The MS Society has been doing this thing for MS Awareness Week where you can go onto their website and say what MS equals to you. Here is my response:
MS = Never Taking A Day For Granted.
Each day that I wake up and can get out of bed on my own two feet is a great day. Each day I can use my fingers to play the piano is a great day. Each day I can walk to the park with my children is a great day. Each day I can rise from the couch and give my husband a hug is a great day. Life is fragile. Enjoy each moment that crosses your path.
Friday, March 18, 2011
Thursday, March 17, 2011
Multiple Sclerosis and Christ
These are two excerpts taken directly from my journal. I can think of no better way to express my love for my Savior than sharing my emotions in the rawest of forms.
August 20:
“I am a ticking time bomb and the countdown has just begun. My future looks bleak. I feel like someone has ripped the rug out from underneath my feet and I am just beginning the long fall to the ground. How much longer will I be able to hold this pen, run or walk without a cane, play with my children...swallow my food? The thought of my body attacking my brain makes me want to scream. The type of scream that begins in my toes and works its way up until I can no longer keep it inside. My brain is under siege, and it is going to lose. Soon the battle wounds will leave my brain riddled with scars and leave my life...who knows where?!?! I am too young for this to happen. I have just begun my life. How will my children feel when they are asked to care for their mother? How will my husband feel when his wife can no longer be a wife? I am scared. I feel so lost. How could this happen?”
December 7:
“I thought today as I sat in Relief Society, 'Why am I not more freaked out about this whole mess?' Seriously. I should be crawling under my bed and refusing to come out. Instead, while I am frightened, I am calm. Amazingly calm. The scripture came into my mind, “My load is easy and my burthen is light”...and I finally get it. I understand. I AM NOT ALONE. I have been given a terrible burden to bear in this life, but I do not carry it alone. As I have knelt in fervent prayer praying for help, when the never-ending tears have wet my pillow, in my darkest hour, I have felt His arms around me. I can never forget. My testimony of the atonement has been strengthened. I know Christ is helping me bear this burden. I can feel it and I am so thankful. I’ve always believed in the power of the atonement, but now I’m beginning to know it as well. I can truly say that without Christ in my life, I would be lost.”
August 20:
“I am a ticking time bomb and the countdown has just begun. My future looks bleak. I feel like someone has ripped the rug out from underneath my feet and I am just beginning the long fall to the ground. How much longer will I be able to hold this pen, run or walk without a cane, play with my children...swallow my food? The thought of my body attacking my brain makes me want to scream. The type of scream that begins in my toes and works its way up until I can no longer keep it inside. My brain is under siege, and it is going to lose. Soon the battle wounds will leave my brain riddled with scars and leave my life...who knows where?!?! I am too young for this to happen. I have just begun my life. How will my children feel when they are asked to care for their mother? How will my husband feel when his wife can no longer be a wife? I am scared. I feel so lost. How could this happen?”
December 7:
“I thought today as I sat in Relief Society, 'Why am I not more freaked out about this whole mess?' Seriously. I should be crawling under my bed and refusing to come out. Instead, while I am frightened, I am calm. Amazingly calm. The scripture came into my mind, “My load is easy and my burthen is light”...and I finally get it. I understand. I AM NOT ALONE. I have been given a terrible burden to bear in this life, but I do not carry it alone. As I have knelt in fervent prayer praying for help, when the never-ending tears have wet my pillow, in my darkest hour, I have felt His arms around me. I can never forget. My testimony of the atonement has been strengthened. I know Christ is helping me bear this burden. I can feel it and I am so thankful. I’ve always believed in the power of the atonement, but now I’m beginning to know it as well. I can truly say that without Christ in my life, I would be lost.”
Wednesday, March 16, 2011
The Episode That Started It All
Everyone who has MS has an episode that started it all. Here is mine:
It was Memorial Day, May 2008. The Artist had let me sleep in a bit since he had the day off. When I finally made my way out of my oh-so-comfy bed and into the kitchen for breakfast, the kids had already eaten and were playing in their room. I poured myself a bowl of cereal and sat down to eat. I took a bite. Something felt a little bit off. I took another bite. Yep, definitely off. You know what it feels like when you sit on a hard chair for a long time without moving much...when part of your body has fallen asleep, but isn't at the tingling stage yet? Well, that is what my face felt like. Half of my face anyway. The right half of my face, both inside and out, was numb. Not totally numb, but enough to make me wonder. I tried to make myself believe that I had just slept on it wrong and that it would be back to normal in no time. Then pushed all thoughts of my face aside to get ready for the day.
We were having friends over for a BBQ and I had lots to do. Food to prepare, a house to clean, children to bathe. You know the drill. But the thing is, my face kept getting more numb as the day wore on. By evening I was a little bit more than concerned. I had had this feeling all day that it wasn't nothing and that I needed to act as soon as possible. I had tried calling my mom several times that day to get her opinion, but she was busy and never answered her phone. She finally called me back right after we had eaten dinner. I excused myself from my friends so I could hear what my mom had to say. Well, if you know my mom...which you probably don't...then you know that she is not one to mince words. She has been a nurse for 30-years and has seen it all! She told me that it was probably just a pinched nerve, but that it could be any number of things: Bell's Palsy, a burst blood vessel near my brain...and several other things that sounded just as scary. She told me to go to the doctor the next day if it didn't feel any better.
Well, with the dawn of Tuesday's sun, my face was even MORE numb. So I called my family doctor. They got me in to see him that day. They kept asking me if I had had any trauma to my head...I kept telling them no. I was sure they didn't believe me though because they asked that same question again and again. My doctor thought it could be anything really. So he did as all good doctors do...he ordered blood work. The blood work didn't show anything unusual, so he referred me to a neurologist.
I will never forget sitting in the neurologist's office, up on his exam table, while he poked my face with a very sharp toothpick type thing. It was a bit scary, because although I could feel it, it felt like a fat finger touching me instead of a sharp stick. The inside of my mouth was even worse. If any piece of food or gum strayed to the right side of my mouth, it just disappeared...swallowed into the black abyss. I could not feel it at all.
More tests were ordered...this time the tests were a little more extensive than the original blood work. I had to get more blood work done, an MRI (my first one ever!), and a lumbar puncture (the worst thing EVER!!!) After looking at the results from all of these tests, my neurologist said that it possibly could be MS and referred me to another neurologist who specialized in MS. So, it was off to yet another doctor who ordered yet another MRI.
3 months after I woke to a numb face, I found myself sitting in my new neurologist's office waiting for her to tell me what was wrong with me. She came in, sat down, and very matter-of-factly told me that I had Multiple Sclerosis. She talked to me for a while after that, but honestly, I wasn't listening. I just kept thinking of that woman I spoke of earlier. I was trying so hard not to burst into tears. I could-not-believe that this was happening to me. I was also kicking myself for being there alone. I should have had The Artist come with me. Why had I gone by myself?
When I got to my car, I called The Artist. It was very somber. I drove home, parked the car, and started walking up the front steps. The Artist had Mr. Smarty Pants meet me on the porch and give me a big hug. And thus began my journey with Multiple Sclerosis.
It was Memorial Day, May 2008. The Artist had let me sleep in a bit since he had the day off. When I finally made my way out of my oh-so-comfy bed and into the kitchen for breakfast, the kids had already eaten and were playing in their room. I poured myself a bowl of cereal and sat down to eat. I took a bite. Something felt a little bit off. I took another bite. Yep, definitely off. You know what it feels like when you sit on a hard chair for a long time without moving much...when part of your body has fallen asleep, but isn't at the tingling stage yet? Well, that is what my face felt like. Half of my face anyway. The right half of my face, both inside and out, was numb. Not totally numb, but enough to make me wonder. I tried to make myself believe that I had just slept on it wrong and that it would be back to normal in no time. Then pushed all thoughts of my face aside to get ready for the day.
We were having friends over for a BBQ and I had lots to do. Food to prepare, a house to clean, children to bathe. You know the drill. But the thing is, my face kept getting more numb as the day wore on. By evening I was a little bit more than concerned. I had had this feeling all day that it wasn't nothing and that I needed to act as soon as possible. I had tried calling my mom several times that day to get her opinion, but she was busy and never answered her phone. She finally called me back right after we had eaten dinner. I excused myself from my friends so I could hear what my mom had to say. Well, if you know my mom...which you probably don't...then you know that she is not one to mince words. She has been a nurse for 30-years and has seen it all! She told me that it was probably just a pinched nerve, but that it could be any number of things: Bell's Palsy, a burst blood vessel near my brain...and several other things that sounded just as scary. She told me to go to the doctor the next day if it didn't feel any better.
Well, with the dawn of Tuesday's sun, my face was even MORE numb. So I called my family doctor. They got me in to see him that day. They kept asking me if I had had any trauma to my head...I kept telling them no. I was sure they didn't believe me though because they asked that same question again and again. My doctor thought it could be anything really. So he did as all good doctors do...he ordered blood work. The blood work didn't show anything unusual, so he referred me to a neurologist.
I will never forget sitting in the neurologist's office, up on his exam table, while he poked my face with a very sharp toothpick type thing. It was a bit scary, because although I could feel it, it felt like a fat finger touching me instead of a sharp stick. The inside of my mouth was even worse. If any piece of food or gum strayed to the right side of my mouth, it just disappeared...swallowed into the black abyss. I could not feel it at all.
More tests were ordered...this time the tests were a little more extensive than the original blood work. I had to get more blood work done, an MRI (my first one ever!), and a lumbar puncture (the worst thing EVER!!!) After looking at the results from all of these tests, my neurologist said that it possibly could be MS and referred me to another neurologist who specialized in MS. So, it was off to yet another doctor who ordered yet another MRI.
3 months after I woke to a numb face, I found myself sitting in my new neurologist's office waiting for her to tell me what was wrong with me. She came in, sat down, and very matter-of-factly told me that I had Multiple Sclerosis. She talked to me for a while after that, but honestly, I wasn't listening. I just kept thinking of that woman I spoke of earlier. I was trying so hard not to burst into tears. I could-not-believe that this was happening to me. I was also kicking myself for being there alone. I should have had The Artist come with me. Why had I gone by myself?
When I got to my car, I called The Artist. It was very somber. I drove home, parked the car, and started walking up the front steps. The Artist had Mr. Smarty Pants meet me on the porch and give me a big hug. And thus began my journey with Multiple Sclerosis.
Monday, March 14, 2011
Multiple Sclerosis Awareness Week
Today marks the fist day of Multiple Sclerosis Awareness Week. So I thought this week would be a good one to post about my experiences thus far with MS.
Here is a little description from the MS Society's website about what MS is in a nutshell:
Multiple Sclerosis is a auto immune disorder that attacks a persons' central nervous system. It interrupts the flow of information within the brain, and between the brain and the body. Symptoms range from numbness and tingling to blindness and paralysis. There is NO CURE and only in the last 20 years have treatments been approved by the FDA … there are only 8 disease modifying therapies (first oral one approved late 2010...all other medications are injections). Scientists have only been able to slow the progression of the disease not cure it but we all are working to help make a cure possible!
Sometimes I feel like a walking pharmacy. Todd and I joke that I am an addict. I do "shoot up" on a daily basis. If you would have told me that one day I would have to give myself daily injections, I would have run the other way as fast as I could, screaming all the while. I was the girl who was unnaturally scared of needles.
I have a very vivid memory of my 5-year old self walking down this long, dark hallway. It was raining outside and everything was grey. Huge windows were on one side of me, bleak tile on the other. I was headed toward the sound of screaming children and I knew that soon, too soon, I would be joining their ranks. My mom took me into a small room. The doctor handed me a little vial of purple liquid and told me it was to prevent polio. I drank it. Then, it was shot time. Three nurses had to hold me down while my legs were assaulted with needles. It was terrifying. My mom promised to get me a prize afterward. I made her keep her promise. I picked out a white umbrella with mulit-colored polka dots and used it as a cane for the rest of the day. (Dramatic much?)
Thankfully, having three kids via C-section cured me of my fear of needles. Still, there is something innately wrong with sticking something sharp into your body. Who intentionally causes themselves pain...no matter how small...on a daily basis? It's just madness.
I have to order my syringes through a specialty pharmacy. They sent me a sharps container with my first shipment. A big, red container with a bio-hazard sign plastered right on the front. I took one look at that and told The Artist that under no circumstances would I allow that thing to be in my home. Looking at it was truly depressing. The Artist did some research online and found this nifty little contraption that is about the size of two of my fingers. It clips the needle off of the syringe so you can safely throw the syringe away. It is perfectly acceptable.
For the first month or so, I kept saying over and over how I felt like a human pin cushion. I had bruises all over the place from the injections. It wasn't fun, but I got over it pretty quick. Now I am just grateful that there is a medication out there for MS with very little side effects. I've really only had one side effect...but I'll keep you in suspense because that is a whole other post.
The medication has done great things for me. I am happy to say that any numbness I had has all but vanished. My last MRI showed that there were no "active" areas of MS degeneration in my brain...The Artist and I breathed a huge sigh of relief with that news. Now I wear my bruises as a badge of courage. I'm going to fight MS. I know that in the long run I'm not going to win, but I will not give up!
Here is a little description from the MS Society's website about what MS is in a nutshell:
Multiple Sclerosis is a auto immune disorder that attacks a persons' central nervous system. It interrupts the flow of information within the brain, and between the brain and the body. Symptoms range from numbness and tingling to blindness and paralysis. There is NO CURE and only in the last 20 years have treatments been approved by the FDA … there are only 8 disease modifying therapies (first oral one approved late 2010...all other medications are injections). Scientists have only been able to slow the progression of the disease not cure it but we all are working to help make a cure possible!
Sometimes I feel like a walking pharmacy. Todd and I joke that I am an addict. I do "shoot up" on a daily basis. If you would have told me that one day I would have to give myself daily injections, I would have run the other way as fast as I could, screaming all the while. I was the girl who was unnaturally scared of needles.
I have a very vivid memory of my 5-year old self walking down this long, dark hallway. It was raining outside and everything was grey. Huge windows were on one side of me, bleak tile on the other. I was headed toward the sound of screaming children and I knew that soon, too soon, I would be joining their ranks. My mom took me into a small room. The doctor handed me a little vial of purple liquid and told me it was to prevent polio. I drank it. Then, it was shot time. Three nurses had to hold me down while my legs were assaulted with needles. It was terrifying. My mom promised to get me a prize afterward. I made her keep her promise. I picked out a white umbrella with mulit-colored polka dots and used it as a cane for the rest of the day. (Dramatic much?)
Thankfully, having three kids via C-section cured me of my fear of needles. Still, there is something innately wrong with sticking something sharp into your body. Who intentionally causes themselves pain...no matter how small...on a daily basis? It's just madness.
I have to order my syringes through a specialty pharmacy. They sent me a sharps container with my first shipment. A big, red container with a bio-hazard sign plastered right on the front. I took one look at that and told The Artist that under no circumstances would I allow that thing to be in my home. Looking at it was truly depressing. The Artist did some research online and found this nifty little contraption that is about the size of two of my fingers. It clips the needle off of the syringe so you can safely throw the syringe away. It is perfectly acceptable.
For the first month or so, I kept saying over and over how I felt like a human pin cushion. I had bruises all over the place from the injections. It wasn't fun, but I got over it pretty quick. Now I am just grateful that there is a medication out there for MS with very little side effects. I've really only had one side effect...but I'll keep you in suspense because that is a whole other post.
The medication has done great things for me. I am happy to say that any numbness I had has all but vanished. My last MRI showed that there were no "active" areas of MS degeneration in my brain...The Artist and I breathed a huge sigh of relief with that news. Now I wear my bruises as a badge of courage. I'm going to fight MS. I know that in the long run I'm not going to win, but I will not give up!
Sunday, March 13, 2011
Quirky Quirks: Sleeping
I am a deep sleeper. I sleep through pretty much anything. Kids wake up in the night? I sleep through it. Husband gets out of bed? I sleep through it. Sleep is my friend. I love my bed. I love being under heavy covers. I love to sleep and I need a lot of it! Something that drives The Artist totally bonkers is the fact that I move a lot while I sleep. I turn from one side to the other. From this side to that. The problem is, that I pull the covers with me. By morning, I am nice and toasty, curled up with blankets up past my head, while The Artist's toes (or more accurately, his whole lower legs) are sticking out the bottom with nothing to cover them. Every night before bed, The Artist pulls the blankets back down with a sigh. Every morning, he wakes up cold. I try not to. I really do. But how do you control what your body does in the throws of unconsciousness?
Saturday, March 12, 2011
Good Eats: Dutch Babies
Do you love it when you find a meal that your whole family will eat? I do. It happens so rarely in my house. You see, I have a child who is a super picky eater and has been from birth. So, when I find something that he will eat right along with the rest of us, I use it...a lot!
It makes me feel all June Cleaver when I can sit down at my table with my 3 angelic children, hungry after a day of play, and my husband who has worked so hard all day. With my table perfectly set, my kitchen nice and tidy and a fire, cheerfully cracking in the fireplace...and then I snap back to reality. I am no June Cleaver and my kids are no Beaver and Wally. No, my kitchen has cracked eggs on the counter and dirty dishes in the sink. My children have been fighting and whining all day. My husband HAS worked hard all day...if you can call drawing "hard" work (wink, wink). And if I lit a fire in my fireplace, it would fill my home with smoke faster that you can say, "Mom, what's for dinner?"
But this recipe, the reason for this post, is a tried and true family favorite. Mr. Smarty Pants loves it so much that when he was three and at the doctor's office for a well-child check, the doctor asked him what he does when he is hungry, and he answered "Eat Dutch Babies." I had to quickly explain that Dutch Babies were actually eggs and flour and milk, and not some poor child from the Netherlands.
Anyhoo, here is the recipe:
Pre-heat oven to 450. In a 9x13 baking dish, put 4 TBSP of butter in the bottom and put into pre-heating oven.
4 Eggs, beaten until foamy
1 cup milk
1 cup flour
Add to eggs and beat the heck out of em.
Pull pan with melted butter out of the over. Pour egg mixture over butter, but do not mix them together. Pop the whole thing back into the oven and bake for 16-minutes. (I don't even wait for the oven to finish pre-heating before I put the Dutch Babies in to bake).
It will puff up in the oven and turn a nice golden color. Serve as soon as they come out of the oven. I top mine with cinnamon, powdered sugar, and syrup. Or, if I'm feeling crazy, I caramelize some green apples and put them on top with syrup. We always pair our Dutch Babies with some sort of fruit and either bacon or sausage. Yum!
***Rule of Thumb: sometimes I make this for the boys for lunch and I don't need to make a whole batch. So, if you want to make smaller batches, or perhaps a larger batch (because one 9x13 pan doesn't quite feed our whole family!), then here is the rule: for every ONE egg, use 1/4 cup flour and 1/4 cup milk. Easy-Breezy.
It makes me feel all June Cleaver when I can sit down at my table with my 3 angelic children, hungry after a day of play, and my husband who has worked so hard all day. With my table perfectly set, my kitchen nice and tidy and a fire, cheerfully cracking in the fireplace...and then I snap back to reality. I am no June Cleaver and my kids are no Beaver and Wally. No, my kitchen has cracked eggs on the counter and dirty dishes in the sink. My children have been fighting and whining all day. My husband HAS worked hard all day...if you can call drawing "hard" work (wink, wink). And if I lit a fire in my fireplace, it would fill my home with smoke faster that you can say, "Mom, what's for dinner?"
But this recipe, the reason for this post, is a tried and true family favorite. Mr. Smarty Pants loves it so much that when he was three and at the doctor's office for a well-child check, the doctor asked him what he does when he is hungry, and he answered "Eat Dutch Babies." I had to quickly explain that Dutch Babies were actually eggs and flour and milk, and not some poor child from the Netherlands.
Anyhoo, here is the recipe:
Pre-heat oven to 450. In a 9x13 baking dish, put 4 TBSP of butter in the bottom and put into pre-heating oven.
4 Eggs, beaten until foamy
1 cup milk
1 cup flour
Add to eggs and beat the heck out of em.
Pull pan with melted butter out of the over. Pour egg mixture over butter, but do not mix them together. Pop the whole thing back into the oven and bake for 16-minutes. (I don't even wait for the oven to finish pre-heating before I put the Dutch Babies in to bake).
It will puff up in the oven and turn a nice golden color. Serve as soon as they come out of the oven. I top mine with cinnamon, powdered sugar, and syrup. Or, if I'm feeling crazy, I caramelize some green apples and put them on top with syrup. We always pair our Dutch Babies with some sort of fruit and either bacon or sausage. Yum!
***Rule of Thumb: sometimes I make this for the boys for lunch and I don't need to make a whole batch. So, if you want to make smaller batches, or perhaps a larger batch (because one 9x13 pan doesn't quite feed our whole family!), then here is the rule: for every ONE egg, use 1/4 cup flour and 1/4 cup milk. Easy-Breezy.
Monday, March 7, 2011
The Unfairness of Being Sick
There are not very many things in this life that I view as unfair: Abuse of all kinds; teachers giving your child homework that is so hard YOU are going to have to do it (or worse, it's too hard for even YOU to do!); Pregnancy and birth...but that is another post all together that I know you can't WAIT for me to publish :); and being a mom who is sick.
Getting sick...I cringe at the thought. When The Artist gets sick, he takes time off of work and stays in bed all day while I try to keep the kids quiet.
When I get sick, I still have to get out of bed. I have to make breakfast, even though the very thought of food makes me want to vomit. I have to get 3-energetic children dressed and ready for the day. Then I have to entertain said energetic children...which more often than not means I turn the tv on for them and lay on the couch trying to sleep. I have to make lunch, snacks, dinner for my family. And don't forget that EVERY time I sit down for a second, someone needs something: more food, help getting their button undone to go potty, more food, a drink, more food, help getting some sort of toy down from on high, more food...hey, I've got two growing boys and a little girl who could eat those boys under the table!
It's all very exhausting.
This weekend however, was a little different. I got sick on a Friday and was sick all weekend. It was wonderful...I mean horrible. It was horrible. I was really sick. "Couldn't get out of bed for 2 full days" sick. BUT, it was a Saturday. The Artist was home. I could sleep. It was also on a Sunday. Usually Sundays are crazy busy, but this Sunday was Stake Conference...if you're LDS, you know what that means...The Artist was home. I could sleep. I hated losing my weekend to sickness, but if a mom is going to be sick, I think this is the way to go!
I'm going to have to remember this...getting sick is strictly reserved for Saturdays and Sundays. Hmmmm, I like it :)
Getting sick...I cringe at the thought. When The Artist gets sick, he takes time off of work and stays in bed all day while I try to keep the kids quiet.
When I get sick, I still have to get out of bed. I have to make breakfast, even though the very thought of food makes me want to vomit. I have to get 3-energetic children dressed and ready for the day. Then I have to entertain said energetic children...which more often than not means I turn the tv on for them and lay on the couch trying to sleep. I have to make lunch, snacks, dinner for my family. And don't forget that EVERY time I sit down for a second, someone needs something: more food, help getting their button undone to go potty, more food, a drink, more food, help getting some sort of toy down from on high, more food...hey, I've got two growing boys and a little girl who could eat those boys under the table!
It's all very exhausting.
This weekend however, was a little different. I got sick on a Friday and was sick all weekend. It was wonderful...I mean horrible. It was horrible. I was really sick. "Couldn't get out of bed for 2 full days" sick. BUT, it was a Saturday. The Artist was home. I could sleep. It was also on a Sunday. Usually Sundays are crazy busy, but this Sunday was Stake Conference...if you're LDS, you know what that means...The Artist was home. I could sleep. I hated losing my weekend to sickness, but if a mom is going to be sick, I think this is the way to go!
I'm going to have to remember this...getting sick is strictly reserved for Saturdays and Sundays. Hmmmm, I like it :)
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