If it’s not one thing…

I come to you today a bit weary, but grateful. You know the saying, “if it’s not one thing, it’s another”? Well, if you yourself have chronic illness, or you advocate for someone with chronic illness, you know the impact of this phrase.

First, let me make very clear how grateful I am to live so close to an amazing medical hospital and clinics. This truly is by far an incredible gift! So many have to move to get closer to the help they need, or travel constantly for medical appointments. Second, I am grateful to have insurance that this hospital and clinics remain in network.

This being said, the nitty gritty everyday grind is a full time job most days, if I’m totally honest, it’s a 24/7/365 day job.

Allow me to attempt to give you a glimpse, with all intentions not to bore you.

Every November/December I hold my breath and hope that I don’t have to change insurance or at least have insurance that will have my (8+) doctors in network and cover the majority of my (18-ish) medications. And I have learned the very important lesson that it pays to get the wisdom of an insurance agent before accepting a plan! So once my heart rate is back to normal, I wait to see what truly will be covered. Well, so far so good this year, except my pharmacy isn’t in network 😔. This might not seem like a big deal, but let me just tell you, when you have to get prior authorizations and your doctors have to jump through many hoops to get your medications approved by insurance, this is bigger than a deal, its a down right work of art, that now has to be carefully and meticulously moved. Now this wouldn’t have been as laborious, if I had known in November that I needed to change pharmacies, and my prior authorizations were being sent in, but now I must do a lot of re-communicating… my favorite 😩NOT!

That’s my 1st part time job. My 2nd part time job is balancing how each of my diagnoses affect each other. Example: In December, I saw my urologist, for kidney stones/kidney function/x-rays, and I had labs for my blood disorder. If you are familiar with kidney stones and all that goes along with it (don’t want to gross you out) urine collection is a big test for kidney function. Well, I did great on volume, but I had way too much calcium and sodium intake. Where in the past, I struggled with volume and calcium and sodium were not high, if it’s not one thing it’s another… (I have no energy to explain or defend myself in why this completely flip flopped and actually I’m not 100% sure, but explaining would be missing the point.) As I left my urology office, I stopped by the lab to have blood drawn for my hematologist, to check out all my levels for my blood disorders. No lie, they took 6 or more vials! Results come back, I have levels so close to where I was when I was diagnosed, that it is jarring! I’m speechless, in shock, and now in need of major iron supplements. And along with that, need to stay injury free, no cuts, bruises, basically need to touch nothing because I am so clumsy. This is just one day.

A daily balancing involves brain energy that goes a little like this: eliminate migraine triggers and reflux triggers- so no processed or canned foods, no chain restaurants, fresh food, some frozen, be careful – make sure you read the labels. no red meat. greens but not too many. dairy but only 1-2 servings. eat what you can, but watch for the triggers. water water water. drink in hand at all times. be aware of lighting, smells, body temperature, air pressure, surroundings. take deep breaths. don’t over schedule or overextend. and most of all cling to Jesus.

I share this today to not only give you a glimpse into an adult’s world with chronic illness, but also give you insight into what medical moms and dads and caregivers are facing everyday. I learned how to navigate this world, and yes it is a world within itself, by watching my parents, but not everybody gets that opportunity.

Not every person has the same story in the medical world, but there are some things that we share that we want the outside world to know and be okay with us sharing.

• PTSD, anxiety, depression, panic are very real! For the patient and for the family/caregivers. Our experiences go beyond a regular check up, or urgent care visit, even though we have those too. We are prepared for appointments to turn into more appointments or even hospital stays. The last thing we need to feel is that we need to suppress the need to talk through these things, without anyone judging or trying fix. We need people to surround us, to know when we have reached our limit, and will have the courage to ask the hard questions and walk with us through them.
• Support looks different for every situation and for every individual. Some need lots of hands. Some need texts, notes, and reminders that they are remembered. Pay close attention to their needs. Do what is possible. Ask if they need extra help or if there is a way you can help, and simply accept the answer.
• Encourage them to be real, not ok or fine or good, but real, raw, and true. Be trustworthy of keeping these real conversations close to your heart and mind. There is no need to share these conversations, but share only if: 1. you were asked to share or 2. if they or someone else is in danger.
• Try not to comment or make suggestions about something you don’t know anything about or something you just have “heard.” Do your research if there are specifics. Educate yourself or either stick to the basics information that they have given you. Your best source of information is the patient or caregiver. Ask – most of the time we have the resources ready and saved for our own reference – just takes a click to pass it on ☺️

My hope today is for two things: 1. If you are in a place of “if it’s not one thing, its another,” know you are not alone! I am with you and I am praying for you today! 2. If you know someone that is a medical mom, dad, caregiver- consider a note or text or email, a reminder they are not forgotten, that they are valued, and that the work that they are doing is life-giving and matters!

(The picture today is a perfect picture of where I long to be when I don’t feel well. And now as a Mommy, I long to have my little one cuddled up to me also when I am not feeling well. We had many moments of my Mom, Lucy, and I snuggled together taking naps, and for this I am incredibly grateful!)

Life Book of the Week: Abba’s Child, by Brennan Manning