Living life the best I can: A Time to Laugh a Time to Weep

Living life the best I can: A Time to Laugh a Time to Weep: There are sometimes having MS is harder than other times.   I have made mention that I hate social media and all of its fake-n...

A Time to Laugh a Time to Weep

There are sometimes having MS is harder than other times. 

I have made mention that I hate social media and all of its fake-ness although I was the biggest offender once upon a time. I avoid it for the most part most days.  Other times I feel the need to see what's happening in the land of make believe.  

I hopped on FB two days a go and saw a post that made me so insanely sad. A neighbor from when we lived in Woodlake how many years ago had passed away. She lived across the street from me. 

My neighborhood in Woodlake was really idyllic when I think about it. I had a network of neighbors I could rely on seeing as most of us were from somewhere else and had precious little family to help. We had the reciprocal pantry as I like to call it. Need eggs? Send your kid to go banging on one of your neighbor's doors.  Need potato flakes from a box because someone’s daughter has pneumonia and that’s all she wants to eat? My pantry is your pantry.  Chili powder? Do I have some you can borrow?  Of course!  And it was never expected that you had to replace it because you knew that someone (or their kids) would be at your door asking for a food favor in return.  

Worked the same way with all of our kids. Need someone to keep an eye on a kid while the other one needs to go get her chin stitched up? You need someone to watch your other kids while you go to the hospital because your water just broke at Midnight? It was never a worry.

I used to laugh when I saw my oldest on one pedal of my neighbor's exercise bike she kept in her garage and her best friend, my neighbor's son on the other side, pedaling away for hours at a time.  Or the time those two were doing karate kicks at my garage and said son's shoe flew off and went through the window on the garage door.  I was pregnant and sort of large and grumpy at the time.  The exchange was pretty hilarious when I think about it now.  

My heart is kvelling thinking about these thoughts.

My neighbor who left this world had a Corgi that I loved. She (and a few other neighborhood women) gave me a baby shower for my fourth kid. I made a treasure chest birthday cake for her daughter’s Pirate themed birthday one year. That daughter grew up in to this marvelous young woman. She even gave Bonni Blue Bell (my bike I did my IM on) a new home so she wouldn’t languish and rot in my garage. 

It was a really amazing place. But because of all of the kids our family had? We outgrew that Woodlake house and had to find more space. Slowly our neighborhood started to dismantle. We moved to another subdivision, families moved for jobs etc. and I lost track of these fine people, as our lives diversified, who made our move to VA a pretty easy transition. There might be three of the original families there from that time in our old neighborhood.  Whenever we are feeling nostalgic, we drive through Highberry Woods and look at where we used to live.

Anyway, come to learn one of the OG from the neighborhood left this world for a better place and my heart sank. I reached out and contacted her daughter. Offered my condolences as shallow as that always seems and asked what we could do. I asked what her arrangements were. When her daughter told me the time and place that was when I realized I had no ride. 

Here is where MS is more hated than other times in my life.

Brad was out of town for the next two days, Katie was working and had clinical for nursing school, Erin is in Arizona and Heather had school. Bailey offered a ride and I was going to take her up on the offer of help. 

Then Heather got up at 3 in the morning being stomach sick. I didn’t get back to sleep from there pretty much. Ok, I will be staggering along.  MS and not sleeping properly, or resting well is a bad combination for me.  It's ok I said to myself.  I have my cane and will use it, sit right away when I get there, it will be fine.  Then Bailey called that morning to let me know Ant was feeling sick and not going to school. So essentially my way to get there wasn’t able to do it anymore. 

I convinced myself that it was only a mile to the Methodist Church where her service was. I could walk. It might take forever, but I could try. 

This is when having MS sucks more than usual. While I was formulating a walking strategy I had to sit. The 3am wake up was sneaking up on me. So I sat, tried to get my legs underneath me again as I say and decided to find something to wear. That knocked me on my ass and I had to put the thought of that walk, even though it was something I ran a bajillion times once upon a time, to rest. 

I was going to get in touch with her daughter again to ask for a ride but seriously? This wasn’t about me. Wakes, funerals etc? They are to help the grieving process. Help the living deal with the pain of their loss. In reality, I figured not at all in this equation. She needed to be there with her dad. This wasn’t about me. The last thing I needed to do was place my need to be there to say good bye in front of her needs, or her dad's.  Their need to grieve and process their loss was way more profound than anything I was feeling.

I texted my best friends asking for absolution. I felt so badly about missing.  But one said to me that my friendship with Julie was "a snapshot in time kind of friendship".  That we all have them and mourning her loss on my own, with the nice memories of those things I did with her and a prayer offered for her would be a really nice thing to do.

Truth....

So I made myself sit and I thought of her. Prayed for her, her family and close friends. Hoped they could find solace somewhere.  I thought warmly of our old neighborhood. Of the people, all of the fun, how it was good to know you had a network. A village who had your back. Ask me about Halloween there and how one of my neighbor's husband would hide in the sewer hoping to grab ankles of people who walked by as we took our kids Trick or Treating....

Rest easy Julie, I hope for nothing but peace for you and your family and I will happily donate to the RAL for you in lieu of flowers as your family asked. Thank you for being so uniquely you, it was a pleasure to be your friend. 

Say not in grief that he is no more, but in thankfulness that he was ~ Hebrew proverb

Living life the best I can: Back in my day...

Living life the best I can: 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 ...

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.