Another incredible change that I’ve noticed is that I don’t have nearly as much brain fog. I don’t struggle as much to remember or to process things. I find this especially true on the days I’m drinking my “greens”, my It Works drink powders that have my fruits and veggie nutrients and just a tiny bit of caffeine. It’s all about the veggies, people 🙂 I’m still taking a B12 supplement but I think all of these changes put together is really helping my brain to work better.
My favorite change of all? No napping required. Stable energy levels. I’m getting up at 7ish every morning, and I have the energy throughout the day to do things. Not boundless energy like when you chug a Red Bull, but normal, constant energy. Up in the morning, devotions, coffee and breakfast, a few chores maybe, then another meal (snack), more work around the house, lunch, and on it goes. I’m not feeling like I’m losing half my day like I was when I would crash at 1 pm and wake up 2 hours later. That, and I’m kind of always eating. And do you know who loves eating? This gal, right here.
It’s like some kind of freaking miracle. I’m here, present in my surroundings. Life is finally not moving too fast for me. I’m able to keep up, and without much effort. I am so grateful to be where I am today, and I’ll never forget where I was 6 years ago. I’m going to stay on this path to better health and wellness, because there is so much life going on around me and I want to be a participant, not just a bystander. Amen? Amen.
If I already blogged about this, forgive me. I’m just pretty sure I didn’t, so you’re getting this report a month late.
So! In May Mindy’s Minions gathered again to walk 3.1 miles around the capitol city in support of everyone living with multiple sclerosis. This is such a fun and lighthearted event, but it also does so much good, seriously.
The National MS Society puts on this event, and I am always eager to support them because they have been such a huge support to me from the beginning. Even before I was diagnosed with MS in October 2009 they helped me. During that summer, I had this strange and painful itching in my right arm. I was googling on the interwebs to find out what could be causing it, and I stumbled on their website. What I found was a detailed description of my symptoms, one far more detailed than I could have written. In short, they nailed it. I remember the moment so clearly. I was on my lunch break, sitting in my cubicle, and I had to hide the tears that were rolling down my face. I knew at that moment what I had, and I was terrified.
I was later diagnosed, of course, and the Society helped direct me to support groups for people like me. The first group I walked into was probably 80% older folks who were confined to wheelchairs. So, again, I was terrified. I thought I was staring into my future. It wasn’t until I found a support group for people my age that I started to have some real hope. Our group is a little more dispersed now and doesn’t meet in person anymore, but we still offer each other regular support through a private Facebook group. We share our struggles and our victories, we talk about our changes in diet, exercise, and medications. We are there for each other when we feel like no one else can understand. It’s been a true gift to have these people in my life, and I wouldn’t have them if it weren’t for the National MS Society.
So I raise money to give back. I walk, WE walk, to show our support. It’s an exercise in solidarity. I am surrounded by amazing family and friends all year long, but this day is special to me. It’s a day for my family and some of my dearest friends to come together and show their official support of me and my battle with this awful disease. I could not fight this alone and I am truly grateful to have these people in my corner.
Something great that has come out of my disability in the past 6 years is that there isn’t much in life that I take for granted anymore. That is a huge gift, to have a grateful heart the majority of the time, without even having to try.
Yesterday I had a hair appointment to get my wig trimmed. Not literally, that’s just the phrase my husband uses for getting his hair cut. Anyway, the salon I go to is about 2 miles away, and in the past I would have utilized the paratransit bus system to get there. However, though it’s a great service that I use quite often, it does come with drawbacks. You have to schedule ahead of time, and then you have to wait. They give you a 15 minute window to work with, which is fine, but it can be a little nerve wracking at times. I had decided that since the weather looked decent, I was going to ride my tricycle. And I did! It was fabulous. I felt so free and uninhibited. I got where I needed to go, at my own pace, all by myself. Which sounds silly when I say that out loud because for Pete’s sake, I’m a grown woman. But you guys! I know you all get it, right? I did it! All by myself!!
You have to celebrate the little things when they are good so you make the good things bigger. God loves to work in the details and I love that about Him. Find something to celebrate today, no matter how small.
I’ll be honest, I’m not even sure where to start with this post. I had a lot of thoughts running through my head throughout the race and these couple days following.
I’ll start by setting the stage for this 10k race. It was cold and rainy, and by the end, snowy. Michigan weather at its finest. We had been watching the forecast so we knew what we were getting into, and none of us were swayed. We were committed to completing this race, no matter the weather.
I should back up. By “we” I mean myself, a friend from church, and two other friends of hers. So you could say this was kind of out of my comfort zone. I had asked Chris, my church friend, if I could tag along because it was an all female race, and it looked like a lot of fun. It was out of town and they already had plans to stay at a hotel the previous night and they welcomed me with open arms. The comradery among runners is incredible. I’m fairly new to running compared to a lot of others, but throughout this whole experience I was never tempted to feel like an outsider.
The race itself started out pretty smoothly. I was feeling strong and confident for the first few miles. However, about halfway through I was noticing my left foot dragging quite a bit. This “foot drop” is one of the symptoms of my MS. Running doesn’t cause new symptoms, but it can aggravate old nerve damage. I have been training for my half marathon this coming fall, and have done plenty of long runs with almost no foot drop, so the fact that it was happening so soon was disheartening. Maybe I was just being more affected because of the excitement and nerves for the race, I don’t know.
My friend Chris had agreed to run with me for the entire race, to be sure I was safe. She did a fabulous job pointing out all the potholes and manhole covers, and steering me away from other obstacles. Throughout the race I did not trip even one time! However, I would not have finished this race without her assistance.
I think it was around the end of mile 4 I was having serious trouble keeping my foot from dragging. I was also experiencing some side and shoulder pain, but I was afraid to slow down and walk. My balance is better when I’m running. Something about the motion, I guess. I have another friend with MS who says the same thing about running. Walking requires a different movement and different nerves, I suppose. I told Chris what I was experiencing and she urged me to walk to give my body a rest, and use her arm for balance. At this point I was pretty discouraged and frustrated with what was going on with my body. I had not expected this to happen so soon. When Chris explained to me that my pace at the beginning of the race was much faster than I had been training at, it all made sense. I had been training between a 14 and 15 minute mile, but I had been running closer to 12! So clearly I had made a mistake, and I was paying the consequences.
I tell myself I don’t care about times and personal records, but that’s a big fat lie. I do care. I am always competing with myself, and I feel a great sense of pride when I am able to see my pace improve. The problem is, I want it to happen sooner than is realistic. So now thanks to my prideful denial of my physical abilities, I hobbled the last two miles of the race mostly hanging for dear life on Chris’ arm. I felt ashamed, defeated. My ugly pride had taken a hit. I started off too fast and it hurt me in the end. This felt a lot like failure, because I feel like I should have known better.
But listen – this was NOT failure. I finished the race! And with a PR to boot! So I made it more challenging for myself by starting too fast, and I had to lean on a friend to accomplish my goal of finishing. So what? Can we all agree there’s nothing wrong with that? We all have challenges in our lives, and very often we have to lean on our friends for help. Friendships enrich our lives, make us stronger, make us better. This is good!
Ecclesiastes 4:9-10 ESV “Two are better than one, because they have a good return for their labor: If either of them falls down, one can help the other up.”
There was a point in the race that I was feeling particularly angry. Not angry at myself, but angry at the multiple sclerosis that makes things so difficult. On most days I am able to function like a normal person and can almost forget I have this affliction. But then you run 6.2 miles and you are reminded. And that sucks, Big Time. So yes, I was angry. But then I was reminded that I hated running for most of my life. I didn’t start running until 2015, six years after I was diagnosed with MS. I run because I have MS. To show myself and others that it’s possible. MS doesn’t have to mean life in a wheelchair. This is what I believed when they first diagnosed me, and I know now that’s not the case.
I watched the following day as Worknesh Degefa dominated the Women’s Elite Race in the Boston Marathon. She ran the last 20 miles alone. Way ahead of the pack. Yes, it was cool that she was in the lead, but what was even cooler was that she was doing her thing. It didn’t seem to bother her one bit that she was surrounded by absolutely no one. The mental fortitude that must have taken is something I aspire to. If I can run these races and just zone out Degefa-style, then perhaps I can keep a steady pace and finish strong.
So I learned a few lessons with this race. I learned that you can’t rush the process. You have to pace yourself, and that requires patience and humility. There may be people zooming by you, but pay no attention. As Chris encouraged me I think during mile six – “you do you”. Forget about the other runners. Just keep moving toward the finish line. You’ll get there. Lesson #2: You want to change your pace? Do it in training. Don’t switch that up during a race. Sorry, I don’t know how that applies to life. It might pretty much just be applicable to running 😉 And lesson #3 was that friendships are invaluable gifts and not to be taken lightly.
My dad was able to join us to spectate this race, and it meant a lot to have family there rooting me on. He called me the following day and asked how I was feeling. He specifically asked if I was still planning on running a half marathon and I answered without hesitation – YES. No question. At this point in time I have no idea how I’ll physically manage it, but I’m choosing to trust in the training process. Four years ago I was barely walking, three years ago I ran my first 5k, and just 6 months ago I ran my first 10k. This body just keeps getting stronger. The more I push, little by little, the farther I can go. I don’t know how far MS will let me go with this running stuff, but I’m gonna keep pushing the line until she forces me to stop. And with God’s grace, I have hope that day will never come.
If you’re ever curious about my day to day routine, today is your lucky day. Now that kids are back in school and snow days are hopefully well behind us, I’ve settled into a daily routine. This time around I sort of just go with how my body is feeling, and it’s interesting to me how well this is working.
Every morning I get up at 5:30 with my son, and stay up until 8 when my daughter leaves for the bus stop (her school starts an hour later than his). While the kids are getting ready for school, I’m drinking coffee, reading my Bible, and sometimes eating breakfast (If my stomach is up for it). After the kids are off to school I go back to bed. I don’t set an alarm, I just sleep as long as my body needs to. Some days that’s only an hour or two, some days it’s more. Thursdays I generally sleep much longer because I’m recovering from a full day on Wednesdays, between Bible study in the morning and Financial Peace University at night.
After the morning nap I get up, eat a late breakfast or lunch, and then I get going with that day’s work. This usually includes dishes and laundry, and sometimes paying the bills and running. I’m usually done by 3:00, just before my son gets home from school, and then I can relax with a book or a tv show. Then I start thinking about what to make for dinner. The rest of the evening changes from day to day but in general I’m letting myself relax and enjoy time with family. I’m not stressing about my to do list because I’ve already done the day’s work. The rest can wait until tomorrow.
So you could say I work about 4 hours a day and sleep 10. This seems excessive to me, and the old me would think I was lazy. The new me is learning to understand this is just part of my disability and it’s what my body needs in order to heal and stay healthy.
It’s been really refreshing to be able to establish a routine that allows for a good work/rest balance. I’m getting things done, but I’m working WITH my fluctuating energy levels rather than fighting against them (or giving up altogether, as I have done in the past).
Much of this new attitude has resulted from consistent reminders of the grace God gives us. When I read in Scripture that He tells us to rest and to stop striving, or even to “strive to rest”, I am encouraged to know I’m doing the right thing. Amen? Amen.
Deaf and half-blind runner with multiple sclerosis
Little M.S. Runner 