M is for Mighty

What are those letters M. S. about?

An MS Sobriety Test

As I mentioned in my last post, we recently moved. In an attempt to get to know our new town, we decided to try a local establishment for our weekly date night. Our GPS dutifully lead us to a quaint little bar and grill tucked away off the beaten path. 

We enjoyed our time there. We heard stories of the famous patrons who had found this little gem in their attempts to escape the hustle and bustle, learned of the history, and enjoyed a great burger. We paid our bill and headed out, trying to decide what we should do next.
I had sipped soda all night, so I gladly took the wheel, although my darling spouse had just one drink with dinner. (Always drink responsibly!)
As we pulled out onto the road, I noticed a police cruiser pull in behind me.
“Any idea what the speed limit is?” I implored. 
“Nope. Maybe 35 or 40?” Was the not so helpful reply.
I plodded along at what should be approximately the speed limit, if a little slow, carefully observing all traffic laws. The officer followed.
As we approached a four way stop, I diligently came to a complete stop, and even sat there for an extra second as we strained to read the street signs in the dark. I proceeded forward, and on came the flashing lights of the officer to our rear. 
Shaking my head, I put down my window and waited. 
“Do you know why I pulled you over?” He asked.
“I have no idea.” I replied, shaking my head.
“In this state, when there is a white line on the road, you must come to a complete stop prior to the white line. Now at this stop sign, there was no white line. That means you must come to a complete stop before the stop sign. The nose of your car was past the stop sign. May I see your license and registration please?”
I was a bit floored by his meticulous explanation, but nodded, and gave him the requested materials. Here is where it gets interesting. “Where are you coming from?” He asked. 
A simple enough question, right? Not when you are new to town, and NOT when MS hinders your ability to find and spit out the correct word at the correct time. 
” I..ah… the uh… Over there at that bar and grill, I forget what it is called…” I stuttered and stumbled. 
He gave me a wary look. “Was it any good?”
“They had good burgers.” (I may have slurred those words.
“Where are you headed now?” he asked.
I paused. We hadn’t really decided. Maybe go to a movie, or find a Redbox? “I….uh….we…uh…downtown.”
The officer kindly left at this point to run my info. He returned with yet another question. “I am going to ask you a question and I want you to be 100% honest with me. Have you had anything to drink tonight?” My heart sank.
“No sir. Nothing at all.” I honestly replied. 
I am going to need you to step out of the car if you don’t mind submitting to a sobriety test. I got out of the car and followed the officer. My heart raced as he shined his flashlight on me and had me follow the movements of his pen for far too long, praying he wouldn’t ask me to walk in a straight line. He asked if I had cataracts, glaucoma, and a slew of other things, but MS wasn’t in the list. Did I think to mention it? Of course not. In true MS form, it occurred to me to mention this nugget of information AFTER he had finished his tests and we were heading back to the car. 
With this new information, he nodded, as if it all finally made sense. 
Clearly, I was going to get pulled over no matter what I did. I am sure it was a routine sobriety check. It had not, however, ever occurred to me that I may not be able to pass while 100% sober! 
As we drove to our new home, discussing the ramifications, I said, “Well, next time I guess I had better ask to take a brelfthalitzer.”  
Yes. An unintentional MS word mutilation. 
Yes, we laughed uncontrollably the rest of the way home.

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A New Chapter

We are at 2 years since diagnosis and happy to report, doing well. Tecfidera is doing it’s job, and while old symptoms ebb and flow, we are happy to report no new flares!
We have recently made a major life change. We started out just looking for houses with fewer stairs. (Our home was what they call a “five level.” You pretty much can’t go anywhere without stairs!) Then, as we travelled around, visiting family, started taking a peek at available real estate.
The bitter cold of Idaho has been rough for muscle spasms and cramping, but oddly enough, we have discovered no major ill effects from heat (aside from the discomfort and torture EVERYONE experiences at 110 degrees). This, of course, is NOT true for all who have MS. Through our research and conversations with fellow MSers, some people with MS cannot seem to even function in the heat. 
We are fortunate to have found some relief from the winter spasms and have made a move. We are now living in sunny Arizona. We have only been here a few weeks, battling the summer heat, but so far, so good!!!! 

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Milestones

February marks a couple of major milestones in our MS Journey. First, it marks one full year since the puzzle pieces fell into place and we started to suspect something more than stress and age related aches and pains. Second, it marks a full six months on the little blue pill… oh wait… not that one… the one that sounds like a baby rattle on its way down your gullet. 🙂

Frustrations:
1. I still can never seem to tell if the feet are cold or just numb.

2. Squirrel brain abounds!

3. Pens, keys, and other small objects are dropped with such regularity it is the expectation not the exception.

4. Cold = cramping… sucks!

Blessings:
1. I consider us extremely fortunate to have been able to put the pieces together so early in the disease progression.

2. I also consider us fortunate to have a neurologist who is up on the latest research and willing to take risks.

3. The timing was impeccable. Tecfidera was officially released on the market in March of 2013. We knew we were looking at possible MS in February of 2013 and got the official diagnosis in April of 2013.

4. After some emphatically unpleasant experiences with Avonex, we were able to start on Tecfidera in July – just 3 months after diagnosis and just 4 months after its release.

5. An MRI at the end of December showed no new flares.

Do you ever feel blissfully blessed?

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Catching up…

9/5/13

August was a crazy busy month for us at work and at home, so the blog has been neglected.

We are 5 weeks and 4 days in with Tecfidera – take two.  The probiotics are working great!  We got really lucky and hit the nail on the head on our first try.  (Lactobacillus Plantarum) In fact, the flushing has even subsided!

The down side of Tecfidera is that you really have no idea if it is working or not.  It’s job is to reduce the frequency of the flares.  It doesn’t take away symptoms, and it doesn’t prevent flares completely. I guess we just go on faith that the researchers did their job in the double blind studies.

On a Tecfidera forum that we frequent there have been reports of people noticing tingling in their feet.  It is hard to know what is just the MS and what could be the Tec.  We have been battling the foot tingle since this whole adventure started back in February.  It is always there to some degree, but varies in intensity like a rolling wave. 

Similarly, people talk often about “squirrel brain” which seems to accompany MS.  Have you seen the movie “Up?”  In the movie, there is a dog named Doug who continually distracts and interrupts himself .  In particular, he loves balls and squirrels.  If he sees a squirrel, he will drop everything to go chase it.  There seems to be less of a pattern to the MS mind.  All of the great intellect will be rolling right along and then, “SQUIRREL!” …. What? Exactly! Who’s on first?!?!?

Conversations around our house are interesting and often entertaining.  I am not sure if we have ever laughed so hard as with some of these “squirrel talks” by the end of which neither of us remembers the point or original topic!  Laughter is wonderful medicine and a great stress reliever. 

My challenge to you:  Every day, find ten things for which you are thankful.  If you are not thankful for the little things, then you have nothing.

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Persistence and Probiotics

Tecfidera is here! Persistence has paid off!!!! Starting tonight we will be shaking this Avonex funk and starting over with Tec!

We have decided to try it with probiotics this time. The Tecfidera Tummy Trouble thus far has been very limited nausea, no real acid or heartburn symptoms, but intense cramping, bloating, and gas pain. That would probably explain why the Prevacid and Prilosec didn’t really help.
In researching probiotics, I found there are many different kinds. Most of you probably already knew this, but it was news to me! The only one I was able to find that addressed gas and bloating was Lactobacillus plantarum. I then started at Wal Mart because someone posted that they used Culturelle from Wal Mart. When I started reading labels, it was primarily Lactobacillus rhamnosus GG. As I started looking through the different types, I was stunned by how many there were. Most of them were acidophilus, but I found two at Wal Mart that contained Lactobacillus plantarum. Probiotic Pearls High Potentcy was $20+ but the Spring Valley was only about $10, so we decided to give that one a try. We can always move to the pearls if this doesn’t work! 

I will let you know how it goes!

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Eureka!

Wow! We got a call from the neurology nurse today with a confirmation number for our insurance preauthorizing Tecfidera from July 23, 2013 – July 23, 2015!  Yay!!!!

Then, when I step back, it seems an odd thing to celebrate.  “Yay!  I have been approved for a medication that makes me feel like I want to turn my guts inside out and scrape them with a chisel!”  My, my, how life has changed!

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Pharma-wait and- cy

Is anyone else having trouble getting their Tecfidera? It was supposed to arrive Thursday but didn’t. Then we got a call saying it would be here on Tuesday. If we stayed “on schedule” we would run out of those beautiful rattley morsels on Friday evening, so we decided to ration them. Perfect! Fewer stomach cramps – well only half the day anyway, and still a steady stream of meds. 
 
Talked to the pharmacy again on Monday and they said they are still waiting for insurance and can’t get the Tec to us until Thursday at the earliest. 
 
After a few days of no meds and some creeping numbness, that Avonex in the fridge was looking pretty inviting. 
 
We call this “calculated risk.” We live 3.8 miles from the hospital and it takes approximately 10 minutes to get there. 
 
Onset of Anaphylaxis for intravenous is usually 5-30 minutes. In 80-90% of people the first symptom is a skin reaction. Get where we are going with this?
 
Thursday evening arrived with no ETA from the pharmacy and everyone frustrated with Blue Cross.  
 
Here we go! 
Avonex in….. Collective holding of the breath…. Kids all gathered and watching….. (For moral support I am sure)
Blessedly anticlimactic!
 
Unfortunately, whether it be from a med break and then launching into our first full dose of Avonex, or a lack of preparation (not drinking like a camel the day before and the day of) we discovered what “flu-like symptoms” truly means. 
 
The fever started at about 10pm. Muscle aches, around 11 or so. Time for an NSAID. Oh yeah…. we were supposed to do that BEFORE the injection! 
We thought of that one too late. The fever increased to an estimated 103. Chills? Heck yeah! Those hit around 1am. Spasmodic cramping joined the party at about 2am. Somewhere around 4:30am the fever broke and we were able to get some sleep. 
 
On the up-side, other than feeling hungover, REALLY tired, and just a teensey bit cranky… Okay…. A lot cranky…. Friday was on its way to being a normal day! Yay! 
 
After a nice weekend with our family, we are ready to fight the fight again. Watch out Blue Cross! Here we come!!! 
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Dare to Dream!

 

A  couple of days ago I was having a hard time wrapping my head around M S and the implications for our family. What will it look like in 10 years? 20? The answer is, who knows? It could look exactly the same as it looks today or it could be drastically different.
As I pondered this, I told the love of my life that I was angry that what MS really took from us, was the ability to dream. The Rubicon? Rome? Australia? Another degree? A career change? Being able to maintain this career? Putting kids through college? Which dreams are realistic?
The best answer we could come up with, is keep dreaming, and then make those dreams come true. Don’t wait. MS doesn’t just make our future uncertain, but it reminds us that everyone’s future is uncertain.
Dare to Dream!
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Q is for Quinoa

Qui-what!?!?  It is commonly pronounced Kee-nwa. According to the ever trusty Wikipedia, it is a “pseudocereal” rather than a true cereal or grain.  Rather than being a member of the grass family, it is a chenopod.  That makes it more closely related to beetroots, spinach and tumbleweeds.  (Sounds Yummy!)

Quinoa seeds contain essential amino acids like lysine and are a good source for calcium, dietary fiber, phosphorus, magnesium, and iron. Many sources claim that Quinoa is a “complete protein” and has an almost perfect balance of amino acids and actually helps boost the protein value of other grains!

Quinoa is gluten-free, easy to digest, versatile, and easy to prepare.  In fact, because of all these characteristics, quinoa is being considered a possible crop in NASA’s Controlled Ecological Life Support System for long-duration human occupied spaceflights.  Didn’t you always want to be like an astronaut?

Another interesting tidbit, the United Nations General Assembly declared 2013 as the “International Year of Quinoa” in recognition of ancestral practices of the Andean people, who have preserved quinoa as food for present and future generations.

To ease my family into the appearance and texture of this unique morsel, I started with white quinoa and substituted it half and half with rice.  The looked at it a little critically, but ate it up.  (Even my texture detector youngest did okay!)  After I became more bold (and even my pickiest eaters determined it would not kill them), I started substituting it completely and have incorporated the red quinoa as well.  One of the first things they noticed (especially my teens) is how quickly they are full… or “stuffed” would probably be more like it.  They are still working out the serving size.  J

A couple of favorites:

Breakfast burritos with egg substitute, quinoa, green chilies, black beans, and taco seasoning.

We also like to make a casserole similar to Hamburger Helper’s taco version and I started substituting quinoa for the rice.  Yummy!

A work in progress is the red quinoa lasagna.  The flavor was great and it was SUPER filling, but it just kind of went plop on the plate and didn’t look very appetizing.  Perhaps some egg substitute and flax meal to glue it together better?  We shall see!

A future attempt will be a recipe I stumbled across for “Quookies.”  I just really like the name!  J

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Tecfidera Tummy Trouble

We started Tecfidera on June 13th (120 mg morning and night) with the first full dose (240mg morning and night) on June 20th.  All in all, it is going well.  With the starter dose we could be pretty foot loose and fancy free about taking it with or without food, without additional meds, and without significant side effects.

The only side effect that reared its head in the first week (at least for the person taking the pills) was one instance of the “flushing” everyone talks about.  It is where you feel hot and your face, head, neck, etc. gets really, really red like a sunburn.  It lasted about ten minutes and then went away.  Not too shabby!  Confidently and boldly was the manner in which we took the next step.  About three days into the full dose, BAM! Sucker punch to the gut!

When they say “gastrointestinal incidence” and “abdominal discomfort” on the menu of side effects, they mean gut-wrenching cramps, gas, and bloating.  Oh… and don’t forget the “flushing” aka hot flashes with a rosy flair!  It is like PMS and menopause all in one!!!

I digress….

Solutions?  We have successfully managed the hot flashes…ahem…. flushing… by including a low dose aspirin with the morning dose.  Someone suggested Prilosec for the “abdominal discomfort” but after 11 days on the stuff, you would think we would see a difference.  We have tried all different kinds of breakfast and dinner combinations, hoping to stumble across the offending food or uncover the miracle soother, but to no avail.  Does anyone know what the biochemistry is for the “abdominal discomfort?”  Any ideas on what might help?

I know the side effects are supposed to subside in 4-6 weeks, but this part sucks!  Suggestions are welcome!!!

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