family

For the Love of Hospice

For the better part of a year or more my weeks have had to revolve around appointments. With 14 separate specialists each handling a different aspect of my health, you can imagine how the calendar filled up.  Most of these doctors have done me well, and helped me cope with the different challenges of  having a degenerative neuromuscular disease, but the past several months have left me exhausted each time I’ve had to leave my home, and resenting the several times a week that I had to spend my daily energy on seeing a doctor.  Helpful, yes, but the truth is there is no cure, and they’re all just doing their best to help me be more comfortable and handle the unpleasant side effects of my condition.

My husband and I had a very honest conversation about all this, and agreed it was time to get hospice involved.  Instead of running all the time from doctor to doctor, I wanted to spend more time at home with my loves spending what energy I do have on them.  I needed all the doctors consolidated into one master plan. It was the /best/ decision. 

The palliative care people? They’re a different breed.  I remembered this from my days working on the ambulance, but it was reaffirmed to me the first time I met my new team.  They aren’t out to find me a cure; their goal is to keep me as comfortable as I can be with what I’ve got, and that is exactly what I needed.  I was met with such kindness.  They weren’t rushed and bothered like so many; they took the time to see and understand me. They acknowledged and affirmed everything I was going through and feeling, and they committed to only do what I needed most.

Our days have slowed down.  I have found myself with more energy because there is less running around.  I’m so deeply grateful to shift our goals and focus on loving each other even more. My doctor is so kind, and readily available when I need something.  When I landed in the hospital with septic pneumonia recently, my palliative care team was there, and they were the ones who stayed extra in my room and laid comforting hands on me while we spoke, asked me how I was feeling, and truly sympathized with the pain I was experiencing and wanted to help.  I am learning a whole new level of compassion from these people, and I can’t help but wonder if I show the same love when someone needs me.  I sure aim to, and I’m thankful to have such incredible examples showing me the way.

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Hard Fight

I am here.

Head down, fighting hard over a perilous week, but still crawling to stand to chant the victory cheer.

It’s going to take some time for me to recover, but I will get there. In my quiet spaces, know I am deeply grateful for every kind word, thoughtful gift, and whispered prayer. You are my people.

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

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Giving it Up

This week I had a pretty hard doctor appointment that revolved around the words “severe muscle impairment,” “tracheotomy,” and “ventilator.” The same day I received an email reminding me it is nearing time for me to recertify my national Paramedic license. It was a sobering day.

For these past couple years, I have let my husband’s encouraging words and glass-half-full spirit spur me on in believing that I will walk in my Medic boots again. He was always reassuring me that we would get through this; I would get strong again and go back to the career that I love. During that time I have struggled with who I am when I’m not a paramedic or a firefighter. It became such a big part of what motivated and moved me that when it was gone I struggled with depression and wondering who I was. I still do at times.

Being a paramedic and firefighter is unlike any job on earth. To get to walk into people’s lives at the time they need you most, it’s indescribable. It was a privilege and an honor to get to show up in homes, cars, churches; all the places people have built their beautiful messy lives, and serve them at their most vulnerable moments.

I know that I am loved and cherished as I am. I know I am still me, and the people that matter the most will accept me as I am, but it has been a painful walk to slip further and further from my polished boots, the distinctive smell of bunker gear, and the smooth weight of my stethoscope around my neck. Like most folks in my line of work, I am a strong type A that likes to have everything under control. It is extremely humbling, and sometimes discouraging to see that I have lost much of that control, and have to surrender to something that controls me, rather than myself controlling it. What an important lesson in life though; one I undoubtedly needed to learn. We are not our own, and the power is not ours.

Most nights I don’t dream, but when I do it is of being back on the streets alongside my cherished partners, rushing toward the danger and the opportunity to help save a life. I know they are just dreams, but until I can’t anymore, I will keep clinging to them with a smile.

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Goodness

It has been two years since I’ve taken a shower. Until today. Well, a normal one anyway. Because of having a central line in my chest that can’t get wet, it’s been a lot of top half/bottom half showering, or sponge baths and then washing my hair. Well last week my central line was pulled, and replaced with a port that sits under my skin. It’s accessed once a week, which means Monday morning I get to pull it until it is replaced by my nurse later in the day.

Today I sat in the shower and marveled at how incredible it feels to have hot streams of water pouring over my head and down my shoulders. I washed my face and then got to rinse it off in the steaming spray. It!Was! Glorious! I may or may not have had to push my emergency button for help getting out because I overdid it a little. My bullet journal got an early update today, because I don’t even care what happens the rest of the day, this is a wonderful, excellent, outstanding, very good day.

If you can’t reach me, you know where I’ll be! Enjoy this picture of me deaccessed, sparkly clean, and oh so happy!

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Murphy

Today I am headed in for a double surgery. It’s been one of those “if it can go wrong,” weeks. Not to worry though; we’ve got this.

For a few weeks and a few wasted doctors’ visits, we have been trying to get to the bottom of a fever and severe pain from my J tube. It was finally just discovered that I have what’s called a Buried Bumper. So I will be going in to have it removed from where it’s imbedded, and hopefully they will be able to place a new one right away.

Not to be outdone, yesterday the central line in my chest started infusing everything in a big balloon of swelling on my collar bone, instead of into my heart. This access is very important for me on a daily basis, so they’re going to be removing the old line and giving me a new port at the same time as the first surgery.

Here’s to things always being an adventure, to a good long nap, and to knowing that I am well loved and cared for, even when my middle name seems to be Murphy.

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Surgery Blessings

I had a pretty big and difficult surgery last week, and have been plodding through a rather arduous recovery in the days following. I’ve not hardly been in the public eye since then, other than trips between hospital and home, and a few brief marathon efforts to participate in family activities. I’ve made attempts to clean up into pretty sundresses and lip gloss in lieu of the pajamas and heaps of pillows that have filled my recent days, but clearly I’m still sticking out like a wounded chicken. Or something.

Everywhere we have been, people have offered whatever they could to make things easier for me. They have cleared elevators for me; I believe I was crunched over in my wheelchair, hugging a pillow for dear life with tears streaming down my face when I heard a lady say, “you two go ahead, we’ve all been there.” People have called their children to move out of the way, given up seats, gifted anonymous flowers, held doors, and waited painstaking moments for me to take whatever time I needed.

This morning we waited at the end of the block near our house for our oldest daughter to march by in the holiday parade. Everyone was melting. The heat combined with the sickening humidity was almost enough to suck all the fun out of it. There I was in a crowd of sweltering people, and this tiny elderly woman came shuffling up to me and thrust a frosty red cup of ice water into my hand that she had walked back home to get just for me. I was almost speechless. It was such a selfless act, and I truly felt undeserving, especially considering all the miserably hot people around me. I thanked her profusely, and we all took turns sipping the cold goodness in the beating sun.

So many random people saw my hurting and my weakness this week, and they were quick and generous to act. It got me thinking though… what about the people whose hurting isn’t so visible? What about the ones who are more broken on the inside than out, and could also use a gentle smile or a beautiful flower, or just to know that they are seen and cared for? I guarantee they are all around us, and they may be trying to hide it just like me, but we shouldn’t have to look far to see another soul thirsty for a refreshing dose of encouragement, or an extra helping hand. I want to remember to look for ways to be kind, whether I can see that a person needs it or not. Chances are, they do.

More about my surgery misadventures later; for now let’s finish off this good long weekend with a renewed passion to be the hope this hurting world so desperately needs. I’d love to hear ways you are finding to spread kindness around you!

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

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The Good, the Bad, and the Beautiful

This was such a rotten week you guys. I would recount it for you, but seriously I spent so much of it face down I’m not even sure which days were which.

Mostly what I want to share with you about this week though is today. Today was a day of scrolling through the camera reel and remembering, or maybe just really seeing for the first time the big and beautiful and maybe even amazing things that had everything to do with survival, whether I knew it at the time or not.

There was ugly. There were struggles and new limits and fears and just brokenness, but won’t you look with me? See the undeserved beautiful that cast a beautiful afterglow through the storms.

There were tender snuggles.

There were endless warm blankets and hard day socks. Never forget a pair of hard day socks.

There was HILARITY (slash panic) when my children somehow just haphazardly grabbed a mole and brought it into my bedroom to show me. A MOLE people!!

There was awe at the perfectly inspiring timing at which my sweet mama shared her sky with me from several states away.

There was giggling and excitement as the kids set up our tent in the backyard for an end of summer camp out, which I could see in plain view from the giant bay window at the foot of my bed.

There were breathtaking flowers along the walkway to the hospital.

I wasn’t stalling, there were like, a LOT of them!

There was cheering as my soon-to-be-school-goer beat me at his new letter sounds game.

There was the sweetest little pregnant mama houseguest who seems to think I’m the bestest snuggler of all….

And after… I lost count how many… days of not leaving home for anything other than the doctor, after a few dry runs and a lot of help from my wingman this morning, I busted on out with my two big boys for this…

And this…

AND antiques…

I don’t quite remember how I got back into the house, but I did in a sore, exhausted, pale-ish, and wonderfully happy and satisfied heap, where I intend to stay well into the snuggles of the evening. Who knows, maybe we will find another adventure or two to cram in before sundown. 😉

Look back through your own week; did you miss any hidden gifts that might have been the very things that carried you to the weekend?

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