Keep It Boring!

Please excuse my absence last week. Life caught up with me and just had one of those weeks.

If you know me, you know how true this quote above is! 😂

I began writing this post this past Sunday, just to put some of the wording in perspective 😉. And I will be wrapping it up with today’s thoughts.

I just finished an hour of making med bags for 14 days. I’ve gone through every possible way of trying to attempt to make taking medicine easier on a daily basis, so I ask that you hold back you opinion on how many baggies this takes in a year or how much this may hurt the environment, for the sake of my mental health. And I thank you. Opening bottles every day is a physical and mental pain. Attempting to keep those little boxes sanitary, as a person who is particular about germs and how many times my fingers go into those little compartments, this is nearly impossible. Not to mention when these medicine boxes decide to pop open by themselves- that’s a pill disaster! So baggies it is. Until I may can qualify for one of those fancy dispensing machines, but that’s really dreaming!

The reason I share this is, the past two weeks I have had two people ask me unnerving questions, ones that I didn’t expect to come from these two especially. One was, “What has been you biggest success this year?” and the second was, “What are you doing during the day these days?” Maybe these would be instant answers for you. But I was, first, shocked, then my mind went completely blank. Well, except for the sarcastic part, which was screaming, “Are you kidding me?!? You are one of the people that literally walked me through the adoption process with Lucy and her arrival and departure. Can you not just give me some credit for making it to all my appointments this year? Being consistent in taking all my meds? Following through with doctors’ referrals? I am here aren’t I?” Both days I was in the recovering stages of a really bad migraine. So  if you know anything about migraines, the hangover sometimes leaves you with brain fog, loss for the words you want to say, so I was really struggling. My answers don’t really matter, because I’m not even sure they made sense. But what I left with was a feeling of questioning – not necessarily myself, but what is the perception of “the life of Anna Motsinger” to those looking in?

Let me make this clear first and foremost, anyone’s perception of me has no control over me and has never taken up much of my brain space, because God defines who I am and where I’ve been and where I am going, what I’ve been through and will go through. He has known this before the creation of the world and I am 1000% secure in that. I began hitting my knees early in life because of this very fact. 

So this is not an attempt to prove anything, rather it is to possibly bring insight to another person’s story and struggles. A reality that may be as foreign to you, as your reality is to me. 

There are a lot of places I could start… but let’s start with the one that gets the worst disapproval and mocking by the culture, that being “still lives with her parents.” First, I have always hated, yes hated, when someone just assumes someone is taking the easy way out and living with their parents. I have always been of the mindset, you have no clue what their reality is behind closed doors. Whether health, finances, safety, etc, don’t be rude and jump to the conclusion that they are just lazy. Matter of fact, only a few generations back and in many cultures still, multi-generational homes were/are very much encouraged. As for my parents and I, we live TOGETHER. Yes, my parents own the house. But the reality is we all three need each other. If we were still at my childhood home, and Lucy was still physically with us, it would be just the same. We share responsibilities, are aware of what’s going on in each others health, and are available to help each other when needed. Honestly, if I lived separately from them, I would be constantly concerned about their health and safety, as they would mine. We share one car, which is all we need. It would be crazy for me to live elsewhere! Physically, mentally, emotionally, but especially mentally, it would be crazy stupid! (and I don’t like the word stupid- but here it is worthy of using).

As far as words like “success,” “accomplishment,” any of those achievement poster words, to be frank, they make me throw up in my mouth. My daily goal is to get out of bed, brush my teeth, bath and/or shower, and attempt eat to live literally, If I “succeed” at these things, then it’s a good thing. Yesterday, I did all but “succeed” on eating – I seem to be in the middle of a reflux/migraine hates every food I put in my body, so it gets rid of it as fast as I put it in, kind of season. We shall see what today holds. Some seasons consist of rice, bread, grilled chicken, and lettuce. Others a literal BLAND season. My life has been a series of seasons of “eat what you can eat and keep on your stomach.” So days, months are harder than others.

Then comes the question, what do I do during the day? How in the world do I describe my days? There are no two days alike. I never know which diagnosis will take priority over the others each day. One day it could be migraine, due to air pressure, temperature, something I ate, lack of sleep. Or it could be asthma and reflux because of air pressure, humidity, heat, something I ate. Or it could be low iron or vitamin B12, which I can’t really know this for sure unless I go to the lab, but I can guess. Or dehydrated from any of these things and so my kidneys are out of whack. Most of my brain energy is consumed by these things, because if I don’t find the cause it leads to whatever the ailment getting worse not better. I like to say my body is as confused as I am, it is continually needing something that will trigger something else to erupt. Greens, sodium, protein, you name it – one appointment it’s encouraged, the next its discouraged, it’s all a balancing act that my digestive system tends to have a strong opinion about.

Then there is making sure I have medical insurance, for every appointment, for every prescription. I believe I unconsciously hold my breath every time I submit a prescription or do the check-in for an appointment. If you have ever thought your appointment or medicine was covered, and go walking up to the counter, only to have them say your copay will be more than $15.00 you were expecting, but more like in the hundredS, you know exactly what I am talking about. Especially, if it’s the minimum to see the doctor, a doctor that is in such high demand that to get an appointment a year out is hard, and you must see this doctor to receive you prescriptions.

This year my insurance was going to abruptly stop in mid-October, but I just got the amazing news that Duke and my insurance company reach an agreement. Do you know how frightening it is to prepare for mid-October through December, as a person with chronic illness, with people within my home with compromised immune systems, and not know what to do if I contract a virus or infection during those months? I was trembling.

Every year when re-enrolling for insurance, I search for every doctor, every medicine, every possible urgent care, and emergency room to make sure I have coverage. This tightrope is more than I can describe, and the worst I have ever experienced this year. I am not ashamed to say the only way I can have insurance is through the Market place. I’ve tried private insurance, and the quote was astronomical! And that was in my twenties, not telling what it would be now! And now, it’s not only mine, but my parents. The unstable, not knowing is frightening, the actions of untrustworthy leaders who hold it in their hands, and are not willing to reason to work something out, is going to lead to some life and death situations. The flippant comments are disrespectful, uncalled for, and obviously are coming from the mouths of people who have never known the uncertainty of medical situations. When I begin to tremble, I remember HE IS My Sustainer, whom shall I fear? NO ONE. 

I did receive some good news about a month ago, I don’t have sleep apnea. I still don’t sleep extremely well, probably because I have to pee so many times during the night, but hey, no more tests, no new diagnosis is ALWAYS good news. 

What else? I write a lot. Letters, blog, just write. Draw, color, cut scraps into confetti- this helps with my frustration, with insurance especially! I have a closet full of things to put on my website, however the part of taking/staging the pictures, writing descriptions, and all this entails, I haven’t quite had the time to carve out, because I can’t think of what all I do during the day(sarcasm keeps me going some days), on demand. 

Doctor and Lab Appointments for me alone, average 10-15 a year. I have to have blood labs every 12 weeks due to ferritin tending to drop.. And recently my vitamin B12 was found to be dangerously low, so checking that regularly too. For my parents, combined they have this many or more. Navigating schedules, avoiding burnout from too many in a week or month, it takes some brain energy. 

Doing everything possible to prevent an urgent care, emergency room, or hospital stay. This includes things as small as being aware of allergens outside my window, to anything that could weaken my immune system- like weather- hot or cold. To things as important as vaccines and masks, which have become absolutely vital to staying as well as I can. This doesn’t mean that I will never need to go to any of these places, it only means I am doing my best to keep myself from having that need, or causing anyone else to. This is harder than many people understand, and I am okay with that, I accept that this isn’t everyone’s reality.

Of course, the joy of my days are when I am able to see my niece and nephew! As for right now, that happens more often on a tv or phone screen, but it something! I will take it for sure! Of course, this means figuring out technology, which I am a 80s/90s kid, so I’m not great at but I try! I would love to be a fly on the wall when my parents and I are trying to all watch games on our phones or on the tv and we just can’t get the picture or the volume to work- because it’s gotta be hilarious! We figure it out at some point 😊

Then there is grocery ordering, reading every label for food triggers-sodium-sugar-etc, navigating pharmacies, navigating “best times to buy”/what’s on sale when.

Keeping a record of dates of medical appointments, urgent care/ER visits, labs, migraine logs, heart rate/blood pressure, scans/procedures, vaccines, details details details, for those brain fog and “can’t think” moments at the doctor’s office or emergency room/hospital. Been there and done this one too many times. I’ll be recording and documenting until Jesus calls me home!

Reminding myself every day, all day, that Jesus has Lucy, even though I want her so bad here with me. And asking him what is left unfinished in me, what is left of our story? Because the pain of grief somedays is heart piercingly hard to swallow. I am constantly thinking about what we would be doing, what experiences we would be having, she is all around me, yet only remembered or spoken of by few.

My hematologist likes to say, “keep up being boring.” 😂I absolutely love this! Because I have always been just fine with my reality. What she means by it though is, don’t be doing anything that causes bleeding- inside or outside. When you have a blood disorder there are so many things that can happen. Just think about your blood- it literally goes to every organ, carries nutrients, fights infections and viruses, helps in the healing process, etc. So if you cause yourself to unnecessarily bleed, their job becomes significantly more complicated, it’s not just your blood, but your whole body and health. I always tell her I can promise her I will be boring! When you have lived a life at the pace that I have had to, and had the privilege to, it may look “boring” to the world, but the truth is you find so much life in the simple things. You may not look successful, or productive, or worthy of insurance to some, but that doesn’t stop you from finding the joy, seeing the colors, breathing in the hope of a new day, and letting go of the day you just were given. Everyday is a day given by Him. No two days are alike. I try not to summarize my days as good, bad, horrible, etc. Instead, I do my best to remember the moments of the day that gave me a deep breath, a belly laugh, or a cleansing cry.

So what is my success? What do my days consist of? Well, my hematologist hits the nail on the head, if you want to know the viewpoint of the world looking in, I lead a boring life. And if that’s the way someone chooses to view my life as, so be it. The truth is, my days consist of many tiny important choices, ones that begin the moment I wake up until I lay my head down at night, and even ones during the night. The biggest tiny choices are the moments I cry, “Jesus, I need you!” Which I desire to do more often. The other choices I have described above, and really, I don’t know how much more I can do to explain myself, because it’s honestly exhausting for me to focus on myself this much. Which I’ve come to realize, is possibly why these questions got under my skin so deep. One of these people shares my love of Jesus, and the amazing handiwork in creating our human bodies so intricately. The other I have not held back my love of Jesus, and especially my view of Lucy running into the arms of Jesus before me.

I am glad these questions unnerved me. I like when something ruffles my feathers and makes me think. I like a challenge. It just helps if I am not in the midst of a migraine “hangover,” as I like to call it. (a.k.a brain fog)

What about you?

Life Book of the Week: Snowflake Bentley, by Jacqueline Briggs Martin. (I love to think about the amazing detail that God puts into every snowflake- if he does this for every snowflake, how much more detail has he put into creating you!)