No news is good news...

Honestly MS has taken a backseat in my life these past few months and for that I am grateful. I actually had my 1 yr since being diagnosed in August and in October I decided to discontinue my treatment. You see when I visited the doctors at Mayo they said I may not even need treatment because my MS appeared to be so mild. So I gave it a lot of thought and decided to test the waters for about a year with no treatment at all. Ironically within a few days of stopping treatment, I felt a regular numbness in my lower back and left arm. I gave it a few weeks and it was definitely sporatic, not painful at all really, just different. I called the doctor's office and they said not to worry so you know what, I didn't. And shortly after the numbness subsided. Now don't misunderstand, most days I still have numbness in some form or another. Today at work, my calf and foot went numb and I nearly fell over leaving my office... whoops! No wonder people with MS often appear to be drunk.

There have been some great strides in MS therapy lately too with the FDA approval of an oral drug vs. what is the only option on the market today - shots! I am interested in the new therapy and will talk to my doctor about it when I check in with him in October 2011 but right now I am focusing on trying to maintain a calm in my life. I find that stress definitely affects my MS. Too bad stress is a bit of a challenge to control for most, including myself.

I still have a bizarre puking habit. Not sure what the cause is... I thought it was related to a lack of rest but after getting tons of it last week and still having two pukey episode, I am once again perplexed. Part of me wonders if it has something to do with bread? Wondering why I think this? Well I recalled the last three pukey episodes and I had eaten a good portion of bread either in a pizza or pasta form at dinner and sure enough, up it came. But here's the perplexing part, it isn't consistent. If I was intolerant to something, wouldn't it be all the time? Who knows... for now, I am lightening the bread load to see if that helps.

A breath of fresh air...

After leaving Mayo Clinic yesterday, as I was walking to my car, I took a deep breath. I can't remember the last time I did that without being provoked by a stethoscope on my back listening to my lungs.

It was truly a breath of renewal. You see, my Mayo appt yesterday left me with, for the first time in a year, a sense of optimism and hope. The doctors believe that my M.S. can for this moment be classified as benign. Everyone in the cancer world that I work in, knows the word benign is one of the most beautiful words in the English language. And now that word has a meaning to my M.S. It is just as it sounds. The M.S. that I have is slow right now and the only better news I could have received was that it miraculously disappeared. I know that is what many people are praying for anyway...

It was relieving to hear that after a full year I really only have 1 brain lesion, 1 spine lesion and then 1 lesion that was on the optic nerve. This is truly excellent news. Typically M.S. patients have 5-10 new lesions on their brain at every MRI scan. Yes, treatment can help the process but it can't stop it so these lesions can pop up even without symptoms. I don't know if the latest brain lesion is linked to my recent short term memory loss but perhaps. It is however, something I can live with at this time.

I want to extend my absolute gratitude to the doctors at Mayo Clinic who took interest in my case and made time to fit me so quickly this month. I feel honored to have such exceptional care at my finger tips in Minnesota. Those of you who access the Mayo system, I hope you know what a gift you have in front of you. Whether it be outstanding research and life saving treatments or just exceptional brand awareness, I believe in the business of Mayo Clinic and the reputation they have built world-wide. It is humbling to receive such good news at my visit yesterday knowing full well that there were people in that very same office who were not receiving good news.

Friends, I am sitting here taking another deep breath and pinching myself because I just can't believe my good fortune. Yes I have M.S. that fact will live with me til there is a cure but I can live in hope that the disease will remain dormant in my body and cause little interference in my life.

What a great day.

Circus

As a kid, I always loved the circus. The lights, the animals, the thrill of the trapeze and tight rope walkers... to sum it up, a circus has a lot going on in quick succession and lately I can relate.

After a surprising call from Mayo Clinic on Wednesday, April 7, I have become my own tour guide through their massive health facility. I have been there a total of three times in the last two weeks, logging about 24 hours worth of visits and waiting in those three days. Not to mention, logging over 300 miles in that short time. After a cluster of tests to identify any number of problems, all the tests except for one, came back fine. Basically the pain I had, the high blood pressure, headaches and vision trouble are not new problems with my body. The CAT scan, which by the way is in my opinion, the most accurate description of the inside of a human body without slicing it open, showed nothing. Some minor defects in the arteries to the kidneys but nothing that is affecting my kidneys so no concern there. A slight velocity issue with my heart ventrical but probably something I have always had and further more, of no concern to the doctors at Mayo.

Probably the most dishearting news of all was finding out that there was a new lesion on my brain. This is the first lesion I have had on my brain. Basically a lesion is a scar that is left behind after the body eats away at the myelin or protective coating around the nerve. The good thing about this lesion is that I haven't noticed any change in my overall well being despite its development. The neurologist was pleasant and had excellent bedside manner, something I demand in my care. He said it was good that I was feeling fine and seemed to have no issues relating to the symptoms of MS. He questioned my medications and whether or not they were necessary. He stated that many MS drug benefits have been "overblown." His honesty made me trust him even more. I felt like for once, I was listening to someone who was truly concerned for my well being and not just prescribing the latest drug available. The side effects of my MS drug could be causing the high blood pressure so they want to see me again... They called today and now I am going there on Wed. for a visit with one of their MS specialist. It is amazing to me that we have drugs available to us that can cure one thing and cause new things to go wrong... Sometimes I wonder if just letting the disease run its course, is a better option that risking heart and kidney complications from drug side effects.

I am not complaining. Know that. I am so grateful that my care is now in the hands of the Mayo Clinic doctors. I am confident that this is the right place for me right now. I am tired of feeling like I am part of a never ending circus of medical appointments, bills, and balancing the home too.

Exhaustion from life's stresses are wearing me down. Thank goodness I have a beautiful family to come home too every night. No matter what this disease does to my body, it can't rip me of the joy I feel every time I am with the ones I love.

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...