The Best Day of My Life - Mother's Day 2017

Today is the best day of my life. It just demoted the last best day of my life. Let me start with the one that was just demoted because they are somewhat connected. It's possible the best days of my life were once the birth of my children. But that was a long time ago. So I'm not really sure. But I'm pretty sure these two stories outrank childbirth. Maybe.

My younger son Ben is a senior and is finishing his 7th year of orchestra. He lives for lacrosse so each year we were surprised that he wanted to continue playing violin. I think he was surprised too. He was good but not the best. Well, the best in my mind but he didn't live and breath orchestra. He never took lessons. His tuxedo was a hand-me-down that we made work all four years of high school. He would never play at home where we could hear him. In fact, it was a point of contention. I once threatened to ground him if he didn't let me view his recorded playing test. Seriously, all those years and I had never heard my son play outside of an orchestra concert. My husband and I often wondered if he was even playing. Maybe he was the best air-violinist on the planet. But then why continue? And last fall he was the Assistant Concertmaster in the Chamber II orchestra for the semester so he couldn't' have been faking it. Right?

So, last January he needed a new bow. Being a totally clueless orchestra parent, I had no idea that he'd needed one for a long time. We went to Atlanta Violins in downtown Roswell. It's in an old house full of beautiful instruments and people who do in fact live and breath playing. The fella took us into the room with the bows. The walls were lined from floor to ceiling with beautiful violins. He took out several bows ranging in price and quality for Ben to try. He had Ben face me, having no idea this would be my first time watching my son play solo. Ben smiled. He knew I was getting away with something. He began testing the different bows. I sat there calmly bursting with pride. I resisted pulling out my phone. No pictures, no videos, no posts on Facebook. Once we were in the van, I privately confessed that was the best day of my life.

Last night, I told Ben the best Mother's Day gift in the world would be for him to play a song for me. He laughed and said "no way." I believed him. My Mother's Day started off rough with Multiple Sclerosis and back pain reminding me who was boss. We got home from church and brunch and I got into bed for a bit. After a while, Ben entered my room with a speaker and his violin. No! How can this be? He's going to play for me? I asked if I could record. He said no and so I just sat in bed absorbing every single second. He played two songs from "A River Runs Through It" (one of my favorite movies) and then "Pipers to the End" by Mark Knoffler (one of my favorite songs). I wiped away the tears with my bed sheet as the tears of joy flowed. At one point my husband Greg joined us and I'm pretty sure I saw him wipe away a tear or two as well.

MS and back pain had nothing on me at this moment. The seas were quiet and my heart sung with happiness.  After he was done, I told him this was now the best day of my life.

My Life as an Umbrella

According to WebMD: Spasticity is a muscle control disorder that is characterized by tight or stiff muscles and an inability to control those muscles. In addition, reflexes may persist for too long and may be too strong. It's caused by an imbalance of signals from the central nervous system. Symptoms include overactive reflexes, involuntary movements, pain, and more.

Many folks with more progressive forms of Multiple Sclerosis experience spasticity. I'm a metaphor kind of girl. As I ponder a life plagued with excess spasticity, I often think of how to better describe the experience. It's like an umbrella constantly opening and closing. There is a long rigid base and the umbrella pops open and close, open and close . . . inside my body. It also reminds me of fireworks. I don't know when they will be let off or how spectacular they might be. Spectacular in the worst kind of way.

Anyone who knows me well, has witnessed this. Legs that won't bend. Often people are afraid of hurting me but those closest to me know that you have to force my legs to bend, showing them whose boss. My chiropractor has it down best though. He's patient, adding some visualization (our mantra getting me to my restful place: "beach, beach, beach . . " as he gently gets them to bend).

Transitions are the worst. Sitting to standing, standing to sitting, shifting in bed, getting in and out of bed, getting up from the toilet, lifting my arm to brush my hair, etc. Touching cool to cold water sends my body into spasms. Cold weather makes all my limbs flail making me the female version of Frankenstein. And for whatever reason, mornings are the absolute worst. My legs are like 2X4s nailed down to my mattress. Getting out of bed is like trying to pull myself out of quicksand. Sometimes as I shift, my legs then go into a different kind of spasm that forces them to bend. It's ultra cool, because they are bending, but I have little control and the spasm may lead to a cramp or injury. Learning to take advantage of some spasms, helps me to function better. There is a four inch lip to get in and out of my shower. I am not able to lift my right leg over the lip but if I let my toe touch the cold water it sends my leg into a spasm just long enough to get it over the lip. Sweet victory! Fingers are also known to spasm as they take on a life of their own refusing to straighten out.

Imagine this fun situation: Early last spring a sudden thunder storm popped up at my son's lacrosse game. I'm banished to the furthest end of the field where they built a separate wooden platform for wheelchair access. My husband was up in the press box keeping stats so we've been separated.The high school stands cleared out in seconds. I'm going full speed ahead across our turf field headed for the van, I'm holding my real umbrella that is now inside out from the strong wind, the cold air and rain have sent all my legs into spasms so I'm lady Frankenstein so frozen up that I can't even talk, my internal umbrella has gone off but won't close.  Some nice person with an umbrella runs over to give me some cover. I smile because the situation is so ridiculous.

There are medications like baclofen that help with spasticity. Some people with even more severe spasticity have baclofen pumps installed in their bodies - mostly people with spinal cord injuries. I take one baclofen before bed to make sleep more restful. But I avoid them in the daytime because they make me a walking zombie (and I'd rather be lady Frankenstein). Diet also helps a lot. I'm doing a constant inventory of how my body reacts to certain foods. I have a healthy diet but I'm human. I'm weak and sometimes need some mindless munching. But it comes at a cost. For example, I know eating salty chips (even organic baked healthier varieties) are going to make fireworks go off in my legs. Lately, I've been stronger and calmer legs have beat out mindless nervous eating. Again victory!

So there you have it. More than you ever wanted to know about living with spasticity.

I don't want you to feel sorry for me (okay, maybe a little bit) but I do want you to be grateful. Every time you get in bed, get undressed or dressed, get up from the toilet, brush your hair, or make a run from a big storm, say thank you. Thank you. Thank you.

Eyebrows and MS, Did you say eyebrows?

Ah!! I practically shaved my eyebrows off the other day! Good golly!!

I have less than 50% strength in my right hand. Fine motor skills are a challenge. Clasping a necklace or bracelet, forget about it. Buttoning up my blouse, forget about it. Plucking wild facial hairs, NOPE, can't forget about that! I even have special tweezers but I often can't pluck a wild hair if my life depended on it. Literally, I'll pretend my life depends on it. Like someone is holding a gun to my head. And still no luck. No luck with the pluck. In my make believe world, I just lost my life over a stray eyebrow hair! Nasty selfish hairs with a mind of their own. Taunting me. Sometimes it seems my eyebrows are trying to grow sideburns. Or what's up with that one eyebrow hair that grows so long I could put it in a pony tail? I use my eyebrow brush and comb it over, hoping it stays in place. That's sad. My eyebrow has a comb over.

So a couple of years ago, scrolling through the TV channels, I came across a shopping network selling this little device that trims eyebrows. Ah! This could be the answer to shaping eyebrows with MS! I purchased it right away. Well, it rarely works. The other morning, I pulled it out and went through the motions, hoping this time it would trim and shape my eyebrows beautifully. Oh this time it worked. It worked far too well and nearly trimmed my eyebrows off! Basically, I have these two short black blobs above each eye. Like Charlie Chaplin's mustache was reincarnated as my eyebrows. Oh Lord! What's a girl to do. I had some eyebrow pencils because my eyebrows tend to be thin (which make the whole comb over thing much worse!). But using an eyebrow pencil when you have little strength in your hand is downright comical. I'll certainly never be one of those ladies making millions on my Youtube instructional makeup videos. In fact, it's quite obvious that I've never even watched one of those videos. Even funnier, my middle age eyes can't see worth a darn, even using a magnified mirror. Imagine this, I'm wearing reading glasses, gazing into a magnified mirror, sketching on my almost nonexistent eyebrows with my limp numb fingers. Sometimes the left hand would come in for backup. Occasionally I will remove my hands and find my eyebrows are in layers, with multiple parallel lines. Really? How did that happen? Erase. Start over.  Thankfully my bangs cover my right eyebrow. So I focus on poor exposed lefty.

The whole situation has kept me chuckling for days. Well, the next time you see me, you won't be able to resist looking at the artistry on my face. It's no telling what it will look like! Just don't look too close!

The MS Do What You Can Diet

We all know of that Uncle or Grandma who lived to be a hundred despite eating white bread, fried chicken, and candy bars chased by ten cups of coffee a day. But let's face it, it seems like auto-immune diseases are at an all time high. I can't explain how diets relate to health but it sure seems logical, doesn't it?  I've tried several "MS diets." These days, the most popular one seems to be the Wahls paleo diet. I first watched Dr. Terry Wahls Ted Talk almost four years ago. I've probably watched that 18 minute video twenty times. I've read her books and I've tried following her diet. I'm 100% convinced that anyone who eats her diet will be healthier. Let's see, I'll try to sum it up: don't eat anything you enjoyed while growing up, eat a lot of organic meats including organ meats, and eat a truck load or organic vegetables per day. Don't forget the seaweed. Oh, and if you can, grow the food in your backyard. Even if I had the energy to grow and prepare this much food a day, I certainly don't have the energy to EAT this much food.

If you haven't heard of the paleo diets, well, you might be living in the paleolithic age (ha, ha). The basic idea is to get back to eating real foods and avoiding foods that may cause inflammation or adverse reactions in the body (which could include gluten, dairy, grains, processed foods, sugar and more). Most "paleo diets" touch on the importance of eating organ meats. Um, let's just say I have my limits. I'll never forget the first time I tried to make liver. Yuck! Don't get me wrong, if there was a 100% guarantee I would walk again, I would eat liver every day. But there isn't a guarantee and I haven't experienced significant enough results to justify eating what I consider a "Fear Factor" diet. I also have a sweet tooth. The first time I made Dr. Wahls' paleo fudge, I was so excited. Fudge! After the first bite, I seriously cried. I thought, ugh! my life is over. I'm either sentenced to a life in a wheelchair or of eating this stuff she's calling fudge. Here's the recipe from memory: stir a bunch of coconut oil with a tad of really expensive Bulletproof pure cocoa and add some mushed up dates for sweetener. Put in the fridge to harden. Try not to gag after taking the first bite.

Truth is, you really are what you eat. I believe that. We should all be more aware of what we put into our bodies, especially if we struggle with our health. I knew a sweet elderly lady who once said, "if I knew I was going to live this long, I would have taken better care of myself." Hmm. Interesting take. I "get" the Wahls diet. I really do. But I've learned, I simply can't do it. I even had to stop "following" her on Facebook because I was constantly reminded of how I fall short. So, I removed the pressure and guilt of falling short and I strive to simply do my best. If you struggle with health challenges, I encourage you to do the same and see what kind of changes you notice.

Some people have reported miraculous results managing their MS with diets. MS or not, we're all managing our health. While my results haven't been mind blowing, I do notice a difference. There's a lot going around these days regarding the connection between our gut and our health. Maybe you have a gut of steel but for me, this is the main reason I focus on a healthier diet. I had GI problems for years. Now, I don't. You may notice some changes immediately and some may take a while. I still have MS. I'm still in a wheelchair. But I never get sick (knock on wood) and other than MS (isn't that enough?), I'm pretty healthy.

So, here is my 10 step "Do What You Can" Diet:
1. Try to avoid gluten
2. Try to avoid dairy
3. Try to avoid caffeine
4. Try to avoid processed foods
5. Try to stay hydrated (I drink filtered water, kombucha (acquired taste), homemade smoothies (great way to sneak in veggies) and herbal teas.
6. Try to eat healthy proteins every day. Preferably organic meats.
7. Try to eat plenty of veggies. Preferably organic.
8. Try to eat a little fruit (don't overdue).
9. Try to limit sugar
10. Show yourself grace when you fall short (which for me is pretty much every day)

This is the cliff note version of what I strive for in my diet. It's a bit more complex than this but the bottom line is, do your best to make healthy changes in your diet. Your body will thank you.

Also, pay attention to how you respond to food. If I eat some gluten, I may find my gut hurling insults at me. If my "cheat" item is organic popcorn or a healthier potato chip, I may notice immediate numbing in my right hand. If I eat some organic gluten free cookies or coconut ice cream, I might notice nerve pain in my toes or a sore popping up in my mouth. When I can't resist organic butter on my baked potato or blue cheese on my salad, I may go through a handful of tissues blowing my nose. And my "no, no" foods often lead to jumpy spastic legs (painful). Logically, you might then avoid these items but there's little explanation why I can't always do that. I chalk it up to being human. Do the best you can and don't beat yourself up.

I also make up for some of my diet shortfalls through whole food nutritional supplements. I have worked closely for several years with my chiropractor who specializes in nutrition. Find someone you trust to help with your nutrition and to help you make better health choices.

I think part of enjoying life is enjoying food. If my diet feels oppressive, than life is NO fun! I have a favorite local bakery called Gluten Free Cutie and I LOVE their cupcakes. They make me happy! They don't use gluten, dairy, eggs or artificial dyes and still manage to taste delicious. Oh, and I never diet to lose weight. That's not my health challenge. My mother was obese and died at age 74 of a heart attack. But she seemed to enjoy her life and she didn't want to change her diet. I respect that. Sometimes it's exhausting putting so much thought into what I eat but I don't want to go back to where I was before making peace with my unhappy gut.

If you struggle with health issues, I highly recommend making adjustments to your diet. And although I'm totally overwhelmed by the Wahls diet, I recommend reading her books. They are full of interesting information. You have to be super-human to follow her protocol but give yourself permission to take baby steps, to do your best, give it your best shot and then pay attention to how your body responds.

So get out there and well, do your best!

Traveling with MS or Limited Mobility

I used to travel a good bit. Now I'm disabled with Multiple Sclerosis. MS often leaves me feeling isolated. Stuck. Imprisoned. I desperately needed a change of scenery. A flight across the country to New Mexico was the destination. I take plenty of small trips by car but last I flew I was still walking with a cane (oh, those were the days). Now I "walk" at a snail's pace using a rollator (a rolling walker with a seat) and electronic devices on my legs to stimulate lifting my feet (made by Bioness). I use a motorized wheelchair for longer distances. I was paralyzed by my fear of traveling afar by plane.  I found some helpful information on the internet but I want to share some important things I learned while traveling.

A change of scenery is good for the soul. 

First of all, MS and all disabilities manifest in different ways. There is no one size fits all traveling solution. But I think I can speak for those struggling with mobility.

I did not take my motorized wheelchair because of the cost of adaptive van rentals. I decided on taking my transport wheelchair and my rollator. Once we got to the airport, I checked my wheelchair and rollator with my baggage (no charge from Southwest Air). Be sure to ask them to securely tape those items. I lost one of my wheelchair leg rests on the flight and had to find a replacement chair. Book an aisle seat close to the door and a bathroom. Request a wheelchair when purchasing your ticket. They will deliver you to the gate and pick you up upon arrival. Make sure you have some cash on hand for tipping.

Now off to a hotel. The website TripAdvisor has several helpful forums for traveling with disabilities. Click on this link for a helpful Accessibility Checklist for Hotels on TripAdvisor.

The most important hotel questions for me:

1) Is the shower a roll in shower or does the bathtub have a wall mounted shower seat?
2) If it's a roll in shower, do you have a shower chair?
3) How high is the bed?
4) Is there space for a wheelchair in the room?
5) Where are your handicap rooms located?

More on the shower: Grab bars are necessary but don't make a shower or bath accessible. A roll in shower has a flat entry. This is the best option if you aren't able to lift your feet. Make sure they have a shower chair. If there is a wall mounted shower seat with a bathtub, this is a little tricky. I learned to put a towel down on the seat, lower myself to the edge of the seat that rests on the bathtub, and turn myself into the tub. If you have weakness in your hands, hotel shampoo is often hard to open. You may want to bring your own travel shampoo.

More on the bed: Never in a million years could I have anticipated this problem. We thought we asked all the right questions and the room looked like it was going to work. But when I went to sit on the bed, I couldn't get in the bed. Popular oversized mattresses don't work for someone who doesn't have use of their legs. Ugh! I was lifted into the bed and then I was stuck. I couldn't move. I was drowning in overstuffed pillow top bedding. I was a turtle stuck on its shell. Oh, and if I had to get up in the middle of the night, how was I going to get back in bed? We ended up removing the mattress and I slept on the wooden platform. Not a comfortable sleeping arrangement. I used a fold out sofa in the other hotels. It wasn't terribly comfortable but much better than a wooden platform. Most hotels also have roll away beds but you have to have a spacious room for that.

More on Accessible Rooms: I've found most hotels have their accessible rooms far down the hallway. You may not find a hotel with a room close to the elevator or lobby. Be prepared to get your exercise or to be wheeled to your room. This is not an issue with a motorized chair or scooter. When booking a room have a list of questions to ask regarding your specific needs.

Other traveling tips:

1. I was surprised how many museums, national parks and cultural centers provide manual wheelchairs. I especially enjoyed using the wheelchair at Bandelier National Monument because we hiked on a rocky trail and my chair was not durable enough for that terrain. Check websites or call to see if they provide this nice service.

2. Bring your handicap placard that hangs from the rearview mirror to use on your rental car.

3. I've always been very independent. The hardest thing for me was relying on others to transport me in the wheelchair (I missed the freedom of my motorized chair). People want to help but losing that independence is frustrating. As difficult as it may be, breath, let go and let others care for you.

4. Don't overbook your days. Enjoy each moment.

5. Be patient. Even in the hectic airports and during the frustrating moments. Breath.

5. Most importantly, have a sense of humor!

Bandelier National Monument provides manual wheelchairs.

Another museum that provided wheelchairs.

Wish List: While it is possible to rent wheelchairs, I wish portable scooters like the Lugge Scooter were available to rent. That would have been fantastic!

Traveling came with plenty of challenges but I'm glad I did it. The scenery was beautiful and just what I needed.

Good luck with your travels. If you have any advice to add, please comment below.

Bon Voyage!

New Beginnings

I took the plunge and changed my blog. It was called "MS Kinda Sucks." I felt uneasy with the name. I should be more refined, shouldn't I? But MS does kinda suck. It's the truth. I added "kinda" because I didn't want to commit to MS Sucks. After all, each challenge seemed to come with a blessing. Sometimes I had to search high and low, but I always found one. As Multiple Sclerosis continued to progress without my consent, "MS Kinda Sucks" no longer worked. My husband and I joked that I should rename my blog "MS totally blows!" Well, it does! But maybe it's time to use language I wouldn't mind sharing with my grandmother (God rest her soul). 

Lately, I've found myself wanting to put words to my pain and struggle. I hope my sense of humor still seeps in to provide moments of comic relief. I named my blog "Quiet the Sea" because images of the sea kept coming to me. I love kayaking. Back in the day, I navigated some turbulent waters and nothing matched the peace of being on a quiet sea after experiencing a rough ride. My faith is also very important to me and there are several Biblical images and stories involving the sea that have sustained me through my journey with MS.  

I’m not much of a writer but I hope my occasional blog will help others navigating their turbulent waters.  

While blessings abound, I can no longer commit to finding the blessings in every challenge. I'm grateful to be a part of God's beautiful creation, but let's face it, do we really need cockroaches or mosquitos? Sometimes, as I'm wreathing in pain, I think of it like one of those cockroaches. I can't, in that moment, be thankful. But there is hope that the sea will quiet and there will be peace. 

Psalm 107: 28-31

Then they cried out to the Lord in their trouble,
    and he brought them out of their distress.
He stilled the storm to a whisper;
    the waves of the sea were hushed.
They were glad when it grew calm,
    and he guided them to their desired haven.
Let them give thanks to the Lord for his unfailing love
    and his wonderful deeds of mankind.

Bionic Blessings

(Updated August 26, 2015)

June 16th, 2014 goes down as one of my all time favorite days. One I will never forget! 

The Bionic Walk

Years ago, one of my kids said "MS has taken away my mom's legs." Up until the last couple of years, lack of function was limited to my right leg. I was using an electronic device made by Bioness to lift my right foot. It became apparent that my left foot also needed one. There was also a thigh cuff that would help. But they cost $5,000+ each. What’s a girl to do? In a moment of weakness, I posted something on Facebook but then I quickly removed it. In that brief moment a friend from our lacrosse community saw it. She messaged me that she wanted to spearhead a fundraiser. I was surprised, humbled and grateful.

Little did I know, there were several other moms getting in on it. I had people coming up to me at lacrosse games and giving me hugs saying “we’re going to get those bionic legs!” Their goal was to purchase both devices. I was grateful for the effort and would have been happy if they raised $500! They called it The Bionic Walk and soon the event took on a life of its own.

Our local high school, Lassiter High School, fully supported the event. They gave full access to the stadium, provided supplies and the clean up. Lassiter PTA sent out E-news announcements. LHS mens and ladies lacrosse programs and local lacrosse clubs supported the event. Local businesses, Lassiter Cheer, coaches, players, my Sunday school class, my bike team and friends also supported the event. An Atlanta Falcons football player autographed and donated a football. And there was an online fundraiser for those folks who weren't able to be there. It was an amazing community event with a cake walk, a bake sale, face painting, the actual one mile fun walk, a silent auction, a food truck, and a father / son lacrosse game that was a blast. I saw old friends and new coming together to show support.

I had so much fun and often forgot that it was for me! We are blessed to live in such a great community.

Nearing the finish at the Bionic Walk.

Thank you to all of the volunteers and folks who supported the Bionic Walk. The Bionic Walk raised well over $17,000! It's been the gift that keeps on giving. Besides the new Bioness devices, I purchased a special exercise machine, new canes and months of therapeutic massage. I use the Bioness devices every day while walking around my house and for short distances. I'm not sure what I would do without them. Unfortunately, it became clear that I also needed an electronic wheelchair. I had (and still have) an old scooter but it was time to crossover into regular use of a wheelchair. Funds from the Bionic Walk paid the deductible for my new wheelchair. The remaining funds will go towards upkeep and supplies for the Bioness devices.

These are the fabulous ladies who made it all happen. 

A demo showing off my new devices. 

I was invigorated and energized by the love and support. I was hoping for new “bionic” legs but what I got were mountains of Bionic Blessings!