Discerning the Invisible

Allow me to take you on a wild adventure, into the world that is the fascinating, yet misunderstood and unseen… As I wrote last week, this is an adventure that many have had, yet no two individuals have the same experience or lasting life after shocks. Also, there are many who haven’t had even a taste of the adventure I am about to take you on. So whether you have been on this rollercoaster, or are on it, or haven’t a taste, I’m going to do my best to walk you down my path of adventure of diagnoses of invisible chronic illnesses, and accepting that they are invisible.

The thing about having multiple chronic illness diagnoses is that one effects the other, which as I write today I will explain this.

I started out this wonderful life in December of 1987, a Christmas-time baby! After a few months, things started to not seem right to my parents, my doctor admitted me to the hospital, part of the problem was I had RSV (there was no vaccine available at the time, PLEASE GET YOUR CHILDREN VACCINATED FOR THIS! Don’t take this one for granted!). I was diagnosed with asthma and GERD. GERD being the most prominent at the time, but asthma began to catch up quickly behind it in seriousness. My primary care doctor sent me to Duke Children’s and I began receiving care from specialist there. Clinic visits were often and nebulizer treatments were a constant companion. Stool samples were collected a bunch and rushed to the lab, thank you Mom! I can remember being in the hospital on and off until I was about five years old, with violent GI viruses, and then they seemed to be able to manage at home after that. (Viruses didn’t necessarily lessen, they just were more manageable.)

Fast forward to fourth/fifth grade, school began to be a struggle academically, so that’s one thing. I was also having some severe upper respiratory viruses, so this called for major steroids. And what we thought had been sinus headaches, now were developing into something more painful. CT scan showed nothing that would be making me have sinus headaches other than allergies, and this was not allergies. But with little research on migraines in children, there weren’t many options.

By the end of fifth grade I had completed testing to determine whether I had any learning disabilities, add/adhd, and I had both. ADHD was more the “inattentive type,” which presents itself as whole lot of thoughts in my head, swirling, yet others don’t see that, so the world thinks I’m not paying attention, when really I am paying attention times 1000! And I have a real reading comprehension learning disability, which effects all subjects. Accommodations were do-able at the MS I attended, and homeschooling in HS was a huge gift. Through MS and HS my parents, doctors, and I chose not to do medicine at the time, however, as an adult medicine has been a much needed resource! And I am a big advocate for what works for you!

When I was in the ninth grade, is when we were in a hotel fire, and it was arson. Now this is an experience that really made unique marks on me, my parents, and the three friends that were with me. I am speaking for myself, and I speak with confidence in my truth. This experience, as only a few others, did a turn-upside-down-spin-around job on me – physically, spiritually, emotionally, and mentally. Mentally, it sent me into a all out fear of the world, my surroundings, separation from my family, triggered anxiety and panic like I had never experienced before. My heart is racing thinking of the days and months that followed. It was beyond scary, it was deep despair, and I was desperate to “get over it.” Unfortunately, trauma of this kind can only be confronted, dealt with, and when needed, medication to balance out the chemicals in the brain. So once I was ready to name, claim, I was diagnosed with depression and anxiety. And remain on medication, the only way I can chemically keep the heart racing to a minimum and the only way I can function and have a clear mind, along with surrendering all day to Jesus, who is the one and only person who knows and sees all things.

Jump two years, and I am at my doctor’s office for a annual check-up. She walks in, immediately says, “You are really pale. We need to run some labs.” PAUSE: If you have ever experienced the feeling of being validated by a doctor, whether it be feeling like you have a virus, or needing labs or medicine, or needing a test ran, you know that these moments, you feel like you are dreaming and you just want to burst into tears! The realization that you not are going to have to fight or explain yourself for the zillionth time, sends you into a state of shock, am I correct? Unpause. She ran the labs, lots of blood! And since my mom was her patient too, and I gave her the okay to give the results to her, she called my mom a few days later and told her what she had thought, was actually true. I had two blood disorders. I needed to see a hematologist immediately. I was diagnosed with VonWillebrand Type 1 and Platelet Storage Pool Defect. These have a whole list of life effects, but the most urgent ones were iron and no ibuprofen.

Which leads me to my next diagnosis, migraines. No ibuprofen, well acetaminophen didn’t really work, actually neither really worked for migraines. So new doctor, journal everything I ate, sleep, migraine begin/end time, symptoms, medicine taken… It’s been nearly 17 years, I lost count of how many preventative medicines I tried, and how many rescue medicines I have tried, but I am finally to a point of having a migraine about every 8-10 days, much shorter and less excruciating, if I am lucky I’ll go 12 days. Before I was having 1-2 in a 7 day period. (I’ll let you add up how many that is a month/year).

Sorry, I’m not done yet. In 2007, I began having kidney stones. I was told so many things that I should do or fix. Come to find out, I produce kidney stones because my body lacks what it needs to flush out my kidneys. Yes, diet and fluid intake help a lot but I was told lemon juice would do the job.

Now, I have food triggers that make some of these diagnosis worse, like GERD and migraines. Iron nutrients are in green leafy vegetables, I have to watch how many of these I eat because of kidney stones. GERD anything fried, spicy, seasoned, etc makes my whole GI system explode! WIth Migraines, my food triggers are forever changing, but I read every ingredient on everything, preservatives are everywhere even when they say they are not. And eating out, it’s like taking a leap of faith down a black hole, but I try!

I also have environmental and unavoidable triggers with migraines, asthma, GERD, and allergies. I have to be constantly aware of ingredients in soaps, lotions, shampoo and conditioners, detergent, strong smells and odors and perfumes. Heat, humidity, air pressure, UV index, temperature changes, air quality, high pitched and loud noises. Stress, grief, sleep, and bedtime.

My blood disorders, I have to be careful doing any type of cutting. I have to pay attention to any minor scrape or cut, bruise. All dental and dermatology have to be educated and aware of bleeding risk. All surgeries have to be planned, and I must be admitted to the hospital 24-48 hours before for platelet infusions, depending on the severity of the surgery. Big prayer: I never have to have surgery! I’ve had one, lost a bunch of blood, don’t really want to do that again.

As I have said before, and I will keep saying it, I have never known anything other than chronic illness, it’s apart of me, it’s been my life and I wouldn’t change a thing. Someone put a word to this life as I know it, “long-suffering,” having or showing patience in spite of trouble. I have not done this perfectly, I have “what if” moments and thoughts. But then I remember, I’ve been given life, life with a purpose, life that is to be lived with patience, because one day we will not have to discern the invisible…

But for today, I encourage you to look around, disabilities, illnesses are not always visible, some of the hardest illnesses can be invisible, hidden, tucked way down inside, master of disguise, take a minute and ask for help discerning the invisible…

Picture above: How nebulizer treatments are done at your grandparents house! Paci in my mouth, paci in my hand, and mello yello to drink when I am done 💕

Book of the week: My Beautiful Broken Shell, by Carol Hamblet Adams