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!
Wednesday, October 7, 2015
Tuesday, September 8, 2015
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!
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!
Monday, August 24, 2015
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.
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!
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!
 |
| 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!
Thursday, August 20, 2015
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.
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