Growing up with Lyme disease, I thought I knew what it was like to take a lot of medicine, but it wasn’t until my mold diagnosis that I learned the true meaning of “a lot”. For me, it isn’t the amount of pills I take a day that matters—it’s the number of times I have to do it. At the time of writing this, I get reminded 47 times a day to take medication. Sometimes a reminder is 15 pills, other times it’s just one. But 47 times… That’s a lot.
Because of all my medications, I can only eat at very specific times of the day. I can have breakfast, lunch, and dinner, but absolutely no snacking, because there aren’t enough hours in the day to eat at an unscheduled time if I plan on getting through all of my meds. This was hard at first, but it has become so second nature to me now, that the thought of putting food in my mouth at a time other than a meal seems completely ridiculous.
Almost all of my meds have to be taken 15 minutes away from water or other supplements, so it requires a great deal of planning and using a combination of Siri (my iPhone virtual assistant) and my medication app. I can picture someone being confused as to why I use a medication app as well as Siri to remind me about my medication. Why do I do this? Well, we have two different goals here: getting each of my meds taken throughout the day, and knowing when to take them. For a medication app, you input each medicine and set the time you wish to take it. If you say “take B12 at 10:45 am”, then at 10:45 am my phone will ding, alerting me to take B12. Although I try to set those times as best I can, it’s all relative. This brings us to Siri.
Every morning I have to take 8 capsules of Cholestyramine an hour before I can eat breakfast. If I wake up at 6:30 and take Cholestyramine right away, then I could eat breakfast as early as 7:30, making all my other meds fall in line after that. But if I don’t wake up until 9:45, then I can’t have breakfast until at least 10:45, making it so my medication app is telling me to take B12 at the same time as breakfast, even though there are 9 other meds before B12 that I slept through. So as I said, it’s all relative. I use the medication app as my checklist, to check off each med as I take it, and I use Siri to remind me when to actually take it. Friends of mine hear me tell Siri “Remind me in 15 minutes to take my medicine” oh…about 47 times a day. It’s a challenge, but with the combination of Siri and my medication app, I’m able to successfully take everything each day. I changed Siri’s voice to have an Australian accent, so that helps a bit. 🙂
As you can probably tell, the main thing I do each day is take medication. It’s a full time job, but I’ve found a few tricks that make it easier. First off, I put all my main medicine bottles in a woven basket from Target. These are all the meds I take each day that don’t need to be refrigerated, and aren’t in huge bottles. I keep the basket with me, and if I move from the couch to my desk, then all I have to do is bring the basket. No more running around looking for my different medications.
Another thing that helps is having glass cups in every location I might possibly be. Many of my meds are drops that need to be in a little bit of water, so I need a cup to be nearby as well. That’s why I have a glass next to my bed, my couch-side table, my desk, the kitchen, and my sewing table. That way, as long as I have my water bottle and my box of meds with me, I’m all set.
Here’s a video I made showing all the meds I take throughout the day, from when I first wake up, to when I go to bed at night. You can watch it here
Something that comes along with mold treatment is going to a lot of appointments. I’m always on the road driving to and from different treatments, and while I’m gone I can’t afford to not take my medicine. If I take a few hours off, then that’s a few hours later I have to stay awake at night—something my body just can’t do. So I have a medicine backpack. When I’m leaving for an appointment I check my medication app and look at all the meds I’ll need to take while I’m gone. I throw the pill bottles in the backpack, and count out the drops or liquids and put them in glass jars with lids. Then I throw those in the backpack as well. I use old Yerba Mate glass containers, but anything will do as long as it’s glass and not plastic. I’ve learned that when dealing with medicine you never want to use plastic—it can cause problems. And lastly, I usually pack two water bottles so that I have plenty of water for all my pills on the road.
One more thing about medicine that I’ve learned is that compound pharmacies are your friend. They work with medication that you might otherwise not be able to take in a certain form, and construct it into one that works better for you. This changed my life when it came to Cholestyramine. Anyone who is treated for mold will likely cross paths with Cholestyramine at some point. It comes in this terrible powder that I just couldn’t stand to take. I could barely choke it down once, let alone four times a day for the next year or two. That’s when my mold specialist told me we could get it at a compounding pharmacy, and they would put it into capsules for me. So instead of gagging on four powdery drinks a day, I was taking 32 capsules of Cholestyramine a day, which was perfectly fine with me! I also recently changed from doing IV glutathione multiple times a week, to doing nebulizer glutathione, which is prescribed through a compounding pharmacy as well. So keep compounding pharmacies in mind if you ever come across a medication that is just unbearable—there might be an alternative way to take it!
For those who prefer audio over text, I’ve recorded myself reading this post here: