Living life the best I can: You Either Get Better or You Get Bitter

Living life the best I can: You Either Get Better or You Get Bitter: I don't want to be inspirational, I want to be an ordinary person.  Those words go through my head every time someone tells me I &q...

Back in my day...

Some of my best ideas come to me while I am lying in bed.  No I am not talking sex here, although I can see my girls recoiling in horror as I say that because there is nothing worse in the world than parent sex to them.  Maybe grandparent sex they have hypothesized, but since I am one of those I am sure my girls are wretching out loud for me even typing that lol!

Ok, get your minds out of the gutter!

But Brad and I were having our morning coffee, house empty save our dogs barking at every possible noise from a squirrel rummaging for acorns, to the kids across the street getting in their cars, and he was looking for a YouTube video that would explain how to wire a particular project he wanted to do.  As he watched more and more videos he was getting angrier and angrier at each.  They were so perfect, these people made everything so easy that it started to tick Brad off massively.  That is when we said WE would do a YouTube video, an honest one and we began to act out exactly how a real video should go, complete with all of the dammits, son of a bitches, OW, I just banged my heads and what the hell do you mean I need such and such a tool for the job???  Now I have to run to the store AGAINs!  Many of Brad's DIY projects send him to Lowe's multiple times.  We were laughing too hard at our vision of how a true video should go.  I even said we needed to add in our youngest as the laugh track because that child of ours laughs maniacally when one of us hurts ourselves (not seriously of course) and screams a swear or two.  Some of her favorite times would be recounting when one of us got hurt, like "hey mom, do you remember the time you hit your head on the speaker on the boat and you said "that's one" because you knew you'd be doing it multiple times??"  Cut to the vision of said child laughing until she is bright red and unable to speak as she tries to spit out the story.

Off track again, typical of my mind these days.  I am putting my thoughts down as they come up so you can see how a person with MS gets easily distracted. Back to our regularly scheduled blog~

Then I said to Brad. YouTube videos are the essence of social media.  I don't think I have ever logged in to Facebook, Instagram etc. and not have something smack of insincerity.  The whole look at me, I am living this fabulous life and you aren't thing.  The other thing that gets me is when someone nowadays gets engaged, married or pregnant.  Holy cow, you can't do any of the above without a cutesy hashtag and/or website to go with it.  

I routinely say out loud, "How in the world did we ever do any of those things without hash tagging it and having a full pictorial or website of said event??"  My girls always counter back with "that's life now" and I sound like an old fart whenever I bemoan such actions. I am like that old guy who yells at the kids sneaking in his yard to get their ball that went over the fence hahahaha!  I know it's what everyone does anymore, it doesn't mean I understand it.  I say a million times when I see a perfunctory shot of the engagement ring, "ok great it's a beautiful ring BUT have you thought of the happily ever after part?  After you get over your sparkly ring, saying Yes to your Dress and planning the bash of the century, have you ever thought of the hard work it takes to stay married?"  Judging by divorce rates now I am guessing no.  Once again, I am that old person screaming at the kids going in my yard lol!!  

Then my thoughts about the appearance of social media makes me compare it to living with MS.  Outwardly?  I look good, especially if I am just sitting still.  You would never know I am in pain, yes my legs hurt like hell if I stand on them too long.  I have this whole MS hug thing going on.  My left side right under my boob burns so badly it feels like someone is putting a cigar out there and it feels like I am being squeezed sometimes too (hence the whole hug moniker).  I have learned how to wear camis and baggy shirts so no one can tell I cannot wear a bra anymore.  It hurts too much and makes me glad now that I am a card carrying member of the IBTC.  At least I don't have to deal with hefty boobs that need support!  You would never know what I am dealing with.  Everything looks so wonderful.  

I even had an inconsiderate neighbor once say to me, "well, you don't look sick".  Yeah that's because you don't see the lightheadedness and spinning that occurs all of the time that makes me nauseous.  You don't see me having to sit after I shower because the difference between the warm shower and the cooler air outside is enough to make my legs buckle (bet you never even considered that when you get out of the shower).  But yes, I do have things going on and outwardly I look like everything is hunky dory.  Maybe I don't want to be sick, or hobble around like I am.  I hate nothing more than having to use a cane in public.

So you're right, I suppose I don't.  And I suppose YouTubers have to do a million takes to make everything look so perfect and easy.  And most people on social media are posting because they are truly happy and want to share it with the world.  And me having MS doesn't make me sick, just a person navigating her life and all that goes with it.

In every walk of life each man puts on a personality and outward appearance so as to look what he wants to be thought; in fact you might say that society is entirely made up of assumed personalities ~ Francois de la Rochefoucauld

You Either Get Better or You Get Bitter

I don't want to be inspirational, I want to be an ordinary person. 

Those words go through my head every time someone tells me I "am an inspiration".

As I have stated before, I was diagnosed with MS many moons ago and chose to ignore that diagnosis.  That is until almost 30 years later it came screaming back in my life, telling me I could no longer ignore it.  It has altered the very essence of me.  Trying to figure out if that is good or bad.

The conversation I had this morning with my husband got me thinking hard. It came after he asked me what my plans were for the day and smart ass me quipped back, Oh running a marathon, driving cross country, ball room dancing....

Seriously though? What is it that I do everyday?  What has my life become, who am I even??  I am trying to find me again. He even said he missed me. I miss me. But I guess I miss the old me. The me who could drive, pick up and go and do.  Who could run, maybe not well, ride a bike and fall off sometimes, who could swim, who could do Crossfit enough to keep me in shape, who could drive and not be a danger to anyone on the roads.

Then I thought back to my meditation this morning. It was so relevant to that thought. What’s that? You’re wondering if I really meditate? Well yeah I do. I have to, in order to maintain my sanity. All part of this new me. 

Believe me when I say I didn’t choose this new persona. Not trying to be all New Agey.  Just making sense of the deal I am dealt. That “shit sandwich” as my husband so eloquently, and correctly, coined my new reality. 

So in order to find me and figure out what it is I do, I started thinking of how things are now. How a day goes in my life, trying to think if it is so different.  I wake up, bladder screaming at me.  Not that big of a deal is it?  How inanely normal.  Not so much, the part of getting up and in to the bathroom in time, so that I am not reliving my two year old reality, is the stuff that no dreams of mine are made of anymore.  The song from that Christmas special, just put one foot in front of the other, comes to mind. See walking isn't something I do mindlessly these days.  I have to consider every step or I can fall, it isn't automatic and that is exhausting in itself.  

Then I go back and lay there in bed.  I am so unbelievable lucky that I have a husband who brings me coffee every morning.  But there is the part of me that wants to go downstairs, let the dogs out, make breakfast for my 17 year old and send her off with a "have a good day".  The things I was lucky enough to do for my other girls. That is not meant to be most days.  The days I manage to are the days that end with me falling asleep on the couch that night.

We have *gasp* stairs in my house.  What's the big deal right?  As I have said before, stairs are no friend of mine.  I hold on, taking each step slowly and deliberately and hope my left leg doesn't decide to revolt as it is wont to do these days.  I thank God every time I make it down the stairs and don't fall.  I also do as few trips up and down the stairs as possible every day.  Why tempt fate?  Knock wood I haven't fallen yet, so why tempt the powers that be by multiple trips up and down the stairs?

First thing I do once I get downstairs is take my meds.  Yes, my world each day is remembering to take my medicine.  Thankfully, or not thankfully I haven't figured that one out yet, I don't have to take a daily disease modifying treatment twice a day anymore that if you miss a dose you can trip an exacerbation.  I do take "the walking drug" as it is called, to help with my walking and it works for me. I was one of the lucky 30% it does help, but if I miss a dose of that, it won't hurt me.  I have been switched to a pretty intense drug, one that hopefully will stop the disease progression more than the last two drugs I was on.  At least this one isn't making my hair fall out by the handfuls or make me flush so badly that it feels like someone set me on fire and rolled me around in broken glass.  BUT this one, which is an infusion every six months, has the lovely possible side effect of causing breast cancer.  Isn't that great?  Hopefully, that doesn't happen, hopefully it helps, but no DMT is 100% effective, so let's toss those MS dice again....

Time to start my day downstairs. I tidy up the kitchen, throw in a load of laundry, or some other mundane house hold chore that I am overjoyed to still be able to do, I usually overheat with all I try to do so I start staggering around feeling like I just got off the Tea Cup ride at Disney. Now I have to make myself sit.  Until the world stops spinning, or I feel stable on my feet again.  

I still work, I do everything from my home office, or have work brought to me to do.  But what took a day to do once upon a time now takes three.  I cannot just do work things mindlessly anymore because I have done the same tasks for years.  I have to check, recheck, and recheck my work to look for mistakes.  They still happen, but are way less common now that I have a system figured out to reduce error.

As a person who used to love working out, I continue to try.  That comes after work stuff.  I am lucky to have a fully kitted Crossfit gym in my garage, and a Peloton.  It try to lift three days a week and ride 5 days a week.  Plus I do Yoga or stretching.  All of this is supposed to help my fatigue.  I know it helps my mental health.  Speaking of fatigue?  I am one of the lucky ones who fatigue hits, and hits hard.  Some days, when I wake up?  I feel as though I ran marathons in my sleep.  No amount of sleep helps that.  By the end of the night, after dinner is done?  So am I.  I sit with my feet up and a cup of tea.  I am trashed.  Like I did back, to back, to back Ironman triathlons.  That's when walking gets super fun.  I usually hold on to things as I make my way around.  I refuse to use my cane at my house.  

Things like going to church?  Yeah, that doesn't happen anymore.  It's hard when you can't really drive, but I avoid crowds and germs like the plague, literally.  I never understood the people sounding like they are struggling with tuberculosis, hacking their brains out, trying to make their way through mass.  Believe me when I say I am sure God would understand if you missed church because you were sick. Plus, you're not thinking of the people like me, whose immune systems are being altered.  People like me who could wind up in the hospital because you had the Flu but HAD to go to Mass and sing so everyone can think, WOW there's a good Christian person, suffering like that and still here! Believe me when I say, you're impressing no one.  I haven't been in awhile and am trying to foster a meaningful relationship with the Lord on my own, without putting my health in harms way.  A friend of mine on Instagram posted something about God not wanting visitation only on weekends.  That struck a cord with me because I am struggling with my cradle Catholic guilt over missing mass while trying to foster a better relationship with the Almighty on my own.

My family is wonderful, they constantly try to step in and help me out.  I have to admit I get like a toddler more often than not though.  I want to scream at them "I do it!!"  and stomp my foot.  I hate how much of my life is gone, please let me do stupid stuff, especially if I am in the throes of it.  I am not a fragile doll, but I know they see me struggle, struggle with the fatigue and over doing it.  I know they just want to help. I would do the same for them, and still try to. But I hate feeling like an invalid.  

Ok, this is devolving into me sounding bitter and angry.  Yes, there are some days I am, not gonna lie.  But most days?  Thanks to daily gratitude and meditation practicing? I understand how lucky I am.  I know people, people I regard highly, who are living the nightmare of losing a spouse, or of having had a seriously sick child.  Things that are way worse than the reality I am living.  I see people on their giant hamster wheel of want, toiling away every day trying to be better than the Joneses or have the most toys at the end because they think they are winning, but truth be told? I feel sorry for them.  They have no idea how blessed they are, they are missing the simple things.  

Seeing how excited my grand daughter is to see me? How she runs to me arms outstretched when she knows she will just be sitting in her Nee's lap, eating gummy bunnies, singing her favorite songs? Or having my Ant sharing his secrets like he wished he could fly or he wished he was invisible so he wouldn't have to take a bath anymore as he is snuggled up next to me? Those are things that bring such happiness, and it doesn't matter if my legs are working the way I wished they would. I get it now.  There is nothing better than these moments as simple as they are.

When my new neurologist at Johns Hopkins asked me what I hoped to accomplish being treated at their MS Center, it didn't take long for me to answer.  I said, "I want to walk my dogs again, I want to chase after my grandkids, I want to Cupid shuffle with my girls in my kitchen one more time.  He smiled and said that none of those were unreasonable or unreachable goals and we devised a plan to hopefully get me there one day.  I should have said I want to walk in my heels again too lol!

I actually said to Brad not too long ago that in some ways MS has been a blessing for me.  That it woke me up to the fact I was missing the good things around me.  I don't need some expensive handbag or a fancy car to make me happy.  Each and every day is a gift when I get up and CAN see, CAN walk to the bathroom, CAN make my way downstairs, CAN sit in my roly chair and still make some bitching dinners that my family raves about.  That I am surrounded by family that loves me the way they do.  I am blessed beyond measure, and I no longer miss that fact at all.  My happiest and best times, I am surrounded by my whole family, eating dinner, bantering back and forth.  I usually just sit back and feel like I have to hold my heart together or it might burst.  We are having both the Grandmas here for Thanksgiving this year, something we are so incredibly lucky to do.  It is going to be a Thanksgiving that we will cherish forever!

I still struggle, once again, not lying there.  I know my whole family does, we miss the stuff I used to be able to do.  So I guess that's where we are looking for "me" and missing "me".  There are so many better things about me now though.  Things I forget while I wallow in the quagmire of the past, wishing for the things I used to do.  That is me not keeping present, not enjoying my now.  So much is wasted on that, too much energy, which I have precious little of.  How terribly human of me.  

As I re-read what I have written, I have to smile.  I am glad I see the beauty all around me most days, glad that I have learned to be gentle with myself on the days I don't, and glad to have learned to eat this "shit sandwich" I have been handed on the best bread possible.

So maybe it's good I have lost me, well part of me at least.  Because it seems to me, a better part of me is here enjoying each minute that I can.

"She made broken look beautiful and strong look invincible.  She walked around with the universe on her shoulders and made it look like a pair of wings" ~ Ariana Dancu

All I Want for Christmas....

When people ask me, what do you want for Christmas, or I make a New Years Eve wish as the clock strikes twelve, or I am blowing out birthday candles, a stock answer is usually "my health", “my family’s health”.  Everyone has done this right?. But do we really mean it? I know I thought I did, but I was just saying it.  Recent events have truly kicked me in the ass and made me realize how insincere that sentiment was as I carelessly let it slip from my lips.

My mom asked me what I wanted for Christmas this year before Thanksgiving and my answer was “something no one can give me”. I got that stupid knot in my throat that I get when I think about my life the last how many months before Thanksgiving. 

Mom countered with, “what’s that supposed to mean?” 

I said quite simply, “my health Ma, I want to be whole and healthy again”. As I sat and got absorbed in my self pity after I hung up the phone, I thought of how many times I have wished and prayed for my and my family’s health forever now and realized it was perfunctory.  It was just something I said.

Stuff started happening with my daughter Katie and her heart not too long ago, she is wearing a holter monitor as we speak and she’s on a beta blocker while the cardiologists are trying to figure it why she gets tachycardic the way she does. What the hell, I thought.  She's young, she had some ovarian cysts and that's it,  what in the hell is going on?

Then my grandson got sick, really sick and my world just crumbled.  I had a lot of time to sit and think and I realized just what that wish for my family’s health meant. As I sat in the PICUs waiting area, I bargained with God. I told him He could take my ability to walk, to balance myself, to see, keep me this dizzy forever, whatever MS was doing or taking away from me, if He made my little man better. Saved his little life. I told him He could take everything from me if He would make my Antknee better, make my whole family healthy again.

That is when I think I finally got it. Got what it meant to wish for me to be healthy, for my family to be healthy. When he started getting better, I made a promise that day, I would never just say "my health, any of my loved one's health" when asked what I would like for a gift, what I wanted for them in the New Year, what I wanted for my birthday.  If I was saying it? I was meaning it.  There is no Gucci or Kate Spade handbag that will keep anyone I love healthy, no fancy, waste of money car that I am driving around like a show off that's going to make me happier than my family being ok.

When Brad just asked me what I wanted for Christmas this year and I said I got the best Christmas present ever? That is the truth. No amount of money could buy me a gift that could replace my Anthony being here to celebrate with me. My family being healthy around me.  I want absolutely nothing that money can give me, and let me tell you, that was the most liberating thought in the world.  I have never felt more satisfied, happier than you can imagine with all that I am blessed with.  I am soooo much better off than most, every time I open my refrigerator now, and see the amount of food that is in there?  I say a small prayer of thanks.  I don't have to go to bed hungry like so many do.  Every time my girls and I make cookies, I say a small prayer of thanks. My girls are here with me, I saw little kids who weren't leaving the PICU, and here I am blessed with my girls, having an amazing time, being together and laughing.  Dealing with all I have lately?  Definitely gives you pause, but I like to think I am dealing with all of this because I can.  I can deal, I can understand, I am supported and loved, and we carry each other.  How sad it is that I know so many who put a price tag on happiness because their family lives are so empty?

And that feeling is shared by my family. It has been infectious. When we put our Christmas lights up together and marveled at the wonderland we created, replete with a giant inflatable Snoopy, or Foopy as our little man calls him, for Anthony, my heart was surely ready to explode from my chest. Yeah I was stumbling like a drunken sailor trying to string out lights through our bushes, but I honestly didn’t care.  And yes my Christmas lights have purple bulbs in the strings of color, because if any of you know me, purple is my signature color and it screams Merry to me.

Anthony is home from the hospital, Katie has a plan in place to keep her healthy. Erin is home from college and got all A's in her interior design classes so proud! Bailey's belly is burgeoning with my granddaughter, a healthy, fiesty, little gymnast who likes to wake Bailey up at 5AM every day.  My Heather is growing into this wonderful young woman.  She saw the things Anthony had to live through and I was touched as she cried when Anthony had to get blood work done and was so upset.  Her heart is so gentle it touches mine.  Brad had a wonderful experience at the Crossfit Games, but has chosen to focus only on us for awhile, and I have to admit, I'm not even mad about that lol! My family is here around me.  And me? I will be alright. Because I won’t let it be any other way.

Honestly, I feel sorry for those whose family’s don’t understand that lots of money and possessions mean squat. I wished everyone I know could have felt what it was like putting up my Christmas lights this year. Feel what I felt when I finally understood that all I truly want is for my family to be healthy, happy and together. I seriously feel like the Grinch, my heart is growing three sizes.

For those of you who don’t get it, don’t understand that possessions are meaningless without your health? Who has to have the latest Iphone, or tech gadget, latest popular trending item, fancy car, who are on what I like to call the giant hamster wheel of want? Get over it.  

The phrase the one who has the most toys wins? It's a load of nonsense.  I think it's more like you can't take it with you.  I also like to think it's like my favorite scene from one of my favorite movies Ghost, when Sam says, "It's amazing Molly.  The love inside, you take it with you"

If that's the case? I can die a happy woman, knowing all of the love I will be taking with me.

WI here we come!

Today I have been thinking non-stop about this coming week.  I almost feel like it's Christmas Eve!! So much to look forward to.  We are headed to Wisconsin!  Yeah, ok, I am sure it's not the destination of anyone's dreams like say Hawaii, but the reason we are going? It is a dream come true for us!  We have worked so hard to get here. I chuckle to myself every time I say that out loud. But like Brad said it was "us" that made this possible.

I think back how many months ago when we sat down to discuss this.  Brad said he was considering seriously trying to qualify for the Games.  He had been to Wodopalooza and the Granite Games, several times.  Both amazing events at truly exciting venues.  But they weren't the "big show" in his opinion.  They weren't the Games.  Brad has always enjoyed competing at any level.  Loves to have something to train for to keep him interested.  Anyway, when we sat to discuss him making a run at the Games we both knew what type of time investment he would have to make, and subsequently the rest of the family would have to make, to even try to qualify.  After a bit of talk and processing we both decided the time was right.  He was really doing well in his training.  Things looked promising.

Then, when we were all psyched for the Open, it happened.  He tore his meniscus.  That right there would have been the end of any kind of qualifying dream for most athletes.  But not Brad.  After getting help from a friend who knows knees (her contact name in my phone is Steph-knee lol) we got that situation as under control as we could.  My husband had to manage some pretty grueling qualifying work outs getting his knee drained, getting cortisone injections and wearing a brace.

I have to admit I was kind of pissed though.  Hadn't he dealt with enough?  He had to live through everything with his dad right before Wodopalooza this past year.  He missed so much training taking care of his dad's end of life issues.  When we sat back and talked about that, it was time he would never trade for any training for any competition.  Moments, some so incredibly hard, that he holds so close to his heart and wouldn't have if he didn't make the decisions he did.  He handled all of that so beautifully, with such love and grace.  Being the epitome of the most amazing son of the world. Taking care of both his mom and his dad, single handedly, and honestly not caring about anything but them? He was the reason that that time in their lives was the easiest it could be.  Making it possible to send my father in law to where ever we all may go after our time here is done, comfortably knowing his wife would be taken care of and watched over by us.

As always he would accept no excuses for not doing as well as he wanted at Wodopalooza.  He thought he just didn't perform as well as he knew he could.  When I mentioned to him all he had to live through, and especially the mental aspect and he still managed to do as well as he did? After all of that ffs???  It's what sets him apart from your average athlete.  That ability to overcome and still manage to do all that he did? That mental toughness? That physicality? You are the whole package and you are amazing!

So those were points I made while we were dealing with this whole knee debacle.  Brad was pragmatic as always and not willing to make excuses for anything.  He would do what he could do and if that got him to the Games?  All the better.  And guess what?  It did get him to the Games....

The big show....

The moment we have worked for...

Nothing was handed to you....

Let's add an extra dose of hard just 'cause the fates were being bitchy....

The moment we made it through these obstacles for....

It came in a congratulatory email that only 20 fifty year olds world wide get....

Now he will bring up he qualified at only 19th.  Good, let everyone dismiss you not realizing how much more you had to endure to qualify at all.  Both physically and mentally.  Let them not know you did all of that injured and mentally preoccupied once again..  Believe me when I say I think Brad suffers more with all that I have to deal with than I do.  Because he can't make me better, he can't help me when I try so hard to walk and look normal, when he finds me having moments when I am truly sad about all of this knowing I will always have to deal with some level of disability now.  But he honors me with saying I am the "why" when he hits a workout up and crushes it.  That me showing the strength and fortitude I show with trying to get through every day, smiling, taking care of my family and myself as beautifully as I do according to him?  It makes him want to smash workouts and give it his best to honor me. Stop it you're making me blush Brad!

Conversely? He's my why too.  He is the reason I look forward to waking up every day and see him laying beside me.  I know how lucky I am.  I see how he gives 110% in everything he does from competing, to work, to being a dad, a son and a husband.  He's nothing short of Superman in my eyes.  Just making it, once again dealing with every thing in front of you? And this time on the next level really?  I can't think of many people who could.  Most would just give in to their reality, use it as an excuse.  But not you, you are my Jon Snow (I would have said Arya but you're a boy hahaha!)** my hero.  The toughest man I know with the softest heart *sigh* the reason mine beats.

I am incredibly proud of him no matter where he finishes.  Even if he finishes 20th?  He can still kick almost anyone's ass hands down.  You've had a ton of adversity to overcome both physically and mentally and yet here we are.  Packing our bags and getting ready to hit Wisconsin up.  Watch out Crossfit Games!  Winter is coming**

The dynamic duo is on it's way, you may never know what hit you!!


**shameless Game of Thrones plugs included for my Bud lol.

Life is like a Box of Chocolates

Who doesn't love that line from Forrest Gump?  It's so true, you never know what you're going to get. I jokingly referred to this saying, in regards to my life once, as life is like a Pandora's Box of Chocolates.  I don't think I realized how spot on I was though.

We all know the story of Pandora's box, or I thought I did.  I can guarantee you I didn't open the magical box of MS handed to me out of curiosity to see what would come flying out at me.  In the mythological tale so many awful things flew out of Pandora's box (actually it was a jar) but there was one last thing left after pain, disease, misery and the like burst out, and that was hope. I had forgotten about the hope left in the bottom of that box.  Hope was there, in the bottom of my Box, I just kept choosing to ignore it.  The whole analogy of my life being a Pandora's box of chocolates took on a whole new meaning after I reread the story.  I now find myself grabbing on to my box, and the hope left inside, to make it through every day.

I have this book that Brad got for me right before life threw us this curve ball.  It's called the 5 Minute Journal and it basically is about practicing appreciation.  Learning to be grateful for everything you are blessed with.  Believe me when I say there have been days I'd rather throw the book at the wall than write anything positive, so I don't write, but I find myself reaching for it the next day filled with some renewed sense of gratitude brought about by some of the smallest things in my life (could it be this book is working lol??).  It can be as simple as hearing an I love you from my grandson, or getting blood work back showing my body is doing just fine on this disease modifying drug that I am on that could modify more than just the MS I deal with.  Or maybe it is a check in from one of the many of you, who are usually people I don't normally hear from, talk to, or would even describe as close to me.  It honestly does make me smile because I had no idea that people would take any kind of interest in me and what is going on.  Or maybe it is my husband bringing me coffee in bed every morning with a smile and an I love you *sigh*

I recently found a new neurologist whose specialty is MS.  He spent two and a half hours examining me, taking my history and discussing treatment with me.  Two and a half hours of giving me new hope where there was nothing but a lot of struggle mentally.  He and his nurse were fabulous and I walked out of there feeling like maybe there was a glimmer of light at the end of this dark MS tunnel I stagger down down every day.  It gave me the strength to search for places to try equine therapy, which is supposed to be so helpful for people with Ms.  Or MS support groups.  I found one called ActiveMSers that is a positive only group and they firmly believe that MS is BS, meaning MS is Beatable Someday.  When I get discouraged? When I need hope? I remember this medical team I have now that sent me an email after my visit telling me we had this working together.  I think of the check ins from my friends, I think of my husband and my family literally letting me hold on to their arms while I walk, which I metaphorically compare to them shoring me up during all of this.

I tell myself that with everyone's help, new medications and my new medical team, that MS is beatable (sounds remarkably like hope at the bottom of my Box doesn't it?).  It is why I still work out and keep myself in the best shape I can so when the cure comes, I can get back to working out hard and not miss much.  It is something I pray for every night as I drift off to the land where I am healthy again, running marathons, doing Crossfit hero workouts, lifting crazy weights, and don't ever have to concentrate on walking to make sure I don't fall.  A place where I can drink as much water as I want to and never have to worry about making sure a bathroom is nearby, a place where I can feel the warmth of the sun on my face and not have to worry if it will sap every bit of energy I have and force me off of my feet until I cool off.  A place where I can walk and not have people staring at me trying to figure out what the hell is wrong with me.  Someday when I wake up I want those dreams to be my reality again and I need to physically and mentally be ready for this.  That's my hope in the bottom of my Box.

I have hope and gratitude way more often than not lately.  I appreciate my life's little triumphs each day, regardless of how small and unimportant they might be to anyone but me.  I have chosen to assemble them into my very own Whitman's sampler. Only my new box of chocolates?  They are all good ones, ones that I will happily share with humanity. I actually look forward to opening this box and adding to it every day.

5 times a charm

I have started this four times now, not really knowing what I want to say or how to put into words what my life has been like.  The last four attempts came out all wrong.  One I was wayyyy too positive, and that, to me, was just a huge lie.  Yes I have positive times, but there are days when I am on the opposite end of the spectrum and feel like crying more often than not.  

One was angry and frustrated. Lashing out at people, the people bitching and moaning over stupid things, like poor me, I can't get my pull ups, poor me, I can't work out because I hurt myself.  Guess what, I feel like screaming, you CAN do the physical things I only dream about doing now.  You WILL heal. I never will ever so I don't want to hear your petty concerns when I am struggling to do regular living things.  

And don't get me started on the people who felt the need to tell me how lucky I am it isn't worse and nonsensical bullshit like that.  Yeah, tell me I am lucky when walking requires every ounce of concentration and energy I have, or how I am not driving because I am so dizzy. I know these people mean well right?  I have to remind myself to think of all of the wonderful friends who reach out to me almost every day, just to check in, say hi, offer to give me a ride if I need one, help with my mundane life stuff if I need it.  In the same breath I need to get past the people who I considered friends near and dear to me that have been pretty much absent during all of this. The people who went absolutely ghost. I try to explain to myself that we all have lives and are busy, or this sort of thing is difficult to deal with for some people, but I don't feel like having to make excuses or being understanding right now. I need the kindness and compassion so many others have offered. I have no desire to soothe someone else during my own issues. 

But still I have a need to release my feelings, to clear my head, maybe a post that needs to get out. Some kind of positive way to let myself move forward and deal with the hand I have been dealt.

Can I though?  My world is spinning wildly out of control. 

More accurately? I have become an illness. 

I look in the mirror and furiously hunt to see someone familiar, someone I used to know. How do I move past this? How do I move past the questions I face in my mind every morning?

I think longingly of when I would looking forward to the day. Spending time in the morning drinking coffee with my amazing husband, planning how our days would go. We'd talk about the workouts we were going to do, what we had to do at work.  It was how I loved to start my day.

Now I wake up because my bladder is screaming at me to move and get out of bed. The urgency is something I go through easily 30 times a day now.  Me getting up and actually getting out of bed? Well that brings up a whole host of what ifs that are pretty unnerving, the first being what if I can't walk? Then what if I can't actually pee?  Or what if the crushing dizziness decides to come back today?  What if the Aubagio keeps making my hair keep fall out like this?  I could continue, but you get the idea.  

After that whole thought process the rest of my thinking gets pretty skewed. I find any positive outlook I am supposed to have difficult to hold on to.  I am locked in a mental battle of I am bigger than this disease and no, you really aren't. Even after three days of infusions, almost 20 days of steroids and being on a disease modifying drug that has insanely unsavory side effects, you still look like a drunk when you walk.  As my daughter and her boyfriend helped me walk on the beach a week or so ago, I said I am getting a t-shirt made that says, "I'm not drunk, I have MS" so people will stop staring at me.  This is my life now, I just want to peel out of my skin and hopefully leave MS with the shedded skin.  That underneath it all is life as I wish it could be.  I feel so betrayed by my body.  I am not asking for much, I just want some kind of normal that everyone takes for granted.

That's the worst part for me I think.  Trying to do something as simple as walking on the beach or even walking to the ladies room while we are out without looking like I am doing a bad impersonation of Captain Jack Sparrow, or needing a personal escort, without the gaping mouths and stares.  It all gets a little discouraging.  The whole positive mental attitude, the whole I am bigger than this kind of flies out the window.   I become self conscious, I try to act like I don't see it, but I do. That it doesn't bother me, but it does.

I want to be able to run into the grocery store and pick up a gallon of milk and run out without having to hold on to a shopping cart for dear life.  Without walking so slow that there are snails and turtles feeling sorry for me as they lap me.  Without it taking forever to do something that used to take me 10 minutes max.  

Yesterday was my daughter Erin's 18th birthday.  I wanted to make her a birthday brunch she wouldn't forget, because breakfast foods are her most favorite things ever.  I knew I needed an early start, I got started by 8:30.  Brad came in and helped me about half way through, and we were done around 11.  I was grateful for the help because honestly?  I couldn't do it alone, I was getting exhausted from the effort.  We enjoyed an awesome brunch together, cleaned up, and I needed a nap. I was so wiped from something that simple, that once upon a time I could do by myself, all burners of my stove going at the same time, no problem.  Not anymore.  After my nap I came downstairs and started making her birthday cake, and dinner.  The cake had to be gluten free, so I made it from scratch, and chicken alfredo was easy enough, but by the time I was done with the next round of cooking I needed to sit. As a matter of fact I had to sit through the whole meal making process, I was thankful our stools were tall enough for me to be able to sit and cook at the same time.  

It was gratifying with how she thanked me, she knows how hard any amount of standing is for me, any amount of physical anything can be for me.  But cooking for my family's birthdays, making their cake, an amazing brunch and favorite dinner is something I have always done, and not something I am prepared to stop doing no matter how hard it is on me.  I'm not ready to wave the white flag on this activity yet. Still it made me sad when I thought of how taxing it was.  When my daughter gave me a hug and kiss and thanked me for the millionth time saying how much she truly appreciated it,  I answered back, "I may not be able to do everything like I used to, but I will always be able to cook for the people I love.

So maybe that's how I develop the positive attitude I need for every day.  Look for and celebrate the things that I can still do.  Not take for granted things like being able to see and try to keep a grateful heart for those things.  Be glad that I am blessed with so many people who will just sit and hold my hand and listen, whether it be in person or virtually, that constantly let me know that they care.  Be grateful that I have the family and husband that I do.  I cannot imagine how hard all of this is on them. How hard it is to see me struggle physically or mentally every day.  I cannot imagine how hard it would be every day for me to not have their love and support.  I think more than for me, but for them I owe them my best effort to make every day the best it can be.  So maybe that will be my plan. My survival guide.  I need to do something because this mental tennis match I play every day is getting old and quite frankly pissing me off.  New strategy, new game plan.  

I will let you know how it all works out.

Adversity has the effect of eliciting talents, which in prosperous circumstances would have lain dormant ~ Horace