Time seems to have gotten away from me because somehow it’s been over three months since I last wrote a post. I guess part of the issue is that I just didn’t feel like I had enough to share. Progress has been slower than I want it to be, but I might as well explain what’s been happening.
Med Changes
When I first wrote about my MCAS diagnosis, I was only on the initial medication that the doctor recommended as a starting point. The tricky part about treatment is that you have to treat different parts of the body with different meds. I hesitate to mention exactly which ones I’m taking since I’m not a doctor, and each case is so different that it probably wouldn’t apply to someone else.
The basics are that I started taking two different over-the-counter allergy meds twice a day, one asthma medication for my lungs, and another for my stomach. On top of those pills, I’m also getting a monthly shot that helps block IgE, which is the protein that can activate mast cells and trigger a reaction.
Even after all that, I was still having some trouble during and after eating. My doctor eventually added one more medication, which I now take before each meal and at night. Once that one was added, I started feeling like everything else finally started working. It might also be that the monthly shot just needed more time to do its job. The doctor said the goal is to stop the chain reaction that signals the mast cells to activate, which should give my body time to heal. It’s not working as fast as I would like, but it is working.
Living with MCAS
Overall, I’d say I’m doing much better than I was a year ago. We don’t know all of my triggers yet, but we’re slowly building a list. The biggest ones have been the strangest to me because I was used to thinking of allergies as something caused by food or pollen. I’m sure I have some food and pollen allergies too, but the thing that triggers me most often is actually stress.
Stress can mean a lot of things, so I’ll try to explain what that looks like for me.
I can fall into an allergic reaction if I experience too much physical or emotional stress. Physical stress includes things like stubbing my toe, working out, or catching a cold. I have to be careful if I get hurt because it often causes hives around the injured area. Reactions can also happen if I move between temperatures too quickly, so I have to be careful with showers and when stepping outside. I wear an Oura ring, and it can actually detect my heart rate going up when a trigger starts. It’s pretty strange to take a shower and then have the Oura tell me I had a great workout.
Emotional stress can trigger reactions too. I could be sitting in a stressful meeting and start to feel lightheaded, and I’ll usually end up with hives on my chest and arms. It’s kind of funny to say I’m allergic to work, but trying to stay calm all the time is a real challenge. The meds have given me a lot more wiggle room when a trigger starts and more time to catch it before things get too bad.
Even with all the progress, there are still times when I start reacting and have no idea what caused it. My doctor says we may never know all the triggers. MCAS is often diagnosed when there isn’t a clear explanation for the allergic reactions.
The good news is that I’ve gone from reacting almost every day to only once or twice a week. And when I do have a reaction now, it’s not nearly as bad as it used to be. It’s still frustrating when a flare happens for no clear reason, but it’s a big relief to have several good days in a row.
Other Big Changes
One big change since I last posted is that I’m now bald! I was getting a lot of hives on my scalp, and after a particularly rough weekend, I decided to shave my head. I know that’s not going to be a great option for everyone, but I’ve been really happy with the results. It significantly reduced the hives I was getting on my head. My guess is that allergens were getting trapped in my hair, but I’m not really sure. All I know is that I’m glad I gave it a shot.
There have also been some smaller changes. My wife and I started the process of swapping out our clothes and household goods for versions that are made with fewer chemicals. From what we’ve read, everything might be contributing to how close I am to the next reaction. With that in mind, we’re just going to slowly replace things with cleaner, healthier options when we can. I even found out that we can switch to chemical-free toilet paper and tissues. It’s hard to know how much each of these little changes is helping, but it gives me a sense of control. As long as I still have things I can try, it feels like I’m not just waiting for the next flare to hit.
Wrap-Up
I think that covers most of the big changes. I originally meant to write at least one post per month, so hopefully I can get back into the groove now. My energy levels are slowly getting closer to normal, and I hope that will help me keep up with the things I want to do each day.
It’s no fun having your body react all the time, and I’m still very tired by the end of the day. But at least I feel like I’m moving in the right direction.