Tag: Multiple System Atrophy

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Echoes

Hannah

Attempting to take my mind off of how much work it was to breathe, I started reminiscing about things I used to be able to do when Mark first met me. I imagined when he looked at me-the strong, physically fit young girl he met on the skating rink- he probably did not imagine that in only my 30’s he would watch me become weak to the point of barely walking, and needing help with many daily activities. During our early dates to sporting events, camping trips, and hikes, he probably did not fathom that in less than two decades he would be helping me to walk up a step or two, and many of our “dates” would become spent at doctor’s appointments or yet another night in because I can’t leave my bed.

For a moment my heart fell, and I began to let sadness and regret seep in. In that same instant I had a picturesque vision of all of our lives in a snapshot, and I realized that none of us are quite doing the things we used to be. I remembered we all eventually will lose the ability to hike a mountain or run a 5k. We will all start to skate less laps around the rink, until eventually we have to give it up for things gentler on our aging bodies. This convinced me there is something for all of us to learn in our “quitting.”

When we quit lacing up our skates and trade them in for a walk around the block what will we take from that time we spent reveling in the scrape of our blades across the ice, the giggling when we fell and embarrassed ourselves, and the tight arm-in-arm grasping as we clung to each other to stable our stance? I decided I will take from it the gift of having experienced new things. The smile of knowing my husband learned I am adventurous and a jokester. The peace of knowing that we had some important talks on those camping trips and hikes, and we learned to trust each other and respect each other’s opinions.

Each of these moments may not repeat themselves for us; either because of aging or illness or just the world changing with time. What a joy it is to know that rather than grieving these things we can cherish each of the important things we saw and felt and learned. Those are the things worth clinging to.

Eventually for each one of us all that will be left is the echoes of the things we used to do. I want my echoes to shout of my smile, my compassion, the joy that I am able to find because I have surrendered my life to the God who made it. What will your echo be?

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Slipping

Hannah

Last night I was in bed not sleeping for various reasons and in my idle fidgeting I slapped a photo of my face-meltingly adorable son and puppy sleeping next to me up on social media. They truly are the cutest in all the land.

It did not take long before my phone made a little blip saying I had a message from one of my dear friends on the West Coast, undoubtedly seeing my post while going about normal evening activities because it is three hours earlier there. The time difference has often proven a welcome chasm between us during those long hours of insomnia.

For the better part of an hour my friend and I messaged back and forth, her asking about what’s new in my life and me divulging all the things. After a lull in our conversation she said that she was going to sign off and get some sleep. It came crushing down on me like a stack of cement bricks. I had not even asked her one thing about herself. How she was doing. What she was up to. If she was even ok. I was mortified and devastated. I felt so out of character, so disgustingly selfish, and then while I stammered my apologies I remembered why I had not asked. I had not asked because I forgot.

I did not forget because I was so anxious to blab about my hardly new life updates or because I was distracted multitasking. I forgot because my mind did not remember to remember. It is slipping.

Friends, when I do not call your children by their names that I’ve known for so long, it is because I am afraid I am going to say the wrong name. I was not so busy or distracted that I did not have the time to wish you a happy birthday or ask you how your cold was feeling or if you had gotten the call you were waiting for. You did not hear from me because I forgot. That laughter did sound forced as we reminisced over a funny memory; it really was nervous laughter because I was dashing through places in my mind trying to find that memory and I could not. And it’s terrifying.

Please know that my heart is still first and foremost for my God, my family, and my people. When I come across as rude or insensitive or dismissive, it is not for lack of not cherishing you as I always have— I simply cannot seem to string together all the pieces to remind myself of everything I am proud to be. Please remind me.

Tell me stories again and again for as long as it does not drive you insane, because when you take the time to remind me it allows me to relive that moment of joy with you once again for a short moment. The joy of learning your name. The joy of realizing all we have in common. The joy of knowing how deeply valued and seen and absolutely loved you are to me. Even if I cannot remember to say it, it is still there. Somewhere.

Blow up my phone. Grab me if you see me out and say hi. Remind me who you are and why I’m the luckiest to know you and then please keep being part of my tribe! Remind me of who I am and what I love and be relentless, because the forgotten space is a really lonely place to be.

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After Surgery

Hannah

I know many of you that aren’t on my social media have been waiting on updates, and I’m sorry it’s been awhile. I need to teach my hubs how to post for me!

My first surgery went relatively smoothly. They were able to remove my gallbladder, and after some initial trouble getting me breathing on my own again I came back around and was able to breathe on my own with my normal oxygen and vent support.

Unfortunately during surgery they found my gallbladder had been backed up enough that stones were forced out a duct into my liver. The hospital I was at was not equipped to deal with that, so they packed me up in a mobile MICU ambulance and sent me to the bigger hospital in town, where I was taken back to surgery to clear out the tract and put a stent in my liver. This was a risky procedure, but was also a lot shorter, and they were again able to get me off the ventilator and breathing on my own once again. I’m so grateful for each of you that were praying for that for me; I truly believe God listened and showed me his favor through your faith.

The following days brought some pancreatitis as a result of the procedure. I wouldn’t wish that pain on anyone! I was blessed with frequent visits from good friends, which kept my spirits up, but made me long for home. With the days to Christmas growing shorter I was pressing my doctors to let me free. There always comes a point I get so desperate for home that I’d rather be miserable at home than miserable in a hospital room by myself.

I made it home on Christmas Eve, a wonderful blessing to be with my people in the comfort of home. I have mostly been in bed working on pain control and breathing, and my wing man has diligently been making sure to keep my tube feedings running, as my appetite seems to have left me somewhere along the way.

At times I get discouraged that I can’t jump up and mop my floors or pack up the Christmas decorations, and my mind starts running ahead of me too fast and wondering if my days like that are behind me. My kind Savior draws me back to His words though and promises to sustain me and my family in whatever capacity I find myself.

“But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.”
‭‭2 Corinthians‬ ‭12‬:‭9‬ ‭ESV‬‬

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Urgent Update

Hannah

Several weeks ago it became apparent that my gallbladder is the next thing that has fallen victim to my MSA. With it no longer communicating with my brain about what to do I started experiencing some really painful complications. I was sent to see a surgeon about taking my gallbladder out, unfortunately my pulmonologist was not on board with clearing me for surgery. His concern over the weak state of my lungs is that if I am put to sleep and given a breathing tube, it will be likely that they won’t be able to wean me off of the tube, and I’ll end up with a tracheostomy.

A trach has already been on the table for some now as we watch and wait, so a part of me has already come to terms with that, but I also feel like it’s not time yet, and I know God is bigger than any complication.

A few weeks down the road and I am now admitted to the hospital because the pain and other symptoms from my gallbladder became too much to bear. I have a large team of doctors talking and working together, and the general consensus is to move forward with surgery, likely today now that it is an urgent situation.

I am completely at peace with what the Lord has for my future, but would you pray with me that my lungs will stand strong and I will be able to tolerate surgery and wake without a breathing tube or trach? I believe God wants the best for me, and I know He delights in showing His power when we ask. Regardless of the outcome, I know my God is good and there is no shortage of his goodness and grace in my life. For as many days as He gives me, I will live my moments for Him.

Thank you for walking along side me and helping sustain me and my family through these twists and turns. Your love and support are priceless in our lives. ♥️

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Fast Favorites

Hannah

It has been awhile since I have shared some of my favorite things, so this Fall Friday seemed Fit to do a Favorites post!

This is my favorite lippy ever! Not only does it do an excellent job preventing chapped lips, but it also has a little bit of a pretty shine to it when it is applied, which always feels fancy to me. I have only ever found it at the Big R farm stores in Colorado of all places, so I make sure to buy them out whenever I visit. I just did a search and found they are available to order at https://cvc4health.com/products/superior-source-lip-healer-lip-balm-3-pack.

These little caramel cremes or “bullseyes” pack so much decadence into one bite. I never have the self control to only eat one. Don’t go through life missing out on these!

My new favorite shoes. This may mean I officially dress my age, but I don’t even care because these babies make me happy every time I wear them. Amazon sells this for $50-&60, but I found mine on sale at Kohl’s for $35!

At first I thought these were just an Ohio thing, but I have now traveled and seen these in other states, so run, don’t walk to get yourself a bag of these. Hands down the best pretzel I have ever tasted! Their other flavors, not so much, but I do like their version of Cheetos as well.

I rented this book from the library thinking to read it to my youngest, but it turned out I was the one caught flipping through it for the second and third times. Funny title, but the words and pictures scratched across the pages are so tender and real and encouraging they speak right to the heart. Easily one of my favorites.

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Sink or Swim

Hannah

This week was the end of me. I felt like the last drops in my cup were sucked dry and I had nothing left to give. Frustration over my exhaustion and inability to keep up in the midst of daily hardballs left me convinced the best thing for me was to quit fighting for well, anything. Least of all myself.

As my body does, it decided another shut down was in order, and my digestion came to a screeching halt. This led to constant discomfort, and frequent vomiting even though I wasn’t eating anything. For three days I was in bed burning through barf bags or clutching a big metal bowl while at the same time trying to single parent my little people and see that their needs were met. I was not able to get up and feed them one meal, so they did without or got by on bowls of cereal and Halloween candy. It is heartbreaking to not be able to do the things I want and need to as their mom, and the volume gets turned loud on all the voices telling me I’m failing at motherhood… and everything else.

This is a lonely season of trying to build community without always having the strength to do it. This means long hard days scraping by and simply doing the best I can usually at the minimum amount. I long to be in a place again of having community to surround us and pick us up and meet us in the messes, because doing it alone is awful.

Despite my grumpy attitude and dismal outlook God showed up in the flesh of a friend who saw my frantic social media post asking for help and dropped everything to pick me up and not only see that I got back and forth to a small surgery, but while I was under she shopped for meals for my kids and stocked my freezer with things they could make in my absence. The “Just Show Up” mantra that I’ve tried to make part of my life song was so beautifully expressed in the serving kindness of my friend that day.

It is embarrassing now, but I felt so helpless I texted another friend and told her I had nothing left to give and she deserved better than me. I basically told her she needed to drop me like a sack of rocks because I did not have what it takes to be a good friend. Instead of stepping back she pushed in. She responded, “I’m not letting you break up with me. You can’t get rid of me.” I don’t know what I was expecting, but her response cracked a small grin across the weary furrows in my face, and the brick wall I was trying to build started to crumble.

Thumbing through the pages of my Bible I was brought to 2 Corinthians 10:5, which reminded me I am to take each thought captive in obedience to Christ. I heaved a sigh heavy with burden, gathered all my thoughts of overwhelm, anxiety, and defeat, and imagined placing them at the feet of my Heavenly Father. Peace washed over me; relief that these heavy weights are not mine alone to carry.

I was reminded me that I cannot control everything that comes my way, but that I can decide if my life will be marked by defeat, or by a patient trust in a Heavenly Father who loves me and knows where I am at every moment.

I cannot help but wonder who else is finding themself at the end of their rope this week. I wish we could all gather in solidarity and speak truth to bolster each other in our capacity to carry on. It always seems easier to encourage others than to encourage yourself sometimes. If you are in that spot this week raise your eyes up; remember that the hairs on your head are numbered and the birds outside the window are under the Lord’s watchful care. As we reflect on Him it is easier to be assured of His strength and less intimidated by the size of our problems.

God has promised us abundant life. I don’t want to miss that because I am tangled up in worry and frustration over circumstances that are not mine to control.

Here’s to the ending of a hard week and the beginning of a fresh one, Saturday sports games, Sunday morning donuts, and knowing that we do not have to be strong enough to carry our own burdens. Jesus has us on the hard days just as much as the easy days and beckons us to take up His yoke which is easy and His burden which is light, and he will give us rest for our souls.

“Even though the fig trees have no blossoms, and there are no grapes on the vines; even though the olive crop fails, and the fields lie empty and barren; even though the flocks die in the fields, and the cattle barns are empty, yet I will rejoice in the Lord! I will be joyful in the God of my salvation. The sovereign Lord is my strength! He will make me as sure footed as a deer, able to tread upon the heights.” Habakkuk 3:17-19

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Instead

Hannah

I am so sad.

With summer break upon us I’ve been feeling terrible for all the things I cannot do with my kids. I want to go hiking with them. Instead they get stuck at home all the time watching too many screens. I want to take them to the pool almost every day, and explore the national parks around us. Instead I’m puffing walking up the stairs to tell one of them goodnight. I want to have all their friends over for late night fires and s’mores on the deck. Instead I’m exhausted by dinner time and asleep hours before the rest of my crew. I want to plan an exciting vacation getaway and surprise them. Instead I’m having major surgery that will take all summer to recover from.

I want to scream. And a little teeny part of me wants to quit; wants to give my family the freedom to live unchained. This mess is not living up to my well planned out expectations, and I’d like a redo please.

My friends, I know so many of you live joyful and exuberant lives in spite of much pain. You live the story that you did not sign up for, and yet you receive that cup so graciously, with kindness and contentment that I long for. Please share your wisdom… what is it you do when you want to throw in the towel on your own race and trade for a different one?

Jesus, please help me live for /your/ expectations. Help me to be thankful for what I have instead of mourning what I do not. Help me to make the most out of my time awake, and not have guilt for the times I need rest. Help me to have meaningful time with my children, regardless of what we are doing. And Jesus? Help them understand. Let their hearts become soft instead of resentful. Let their disappointment develop deep character. Help all of us to trust you with our story and to use it to bring you glory.

Amen.

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Losing Focus

Hannah

Gifted an incredible gift to slip away just the two of us, my man and I took every opportunity to soak in the great joy held abundantly in the salty waters. Each afternoon he would tenderly inflate the vest to keep me afloat, and don his long fins to do the kicking for the both of us. As he gently pulled me along I marveled and squeaked with delight at the stunning colors and entrancing shapes of the sea creatures below.

One hot afternoon the winds had been stronger all day, and the choppier waves had churned up a hazy silt from the ocean floor. Just as we had done before, he held tight to my hand and pulled me along the surface of the water, snorkels upright amid the salty spray. This time I felt different. Even though my hand was in his, the murky water clouded everything from view, and when I looked straight ahead the sides of my mask obscured the rest of my view of my helpmate alongside me. As soon as this happened my heartbeat thumped frantically faster and I felt lost and panicked in the disorienting haze of the sandy water. Then I turned my face to the right, and clear as day I could see him right next to me guiding me along, and in an instant the throb in my chest slowed and a peace settled over me, knowing I was not lost or alone. Slowly though I would turn my gaze forward again only to be paralyzed repeatedly as his comforting presence disappeared from my view, and then look up again to see the comfort of his company right next to me.

This week I took calculated breaths as I tried to distract myself from the pain of a necessary procedure. With each new bolt of agony my mind would race through the what ifs, panicking myself into wondering if this would last forever. Then I would look up, and there squished in the corner where he could reach to hold my hand was my heartthrob, eyes locked, waiting to meet mine. Again that wash of peace and okayness would melt over me and quiet the pounding of my thoughts. As long as I held his gaze with mine I could do this.

There was where I realized… what a pertinent reminder; that when my focus is on other things I get lost, scared, and unsure of my direction. But when I lift my eyes back to the face that has never turned away from me, I find peace, safety, and belonging. I draw from that strength and it gives me the courage to keep moving forward, however foggy the future may be. Even though my Heavenly Father is right there holding my hand, it is I that has to raise my panicked stare and remember that with Him as my focus I have the courage to face whatever hard comes my way.

What about you; do you forget to look up when you’re in the panic of the moment? Do you find yourself looking for someone to steady in you? He’s always there waiting, just turn your eyes up.