Tools of my trade...

You'd think with a title like that I would be talking about carpentry or something but I am actually referring to my MS tools. Anyone who gives daily subcutaneous injections should get a BD safe clip. They are about $7.00 and they have a small hole that you put the syringe into and pop, off it goes into the clip. It holds about 2,000 needle clips. You can order them on Amazon.com. I highly recommend this tool especially if you don't want to have a SHARPS container clouding up your counter space. It's a bit of an eye sore too if you ask me.

Obviously my other tool is the shot itself. My magic drug, well that's my hope anyway. The drug has a 20% success rate in decreasing attacks after two years but the real magic happens after 5-10 years on the drug when the rate of attacks decreases by 80%. To me, this means a commitment of 5-10 years on this drug.

That does interfere with my dreams of having another baby however. Our family is wonderful the way it is but I long to have another baby, a boy. I want our family to be full and happy and I think the more, the merrier. Well not too much more, just one really. Our house would be maxed out if another one joined our family so it is unlikely we would attempt the grow the family for three years or so but then again, Emma would be 5 and Anna, 7. It would be quite an age gap for baby boy Nystuen or baby girl that is...

A more obvious tool is my daily vitamin. At the urging of my older brother I started taking a 1000 milligram of Vitamin D and a multi-vitamin. I have never been big on vitamins... not sure why but I haven't ever really taken them consistently. Probably because there is no visual benefit to vitamins. Yeah some say they help your nails and hair grow but I have never noticed therefore no vitamins for me. Well that's changed and I have been faithful to my pills for sometime now.

Probably the biggest and most reliable tool of my trade is my family. Anna and Emma are involved in the shot time daily. They peel back the shot package and Anna checks the air bubbles and Emma gets to throw away the trash and blot my skin if any blood occurs from the shot. At first, I wanted to shield the girls from this daily torture but they were intrigued and I thought they should see that Mommy isn't afraid (don't tell them but it hurts everyday) and that I am doing what I can to proactively take care of myself. Anna told me just yesterday that she wanted to be a nurse when she grows up. I almost cried. I was so proud of her because I knew she was doing it for me. I will tell you though she always said she will be Sleeping Beauty too when she grows up.

My husband is my rock. He is so caring, so generous and loving. I truly don't deserve such an honorable man but we take care of each other and that's love for us.

My parents, in-laws, friends and beyond have offered support and prayer when I needed it and I know some still pray for me regularly. I appreciate all of you.

Taking care of ourselves is something we have taken for granted. Neither Adam nor I thought our bodies would fail us at such a young age. Me, diagnosed with MS at 28 years old and Adam diagnosed with diabetes at the age of 31. Our health has continued to challenge us too. Adam now has borderline hypertension (high blood pressure).

I too had a bout of high blood pressure this past Sunday that landed me in the ER. My blood pressure had shot up to 176/123. I have never had high blood pressure but for the past three weeks had felt tightness in my chest and didn't think I could really get a deep breath. The ER doctors and nurses were shocked that I was only 29 and in relatively good health but there it was on the monitor, dangerously high blood pressure! After an EKG, a chest X-ray and an ultrasound of my leg to check for a clot, they couldn't figure out what was wrong. My blood tests came back clear and so did the urine analysis. The nurses came by to try to analyze my condition and the doctor was down right stumped. The nurse thought it could possibly be a pheochromocytoma. Yes exactly my thoughts - what the heck is that? After a little mayo.com research, turns out it is a tumor on the adrenal glads on the kidney. Tumor is a four letter word to most but in my profession, the first question is benign or malignant? These rare tumors are mostly benign so the odds are in my favor... that is if this is even what was wrong. I'll know more tomorrow when I get the test results of my 24 hour urine analysis - boy was that fun.

The good news is that my blood pressure has returned to normal. It is holding steady around 112/68. The lowest of my life. Makes me think losing 30 pounds has actually paid off in more than just my wardrobe but my heart and body as well. I take the accomplishment of losing the weight very seriously but I can't help but think that before all of the weight loss, I appeared relatively healthy. As the layers of pounds have peeled away, discovery of health problems keep popping up. I know the two aren't likely related but I can't help but wonder... silly I know.

Visual Exercise

Ever done one? Ya know when you visualize yourself accomplishing something and sure enough, you can because you believed in yourself. Don't you think Lance Armstrong visualizes the finish on the Tour De France or what about the beloved (yes I am partial) Brett Farve? He is visualizing victory ever time he steps on the field. Now let's not leave it all up to your mind to accomplish something, you do have to do more than that. The reason I am writing this particular entry is because one week from today, I will have finished my first marathon. Before you marvel at my desire, please know this was not my idea. It was my dad's. You see, about 15 years ago or so, my dad ran his first marathon and he was hooked. I believe the race we do together, yes he is running with me, at Disney World next week will be his 25th race. He will be half way to his goal of 50 marathons in all 50 states. My dad wanted his children, my brothers and I, to share in his hobby. Both of my brothers have completed their marathons and I am the last child to do it. My brothers both completed the Phoenix marathon. I chose Disney because I wanted to share it with my daughters. Both Anna and Emma are all about the princesses so I thought what better way to have a reason to go than to sign up to run the marathon! So I signed up last January. There is irony to my choice to run the marathon in 2010. You see I signed up a year earlier than my "required" age. My dad asked all of us to run a marathon with him when we turn 30. I hear it is all downhill after that...ha ha. Well I signed up to run one when I turned 29. You see when I concocted this plan, my intention was to have another child around the age of 30 so I thought getting fit before that was a good idea. Ahhh, yes, I should have known that my plan would have some road blocks. One of which being MS. It was all bliss until April when I lost my sight and then in August, a diagnosis. At first I thought I wouldn't be able to do the race. I was scared though of not doing it too. What if I wouldn't be able to walk in a year and this was the last chance I had to do something great with my legs? What if I go blind? A lot of "what if's" rolled through my mind during that time but the one thing that stuck was that I could not quit. You see, my dad taught me that. He encouraged me to choose for myself but he thought maybe I shouldn't race and I wouldn't have it. There are few things I have quit in my life and this was a big one I wasn't going to quit.

I'll admit training has been a challenge due to the MS. Sometimes my vision goes blurry when I run and my right foot goes numb usually in the first 20 minutes or so but to me, those are small challenges. I have trained to about 15 miles and it has been rough. I have lost 26 pounds since I started the training so that has indeed helped. It's funny how the lighter you are, the easier exercise becomes.

Now back to my point. Visual Exercises. As I completed a 3 hour run about a month ago, I visualized the finish line at Disney World, my dad by my side. It moved me to tears... It is going to be a magical moment when we cross the finish line together. And what better place to finish a marathon, than the most magical place on earth.

I am nervous. I am worried about the sweeper. The person who kicks you off the course for not keeping pace. I am afraid my daughters and my husband won't see me finish or will miss me running through Cinderella's castle.

The thing is, I have to just relax and know that I have angels on my shoulder and my dad, an angel as well, by my side the whole way. I don't think I could do this without him.

Say a prayer, wish me luck...

Ignorance is Bliss...

The title of this blog defines a way I wish I could feel about MS... just pretend it isn't there. Even the daily reminder of the shot can turn to routine and I can function as if there is nothing wrong. But then there are the small things that remind me of my disease. The Friday when I take the girls to Subway after preschool and I drop my paper cup at the soda fountain because I just couldn't grip it or the times when for just a second, my vision goes blurry and I wonder if this is another attack, will I end up blind? And then there is the running... for those of you that don't know, I am running and most definitely walking my way through the Walt Disney World Marathon in just a few short weeks. When I signed up for this marathon I was not diagnosed with MS and I had dreams of having another baby in about a year or so... After I started experiencing numbness when I ran, I wondered what was up, if this was the MS I had been told I didn't have... sure enough days after a 5K in August, MS showed up in full force numbing one side of my body and creeping over the the other side as the weeks went by before I saw the doctor. The running now is going well but every time I run, my toes goe numb on my right foot. It's the strangest thing, its as if they fell asleep as I pounded away at the pavement. The other thing that happens when I run is my vision loss. With MS, body temperature is critical - Have you ever thought about why you get a fever when you are sick? It is because your body is fighting an infection, your body being your immune system. With MS, your immune system defines infection as your central nervous system. Making itself the enemy. Body temperature is crucial to symptoms associated with MS. What I mean is that getting too warm (feverish) will cause your MS to flair. So with running, I tend to go blurry a bit during a run. Nothing I can't manage and honestly, I am used to it. I have always prided myself on good vision being 20/20 most of my life but surprisingly I have gotten used to the boughts of occasional blindness. What choice do I have? I can freak out and tell myself I can't do it but what good would come of that? I mean come on, it's just a little blindness I say.

So as I approach these final training weeks for my marathon, I wish I could be ignorant of my disease, ignorant of the pain of the daily shot but once again, what choice do I have? What kind of a parent would I be if I didn't stand up and try to fight this? To beat it? Even more so, what kind of a person would I be if I didn't even try? I can tell you, I'd be a hypocrite that's for sure. Someone who says one thing and does another... That's not who I am. I was raised better than that.

So here I am fighting away. Who knows if this drug is working to slow my disease to a tortoise pace? I have to believe in something, otherwise there would be no hope at all. I would just lay and wait for the enemy to take me... who wants to live like that? Not me and I am sure not you.


There's a saying in the MS world, yes that's right, I am in a different world now... The saying that people with MS hear is, "But you look so good." What they mean is how can you be sick if you don't look sick? I think sometimes those of us with MS should have a sign on our forehead so people would understand that even though on the outside things appear fine, chaos is the life of our immune system and central nervous system. I am always tired and sometimes depressed... thank God for my husband and daughters to give me reasons to smile because without them, I just don't know what kind of person I would be. They empower me, are my motivation and strength.

A lot of people thought I was crazy for getting married so young at 23, having babies at 24 and 26 but you see, even though at the time I thought it was my plan, it wasn't. I believe it was God's plan. I kept reworking "my" plan every time life threw a curve ball but those weren't curve balls, those things were part of the master plan, a plan written in my best interest. Imagine that, MS is in my best interest? How could one possibly believe that?

News flash people - we all want to believe in something so for me, this is what I choose to believe.

Human Pin Cushion...

The title of this post exemplifies how I feel most days in a week. Giving myself that morning injection after I hop out of the shower is definitely not the refreshing experience I used to get from a shower, that's for sure. There is something to be said for the phrase, "Ignorance is bliss." I'll admit, sometimes I wish I could ignore the reality of MS and the potential future I face, but other times I feel empowered by the fact that I am making a conscious choice to fight back and try to keep my health and strength. It comes and goes, I wouldn't trust it... the feelings that is.

There is a story to be shared behind the decision to go on treatment. When I was faced with my diagnosis, I was, unfortunately, concerned about the cost of my health. A shame that in this country anyone would have to think on these things, but it is the reality of today. As I pondered our finances and my fate, I seriously contemplated no treatment. Only a crazy person would choose not to be treated, right? Well here's the thing. MS drugs don't necessarily do much for you on a day to day basis. There job is to fight the battle inside your immune system and get that sucker to slow down and act like normal again... You see, this is the challenge. It is really difficult to monitor your immune system without turning into a lab rat so I must trust the research. And thank God for the research. I really mean that... that's not just a catch phrase. I am really thanking God for research and the opportunity for treatment. At first, I was the skeptic but now I am the believer... What a transformation of emotions in a short span of time...

Back to the treatment story... originally I thought my drugs were going to cost us about $400 a month and yes, we have insurance. We went back and forth about this and later found out that treatment was $40 every three months... What a relief to lose a zero in that total. Then it gets better... The nice people at the drug company have a prescription assistance program available to all. And they really mean all. They offer $50 a month off the cost of a patient's copay and after a tiny bit of paperwork and being assured that I wasn't taking from someone else, I enrolled in the plan. To my surprise and overwhelming joy, my prescriptions are now free. Yes you read that right, I wrote the word, FREE.

Keep in mind they aren't free for my insurance and once again, thank God I have that, because my insurance company was billed $8209.33 for 90 pre-filled glass syringes. This is my fate - I am slotted to be on this drug for the rest of my life...

There is no better phrase to insert here then, "Holy Crap! that's expensive!"

So as I close another day and look forward to another morning dose and reminder of my MS, I am oh so thankful for the insurance I have and the fact that, although this diseases has forced me to modify the way I think, it hasn't changed the way I live my life and it won't change the way I live my life.

The first day of the rest of my life...

I was too tired yesterday to write this blog so it is a day late. Yesterday marked the first day of my treatment for Multiple Sclerosis. I was diagnosed on August 26 of this year after two separate episodes over the course of the last four months. Since this is my first post on this new blog, I'll give a little background. You may have heard it but bear with me for you new readers... It started in April with optic neuritis (AKA temporary blindness)... Never heard of it? Neither had I. My eye doctor thought at first it was optic migranes that can cause temporary blindness but after two more days of being blind in my right eye, I went back and the eye doctor thought it was optic neuritis. I said, "Ok, what's that?" It's inflamation of the nerve behind the eye. It can be random or caused by a head injury but most often it is the first sign of MS. "What the heck? Did I hear that right?" Wait a minute I am young and healthy. I am not supposed to get MS. Cancer maybe, but not MS. My mom died of cancer at 43 so if anything, I imagined that might happen, but not this. "What is this anyway?" So after a good FREAK out on my part and a call to my husband and friend, I had an MRI on Easter Sunday. The MRI showed that I did have optic neuritis but it didn't show that I had MS. We thought our prayers were answered... The doctor said you don't have MS, you don't have a brain tumor and let's just let your eye heal. The next few days got worse but then it started to get better and better... My eye doctor recommended I see an opthoneurologist. "A what?" That's a brain doctor who specializes in the eyes - well optic nerves that is. I got an appt there but it was three months away. I continued to heal and gave little thought to the risk of MS. My appt came in June and the Dr. said we should have a full body MRI to just check things out for sure so on July 2, I went in the MRI machine for the second time in my life and guess what, I got the same response when I came out... No signs of MS. What a relief... I thought this was it. I am good. I made it out of this and God healed me.

I started to notice numbness in my right arm when I would run. It didn't really phase me at first until August 12. I woke up that day and noticed that I was feeling numb in my right leg and my stomach. This numbness spread over the next few days and I sort of panicked. "Could this really be happening?" The doctors said I was fine... How could this be? After two weeks of numbness that spread across my body and into my left hand where I lost the ability to put a ponytail in Anna's hair. I couldn't carry a dinner plate because it was too heavy and exhausting. I bet I sound like a big baby to you huh? Can't carry a dinner plate? What a weakling I am. I went in to the doctor and explained my symptoms and they scheduled an immediate MRI. I had the third MRI of my life and then I waited... a few hours went by and my doctor was back to meet me. He pulled up my spine on the screen and sure enough, a lesion was there and my spine was curved out from being swollen... He looked at me and said, "Between you and me, this is classic MS. If I were in a room full of medical students, I would use you as my text book example." I handled the news surprisingly well I thought. I was relieved to know that there was a diagnosis but I was scared.

A month went by and I read three MS books and basically went into MS information overload. I was scared. I had read about all the things that go wrong when you have MS and I read very few things that encouraged me. I wanted knowledge and boy, did I get it. A little too much actually.

I went to the doctor and decided on Copaxone, a daily injection. I started it yesterday. Let's just say, you don't know what you are capable of til you try. I never imagined I would have the courage to take a 1 inch long needle and stick it into my arm! One of 8 places available to inject. Today it was my stomach... tomorrow it's my stomach again. I can't believe I have to do this every day for the rest of my life...

I am not asking for your sympathy, just your encouragement and prayers.

Here we go...
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