I guess I don't even know where to start. I've been drafting this post in my head for months. Months before I even had a Mayo Clinic stamp of approval. But this is what my life has been like since 2018.
I have struggled with headaches my whole life. They started in elementary school, got worse in high school, and finally in college was able to find some medication that would help. Throughout my pregnancy my headaches were constant. My doctors said, you will have great relief post partum. The reason I talk about this, is to give you an idea of where my tolerance was at. I was used to having headaches. It was common and I just lived with it.
By 2018 I was having migraines 3-4 times a week. At times the migraines would last for days. They would get worse, and then get slightly better. I modified my classroom to have the lights low, shades pulled, and my students knew my expectations for an appropriate noise level. I had dedicated and invested in Isagenix to see if this would minimize daily headaches. I didn't notice a difference, but it was a good product with good nutritional value.
I ended up moving back to Alexandria in 2019 for a new position and to be closer to home. I was able to be a traveling teacher in 3 buildings and educate close to 300 students all within 2 days! Pretty awesome opportunity. Most people know that stress can cause headaches. Dehydration can cause headaches, and I think I read somewhere that at least 75% of Americans are dehydrated. Any educator can tell you that bathroom breaks are hard to come by. I soon realized that bright sun and large bright white lights in the gymnasium were causing auras due to increasing strain on my eyes. When I taught outside I wore dark sunglasses, and a hat, if my sunglasses were small enough. I was the queen of big sunglasses. Inside I would wear a baseball hat. I'm thankful that I can pull off a hat most days.
COVID invaded the US, and we went into shut down mode in March of 2020. Most were teaching from home. In May of 2020, I spent my 34th birthday in the ER with a migraine that had been going on for over 7 days. I had been to the St. Cloud ER for 8 hours, with still no relief in January, prior to COVID shutting everything down. I spent the summer inside, in dark rooms and ice packs. I had finally connected with a good neurologist at CentraCare. With COVID making medical care so difficult, my appointment kept being pushed back. I remember the scheduler telling me that it was now going to be August before I could be seen. I busted into tears. I said, I'm in so much pain and I can't wait any longer. Thankfully, she was able to get me seen three weeks later. It was one more drug to add to my collection of migraine therapy. A shot once a month, injections where my dad would have to inject the medicine for me, oral medication that I could only take at most two times a week. I was taking magnesium and vitamin D as preventative medication, along with my metroprolol for my PVS's but also helps blood pressure, which is what a lot of headache medication is; used for another diagnosis, but also for treatment of migraines, like blood pressure medication. It's drug after drug.
August 2020 came and I was preparing for what school would look like in the middle of a pandemic. There was no relief at this point. I had used so many sick days in the year before, I wanted to stay healthy and be the best I could be. I know I had an ulcer in October during conferences, and I tested positive for COVID 11/1/2020. Things are foggy now. The months after getting COVID are muddy. I remember seeing the doctor a lot. I remember feeling that no one had answers, and I didn't understand why I still wasn't better. I wanted to be back at work. It's not easy making lesson plans, and not being able to breathe, too exhausted to even sit up. Struggling to think of the right word to say. Sentences become jumbled. My brain is moving faster than what I can talk and things don't make sense. Then I get frustrated for not being able to talk in a simple fluid sentence. I'm intelligent. But I sound frazzled, and crazy at times. My arms become animated and I tend to get louder because I'm so frustrated. Then being frustrated and having anxiety on top of it, I completely can't even remember what I was supposed to be doing. After quarantine for what was then 10 -14 days, I still wasn't better. Another 7 days, I still wasn't better. By this point, students were at home learning and I was able to teach. I was supposed to be out another few weeks, but needed to be back at school. There was already a shortage of subs. I continued to do what I could and carried around a stool to sit on, if I felt like I was going to pass out. I was winded even trying to demonstrate exercises. It was 2 days before winter break, and I spiked a fever of 101.0 while at school. I couldn't even make it to the end of December before getting sick once again. I was tired, and exhausted the entire break. I don't even know if I left my house. I continued working through the days, and coming home and going to bed. By March, I had my first PICC line placed since all my other veins were toast. They were either too small, or callused from so many IV pokes. I continued IV therapy at Well and Company. I added a ton of vitamin supplements to my daily regimen to determine if we could solve some of my symptoms with additional health tools. I seemed to be getting a bit of a grip. It was a beautiful spring and we could be back outside again, without having to wear a mask.
One day in April, while playing the best game I've ever invented....Ultimate Capture the Ball. This is a class favorite. It is an invasion game similar to capture the flag or capture the ball. In this game, you add 3 gator balls, with the same color hula hoop. This variation allows each person to have a role, and gets more people involved in the game. If you're tagged on the opposite side, you go to your own sideline and do 5 jumping jacks, for example. I thought I'd join the fun and help out a team and try and catch a ball. I was running to score a point on the other side, and tripped on my feet. Down I went. Five days later, I figured out it was broken. By my birthday, I was on my second cast, because my hand was broken as well. I was in a cast until the third week of June because it was taking extra long time to heal. Whether that was COVID related or not, I don't know.
I tend to want to be in control, or have a plan, or an idea of where we are going and what our outcome should be. When this becomes disrupted, I become sidetracked and can't remember once again what I should be doing. The more frustrated I get, the more I can't think. When something that used to come to you so naturally, and now it is a struggle, no one teaches you how to deal with that. It's hard for me to sit down and read a book now. I read extremely slow, compared to how fast I could read before. I have special migraine glasses now that I wear daily to filter out the light that causes eye strain. Nothing is as I was once before. That isn't anything you're taught or something you talk about. Preparing for the worst would mean you're pessimistic. And if you live your life with the glass half empty, then what joy is there in that?
This is the scary part of the post. This is the raw truth of it all. The world was officially in a pandemic, yet no one knew what to do with this girl that keeps coming back with "COVID" symptoms, but doesn't have COVID. Blood tests were "normal" for just recently having COVID. I still had some elevated proteins, and inflammatory markers. There were no markers for classic autoimmune diseases. Which yes is good, but there still wasn't anything anyone could tell me how to make me better. "Try some meditation," someone told me. "Add more vitamin D." Eat an anti-inflammatory diet, which means, low carbs, low glycemic fruits, and lots of veggies. Oh, and try for 100oz of water a day.
I love the independent woman I am. I love that I have my house, a job, family who is supportive, and friends. I love my independence, but when you become sick, and you're by yourself, AND you have another person who is relying on you, what the hell do you do? I was trying to keep it all together. Keeping up my pace of doing all the things. Working a second job, being a mom, an educator, yet I was still sick, and at some point things started to get worse. Even with coming home and crashing on the couch, I never had enough energy. I was spent by 11:30 AM. I realized this person I was becoming was not healthy, and I wasn't able to be the person my little one needed me to be. I struggled through the backpain, leg pain, and sciatic pain, because I didn't have a choice. My savings had been drained from the previous years of various doctors, treatments, and therapies that are not all covered by insurance plus the remainder of what insurance did cover. MRI's and labs, and Neurologist visits are not covered 100%./. Most non-western medical treatments aren't covered. I was at the point in October of deciding if it was worth it any more. I can't be a mom. I can't be there for my students. I have no support for what is going on in my body. I have to support myself. I don't have an option of not working.
From the time of infection I had a PICC line placed in March, I fell and broke my fifth phalanges, and my fifth metacarpal..aka a boxers break. So I rocked my wrapped up PICC line on one arm and a bright pink cast on my right hand. This is a picture of disaster, and yet, the disaster continued on the inside as well. I rested when I could, worked when I could, and there were still days that I had to call into work sick. I had to miss out on family events, friends' birthday get togethers. Then you have that feeling of guilt. Guilt that you just bailed again on another event. The grief, the guilt, and the mind spinning. It just never stops. Breathe in for 4, breathe out 4.3, 2, 1, You remember all the tools your therapist gave you when you felt like you were having an anxiety attack. You tell yourself, it's going to be fine.
I'm now put on stage for all to see.Teach. Teach in a pandemic. Teach outside in all types of weather. Traveling from school to school. What day is it? What cycle day? Which schedule do I follow? I was able to organize my odd and even school days for the morning. I was locked in and could adjust in a moment. One of the things I pride myself on is being able to be flexible in the moment. If something comes up, I always find a way to make it work out. Funny that I'm like that, yet, such a control freak, yet messy, and unorganized at home. See that's the thing. My energy was spent for your kids, for them to learn. When I get home, I'm on E -- and I know I'm not the only one. If' you've ever had mono, think about how tired you were those first few days and maybe that first week. That's how I felt EVERY DAY. I felt drained when I woke up, drained on Sunday when all I did that weekend was lay on the couch.
Do you know what options you have when you are a single independent, college educated with two bachelor degrees when this very independent woman gets sick?......you figure out how to press on. And what do you say to the doctor who says to you, "You need to slow down and take a break for your body to heal." I was doing everything I could to keep my body functioning. FUNCTIONING. I literally had nothing left in the tank. I have blood and lab tests to prove it. My building blocks tor hormone production was not to be found. Without those building blocks, my body was using what energy it had to survive. Now, it would be great if this meant that I was losing weight like crazy, but it kinda went the opposite directions. Medications, motivations, this unknown Post Covid Syndrome, all make the body work differently. And of course the obvious one; less active. Things are more accessible. Target drive up, Walmart Pick up, Amazon delivery, and just about anything else you can think of. Now, this really isn't about what COVID was like when I had it. The point is, the cost it causes to those who are single, working, adults.
Soon the white envelopes starting coming in. I was afraid to open them. Apparently, when COVID first came out, insurances were not charging for specific COVID related tests. Once your initial test was positive, and now have to have more and more testing because of "long COVID" it was just like regular insurance charges and insurance adjudgments. Thankfully at that time I had a low deductible. By the end of 2021, I had met my deductible and my max out of pocket. Everything was covered.
A new year, brings a new deductible. I think I thought all the problems would go away, once I stepped away from education. Less noise, less stimulation, less stress, less of everything. And for maybe three weeks in December it did feel like that. I felt a weight lifted off my shoulders after making one of the hardest decisions of my life. I knew I couldn't do the things I needed to do or wanted to do. It would be selfish to limp along until the end of the year. I didn't want to be done, but my body said it was time. With new insurance comes new deductibles. And for an affordable plan, means high deductible.
I was still set to continue working with Mayo. I had never really thought about having to worry about going to the doctor and how it was paid. But now, at this point, I needed to start caring. I didn't have an endless budget. A reality check hit me. How do people afford care if you are chronically ill, and have a hard time being able to work?
Working wasn't an option for me. I looked into disability, and that was just not feasible to support myself and my mini me. I asked myself, how am I going to make it working? I was lucky enough to find a job where I can work from home and set my environment to meet my needs. My office has room darkening shades. A lamp for low light, and a spot for my aromatherapy diffuser. I also thought this would reduce the symptoms even more. However, I was wrong. If anything, I've had more flare-ups since October than I've ever had since contracting COVID.
My perspective has greatly changed in a lot of ways now. I never wondered how chronically ill patients are able to pay fill. I never wondered about paying for insurance, or having insurance, or even having enough to pay the medical bill. This isn't about asking for money. This isn't about needing money. This isn't about not having enough money. I've never had to think about it. But now I do. I didn't choose to get infected by the COVID virus. I didn't choose for it to affect my body the way it has. But here I am, living this life. This life is less energetic. This life is painful most days. This life was unexpected.
I share this not for sympathy. I share this because those living with a chronic illness was silent and in the background. Because of Post Covid Syndrome, chronic fatigue, fibromyalgia, POTS, and Lyme, are getting more attention because Post Covid Syndrome shares very similar symptoms. There now can be conversation about those chronic illnesses, that those suffering did not ask for either. I am happy that there is conversation on chronic fatigue. There are more articles, and chatter about Post Covid Syndrome, acknowledging that the things I have been experiencing and feeling is real. How my body was affected is real, and the issues I am now having are real too. For as much as I was looked at, as someone who was always sick, I now have validation that it was justified. I only wish others who are critical, could experience what I consider a good day, and what is a bad day, and then their opinion might change.
My days now are filled with a diffuser diffusing Thieves and peppermint in my office, while a 1 liter bag of fluids filled with medication is infusing in my PICC line, while I work on a new claim from a guest. It is not glamorous. Especially when Bentley is pulling an IV line in the background during a client Team meeting. I do what I need to do to get things done, regardless of pain.
This is not how I imagined my life at 35, but I'm using my voice in hopes it will start a conversation about those suffering with Post Covid Syndrome. And also shed light chronic illnesses, regardless of what it is. The treatment of chronic illness and the cost of treating when you have a chronic illness. Finding ways to help support those in need. And acknowledge those around us, who may be surviving a chronic illness. I now know my good days from my bad. Today was a good day, but the 5 days previously, were a struggle. So when you see me out and about, it's a good day.
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