M is for Mighty

What are those letters M. S. about?

Sometimes it Isn’t Black and White.

Anyone who has ever dealt with a chronic illness knows that choosing the right treatment path can be time, research, and prayer intensive. As stated in earlier posts, we have definitely had our ups and downs. Since June of 2013, Tecfidera has been a great medication for us. The side effects were quickly managed with diet and supplements, and we were able to celebrate NO relapses! Yay! Success! Right?
The tricky thing about success is that it is ill defined and has so many parameters. Tecfidera has been a great success for us on all fronts except one. It just happens to be the one that has the potential for a life threatening brain disease.

If you are familiar with the world of MS treatments, then you have probably heard of Progressive Multifocal Leukoencephalopathy, better known as PML. Fortunately, there have been only a handful of cases of PML for patients taking Tecfidera, and all have had some shared characteristics.  

One of the most important risk factors is widely believed to be a low lymphocytes count for an extended period of time. As with many things, the definition of “low” and “extended” seems to be a bit vague, fuzzy, and ill defined. We have however found that three different neurologists in two different states agree that we have successfully thrown the numbers that meet those ambiguous measures and can no longer be on Tecfidera. (ALC has been hanging out around 500 since May 2014. It dipped as low as 200 and hasn’t really cleared 600 since then). 

I hope the doc has a plan for gray…

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In the car!?

Let me start by saying that this move has consumed all of my time and it has been over a year since I have made time for writing (NOT because the adventures have ceased). In addition, this post has nothing to do with MS, but may bring a smile to your face.  ūüėä

In The Car!?

Let me preface this story by telling you that my mom and I have a solid two days into organizing, shopping, buying, sorting, and planning for our giving tree project. I am exhausted and may have lost a little bit of perspective. Using that filter, please recognize, that I think this could still be considered a near death experience.

Today, coming home after two hours of planning, six hours of shopping, and another hour of sorting, we had just left my school and were heading back to town. I was in my car, and my parents were in their van somewhere behind me. I was driving down the 60, reflecting on the day, and trying to figure out what I still had left to do tonight. I felt a tickle a sensation on my hand, kind of like a fly walking around on it, gave it a good shake wiped it on my jeans to be sure there was no fly, and kept driving. I was pretty preoccupied. Not two minutes later, I saw a ginormous spider walking down the windshield. It was directly in my line of vision. I thought to myself, “that is really odd that it can hold on and walk that calmly driving at highway speeds.” Then you know how in movies when the person with amnesia all of a sudden gets their memory back and all of these flashes of memories and images of the moments come flying at them all at the same time? Yes, that happens. All in a big WOOSH I realized that I was not looking at the belly of said ginormous spider…. I was looking at its back….. and it was looking at ME! 

Rather that shutting my eyes, taking my hands off of the wheel and leaping from the moving vehicle into traffic (like any rational person would do) I held my breath (I am pretty sure the beast couldn’t see me if I want breathing) and talked myself through the process of “signal right. Okay, now pull over. Nope, not too far. If you bounce on the dirt and rocks, the deadly creature that wants to eat your face will come flying off the window at you and you will surely die. Okay, now put the car in park. Now GET THE HELL OUT!”

After I got that far, I was not entirely sure what to do. I had forgotten my cell phone at home, had no flashlight handy, and was doing the yucky spider dance on the side of the road in the dark in my new Santa Paws kitty Christmas sweater.  

Fortunately before doing anything hasty, I remembered that my most wonderful parents were somewhere behind me. Soon, the chariot carrying those angels pulled over (probably recognizing the Santa Paws sweater and wondering why it was dancing on the side of the highway). My mom hopped out and I immediately started saying “I need a flashlight. I don’t have my phone and I need to see.” (Which in hindsight makes absolutely no sense to someone just arriving on the scene of the spider attack.)  

As she trustingly handed me her cell phone and followed me toward my car, she asked me what was going on. I tried to explain the situation but as soon as it became clear that it was an arachnid incident she started backing away and shouting for my dad. I believe there was a bit of hysteria in her voice and I heard her repeating, “THAT car? The car I was just in. The car I have been in all day!?!?”

My mind was racing as I tried to locate the wayward spider in the dark on the side of the highway. “If I don’t find the spider what should I do? Calling 911 seems a bit extreme. Perhaps animal control? Maybe AAA? Maybe just abandon the car?”

At this point, my dad was on the driver’s side looking for the devious hitchhiker and I (still on the exterior of the vehicle) continued searching from the passenger side (as far as possible from the original sighting.)

I was completely unimpressed when out of nowhere the aforementioned beast materialized right in front of me, again inches from my face but at least this time I had a piece of glass protecting me from its deadly force!

I announced its presence. Even my dad (who reacts to NOTHING) said “Wow! That is a good sized spider!” 

My dad reached over from the driver’s seat with a handful of napkins, made a swipe at the perpetrator, and as the wad was hurtling toward my feet at a great rate of speed, he proclaimed, “I don’t think I killed it.”

WHAT!?

I am pretty sure I didn’t black out, but it gets a little fuzzy. I remember yelling from my mom, lots of traffic, a quick prayer that she didn’t hurl herself in front of a moving vehicle to escape the NOT DEAD arachnid, a blur that I think was my dad coming around to my side of the car and a napkin in my foot that I really didn’t want to move but really wanted OFF OF ME!

In slow motion, I picked up the napkin and there in the dirt and debris NOT on my foot but dangerously close was a maimed spider. My foot reflexively defended itself and did the only humane thing which was, of course, to put the poor creature out of its misery.

I then proceeded to the space between the two vehicles, resumed an encore of the yucky spider dance, thanked my parents for saving my life, and shuddered, itched, tickled, tingled… did I mention shudder? the rest of the way home. I will be sleeping with one eye open tonight, and I may need a new car….

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Always hold on to the hope!

I want to start this post with a quick shout out to a family friend who was just diagnosed with MS today.  This journey can be stressful, terrifying, annoying, frustrating, and unpredictable; however, there IS joy, peace, acceptance, relief, learning, growing, camaraderie, and hope!  Always hold on to the hope!

When someone is new to this crazy world of MS, they have many questions, lots of advice, and oodles of choices to make.  It is hard to know where to start!  What medication? What supplements? What diet? What kind of exercise? Who do I listen to?  In this great information age, there is an overabundance of published research, articles, blogs, personal opinions, and advertisements from drug companies.  Some of it is great information, some is great only if you speak medical-ese, and some of it is crap!

Disclaimer:  I will pause here a moment to reiterate that I am NOT a doctor or expert of any kind.  The purpose of this blog is to share our personal journey and what we have discovered along the way. 

Having a family friend receive this diagnosis today triggered a barrage of questions from our eldest (now 18).  She has a new sense of wanting to understand the disease, what we have tried and why, and what has worked for us.  Although it is hard to accept that your kids don’t stay little, It is pretty cool to see them learn and grow, and take on the challenges of the world with an inquisitive spirit, grace, and determination.  It was, in fact, at her request that I am writing today.

Some of her questions:

Q: What medications have you tried? 

A: We started with Avonex.  It is a weekly injection. Some people have great results with this medication.  In fact, I don’t know if you are supposed to or not, but we noticed a decrease in symptoms pretty quickly.  The tricks to Avonex for us was drink LOTS of water for 24 hours PRIOR to the injection, take an NSAID prior to the injection, and take the injection before bed on a day that you don’t have to go to work in the morning.  The side effects were flu-like symptoms, some depression, and for us…. blisters. Which leads me to medication #2, Tecfidera. 

Tecfidera is medication is a pill that you take every 12 hours.   We have had to play quite a bit with the right cocktail to battle the side effects of abdominal discomfort and flushing, but have it all to a manageable level now with just a daily probiotic.  The occasional “sunburn from the inside” and ever-favorite “Tec farts” are all we have left.  We have not noticed and increase or decrease in symptoms after nearly a year on the drug.  Tecfidera is not designed to reduce symptoms, but instead is supposed to delay the relapse rate.  (If I remember correctly, by about 50% – but check that number before you consider it fact.)

Q: What other medications did you consider?

A: We really considered Tysabri, a once per month infusion, because of the significant reduction to the relapse rate (something more like 70%).  Unfortunately, with a JC+ outcome, we decided that the risk for PML was just too high.  We looked at Copaxone, a daily injection (cuts the relapse rate somewhere around 30%), and still a viable option, but ruled it out at the time.  With a considerable number of lesions on the spine as opposed to the brain, our neurologist advised a more aggressive treatment route and cautioned us that being injected at the skin level, many people can build an immunity.  We also heavily researched Gilenya, the first once daily pill (reduces the relapse rate by about 50%).  We have a personal connection with a patient currently on Gilenya and doing well, but for us, with some dysrhythmia issues, we were concerned about the possible cardiac effects.  The rumor mill is buzzing about a new drug (still in trials) that is showing great promise.  Based only on hearsay, the vast majority of the people in the trial are 5-7 years out WITHOUT relapse!  Always hold on to the hope!

Q: So what is that diet you guys are doing that is supposed to help MS?

A: Our own personal research on how MS works has lead us in the direction of the Paleo diet.  I say, “in the direction of” because we do NOT follow it very well.  We have taken the parts of it we feel like we can live by and then have made some “healthier than before” choices. (sad, but true)  With the Paleo Diet (whole books have been published on the topic and the diet itself is likely ‘owned’ by someone, so I will just give you the highlights) you pretty much stick to lean meats (wild game if you can), veggies and fruit, and seeds and nuts.  The reason we gravitated toward this one is because it tends to be Omega 3 rich with little Omega 6.  Based on our own personal research, we decided to include as much Omega 3 as possible (spiking everything from scrambled eggs, to spaghetti with chia and flax) and get rid of as many inflammatory foods as possible.  Aside from the benefits for MS, this has been great for our joint inflammation and allergies as well!

Q: Haven’t you guys done a lot with vitamins too?

A: Yes, we do a lot with supplements.  Based on, yep you guessed it, our own personal research, we have settled into a supplement regimen that seems to be working for us.  One of the first things we did after diagnosis was have a Vitamin D test.  There is some research out there that indicates a possible correlation between MS and vitamin D deficiencies.  The test came back, and sure enough, deficient.  It helped guide us as to how much to supplement the vitamin D. We do between 5,000IU and 20,000IU depending on the amount of sunshine.  In addition, we do mega doses of Omega 3 via fish oil.  The goal is 1 gram per day.  That means 1,000mg of Omega 3 (not 1,000 mg of fish oil…it will be significantly more fish oil).  Part of this can be cod liver oil, but not all of it because of the additional things cod liver oil supplies.  We also take a Turmeric tablet daily (anti-inflammatory support), 300mg of Co-Q 10, and 200mcg of Selenium.  Toss in a multivitamin and the probiotic for the Tec side effects and it is a tasty treat! (I highly recommend you do not try this on an empty stomach!

Q: When does “squirrel brain” (see previous post) start?

(In our home we are very kind and supportive to the MS patient with “squirrel brain.”  If someone scrambles their words or says something unintended we all chime in with “knuckles!” as a show of solidarity.  Hey – you gotta laugh!) 

A: This is where I explained how MS affects everyone differently depending on the location, size, and number of lesions.  I re-explained the active lesion and inflammation versus the scar.  Evidently I explain that one too often because I was met with a, “yeah, I remember the electrical cord demonstration at the dinner table.”  (I still think it was an awesome demonstration!)

I am sure this is WAY more information than you bargained for, and if you didn’t fall asleep four lines in, thank you for hanging in there with me.  I know everyone’s MS experience is different, but I think we have a great deal we can learn from each other.  I know that I personally have hundreds of hours invested in gathering information and researching on my own, and I know there are many out there just like me.   Comment, email, or message me.  I would love to dialogue, swap stories, and share ideas. 

If you would like to contribute to this blog, please let me know.  Also, if you are a fact checker and find errors, please let me know!

Until then, always hold on to the hope!

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Sharing Stories

Sharing Stories

This is a forum for MS collaboration. Kinda cool!

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New Treatment?

Paste a Video URL

I love the innovative thinking!

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Defeating Digestive Discomfort

Three doses down and no digestive discomfort! We are trying not to get our hopes up, but this is REALLY exciting!!!!!

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“The Patch” for MS?

“The Patch” for MS?

Keep in mind this is a very small study, but the concept behind it is innovative and I find that extremely exciting!

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A is for Avonex, B is for Blister!

The titration kit arrived. We had our injection training. The first shot (1/4 dose) left a pretty decent bruise and a hangover headache, but was otherwise uneventful.  The second shot (1/2 dose) only left the hangover headache behind. At this point, we are thinking we are home free!  Avonex without the flu-like symptoms, what a gift! The third shot (3/4 dose) left the traditional hangover headache and then, about 3 days later, red spots randomly scattered across the body.  ?????  What is THAT about?

We read all of the side effect warnings, allergy warnings, possible viral or bacterial infections… nothing.¬† The next day, more spots and these had tiny little blisters or pustules all over them.¬† We were thinking maybe shingles, but they didn’t follow any nerve root or pattern.¬† At a loss, we forked over the money for an urgent care visit and promptly stumped the docs there.¬† They did some research of their own and arrived at the same conclusion we had… no idea what it is!¬† They took our money, gave us the standard prescription for an antibiotic and sent us on our way.

Fortunately, the neurologist (who had been out of town for a week) returned and agreed to take a look.¬† He didn’t know for sure, but suspected it was an adverse reaction to the Avonex.¬† He strongly advised NOT taking the full dose shot that was scheduled for that evening, fearing an even more severe reaction.

Back to anger. Darn grief cycle!

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“Heart Smart” or “Brain Smart?”

Everyone has heard about cooking “Heart Smart” but what about “Brain Smart?” Here are some tricks to help you navigate the Omega 6 infested kitchen you are probably used to.

First, know what you are looking for.¬† I have been shocked to find that many food products will label and advertise that they contain Omega 3 but never tell you in what quantity!¬† (They also neglect to mention their Omega 6 to Omega 3 ratio.)¬† I do not know what the precise recommendation is for that ratio (those darn “experts” never can seem to agree!) but I always aim to make the Omega 3 as high as possible and the Omega 6 as low as possible.

Second, cook at low temperatures. I am not a scientist, so if you want a scientifically accurate explanation as to why, you will need to google a medical journal or something.¬† I will tell you how it looks in my head: You know those little pop beads that toddlers play with to learn hand-eye coordination and dexterity?¬† Well in my head Omega 3 chains are like one big long chain of those pop beads right after you get a new package.¬† When you play too rough with them then they come apart.¬† Then you have those free radical beads all over the #@*$ house and they are harmful.¬† If you don’t believe me, just try stepping on one!¬† So if the Omega 3 chains are over processed, become to hot, or are otherwise played with too hard, then they become damaged and break making¬†harmful free radicles.¬† Besides, when you kill off the fragile Omega 3, Omega 6 prevails.¬† It is sturdier and tougher but it is inflammatory and the exact opposite of what you want if you are a knight slaying the dragon of MS!¬† The point? Oh…be gentle with your Omega 3.¬† Keep it as unprocessed as possible and cook at low temperatures.

Third, get as much bang for your buck as you can!¬† Wild salmon has about 3grams of Omega 3 while farm raised tends to be more like 2grams.¬† Albacore or Blue Fin tuna has about 3 times the Omega 3 as “light” tuna.¬† Add flax meal and chia seed to anything you can hide it in (it doesn’t change the flavor much).

Here are some ideas to get you started:

I recently made a batch of Omega 3 power breakfast burritos (they freeze and reheat nicely). I started with 5 whole grain tortillas (each with a little bit of skim mozzarella cheese on them).  I then scrambled 10 Omega 3 enriched eggs, 1/4 cup flax meal, 1/4 cup Omega 3 enriched milk, 3 TBS chia seed, 1/4 c chopped onions, 1/2 can diced green chiles, and seasoned it with garlic, salt, and pepper. I then assembled them, wrapped them individually in plastic wrap, and put them in a Ziploc bag. Each burrito contained about 3grams of Omega 3!

Another powerful recipe, also nearing the 3 grams per serving mark, is an MS friendly granola. Mix together 2 oz of pumpkin seeds, 2 oz of sesame seeds, 1/2 c sliced almonds, 1/2 c chia seed, 3/4 c flax meal, 41/2 c oats, 1/3 c honey, 1/3c Agave nectar, and 3-4TBS of Omega 3 enriched cooking oil.  (We added some sunflower seeds too.  They are kind of Omega neutral and we like them!)  Spread the mixture on a baking sheet and bake at 300 for about 25 minutes (stir part way through).  Let it cool and then I like to stir in some dried or dehydrated fruit.  Raspberries and Blueberries are great sources of antioxidants!

NO RED MEAT!?!?¬† Seriously!?!?¬† and what are you supposed to eat instead?¬† WILD GAME!?!?!? Gag!!!¬† I am seriously NOT a fan. I have, however, developed four recipes for wild game that I can stand to cook, smell, and yes…even eat.¬† (The kids even like them!)

1. Wild Game Roast:  coat crock pot with olive oil.  Put in a 2-3 lb roast. Cover with onion powder, minced garlic, and apple slices.  Make gravy with beef bullion and 1c water.  Cook on low until tender.

2. Wild Game Roll-Ups:¬† Marinate meat in a low fat Italian dressing and then cut into 6″ strips.¬† Layer 1 strip of turkey bacon, 1 strip of meat, a spoonful of fat free cream cheese, and a pickled jalape√Īo slice.¬† Roll, skewer, and grill over low heat (10 minutes on each side).¬† *By the way, for grilling, I LOVE the new pellet smoker grill!*

3. Meat and Potatoes (Or rice, or quinoa, or bulgur….) Start with approximately 3 lbs of meat in the crockpot.¬† Add soy sauce, Worcestershire sauce, yellow or Dijon mustard (good source of turmeric!) a can of cream of something soup (“healthy choice”), a can of¬†water,¬†onion, garlic, and pepper.¬† Cook on low ALL DAY so it is nice and tender. Serve over mashed potatoes, rice, or quinoa, or some other starchy something.

4. BBQ Р2-3 lbs of meat in the crockpot (are you noticing a theme?) Add chopped turkey bacon, BBQ sauce, liquid smoke, onion soup mix, and water.  Again, you will want to cook it on low for several hours until it is tender. This one is great served on whole grain buns with a side of baked beans!

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Hop, Hop, Crash!

A few weeks after diagnosis I kind of hit a slump (I am thinking it was probably the “depression stage” in grief cycle speak).¬† I wasn’t really angry or sad, just blah.¬† As I was getting ready for work one morning, silently pondering the mysteries of life, I hear my husband holler, “wow! That was almost a hop, hop, crash!” Puzzled, I went into the bedroom where he explained to me that he was putting on his pants, caught his toe, lost his balance, and almost went crashing down. (Apparently we ALL need more sleep).¬† We mused about the close call and I resumed getting ready.¬† Suddenly I burst out laughing. I don’t mean just a little laughing, I mean gut busting, tears streaming down the face, gonna pee my pants kind of laughing.¬† You can imagine my husband’s surprise with this unprovoked outburst of frivolity.

“What’s so funny?” he asked, chuckling slightly at the joke he had yet to hear.

“Hop, hop, crash.” I managed to squeak out through my laughter.

To this he frowned. Not like an angry frown, but a confused, what kind of alien has possessed my wife kind of frown. “It wasn’t THAT funny.” he said.

I couldn’t speak.¬† I shook my head, helpless to explain.¬† After what seemed like an eternity I explained that in his stumble, I stumbled upon my new metaphor for life.¬† Life throws something in your path, you catch your toe and begin to fall, your body fights to protect itself with a hop in hopes to regain balance, you think you have it back under control and then start to waver again, another hop, a sigh of relief, and then CRASH! you hit face first into what life has thrown your way.

There will always be something on which you catch your toe.  You may be able to right yourself after the first hop, or maybe the second, but sometimes you crash.  I think the real secret for a full and meaningful life lies in the crash.  That is where you commune with God.  That is where your interdependence with others forges family bonds and friendships with a strength like no other. Yes, it is all about what you do after the crash.

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