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.