Tag: Multiple System Atrophy

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Hard Doctor Day

Hannah

Yesterday began at the office of my tender hearted hospice doctors. Despite my anxiety, I am always soothed by the kind hands and gentle eyes that meet me. Hearts that truly want to help; to listen and find the thing that will make my days the most bearable. I always end these visits knowing that I matter, that my needs are important, and that I have a team in my corner.

My heart thumped more uncomfortable as I had to brave the pulmonary office later. There is not the same gentle atmosphere, but one of facts, hustle and bustle. I knew by my panting for air and the bluish of my fingernails that I was fighting harder. There was no tenderness in the hard words; my days could be changing, my lungs needing more support. My positivity deflated as I considered my days tethered to these machines that help me suck in and out the air of living.

Immensely sad is what I know I felt, but it came out as anger. I didn’t even know where to direct it, and my sweet little loves ended up getting the brunt of my frustration as I reeled with how to reconcile my thoughts and fears. I finally removed myself, tucking early into bed so as to not keep expressing my frustration to the people I love so dearly. Some days you just have to put it all to bed; pick it up again when your courage is renewed.

The facts are the same today, and my heart is still sad, but I am renewed in my hope for these coming days. There is nothing I won’t do to fight for more beautiful days with my people. Expectations laid aside, for I know that the true meaning of my days is not found in my misguided expectations, but it’s found in the great gift of deeply loving and being deeply loved by my people. That’s where you’ll find me; wrestling another hard bit of my story, but drinking deep in the grace found all around me.

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The Best Roller Coaster Ever!

Hannah

I was gifted with big strength this weekend. It’s an exciting weekend in our town; Labor Day is celebrated with fireworks, big festivals full of vendors, music, and eating, and a long parade. As I brave my days not knowing if I’ll be able to make it out of bed, I was especially pleased to be able to fully participate with my family this weekend.

Friday evening we spent with our season passes at our amusement park. Usually I sit patiently in my wheelchair and enjoy the thrill-swept faces of my loves enjoying the rides, but I had a crazy hair to try something bigger this time. My loving husband helped choose the smoothest of the roller coasters, and I used my special pass to roll my chair right up to the cars and strap in. What a rush! My kids were terrified; not for the ride, but that I was going to get hurt. Precious loves. I screamed the whole time, but from absolute joy, not pain! Next time I’m going with no hands! I feel like my life is full of many roller coasters, but that’s the kind I’d like to ride again and again! It made my day to see my littles laughing and cheering for me. I enjoyed the rest of the evening watching them ride while I sipped Dr. Pepper and rolled around with the lights dancing on my wheels.

Mark and I spent Saturday afternoon together to enjoy a show and dinner together. I love getting to have time with my man one on one, hearing him laugh and catching his gaze over a table for two. I surely am the luckiest.

The rest of the weekend we enjoyed the vendors of crafty creations, delicious food trucks, and fresh squeezed lemonade. I found the perfect gift for my sweet nephew, and we let the sun warm our faces until we were all glowing and exhausted. Monday morning we pulled our chairs right up the street from our house and enjoyed an hour and a half of one of the most spirited parades you’ve witnessed. The town really comes out to celebrate this day, and we enjoyed waving, clapping, and admiring all the fire trucks and marching bands.

After the parade we even squeezed in a trip to an outlet mall we’ve been wanting to check out, and enjoyed browsing the stores in and out of the sunshine. Our girls are reaching the age they like to walk to the stores on their own with their friends, so we stayed nearby with the littlest one and tried out all the games in the game store. There’s fun to be had wherever I go with these two!

At the end of the day I was thrilled to have enough strength to love my family by cooking them a special dinner. It’s such a big gift in a small thing; being able to sit at the counter and chop vegetables and mix in mixing bowls. We sat down to enjoy steaming bowls of home cooked goodness after a deliciously busy weekend spent together, and I couldn’t be more grateful.

How are you embracing your strong moments today? How are you spending your strength to love your people?

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Four Faves

Hannah

I’m away from home in a strange bed tonight, and I thought I would do something a little different on my blog to pass the time. As I grabbed a few “necessities” and threw them in my bag on the way out, I thought about how some of the best things are discovered from other people’s suggestions, so I’m going to share with you a few of my favorite things!

5 gum in Strawberry Flood. It’s no secret that the peppermint 5 gum is my absolute favorite, but not too long ago I tried the strawberry on a whim when I came across it. Just like the mint, it keeps its flavor long after most gums fade. The strawberry is a perfect blend of tart and not-too-sweet. It’s juicy and fruity and just the best pick me up on a hot day of running around.

Double stuff is my jam, but an Oreo completely encased in fudge? That is perfection! These tiny bites have the perfect ratio of cookie to chocolate, and they come in pre-measured portions so you don’t go overboard! They also come in flavors like mint and coconut if you’re looking to switch things up.

BiC Gelocity pens. Not only do these come in a bunch of vibrant, fun, as well as practical colors, but they glide so smoothly you’ll never want to stop writing! I use these for jotting down notes and writing letters, as well as doodling or drawing in my journal and sketch pads. The creamy inks are a pleasure to work with! I keep a variety of pens tossed in my bag for when opportunities arise.

Ecolips lip balm from Whole Foods. This organic lippy is divine, and I find myself reaching for it time and again. It moisturizes exceptionally well, and never feels thick or sticky. Yumberry is my favorite flavor, but they have many delicious flavors to choose from, like vanilla honey, blood orange, and pomegranate.

Black paper sketch pad. I got some great new markers and pens for my birthday, and I picked up this sketchbook at Michaels to practice with them. Not only are the pages super smooth and thick enough to prevent bleeding through, but I absolutely love how it makes the colors pop!

There you have it, a few of my favorite things. I hope you find something new you enjoy!

Please leave me a comment, it lets me know you’re listening!

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The Grumps

Hannah

After a sleepless night, I’m curled under my favorite blanket watching a cloudy gray sky. I’m dealing with some nagging pain following a procedure yesterday, and it’s got me feeling down. Well, maybe just sorry for myself. There were other things I wanted to do with my day today. Thinking how to be grateful anyway… there are so many with larger struggles than I. I can lie here and save my energy for my little people who will come bounding in from the bus and find me with love to share. That’s where the gift is found; in strength that’s beyond my own, and that’s meant to be given away. Tell me, where are you loving beyond your strength today?

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Enough

Hannah

I’m lying in bed as the last light of day seeps in the bottom of my bay windows.  The plasticky smell of oxygen whispers against my pillow with every breath, and I count how many times the back door chirps open as the kids run in and out to grab things for the box fort they are making.  They are soaking in the warmth the summer evenings still offer, even though school is back in session.  We have just wrapped up a whirlwind adventure of a summer vacation, and as I lie in the comfortable quiet I find myself wondering if it was enough.

We planned big.  There was hardly a week that we were not out traveling or exploring or trying out some new adventure.  We knew it was good and our family needed it. At the beginning of the summer we talked about shifting our focus to the memories and the legacies we were creating of our time together.  We definitely made big and wonderful memories, but I’m left troubling over the mundane. It is easy to make memories when it’s fun and exciting, but are we making good memories in the grind of every day?  I try to think back on my own childhood and remember the small moments.  I want my children to reminisce on our dinners around the table, braiding hair in the mornings before school, and snuggling in for a book before bedtime.  I want them to remember these things because these are the things that feel so inherently me. It will be easy to remember the thrill of a concert or the awe of a canoe ride, but I hope the kindness and love and adoration I have for them seeps deep into their souls so that when they think back on the days of packing school lunches and rubbing backs in my bed they will be overcome with the remembering of the safety and love that was there. We may still have a wild adventure or two, but for me, I’m going to be focusing on these little moments and making sure they count far into eternity.

Please leave me a comment, it lets me know you’re listening!

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Summer Lovin’

Hannah

Every summer for the past few years we have started off the break making a “summer bucket list” of things we want to do during summer vacation. Some things are big, some are small, but the main idea is to be intentional about using our time. I am a homebody through and through, so I would be perfectly happy snuggled in my nesting place with my tribe. I have wanderers and adventurers though, so we try to plan some exciting things to venture out and try while we are free from school routines.

This summer we crammed in more than we usually do, trying to check off some unique things that I either haven’t done or likely won’t able to in the future. It has been a blast. I have dug deep for energy and stamina to hang with my people, and while the nights find me collapsed in an exhausted heap, it has been exhilarating to taste so many joys this summer. We stretch me out, hydrate, medicate, and wake up again to take on the next adventure.

From staying in pajamas all day and doing sidewalk chalk, to concert hopping and driving to new destinations, we are creating a beautiful bucket full of the exciting and the mundane of sweet summertime. What is on your bucket list this summer?

If you are friends with me on Facebook, you may have already seen some of these, but enjoy the pictures of some of our adventures!

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Gone

Hannah

My heart hurts tonight. This afternoon I went through my paramedic jump bag to get it ready to pass on to my partner. That hurt. 13 years worth of remnants of a life that thrilled and fulfilled me. Perhaps I’m a little bit angry this time to have to leave it all behind. I’m so deeply thankful for this time I have now, but I do miss working as a medic terribly, and I haven’t quite learned to reconcile that yet.

My signature green scissors… my brightest helmet light… the fun bandaids I always made sure I had so no one would have to get a boring one. Unused gloves and sheets of paper waiting… for the next call that won’t be coming.

Look at this I found. It’s so ridiculous, but you must know.

I was running on a very intoxicated transient man one night, and as we neared the hospital I reached across him to grab the phone we used to call report ahead. It had one of those old school curly cords. Well as I stretched the cord to reach my ear the receiver snapped out of my hand and smacked my poor patient right in the middle of his forehead. It hit him hard enough to split the skin, and blood trickled down toward his eyebrows. I was mortified. I stammered apologies as I tried to get him cleaned up. He assured me there was nothing to worry about; that I was doing a great job and he was just fine. I was impressed he was taking it so well, and rummaging for a bandaid. It just happened that pink Hello Kitty bandaids were all I had left. Oh my goodness this was getting worse! At this point he was still encouraging me and swearing he had no cares in the world. I marched into the emergency department that night in a hot blush, wheeling my drunk, homeless victim with a pink girlie bandaid right in the middle of his forehead. By this time he was telling everyone what good care I had taken of him, and asking me to be his wife. I was so embarrassed to tell the hospital staff what happened, but he was just the most gracious man, beaming up at me with that goofy bandaid. I definitely needed his grace that night. I have always wondered though what he thought the next morning when he woke up with that pink Hello Kitty bandaid on his head.

I miss getting to connect with people like that. I miss the rawness and the realness and everyone just trying to do their best for one another. I’m honored to pass my bag on, even though it’s hard. I know it will be in good hands, and it will see to caring for many more people who need compassion and a helping hand. I’m glad to see it have life once again, though maybe for a nostalgic moment it made me miss who I was.

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Incurable Hope

Hannah

It has been a long six years trying to find a diagnosis. Based on my symptoms and the way they have progressively worsened, we’ve known it was some kind of degenerative neuromuscular disease, but we haven’t quite known the prognosis. Early on it was thought to be MS, and I was able to work through it, making some modifications to how I did things, but vastly able to continue life as normal. Things continued to decline though, and I found myself losing the strength and endurance I needed to continue working as a paramedic. This is when I cut back to part time paramedic, and also took an office job in organ donation. As fulfilling as that was, I eventually found myself no longer able to make the drive, or even remain upright for the hours that it required. Eventually I had to face that I could no longer safely work in any job, and I needed to save what little energy I had for my family and friends.

It’s been a frightening journey at times, especially with the unknowns, but we are beginning to have some clarity. A recent brain MRI showed significant damage to my brain stem, and basal ganglia, which are responsible for many of the automatic functions of the body. This information shed light on why I was having symptoms related to that area of the brain, like trouble regulating my breathing. All of these pieces started to fit together and pointed to Multiple System Atrophy. In some ways this was a relief, as the contenders like ALS have a very short length of survivability. MSA comes with its own fatal prognosis though, typically within 5-15 years. Being at year six, I already feel blessed for the time I’ve had and continue to enjoy. I’ve tried to stay in the moment and be continually grateful, although I’ll admit that sometimes my attitude stinks and I fall into a grumpy state of forgetting the gifts I’ve been given.

I know that God knows my heart and hears my prayers, and those of so many who love me. I know that He can take this suffering from me if He chooses to. But even if He doesn’t, I will still choose hope and thank Him for every moment He allows me to have earthside.

I hope you’ll help me, dear readers, to continue to find Hope and Grace in the day to day. I know that it’s there, and sometimes I just need help to lift my eyes up for it. Please don’t treat me differently; let’s laugh and dance and do big and small things without fear of the future. I’m ready for today, how about you?

Please leave me a comment, it lets me know you’re listening!