Health Journey

I knew that writing this post would be hard, but I’m finding it even harder than expected. I am going to try to just dive in and see how this goes. The event that I want to tell you about today is what happens when I push myself too hard and trigger a massive flare of my symptoms. Your browser does not support the audio element. Days Before Event The story starts with the days leading up to the event. For my job, I normally don’t have to work long hours, but there are times when situations come up that make it hard to avoid doing so. In those times, we will have a spike of effort where we might work long hours or even just have to change our schedule for the day to fit around some “thing” that is going on. With my condition, both the change in schedule and the long hours are a problem. Basically, I can adapt to a schedule, but sudden changes to that schedule can be risky. ...

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. Your browser does not support the audio element. 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. ...

I figured it is about time for me to give everyone an update on how things have been going since I started the treatment for MCAS. I also just got my second shot this week, so I am a little bit closer to the point where the medication will be fully effective. I also went on a little trip recently that really tested my limits, and I wanted to share a bit about that too. ...

I have been itching to write this post, but at the same time, it feels like such a big announcement that I don’t even know where to start. I guess the easiest way is to just dive right in and start talking about it. The basics are that I got a diagnosis of a condition that appears to be the root cause of everything that has been going on. And on top of that, I have already started treatment for it and it appears to be working! ...

This last month has gone by pretty quickly with so many doctor visits. I am working with new specialists on a possible diagnosis, but I don’t fully understand it yet to write about it in detail. The general overview is that she ran a bunch of tests, and so far, a few of them have come back with abnormal results. I’m trying to contain my excitement until we can review them together. On top of that, I also have some good news about my thyroid. ...

I have been putting off writing this post for a while, not because I didn’t want to write it, but because I am having a hard time finding the best way to describe my experience with Spravato. Let’s start with the basics, though, which is that Spravato is a nasal spray version of esketamine, which is a drug used to treat depression and anxiety. It is given in a supervised setting, and my understanding is that it is used only for people who have tried multiple other treatments and have had limited to no success. I started taking it near the beginning of last year, with a frequency of between twice a week to once a month, so I think I have a fair bit of experience with it. ...

Look at this! I didn’t wait another month before writing a blog post! I just wish I had some better news to share, but I at least have a lot of news. This last week, I went to a neuromuscular specialist that was 2.5 hours away after a referral from a rheumatologist. The plan was that they were going to run some tests based on what I had already had done. The whole process of even getting an appointment was a pain because I needed a referral and I needed a doctor to complete a packet of paperwork to go along with it. They also needed to forward all of my current records for review. So once I was accepted, I thought I must have finally found the right place. ...

There is a concept in the chronic pain/illness community called being a “spoonie.” It is something that I have been thinking a lot about this week in particular, so I thought I would spend a bit of time writing about it. I mainly need to write it out so I can convince myself that I need to pay more attention to it because I keep pushing past my limits and paying for it. This week is also the one leading up to my big appointment with a neuromuscular neuropathologist, so I should have been taking it easy on myself. Instead, I have been coming up with all kinds of excuses to push myself too hard. ...

I know, I know, it has been a while since I posted anything. I thought I was going to have some great news and something fun to write about, but instead, things have been a bit of a downer lately. To catch you up, I need to go back to last month when I finally got to meet with a rheumatologist. Your browser does not support the audio element. The Wait The craziest part to me about the appointment was just how long it took. I got onto five different waiting lists, and so far, only 2 out of 5 have contacted me back. The one that I was able to get into first seemed like a nice place. They asked for tons of data to be sent over to them about my history and past tests. Leading up to the appointment, they also had me fill out some pretty complex forms that went over all of my symptoms and what I was experiencing. Friends told me that I should be careful not to get my hopes up too high, but I was honestly too excited to listen… ...

After the scariness of my last post, I am really glad to be sharing some good news. I mentioned in my last post that I had a pharmacogenomic test done and I have had long enough to make some changes. If you don’t know what that kind of test is, don’t worry because I didn’t know what it was either before I got it. The short summary is that they do a few quick cheek swabs and look at your DNA to predict how medications will work for you or might have undesired side effects. ...