How I Stay Positive

I get asked often how I remain so positive.

To which I used to answer, with all sincerity: I just do!

It wasn’t till lately when someone challenged me with the question: 

what are the actual steps you take to remain positive? 

that I saw there were actual, distinctive things I do to remain positive.

First and foremost: I honestly believe the best medicine you can give your body is a good mood. And science thinks so too. Thinking positive thoughts in your head releases certain hormones that relax your bod and equip it for stress.

A firsthand example of this was when I had my bicycle accident. As soon as I landed I knew I’d broken my elbow and could see my humerous bent oddly and pointing out. I panicked. Someone called the ambulance. Someone else took care of my bicycle. There was a Mom with her kid. For some reason seeing that kid brought things in focus for me.  I cant say bad words in front of this kid (this was after I let a lot of f words slip).  I cant let this kid, staring at me terrified, see me cry.  I reminded myself I needed to stay calm, to focus on something good. I started repeating to myself, "I’m going to be ok. I’m going to be ok".  Outloud. And I believed it. So much so that by the time the ambulance got there, my blood pressure was in normal ranges. The EMT was quite impressed.

So, positive thoughts = good.

But how do you run to them easily when the going gets tough?

Training. Just like with anything, it takes time, persistence, and dedication.

Step 1. You’ve decided to adapt a positive lifestyle and mind and remain positive when the going gets tough. You have to want it.  You have to be willing to work for it.

Step 2. Remind yourself of this. Write phrases that remind you on postits and put it where you'll see it many times a day. Change the background of your phone to a positive phrased wallpaper. In those moments you become overwhelmed, you’ll see these reminders and then you’ll go back to step 1: decide to remain positive.

Step 3. Have a go to positive uplifter. For me, it’s puppies. Whenever I’ve had a rough moment where I just don’t want to be positive, I go to the puppies. Either in real life or on instagram / Pinterest. This is an immediate mood lifter. I then see one of my reminders, and then I’m back at step 1.

Step 4: gratitude list. Make a list of all the things you’re thankful for. Keep it within arm’s access. Go to it to add to and remind yourself often. Yes, mine has the basics: faith, family, friends, puppies. But it also has Starbucks. And pizza. And cycling. And the color rose gold. And Paris. And pool days. And so on and so on. It’s a beautiful list of all the things I’m surrounded with that are positive.

Step 5. Reward yourself. Every year on my anniversary with MS, I get myself a present. Something small (an engraved ring) to something big (my hope tattoo), it’s a reward. A reward for making it through the past year with a positive mind. It’s not always easy to do; some days, it’s REALLY hard. But rewarding yourself reminds your brain and your soul, you’re doing great, keep it up.

Step 6. Condition. It helps to have a friend in this stage, or a coach. For me, it was someone I was close to when I was newly diagnosed. Whenever I’d start weeping or complaining, he’d point out a positive lining. It was REALLY annoying. It caused many fights. Why couldn’t he just let me be sad? Then slowly I started to listen. I started to recognize the good. I then went from recognizing to LOOKING for it. And, in every situation, to this day, I’ve been able to find it, to find something good, positive. Even if it’s just me being able to breath: that's positive; I’m alive. 

You have to work the brain muscle and condition it to this type of programming. With time, it will eventually become so instinctive, you won’t even have to think. You just go there. You just are positive.

All this sounds good and attainable.  But what about on those really bad days?  The days where the light is dim and the positive light is dimmer.  What then?

• No “triggers”. First you have to determine what the triggers are. For me, it’s Facebook (all my friends are living life without me!), dramatic shows/books/movies, depressing music. These melt me in to a state. This also relates to what I surround myself with socially: on media and in real life.  Some people may be a trigger for you in some way (I really dislike the word trigger but here it is applicable).  And for whatever reason it is, maybe just take a break for a bit.  It can also be that someone is continually negative- when you're trying your best to be the opposite, their energy can be depleting.  As has become a very strong saying between my bestie and I, "bless and release".  

• Quiet. On bad days, I’m very quiet. This usually is because on bad days my speech isn’t working.  (: But also it’s to save energy. I put that saved energy in to healing my body from the hard day.

• Have a cry. Or reschedule. If necessary, I’ll have a little cry. Just a little one. And then I’m done. If I feel like I need to cry more, I’ll “schedule” it for another time (no joke). I’ll save it for, say, 9pm that night. By pushing it out, I give myself time to find something positive that will outshine that sad moment. If I need to cry though, it’s scheduled, just in case.

• Make a list. You don’t have to be productive to trick your brain in to thinking it is. If my mind is overwhelmed with thoughts, I’ll make a list of them. Done. They’re on paper/in my iPhone notes. No longer in my brain. Sounds silly but this works; my phone has so many lists on it it's probably quite obsurd.  The cool thing about this, when looking back retrospectively at "bad day lists" of what I'm anxious/worried about, these things I thought were so challenging, I've overcome.  

• Change the clothes. Even if it’s just switching from pjs to a different pair of pjs, I change. This is important in keeping respect for your body. Showering is just too damn hard some days but changing clothes is attainable. It gives me a little reminder I’m not giving up on my body, I believe in myself enough to change in to clean pjs.

• Talk to your go to. And don’t talk about your disease outside of “I’m having a bad day” and maybe a bit on what that means for you in that moment. Get lost in the conversation. Even if it’s just for 5 minutes, you contributed to society. You let your mind focus on someone else. You got distracted.

These steps help me to calm my body down. 

And then, I return to the basics:

Deep breath. Quick prayer. Can I be positive and look at puppies? Nope, still a bad day. Ok.

2 hours later: deep breath. Quick prayer. Positive time? Maybe. Ok.

3 hours later: deep breath. Quick prayer. Brain goes back to conditioned mind. I see a post it. Is that a puppy video? Omg puppies are so cute. Ok. Not every day is good but there’s good in every day. Tomorrow will be better. Good night.

Then there are the quick moments: your doctor just gave you bad news. You have to drive home but can’t stop crying. You just want to crawl in a hole. What do I do?

Breath.

Do a body scan.

Head. Shoulders. Back. Hips. Legs. Arms. Am I contracting those muscles? Release. Contract. Release.

Breath.

Look at you- you just took your mind off the bad for a few minutes. You’re going to be ok. Repeat that over with a deep breath in between each movement. You’ve got this.

All this might sound ridiculous. And even while writing it out, I thought “really Eliz?! This is what you want to share? How you schedule your cries?!”

Damn right it is.

Because this is my recipe.

I’ve had some terrible things thrown at me. And yet I still wake up every day happy. Because why not? I’m alive. I’m beautiful. I’m breathing. I have puppies. I have God. I have my family and friends. I have Paris. And I have Starbucks.

Life is good.

Something I want to note is depression and MS have a very strong connection. If you’re feeling like you can’t think of a positive thought no matter how hard you try, seek counseling. Talk to your doctor. It does not mean you’re weak. Ms causes brain damage through demylization and sometimes that can cause depression. Reach out.

MS Doesn't Care

MS doesn't care that I had a great time in Boston spending NYE with one of my best friends.

MS doesn't care that I spent a wonderful normal day with my whole family.

We're so normal it kills me

MS doesn't care that I was in DC for a week, engaging in the 2015 sales season as a consultant. 

The last time I had used this mug was during rehab summers...and I used it during my week of DC fun.  Yes, I feel the irony.

MS doesn't care that I was kicking it's butt for a good couple months. 

Because a few Mondays ago I was squatting down to get something out of my closet and the next thing I know I've fallen because I have no strength in my legs. 

"Oh sh*t".  

Obviously I'm no surprise to the whole "I was walking one moment and then couldnt the next" (see my MS diagnosis story for reference).  But let me tell ya, it sure as hell does not get any easier.

After the suggested 24-72 hours before contacting the neurologist/specialist (ok for real I gave it 9 days...I was hoping it was just a fluke.  A girl can wish right?), I headed to the office in hopes of finding answers. 

Can we just take a second?  I mean really, the above pictures were taken a week or two prior...and now I'm stuck in a wheelchair.  Whatttt...I just "can't even".

So what's going on is my legs have no strength  - it's a mix of ataxia, tremors, spasticity, and paralysis.  That last word is key, because I've had all those others before - it's this weakness, this lack of any strength in my legs that is so rude right now.  And then we have my arms/hands - some of the same.  The odd thing about this whole experience is my voice is not affected (in the past when I had these symptoms, dysarthria always accompanied it).  While it's a good thing (I can speak!!!), it also showed a level of concern that this is possibly a different lesion. 

There were three possibilities of what was going on : a pseudo-relapse (when symptoms flare due to stress or some environmental factor), a re-activation of an old lesion, or a new lesion.  Those are stated in the order of severity, less to more, meaning we were hoping for the first. 

I got to spend some lovely time in the MRI (I mean, we're basically bffs by now). 

And because technology is so cool (!!!), I heard from my specialist that evening: it was a new lesion.  

"Oh sh*t" again.

Now I'm no stranger to new lesions...I mean this summer I had three new ones - nbd.  

What's different about this is where it is - I have a nasty lesion in the back of my brain that has caused all sorts of ruckus (basically what kept me in the hospital for more weeks than I'd like to admit).  And this one is guess where?  Right next door. 

YES!  

Though we have a plan of action, it has yet to really take place.  The collective "we" (myself, the fam, the doctors, the specialists) believe the best place for me is home.  Which is great for me because I can be in my comfort and with my puppies and can have the help of/boss around my bros and parents. (Have I mentioned how awesome my family is?)

But it sucks a tad too because I feel some people only take things serious if you're in a hospital.  Like, well, I must not be that sick because Im at home. 

No love, I'm actually so sick that the hospital is the worst place for me.  

I know, it doesn't make sense to me most days either.

So my lovely family has been making our house as wheelchair friendly as possible.  Where as before I could get around the house with the help of my arm crutches, I'm not so lucky this time.  And the conversations we have, oh its humorous (like which 28 year old talks about chair stair lifts with their parents, for their own use?!?  And yes, when we get it installed you can test it out). 

While I wait I've been trying to keep busy and have had some lovely visitors. 

My lovely gf and neighbor, the newlywed Holly.  

An old-time friend and classic, Caroline, who helped me with the whole hair situation (holding a curling iron is kind of a hazard at this time).

The twin bro's had their SnowBall dance this weekend...dont they just look so handsome?  

I'm thankful that even though life literally got swiped out from under me again, I have the strength to get through this too.  

My legs don't work but my spirits are high.  

I'm asked often how I "deal".  

Good music, a puppy, and Starbucks.  Oh and the Lord.  (:

For real, I'll be the first to admit that there are moments where I just let it go.  It can be something so small (one day I got stuck in a doorway) and you'll be flushed by the words that come out of my mouth.  Somedays I wake up and the first words I say are "this suckssssssss".  

Then I laugh.  Because what else can I do?  

That's how I deal.  I could sulk, I could shut everyone out.  I could just lie in bed and pity myself to the point of despair.  

But guys, it's just a wheelchair.  It's just a lack of arm strength.  It's just an upside down reality. 

But really, it's just that.  

I still have love, I still have laughter, I still have my puppies and family and friends.  I still have sparkle.  I still have hope. 

Hope in what I'm not exactly sure - I'm really out of options at this point.  A cure seems way too far out and the drugs that come out have such high risks associated that it's hard to justify.  

I believe my hope remains in being able to face this tragedy with a smile.  And a kiss.  And maybe the princess, Miss America Wave.  

Or the middle finger depending on the day. 

I stay the course because I believe it will lead me to something wonderful.  

Meanwhile, I'll just keep sipping this starbucks. 

Waving from the wheelie, Eliz

Heal Yourself - Tips and Tricks

I'd love to preach to the choir that I have the secret sauce, the miracle drug that will heal all of those suffering from multiple sclerosis. 

But unfortunately I do not.  Damn it. (:

And ps: anyone who says they do, just run away.  They're totally lying.  Full of love perhaps, but lies.

Yesterday there was a great article in the Wall Street Journey titled "How Patients Really Can Help Heal Themselves".  And while I couldnt read it wonderfully (blah eyes), I received a wonderful summary.  It got me thinking, with what a powerful message behind it. 

Here are some of my thoughts.

Im technically a newbie to this whole medical, MS world.  But I have learned some thing so very powerful in the process of healing myself, and that is learning to listen to my body. 

I had a wonderful/terrible way of learning this.  Two summers ago (and then again last summer), when I was really sick (one of these days I will put some more definition in to what that really means), I spent about a month in rehab.  Every day I had a team of doctors, a team of physical therapists, a team of occupational therapists, a team of speech therapists, a team of nurses, and a team of plasma exchange specialists asking me a simple question:

 "how do you feel?"

This simple question had deep underlining messages; how did I feel translated to did that treatment yesterday work?  Is this drug working? Do you feel better? Worse? That new machine, did you like it? What hurts today? Hows your energy today? Why is it low? Why is it high? Are you hot? Cold? How are your tremors? Have any sensation in your legs? Think you can walk further than 30 feet? Whats your favorite color?

My answers that I gave them couldnt just be "Im ok".  They had to be legit.  They had to be truthful.  They had to be detailed and answer the what/why/how follow up questions. 

My answers were my ticket home.  I was not getting out of there until the doctors thought I felt good enough, until I passed a certain test.  And the only way I was going to make it was by listening to my body on what worked and what didnt.

So that's how I learned to listen to the most powerful tool I had: my body. 

It frustrates me that my body is literally attacking itself (the definition of multiple sclerosis...again, something I can more fully define at a later point).  My immune system is eating my nervous system.  That's so not cool.

But I have respect for my body.  I love my body.  And listening to it I have found has brought me from a wheelchair to walking. Kind of a big deal.

Listening to your body doesnt always bring good news.  By listening to my body we've discovered that steroid infusions, a way to decrease lesion activity, doesnt work.  That Ms management drugs dont work.  That going gluten free, doesnt work.  And on and on.

And then there are drugs that possibly do work a little, but the side effects are too awful.  I was on a high dose of the wonderful/awful drug Klonopin.  I was also extremely fatigued.  So I lowered my dose and guess what, I gained more energy (more pain too but eh pain is normal at this point).

You are your best advocate.  

Granted, I am not a medical person.  I did not go to med school.  I get my information from wikipedia.  I google things like crazy and I can connect the dots.  But Im no expert.

But I know my body best.  I know when something just isnt working.  I know when something is. 

And this has caused some clashing with my doctors.  I was on tecfidera (a ms management drug) for quite a few months.  And I felt terrible on it.  Literally just awful.  My body tensed every time I swollowed the pill.  And I use to do needles every other day.  This was much worse.

I wanted off.  This is a risk.  But I knew my body would be better without it.  And guess what, it is.  My body does "feel" better.  But it comes with a price, being that my ms is not being managed (not that it was doing any managing anyway.  Stay tuned for my next post, playing with fire, where I will discuss how Im a ticking bomb with no ms drugs.  It'll be a fabulous read).

Some interesting statistics from the article.

I approach the medical practice as I approach business: I am hiring you.  There is a transaction for services (I am paying to hire my doctor).  Thus, I have the upper hand.  

You must enter your doctor's office with confidence.  And granted, they are intimidating.  They know a lot of information.  They may not be compassionate.  They may ask hard questions.  But remember, they work for you.  You are hiring them for their expertise.  You have the final say.  You have the disease.

Also remember, doctors arent perfect, they're human too.  Trust them yes but double check.  Sometimes they might not catch a drug interaction (there are great phone apps where you can put in all your medications and herbs and keep track of interactions, etc).  Sometimes they might miss a test result.  Sometimes they may inject you with a high risk drug, only to find out three hours later your blood results came back positive for antibodies (not that I know from experience or anything). 

And last, tell the full truth.  Tell your doctor every thing.  I once had a nurse tell me in one of my hospital stays "there is no modesty in hospitals, only humility".  I now take this quote to all my appointments.  There is nothing I wont say (probably some things they wish I didnt hah).  But I tell them every type of vitamin, herb, food, juice, etc, I take.  Nothing is too small.  Nothing.  Plus, you might bring something to the table that could help research down the road.  

At the end of the day, here is what we know: there is no cure for multiple sclerosis.  There is also no right way to manage it.  Some people find that diet helps.  Some people find that medications help.  Some people find that exercise help.  

The moral of the story is you have to find what works for you.  And it will take time.  And trial and error.  If something works for someone else, and not for you, that is ok.  Because your body is different from theirs.  Your disease is different from theirs.  

This is your life, this is your body.  Listen to it.  Learn from it.

And who knows, you might just have the power to "heal yourself".

Love, 

PS: Again I apologize for any misspellings or grammatical errors.  My eyes are still recovering.  Send them love. (: