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Tag: Multiple System Atrophy
The Grumps
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
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.
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Wordless Wednesday
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Summer Lovin’
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
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 the 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 and not to worry. 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 marry him. 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
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 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, which is 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 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 here.
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?
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Home, the Place Where I Belong…
My tribe and I are elated to be spending some time in our old stomping grounds, Colorado Springs. Mark had to travel out here for work, so we made him drag us along! There is so much good to be found in the bright sunny skies and horizon full of majestic, towering peaks. This is our place.
We have seen so many friends this visit. So many. There are still more we couldn’t even squeeze into our days, but we have dearly enjoyed each heart we’ve been able to reconnect with during our time out here. Old friends are the bestest friends.
My little people have enjoyed days full of swimming, playing with friends, visiting their favorite spots, and then snuggling in for crafts, movies, and massage trains. It has been a wonderful break for our hearts and minds, and we have found joy in our minutes.
Our visit is too short to fit in all the goodness we left behind here, but our love tanks are full as we wrap up a wonderful week packed with sweet memories. Thankful for the Giver of such gifts.
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