Wordless Wednesday
Tag: Chronic Illness
Life in the Balance
You often get to see the good and miraculous in my life, and I love sharing those parts with you, but right now I am fighting from a pit so dark it seems to swallow my ability to find the streams of light I have grown accustomed to piercing the darkness. My heart and mind are tired. My body is exhausted. I have dared to hope that I am still here because God is going to bring about a miraculous healing in my life, but as time edges on and I feel the weight of not being even a shadow of who my people need me to be, I find myself dreadfully weary of this life hanging in the middle between the miracle of being restored to health and the seeming relief of death.
Red tape curls angrily around the care that I need; new rules preventing what I was able to get before, but the alternative of leaving the security of what care I do have is intimidating and perhaps foolish. I am tired of having to fight for myself; to advocate for things bigger than myself when I hardly have the strength to take a shower.
Come and save me Lord God, because you bless and protect your people, and I am yours. Give me a glimpse of the glory behind this wall of darkness to refresh my hope in you. You are my God and my protector, please answer my prayer and refresh my hope in you. Let my life be a living testament to your sustaining grace; whether by giving me the endurance to withstand whatever suffering will align my life with your heart, or by extending the grace of calling me Home.
I do not know how to gracefully live out what you have called me to, but I know you have been good all my life, and I trust that if hanging in the balance is what you have for me, you will help me find the strength to endure the calling you have set before me. So help me Jesus, I need your love to restore my peace.
Wordless Wednesday
Twilight
Today a nurse and doctor from hospice came out to my house and assessed my condition and the things that have declined for me over the past few months and weeks. We talked in depth about my goals and my family’s needs, and the reality of the days ahead of me. They interjected hard conversations with compassion and kindness and humor, and in the end as they admitted me under home hospice care, I felt as though I had been given a great gift rather than something to grieve.
How perfectly that word describes the jumble of days that has been this week… “the period between daylight and darkness.”
Thank you for hanging in there with me this week. I realize now that I dropped off the planet in the middle of conversations, appointments, and even in the middle of uploading a photo to Facebook! I know many of my friends and family members were wondering what on earth was going on and why I wasn’t answering.
This weekend my respiratory drive decided to take a vacation, and my family found me unresponsive. For my medical peeps, I had a GCS of 3 when paramedics arrived. I spent the first part of the week intubated in the ICU.
In the haze between sedation and full consciousness I was so blessed to know that some of my dearest people were there with me praying over me, reading scripture over me, and just holding space for me on some very scary and unsteady ground. Unable to talk, all it took was me scratchily scrawling out a name or two on a piece of paper, and my people came running to be by my side. I am so incredibly thankful.
My medical team worked hard with me, but it was obvious my body was tired. Each time they turned off the ventilator to try to get me off of it, my chest remained silent, and they had to turn it back on. What changed this was overhearing my husband ask what the next step would be, and seeing my doctor motion to his neck that I would get a tracheostomy. I scraped up what fight I had left in me and scribbled out “try breathing again.”
For the next hour I breathed, but it was like trying to come up for air when the pool cover has already been put back on. I fought and fought, but eventually I heard the doctor order the medications be drawn up for rapid sequence intubation; they were getting ready to intubate me again. Somehow in that moment of defeat I sucked in a thin stream of air, and then another. Little by little I was able to take each next breath on my own until I was finally resting back against my pillow, only a bipap mask supporting me.
I made it very clear to my doctors that my daughter was graduating high school on Thursday, and I would be leaving the hospital by then with or without their blessing! Thankfully my team was very supportive and worked hard to get me out of there in time. That seemed an impossible feat at the beginning of the week, so my heart was overjoyed to be able to celebrate with my girl.
I was there to listen to her beautiful singing voice peal across the arena in perfect harmony, and my heart sang. I was there to hear her name announced as she walked forward for her diploma, and my pride thumped swollen in my chest. I was there to giggle at the cute, triumphant face she made as she walked by the cameras with her prize in hand, and my spirit soared. The joy of the Lord is my strength, and he truly has shepherded me through some of the deepest valleys and the highest mountaintops this week.
I also delighted in the fact that my little sister and a few of her littles drove out for the graduation and I was able to spend time loving on them.
This will be the way forward for now, and we are grateful for the help to better manage things that have gotten frightening and difficult, like my weakness and breathing. I am grateful for this roll in seasons that brings these beautiful blue skies and warm breezes; ready to soak them all up with my people! And I am thankful for each of you who have faithfully walked us along this journey in so many ways. ♥️
Hard Questions
I was using an unexpected burst of energy to shuffle things around in my garage, attempting to organize the means of the DIY adventures that call to me on my stronger days. I must have been deep in thought, because the abrupt swinging open of the thick wooden door to the house startled me. A tear-stained face appeared, begging companionship. “Can I please talk to you?” “Of course,” I replied, and took a seat on the striped padding of our wooden bench. I patted the seat beside me, and there was an eruption of sobs.
“I just really, really don’t want you to be sick. I don’t like it, and I would rather die so that you can live a happy life.”
I was caught off guard by the heaviness of the situation, and as the lament continued I silently prayed for the right words to comfort this tortured soul. How do you answer the questions for which there are no answers? I was reminded of my notebook full of gratitude; all the beautiful and miraculous that is found woven through the mundane ache of every day.
When the slew of bemoaning faded into hiccuping sobs, I spoke. “Oh sweetheart, I /am/ living a happy life. I love getting to be here and be a wife and a mom and a friend, and my sickness will never take that away for me.”
“But why doesn’t God heal you. He can! Why doesn’t he want that?”
Admittedly it is a question I have also asked from time to time, but I gave the answer that has been whispered to me on repeat as I have studied similar stories of suffering in the scriptures. What if my suffering is the way into a greater love for God and his people? I have found that the process of walking with him through these deep valleys is teaching me how to better love and care for others. Maybe if I was not sick I would not know how to do that.
Not that I have readily accepted the hardships in my life. Not by a long shot. I have had my own sob sessions, wrestling long and hard with God, desperately searching scripture and asking really hard questions. I have waded through grief deeper than I thought I could survive.
The truths I have come to know, and that I shared on that dusty bench in my garage is that whatever trial I am asked to walk through, God will give me the strength to take each step through it. And if a terminal illness is what presses me nearer to his heart and grows my own to love others in a way that I could not have imagined on my own, then that is what is good for me, as well as for those my life intersects with.
Who knows, God may still heal me, but only if healing pushes me further into him. Only if healing accomplishes eternally what terminal illness cannot. These days my prayers are less for the removal of my illness and more for a greater number of days to love God and love people. I continue to press forward and fight toward that end; especially for my husband and my little people.
In the cold quiet of our garage that night, I explained that my present suffering is only going to increase, not ending until my death. Every day I am pressed harder into the story of the gospel, which allows me to fully trust the God who has numbered my days (Job 14:5), and to embrace the future of hope he has planned for me (Jeremiah 29:11). As I thank him for each new day, I search with intention for ways to leave a legacy for my children that will urge them to press into their Father God in their pain; to trust him with their hurt, and believe in him for their future.
He will meet us there.
Sola Gratia~ by grace alone.
Holding Space…
I have not had much strength to write as of late. I do often in my mind; if only my brain came with dictation so I could get it written down. 😊
I am here still warrioring on with each of you who bravely get up each morning and embrace the good and the hard of your own stories.
One small treasure that I have been reminded of in this string of hard-fought days is that thankfulness if the key to peace. When my mind wants to run with with worry, I am practicing replacing those anxieties with thanking my Savior for the miraculous as well as the mundane, and He has been faithful to pour into me a peace too thick, too rich with the serenity of it all that it can only come from Him.
Is the roar of worry drowning out your thoughts? Try it. When anxiety creeps in, start listing the graces of your every day, and you too will find peace.
Fighting Hard Battles
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.
Jesus Take the Wheel
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.
Urgent Update
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. ♥️
Fast Favorites
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.
Choosing Hope 