When Your Lucky Underpants Don’t Work
They should gamify your medical records so that each time you have a new and exciting symptom, you unlock an achievement in MyChart.
Haha! If only this was true! I recently requested all my records – it took them a while – but I eventually received a digital file of a beautiful 7,000+ pages of records. I didn’t just request them for the fun of requesting them. I wanted them to go over some of my medical history. However, the overwhelming gratitude I have for every doctor, nurse, therapist, radiologist, the list goes on- who cared for and treated me – only explodes as I read through these pages. And the persistence of my parents, who had two children in need of critical life diagnosis at the time, only God- and that is what they would want me to say. Also, the snack bars must have sustained them somehow 😂 pepsi and peanuts, mini microwave pizzas, zero candy bars? When I say my mom could do a whole parenting course on how to make your car your second home- I am not exaggerating one single bit. We lived on the road – all for the sake of my brother and I. Mom and Dad, grandparents, thank you!
Why do I share this? Well, thank you for asking!
I recently was referred to a new doctor, and as he was going over my medical record and talking to me about what I was seeing him for, he said, “you have had a lot for you age. And all your medical conditions are lifelong…” Now, I don’t know what medical experience you have had, but when you are my age, you get a lot of crazy looks. And comments like, “whoa, that’s a big med list!” “your blood pressure always elevated when you come to the doctor’s office?” “wow, what a heart rate!” Now, I extend an abundance of grace because all of these things are really abnormal. And I know there is pressure to get patients in and out. Here’s just one thing: digital records. I looking at the same screen they are looking at- it has my last blood pressure, heart rate, and date that my medications were reviewed- maybe this could be considered before the comments once and a while. Anyways, when a DOCTOR actually takes the time to see and say this, it makes me cry. Which I held in until I left his office.
When someone, other than family, validates the amount of work and time juggling eleven doctors, roughly twelve diagnoses, and still function on a daily basis- you could cry for days. And I shake a little sharing this very raw and honest truth. Even though I have never known life without chronic illness, chronic illness never goes away – and often times gets harder to keep maintained. And more chronic diagnosis are usually added along the way. It’s just a fact. (Although some say otherwise- which really makes me feel I am off my rocker!)
What do you do for work? for example, has gotten tougher and tougher to answer in my 30s. I almost dread it. I loved having my shop in a store along with other shops- but that season ended in 2019, and really was God’s timing. Since, I have played with the idea of finding another store to have a small shop in- but that isn’t realistic for my life anymore. And then I’ve had an online store set up here for over a year. I have the products made and waiting in my “Indeed” closet. I was thinking this year would be the year- and now I’m not so sure, since I will need to depend on wholesalers and shipping items out. So for now, I write. I will keep making art and living one day, one hour, one minute at a time.
But I thought I would just lay what it’s like to have multiple chronic diagnosis with all kinds of symptoms, that love to collide with each other, and have a big ole’ party anytime they like. I’ll try to make it short and as clear as possible, and not too sarcastic- but that’s my humor in the hard. (FYI: All diagnosis are under doctor’s watch and maintained as well as possible)
Journey with me back to 1988, three months old admitted to the hospital. Pediatrician referred to Duke to the well known Dr. Spock, and I was officially diagnosed with Asthma, Reflux, intrinsic (basically don’t show up on a skin test – but are obviously present due to symptoms) allergies. I had a bad fight with RSV- which made asthma increase in intensity. (don’t neglect this vaccine! It was not available back then!) Early elementary school I began to have blurry vision, which seemed to increase quickly. Which scored me another referral to Duke to the Fabulous Dr. Buckley, who took great care and time with me over many years, when glasses were not as cute as they are now! Later in elementary school I began having migraines, although they wouldn’t diagnose me with migraines, only sinus headaches. I missed quite a bit of school due to these “sinus headaches.” I also was diagnosed with ADHD and learning disabilities in late elementary school. Depression and anxiety came in high school after surviving a fire. Migraines were also confirmed in high school. Towards the end of high school I honestly had a miracle of a nurse practitioner catch that my coloring was off, and did lots of lab work and found two blood clotting disorders and that I was anemic. I was diagnosed with Von Willebrand Type I, and Platelet Storage Pool Defect, which also cause iron deficiency. Not long after high school I began having kidney stones, which led to the findings of Hypocitraturia and RTA, which is abnormally low concentration of citrate and too much acid in my kidneys/urine. As an adult I have had to start taking medication for ADHD and Learning disabilities, when I was in school and home school I could have taken something but I am thankful for my family who helped with coping skills to get through these years- that is not always possible! With age my vision has developed dry eye syndrome and potential for detached retina. On my MyChart I also have the diagnosis of “Grief” not sure which doctor put this on there, but one doctor asked if I wanted it taken off recently, and I said, “No, that will never go away. I especially grieve her when I am in medical situations, so no thank you.”
During my five years of adoption Lucy waiting, I had a few medical “what the worlds.” Two of these came in the area of dermatology. I was asked so many times, “you sure you are not pregnant?” Supposedly these two skin things usually happen when you are pregnant. I developed Melasma all over my face and into my scalp. And I had a pyogenic granuloma on my right hand. (looks a lot like a strawberry) The only problem with this granuloma was it was on top of my hand, so every time I hit it on something it would bleed forever. So I just have a nice scar to remember it by.
My whole life I have had an elevated heart rate. I nor my parents could tell you if it could be genetic or if it started with nebulizer treatments, because those began at three months old, and I was sick even before that. Now I do tend to get a heightened blood pressure once in a while- but 9 times out of 10 I can tell you why.
Above is what is cut and dry, easy peasy to explain/talk about. Next is what becomes complicated, as I realized last week during an appointment that the doctor was trying to figure out the root cause of something.
Let’s call them symptoms, seems a little simple for things that can get tangled up together, but it will work. They can be caused by one or multiple of my diagnosis, and they can’t really be pinpointed to just one:
- sensitivity to lights and smells
- air pressure super sensitive
- inflammation
- dizziness/nausea
- Constantly hot nature/body temperature regulation
- Face flushing
- Food sensitivity- constantly changing
- Hair loss
- Skin sensitivity: food, fragrance, lotion, soap, shampoo, conditioner, skin care, air pollutants
- Peeling nails
- Cold hands and feet
- fluctuating energy levels
- Multiple trips to the bathroom during the night- thanks to my kidneys and fluid intake – I already have a hard time falling and staying asleep.
- Brain fog
- Dry skin
- Dry mouth
I share this for a couple of reasons: 1. I am filled with so much gratitude for God and where he placed me in this life- the family, the friends, the closeness to an amazing medical system. 2. I actually hate talking/writing so much about my health, but I think it’s important for everyone to give their life’s perspective right now. To know each others realities and stories- to realize the way certain choices effect others. 3. It’s taken me becoming a mommy- visibly and then quickly invisibly – and doing the hard work of simply getting out and into bed without out my little girl every single day. Until I hit this very different “rock bottom,” so different from depression, but deep loss and longing- did I become okay with the statement ENOUGH. Out of bed? enough for today. Took a bath? enough. If I accomplish anything beyond- enough.
I don’t carry your backpack. You don’t carry mine. Sometimes I fear I will burden someone with sharing a bit of the journey I’ve been on, but then I begin to ponder: “what was I placed here for, why now, if not to share?”
Whatever you’ve done today… all your life… share… and tonight take a deep breath and tell yourself: Enough, and let it be true! Woulda shoulda coulda- tell them – ENOUGH.
In some way I hope this post can encourage you. Even if it encourages you to go google Calvin and Hobbes Comics (quote above) 😊 One of my families favorites.
Life book of the week: The Complete Calvin and Hobbes Collection, by Bill Watterson
