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I wrote the update below in late February. Since then, of course, we have all experienced significant change as we have worked together to try to slow the spread of COVID-19. To that end, the ADA has made the thoughtful decision to make the Tour de Cure a strictly virtual event. When you read about my intention to go to the race and take pictures, that won't actually be happening this year.
In addition, I wrestled with the notion of how hard I wanted to push to help raise funds in a difficult economic climate. I know some folks may have suffered unplanned job changes; others may be hesitant to donate to charitable causes because of general economic uncertainty.
I spoke to leaders within the ADA, however, and I learned that they are marshalling resources to offer signficant assistance to diabetics during the pandemic. As you likely know, the virus has had a dramatically negative impact on diabetics. Often, in fact, it has proven to be fatal. The ADA has been working to communicate with governors and lawmakers across the country to promote legislation and executive programs that can offer vital assistance and protection to diabetics.
As a result, I do still believe it is important to continue to generate funds for the ADA. Please read my annual update to see how I'm faring with the disease, and, if you are moved to make a donation to my campaign after reading, I would be very appreciative.
It was the scariest three months of my life.
Early in August of last year, I experienced some pretty severe neck pain. It came out of nowhere, and it was painful enough that I visited my doctor. He thought it wasn’t anything to worry about, but he warned me to let him know right away if I developed a fever. A few days later, I was watching the movie Outbreak with my family, and I started to feel pretty awful. Now I have quite an impressionable brain, so it’s not necessarily unheard of for me to convince myself I’m ill while watching gross sickness movies like that. But this felt pretty real. When the movie ended, I checked my temperature, and I was indeed very feverish, up around 102 or so.
Thus began an uninterrupted sequence of almost three months of daily fevers. I spiked to 102 degrees or higher every day of the first two months. If you’ve never experienced daily fevers for that long a period of time, I honestly cannot recommend it. It’s draining and just plain gruesome. I felt weak as a kitten, my muscles ached as if they’d been recently barbecued (which, I suppose, they had), and as exhausted as I felt, I couldn’t stay asleep because I was drenched in sweat all the time and needed to go to the bathroom constantly. Along with all of that, I began to lose weight precipitously, which sounds like it might be a pretty great thing, but this was uncontrolled weight loss, and it was eating away at my muscles. At my doctor’s suggestion, I tried to eat more than normal, but it didn’t help with the rapid weight loss. It was, however, helping to cause my blood sugar to shoot up into the stratosphere. I went to the Emergency Room twice during the early stages of the disease as I wrestled with shortness of breath and other symptoms that suggested some pretty serious short-term issues. In both cases, after several tests, my body eased back to normal, and I went home.
My doctor was at a loss. He was having my blood drawn routinely to try to figure out what was happening. Loved that, as you can imagine, since I’m a hardcore needle-phobic. Kind of like broken-glass icing on my poison-flavored cake. Early on, Carolyn and I observed that my ketones were through the roof. Coupled with my frequent visits to the bathroom and the weight loss, we reasoned that I might be experiencing ketoacidosis. The doc firmly stated that couldn’t be the problem without my blood sugar shooting to ridiculous levels. It was higher than normal, he said, but not up in the 300s and 400s that one would normally expect to see during a ketoacidosis attack. However, when Carolyn and I researched some of the side effects of the new diabetes drug I had been prescribed (Jardiance), we learned that it can cause ketoacidosis without the typically elevated blood sugar levels. When we shared this with the doc, he finally agreed to take me off Jardiance. Almost immediately, my ketones went back to normal…but I was still sick (and my kidneys were looking pretty horrible, too, but – spoiler alert! – they got better later). I was out of work on Medical Disability for two or three weeks at this point (can’t even remember the actual length of time), and when I came back, I worked at home during the afternoons because that’s when the fevers were at their worst.
We called in an Infectious Disease Doctor, who then referred me to a Rheumatologist, who, in turn, suggested I see an Endocrinologist. This team of doctors really ramped up the investigation into my mysterious disease, and I finally started to feel like I had a group of medical professionals who were taking my situation very seriously and wanted to solve the problem. They agreed that I was experiencing some sort of autoimmune disorder, and they set to work trying to establish which one it was. Unfortunately, they couldn’t crack the code, either. I was subjected to well over 100 tests. I was told that my doctors started off looking for a horse, but after a while, they realized they were looking for a zebra, and, by the very end, it was very clear they were seeking a unicorn. Nobody knew what was wrong with me, but they were digging into some pretty horrible possibilities. Right near the end, it looked like I might have some sort of incurable, say-your-goodbyes-in-the-next-three-weeks cancer. It was called a something-something-sarcoma-something. Or was it something-carcinoid-something? Myeleukelympho-something? I don’t really remember. Too scary. At any rate, a very general test suggested I did have it, but, thankfully, the more precise test I took after that said I did not. Whew.
I was ignoring all the things it could be the entire time, by the way. I wanted to focus in on whatever it was whenever we figured that out, not stress about all the things it could be. My amazing wife, however, did not afford herself that luxury. She created a spreadsheet of all possible autoimmune disorders and eliminated the ones that didn’t look like what I had. She reviewed all my test results that came in and translated them for her “my body is a gross black box and I don’t care what’s inside” husband. She fretted over each possibility as we tested for it, and she didn’t say “blood cancer” or any of that stuff out loud. Very much. She was an absolute wonder through it all, and I am so grateful to have been able to lean on her that entire time.
Around the middle of October, food started to taste good again. My weight loss started to level off, and I even saw my weight begin to creep up again. I had days when I didn’t have a fever at all. No less than ten people who had seen me at some point during my illness expressed surprise that I looked so much better (which tells me I must have looked Night-of-the-Living-Dead ghastly while I was ill). I went back to my doctors, and they all agreed that my mysterious affliction had left somehow. The bloodwork bore it out.
Somehow, inexplicably, I was better. And it only took three months.
The last thing to come back into line was my blood sugar totals. I worked with my Endocrinologist to get that under control. He wasn’t going to prescribe Jardiance after my experience with it. Carolyn and I learned that the drug can, in fact, cause unnoticed kidney damage in some folks who take it. This tracked nicely with the damage we saw in the scans I got early on. The preferred method of prescribing Jardiance is to measure kidney function beforehand and track it carefully for a few months afterward. That was not how it was prescribed to me, and we think the kidney issue and ketoacidosis complicated the diagnosis of the underlying issue. It may even have triggered it, though we have no proof of that.
Regardless, I am finally well again. I have gained most of my original weight back, unfortunately, but I am looking a bit more healthy and trim overall. My blood sugar has been outstanding, with the exception of a few hypoglycemic episodes during the early stages of trying to nail down the correct dosage of my new medication. I have met with almost all of my medical team, along with my cardiologist, and everybody says I’m in superb health. It’s kind of a miracle, actually. And it’s certainly possible it could all come back, but let’s not consider that eventuality at the moment.
One of the consequences of the illness last year is that I was unable to actually attend the Tour de Cure. I raised money as before, but I was too unwell to do a 5K walk, and we couldn’t really risk exposing me to other illnesses. Most of the time that I was sick, I stayed at home. The good news, though, is that I hit my goal of raising $6500 for the American Diabetes Association. The final total was $7242, which is (once again) a new fundraising record for me. Since I started raising money for the ADA, I have now generated $33,761. I am so proud and humbled by the generosity of my friends and family for enabling me to help this great charity since I was diagnosed in 2012. I hope that the work we’ve done together will lead to others not getting this terrible disease at all or help them fight it effectively as I have done.
This year, I am going to keep my goal at $6500 (the same as last year). I think it’s still a very aggressive goal, and I don’t want to edge my goal higher when it was a pretty challenging one to attain last year. I also want to extend my apologies to all of my donors for my failure to send thank you notes at the end of the fundraising campaign. The illness really sent me reeling, and I had some difficulty getting back on track afterwards. It’s not much of an excuse, but it’s what happened, and I genuinely am sorry that I didn’t individually acknowledge each of you as I’ve done in the past. Please believe me that your support was no less meaningful to me. I just didn’t have the energy to finish off the campaign in the manner I’m accustomed to doing. Barring any weird illnesses this year, I promise to return to my usual technique of photographing a personalized thank you message at the actual Tour de Cure event in September.
If you’re here reading my adventure solely because you wanted to catch up with how I was doing but you don’t want to make a monetary contribution, I completely understand, and I’m thrilled that you stopped by. I appreciate every one of you who have read to the bottom of this mammoth message, and to those of you who wish to donate to my 2020 campaign, I thank you so much for your kindness and generosity.
Thanks, as always, for your incredible support and for all the encouragement I receive from each of you all year round!
Christopher W Brown
Dave and Sue
Paul D. Grubb III
Scott L Felt
Shawn R Callahan
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