Tag: Chronic Illness

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Fighting Hard Battles

Hannah

There is a saying we have probably all heard at one time or another that goes something like this: “Be kind, for everyone you meet is fighting a battle you know nothing about.” Compassion being one of the gifts I have been graced with, this quote always struck a cord with me and helped focus my thoughts on some important perspective through my early years. No situation has brought a more resounding agreement with these words however, than the one that hit closest to home.

His friends saw him become disinterested and standoffish; he started declining play dates in favor of spending time by himself at home instead of being the outdoorsy social butterfly that everyone was accustomed to knowing. They did not know that he was battling a suffocating depression.

His teammates saw him gain a lot of weight and struggle with his endurance and speed, and they teased him. They did not know that the medication that is keeping intrusive suicidal thoughts at bay has caused him to put on the weight.

He got in trouble for picking on one of his peers, and he was labeled as a bully and a “ring leader.” They did not know that he was relentlessly being bullied day in and day out and was keeping it to himself.

His classmates noticed him disappear and started sharing rumors that he had been expelled. They did not know that he was experiencing such toxic levels of stress that something was going to give, and so we stepped in to offer him the solace of homeschool; where he is now thriving.

His teachers saw him not give his full attention and best effort, and assumed he was unfocused and not willing to work hard. They did not know that nearly every minute of the day he was being tormented by the fear that today would be the day his mom’s terminal illness would take her away for good.

He got scoffed at for being too tired to go on a bike ride or run around outside. They didn’t know that for his entire life he has been sleeping on the floor by his mom’s bed to make sure she is ok, and it doesn’t provide the most restful sleep.

They saw his gruff, sarcastic exterior and chose not to pursue friendship; they did not know that those are just the masks he wears to protect one of the most tender, intuitive, and compassionate hearts they’ve ever known.

How many times do we jump to conclusions instead of loving big and giving people the chance to show us the beauty that lies behind the hard battles that we each fight? I am guilty of it too. Let’s not miss another opportunity to know someone incredible because we are too quickly assuming we know their situation. Take a chance; offer acceptance. You might be missing something big.

**This was posted with permission from my little man— one of the strongest warriors I know.

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Jesus Take the Wheel

Hannah

For the past four years, except for my time in hospice, I have been receiving treatment from a palliative care group here in Ohio. Palliative care is similar to hospice in that it is primarily focused on comfort care, but in palliative care many patients still seek curative treatments, whereas hospice centers on end of life. Prior to being in palliative care I had several different specialists managing different aspects of my disease, which meant frequent appointments with little collaboration between specialties, and it drained me to my core. Palliative care was a very welcomed change of pace with the benefit of multiple aspects of my care being managed under one roof.

The first time I met with one of the doctors it was unlike any experience I had before. He asked me what my goals were, how I was feeling, what I wanted to do. I had never felt so seen and understood by a doctor. My health improved in their care, and they also asked me to be one of the patients representing them in their new marketing. They made a commercial with my whole family, and I appeared in their printed and online advertising.

This palliative care group gave me hope for leading as normal a life as possible, and were very responsive to any needs that I had come up. Then slowly over the months I felt less and less listened to. It was harder to get an appointment or to get a call back if something came up. I assumed they must have an influx of patients from all their marketing, and just had less resources to go around.

Near the end of 2022 I was told by one of my palliative care physicians that they were closing at the end of the year and wanted to give me time to find a different care provider. We began the search looking for another group that would focus on comfort and manage as many aspects of my care as possible in one place. The first group we liked came out and did an assessment and shared with me the things they could provide for me. My follow up appointment was scheduled, and I was feeling really confident about the future with this new healthcare team.

Suddenly a few days later I got a call that this group could not take me on because the doctor was not comfortable managing the medications I am on. This seemed a little strange for a palliative/hospice organization, but I took their answer and started looking for a new group.

A Nurse Practitioner from the new palliative care group came out and did a similar assessment. She apologized for what happened with my current provider, and said something about rules changing about medications and how she hopes their medical director will be willing to look past how I look on paper and hear what she has learned from being with me in person. That’s when we learned my current palliative group is not closing like they told me; they’ve decided to change what type of patients they see. They want patients that are, and I quote, “a slam dunk” for palliative or hospice care, such as cancer patients. “As you know,” I was told, “your condition is more rare and you are so young.”

What I gathered was that I don’t meet the criteria for the ideal palliative care patient. You can’t see my disease like cancer, only it’s affects. I don’t know if laws changed about what treatments can be provided for different types of patients, or if my group made changes internally to what they want to provide, but either way I don’t understand why I was not just told this up front instead of being deceived into thinking something else.

The NP left my house telling me she would talk to their doctor about me that day, and would call me at the latest by tomorrow to let me know if they would accept me as a patient. After five tomorrows I called them back, and it was not a total surprise to hear that they also will not take me on as a patient. It was suggested that I seek out a pain clinic.

Not only have my past experiences with pain management clinics been downright agonizing, but that means also needing to find someone to manage my breathing, someone to manage my nausea and weight loss, someone to manage my fluid infusions, and someone to manage my mental health. I literally do not have the strength, will, or stamina to go back to having eight different specialists that do not communicate with each other, and spending my days running back and forth to appointments day after day. I simply do not have it in me.

The way forward that I can see right now is to wean myself off of my medications, discontinue my tube feedings and fluids, and let my chariot come whisk me away. I am broken by the dysfunction of the healthcare system that once seemed to offer so much hope and assurance. I’m crushed to know there will be many others out there unable to advocate for themselves, unable to stand up and survive a system that wants to just exhaust you to death in a swirl of confusion and misinformation. I’m just sad and empty, and I cannot run on empty.

I know that this does not come as a surprise to God. He knew all along. I am confident He will meet me, whatever the road forward looks like. I do not like walking into what I cannot see, but I trust I have a Savior who sees all and will keep me in the palm of his hand.

What drew me to this group…

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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.