Who's the Boss?

Well it has been a year since MS reminded me that it was the boss of me. Yes, yes I know my disease doesn't define me and blah blah blah... but seriously for the first five years minus the initial flare up, I was living symptom free for days, weeks, months... even years. Until May 2015. What better time for MS to show up than when my husband has moved to California and we are packing up our house to move across country to join him? Sure, why not? I can handle more... Actually no. No I can't. Seriously, it is a wonder I wasn't hospitalized last summer. Well I should have been and tried to see a doctor but I've told you that story so there's no sense in repeating. Now on to today. Today is about one year, give or take a few days, since "the flare up that never ends" started. Seriously it is still going on. A YEAR LATER. I have numbness in my head on the right side, still a numb left leg and sometimes the right side joins in after a long walk on the beach or hike through the hills of California. And of course, there's the vision thing. It is so much better than it was but it still goes double sometimes and it is down right frustrating. So today was a routine visit to my neurologist to update him on my symptoms, ask if a cure had been found and discuss my current drug. I am not a fan of my current neurologist but honestly finding a neurologist is about as fun as getting your wisdom teeth pulled without anesthesia. OK, I don't actually know what that would be like but I imagine it to be awful so play along... I found this neurologist as a referral and he's fine. He's not great. He's not personal. He's just fine. It has been six months since I started Tecfidera, a pill for MS. I am sure you've seen the glorious commercial of the woman who goes from hiking to swimming to a carnival and doesn't she look fabulous while doing it? Well the drug has been no carnival- I would get hives, itchy, wake up in the middle of the night with burning skin (think too many hours in the sun with zero SPF)... anyway it was just not for me. So I stopped taking it at the beginning of May. I've had some weird new symptoms that could be tied to it, could be MS or could just be God poking fun at me... who knows? So today I decided to revisit an old option, my first MS drug, Copaxone. This is an injection. Until a few years ago, injections were the only option. Then pills came along and heck, everyone signed up for that (or so it seemed) because who wants to give shots to themselves? Ummm, no one. So why am I going back on Copaxone? When I was on Copaxone, injections were SEVEN days a week... well new studies show that Copaxone injections only need to be THREE times a week so I am going to give it a shot (you like that play on words?). I didn't have any real issues with Copaxone other than the frequency of shots. T-minus about 30 days to first injection... that's how long the paperwork takes these days. Here's the sad truth of this little story. I explained to my neurologist today that for five years I really didn't feel like I had MS and now, every day, EVERY SINGLE DAY, I feel my MS. It sucks. I am not telling you this for sympathy. I don't want it. I am just educating you on my journey. I'll take your prayers, your well wishes, your free hot dishes (did you like that? that's for you, Minnesota family). If life has afforded you financial gifts to bestow, consider giving to MS research. You pick it. I don't care. Just get me a cure. Cure Autism too. Please and Thank you.

The F Word...

Fatigue. Have you experienced it? I mean the feeling where you are so tired, that your body is heavy and your limbs feel pain because of the exhaustion. Fatigue is a side effect of MS. It does suck sometimes. My biggest trigger is sleep, or should I say, lack of sleep. I've found that a solid eight hours is ideal but 10 makes me function even better. Fatigue plagued me quite a bit over the holidays but it was worth the experiences I got to have! Our family traveled to Tahoe, Phoenix and Las Vegas over the two week holiday break. It was a lot of driving - yes we drove! but it was so fun to see family! Living in California has been quite nice for me especially because I get to see my family so much easier (and cheaper) than in years past. You may be wondering how I am doing on Tecfidera and I'm happy to say that I am doing pretty good. I am sitting here at the computer with flushed cheeks at the moment but I'll take that over the the laundry list of side effects they rattle off in those commercials! The bigger question now is, "Is it working?" The answer... I have no idea. My vision is improved about 80% of the time. My numbness is the same and most likely permanent at this point. Although, miracles happen every day so perhaps some day I'll be back to full strength again. I am glad I chose to get back on medication. I was terrified of the potential interference with my day to day life but so far, so good. The lingering question for me of course is what if this doesn't work? Doesn't slow the disease down? Then what? Well that would mean shots again most likely. I hate shots. Does anyone like them? Please raise your hand if you like shots. For now, I am going to hope that the pill option works and I can continue on with my big blue pill twice a day. My next MRI will likely be at the end of April. It will check for disease activity and progression... if things are quiet, I'll continue this course. If the disease is rowdy, I'll try something else. I've heard about stem cell therapy options but that means chemotherapy to wipe out your immune system and rebuild it... YIKES. Right now there are clinical trials taking place in Chicago for this option. It's encouraging for the future of MS, especially those experiencing the serious side effects of this stupid disease. I am grateful for modern medicine, really I am. I just wish medicine would eradicate diseases instead of just creating band-aids to deal with them. I imagine most of you are nodding in agreement with that one, huh? Peace.

The honeymoon is over...

So much has happened since my last post in 2011! It is nearly the end of 2015, people! I'll admit my blog has been neglected for good reason. My MS has been relatively dormant until this past May. The disease decided it wanted to rear its ugly head right as we were making our second cross country move in two years... this time to California. Why was this move more stressful than our last move when I'd just had major surgery and had a 4 month old son, our third child, in December of 2012 when we moved from MN to GA. Maybe it was because I'd had a few symptoms over the last year, numbness mostly and an MRI in Nov 2014 showed some lesion activity on my spine suggesting that the disease was active, not debilitating, but silently reeking havoc. And then boom, I woke up with numb legs in May, days before our move to MI to stay with my parents til our house was ready in CA... I could still walk and it didn't hurt really but they were definitely numb. My feet were numb too so walking became a very focused activity, especially carrying an almost three year old around. I'd love to tell you I relied on my village to get me through but we were moving and my health came last... wait is there a place past last? That's where my priority of me was, somewhere beyond last place. When the kids and I got to MI, I decided I should go to an ER to get help because I knew the numbness was worsening and I just wanted to feel better. Well for those in medicine, you know you don't like it when someone with a chronic condition and an out of state drivers license walks in asking for drugs. I tried to get my Mayo clinic doctor on the phone with the ER doctor but ironically the nurses at Mayo were both off that day in the MS center. Go figure. The ER doctor said to follow up with my primary and the on call neurologist wouldn't even see me. I felt totally defeated. I moved my family, our stuff and our lives to a temporary location and then tried to make myself a priority only to be made to feel that chronic patients in transition can't be helped. This is just plain wrong. I left that ER with a 5 day dose of oral steroids, knowing it would do NOTHING for my condition. I begged to even get this, which as someone who worked in an ER for a year and saw all kinds, begging rarely makes you a more credible patient. As I suspected, I felt no better but I managed. I felt the numbness improve from time to time but it didn't go away and frankly it didn't get worse, thank goodness. My Mayo team offered no support, calling me a week after my SOS to check on my condition. Explaining I saw no improvement, they still had no suggestions other than I seek care when I arrive in my new state. Thanks Mayo. For nothing. We arrive in California and well we bought a fixer...A real one. Not the cute ones you see on Property brothers with all the potential and of course the cute contractors to get you through it. So I started unpacking and pushing myself to get the house livable while my husband adjusted to his new demanding job and our children got used to their new surroundings...there I went again, to the bottom of the bottom on the list... To top it all off, we decided to do a full kitchen remodel... rip out the old and in with the new. We did it on a budget with a lot of help from my oldest brother, a plumber friend and little help from my Home Depot associate. It's done. It's beautiful and I love it. As we were in the midst of this stressful rehab, I started to have trouble seeing... It happened around Labor day weekend while visiting my other brother and family in San Francisco. We've never lived close to my side of the family so being able to drive to my brothers (both of them - the oldest is in Vegas) is a dream come true for me. Back to my vision, it started to shake... like I was on a roller coaster that wouldn't end. I would just try to close my eyes in my free moments (HA!) and get more sleep (double HA!). Well it didn't get better... I called Mayo and asked for my records to be transferred to UCLA, where a state of the art MS center exists. The guy I spoke with at UCLA made me believe as soon as my records arrived, I could make my appointment. Well he wasn't lying but the first appointment I could get was November 24. Ummm, yeah. No. I bawled on the phone to the nurse, told her my vision was now double and the numbness was increasing again my legs... her advice. Go to the ER. Really, people?! It shouldn't be this hard to get care and the ER is not the place for chronic care! WebMD will tell you that double vision warrants an emergency visit but that's WebMD. I've worked in an ER and they would have either sent me to an eye doctor or given me follow up with a neurologist and a big ol' ER bill as a thanks for visiting present. Did I mention we were demoing our house?! An unnecessary ER bill was not what the doctor ordered... (did you like that pun?) We have good insurance but the bill would have been $500 easy and after a worthless ER visit in MI complete with a $500+ bill, I wasn't going to do it. I bought an eye patch and my son would go around the house saying, "yo, ho, ho" when he saw me. I thought the vision might heal on its own because when I had optic neuritis six years prior, it healed after two weeks with no treatment. Well I haven't been as lucky. It's been six weeks and it didn't get better, maybe worse even. Some days I'd trick myself into thinking it was better and drive with both eyes open, only to panic and shut my "bad" eye immediately. Just so you know, it's legal to drive with only one eye. Don't worry, I checked. Last week, I decided I was done waiting and was going to try a loop hole method to get treatment. I got an appointment with an ophthalmologist. He was terrific. Funny, friendly and agreed this was my MS acting up. Oh did I mention, I started to go cross-eyed. Yeah that was the last straw for me. I just couldn't bare for my eyes to look weird to kids and my husband. The doctor did the exam and said he would try to get me into a neurologist sooner. And boy did he. My eye appointment was on a Friday and my neurology appointment was the following Monday. Thanks for that one, God. The neurologist was nice enough. They are a unique breed. Geniuses studying the intricacies of the nervous system and this mysterious condition. Bedside manner is a bonus not often seen in neurology, in my experience. He said it was a bit late to treat my eyes. He said I should have been seen two weeks into my symptoms. I wanted to punch the wall. Really. I TRIED TO BE SEEN! I tried to follow the rules and do it the right and most cost effective way... But back to my eyes. He said we could go ahead and try intravenous steroids for three days and it may or may not work... we also needed to do three MRI's - brain, thoracic spine and cervical spine. We would also need some blood panels for more baseline information to what was going on. Here we go... Two days later, a nurse arrived to start my home IV. Having done this six years ago, there have been some improvements. This time I didn't have to have an IV pole on display in my living room and mix my own drugs. Everything came prepackaged and this little tennis ball sized bag was self regulated to deliver my medication right into my IV. Great! After six attempts and two nurses, the IV was in and my first dose down. I waited... I hoped. I want instant gratification at this point. To wake up and see normal. Nope. Didn't happen. Hasn't happened. It is now day two and the IV is still in tact. I am grateful for that! The second dose... still no miracle. There is just one more day. Now it doesn't necessarily work overnight but hey, a girl can dream right? So now it is your turn. Pray this works. Pray I get better. Pray I make good decisions regarding my long term care. Pray for a cure for this stupid, dumb disease. I really hate having MS. I could go on and on about how this is not fair to me. I've had my share of life experiences and this just isn't what I imagined my life to be like... what a terrible statement, right? There are starving children in Africa, even right next door, perhaps. And here I am whining about my medical condition. I have good insurance, I have a house, I have a husband who does his best to take care of me, I have three wonderful kids... There... my reality check is setting in. I have it made. This is minor, nothing really. I'll still take those prayers, though. Til next time... Jaime

I'm back...

Hello friends. I have neglected my blog for quite some time and well I blame facebook. I am able to update on facebook at a rapid speed and sometimes the thought of blogging just down right overwhelms me.

Just thought I'd give a health update. For the most part, I am doing well. I truly can't complain as there are millions worse off than I but since this blog is about me, well then I guess I will complain a bit.

I stopped medication last October after doctors at Mayo informed me that they didn't think it was the most effective choice and I could continue it if I chose, but that I didn't necessarily need to be treated at this point in my disease. Boy was that a relief? I do feel as though my first neurologist in the Twin Cities frightened me into taking the injections. I think and hope his intentions were in my best interest but it was nice to hear the professionals at Mayo leave the choice more in my hands without making me feel guilty if I chose the less popular, "wait and see" choise.

Stopping meds has been awesome. I hated doing daily injections and the thought of my MS was a constant reminder that affected my attitude and thinking... like I had a ball and chain at my ankle keeping me from living my life without fear.

Don't get me wrong, fear still rules my thoughts from time to time but not to the degree it once did. Most of the time, my MS sits quietly in the corner of my mind, keeping still and not aggrevating me and that's just down right pure joy. It's like losing your hair to chemo, everyone knows you have cancer, a constant reminder every time you look in the mirror. YUCK. Life is too precious to be bogged down with fear and hesitation about living a full life.

My attitude is better, most of the time. Sometimes I am still mad and wonder what did I do wrong, what caused this? How can I prevent my daugthers from getting it? But that isn't everyday. Thank goodness.

I am walking in my first MS event on May 1. You can of course, support me if you want. Otherwise know that your prayers are worth more than dollars I raise, because we know that God works all for his good. So somewhere down the road, maybe not in my lifetime, but someday this will all make sense and that is definitely something to look forward too.

http://walkmnm.nationalmssociety.org/site/TR/Walk/MNMWalkEvents?pg=pfind&fr_id=14671

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...

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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