being sick osteogenesis imperfect

Being Sick and Having Osteogenesis Imperfecta

It’s summertime, and you know what that means-everyone seems to be sick with that miserable upper respiratory cold that goes around without fail at this time every year. You know, the one you have tried desperately not to catch? The one where you tell yourself it’s just a sore throat, and then before you know it, you’re pretty sure you’re dying from drowning in snot from the inside out? Yeah. That one. 

Having Osteogenesis Imperfecta makes catching a simple cold a major problem for me. Because my rib cage didn’t develop normally and my lungs can’t expand completely, I have breathing issues to begin with. Combined with mucus production from a cold, it’s an over night recipe for pneumonia. I’ve developed pneumonia a few times after being sick, but only a couple times bad enough to be hospitalized. Oxygen is super essential to living, and when your saturation level drops to 58% (should be between 90% and 100%) and you’re literally turning blue, it’s hospital time. However, at this point, Mom and I have it down as far as how to start treating it early, and we have all the necessary equipment in house to do so. 

If you’ve ever had pneumonia before, you know that the only way to get better is to cough all that nasty mucus out. The problem with this for me is that coughing hard repeatedly causes me to break ribs, and sometimes collarbones. The muscles that I use to cough just puts too much stress on my bones, and because they are weaker than my muscles, they eventually just break. Once they break, it is extremely painful to cough, move or breathe. The more pain I have the more I want to suppress the cough (naturally), and then the pneumonia just gets worse. It’s not a fun cycle. 

So what do I do? I try really hard not to get sick at all, and when I do, we don’t mess around with it. At the first sign of a cough or sore throat, I try to start taking some natural remedies and Zicam (a zinc supplement you can get over the counter at Walgreens that works wonders). I also take some herbal supplements that boost my immune system every time I go out in public with a lot of people or somewhere where I know someone will be sick. Oregano oil pearls are also an awesome anti-viral and anti-bacterial supplement. Usually, a combination of these knocks out most colds and flus at the early stages for me, but if I forget to take them right away or they don’t do the job, I don’t mess around and start antibiotics fairly quickly. I  usually try to start with a lower intensity antibiotic, but if that doesn’t work, Leviquin has proven to be the best option for me. It’s a pretty intense drug and usually gives me a headache and makes me very jittery, but it knocks out basically any infection. I try not to take it until I really need it because I don’t want to become immune to it, but man, it’s amazing what that drug can do! 

My family passed around this year’s miserable cold/flu a couple months ago, and man was it horrible. I managed to avoid it for about three weeks, but eventually my body just gave in. Unfortunately I did end up on antibiotics, but they worked quickly. I managed to escape this one with no broken bones (although a very sore back). Hopefully the next one will wait a while to come around! 

  • Kathy Gray
    July 19, 2017

    Kathryn, Thank you so much for sharing your story. I have learned so much about the challenges you and others face. I commend you for living your life with such grace and courage. Keep sharing. Thanks, Kathygray

    July 20, 2017

    I am so sorry that you have to endure the dreaded cold and cough. None of us like it. I have tried taking massive doses of Vitamin C when I first feel symptoms, and this really seems to help me. I have never heard a doctor advocate this solution. It is actually one Mary Ayres uses. However, I have never had a doctor say to take Vitamin C. We could ask Grand Doc!

    Take care of yourself, and have a great summer.

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