Welcome!!!
This is my first blog entry, and I will be sharing a bit of my health journey. I’m diving right in. It will feel like a journal entry, I’m sure, but I’m sharing this with the world in case it could help someone else the way other blogs and pages have helped me learn and not feel quite so alone in my struggles.
That said, this space is for everyone. I hope to build a mini community. In this community, conversations will range from health, HaTs, menopause, quilting, crochet, baking, and recipes. There's a possibility that the topic of what’s going on in the world could come up from time to time. The list is extensive and all-inclusive. If you like it here, I hope you will stay.
Today, I am in a state of nervousness, once again, over my health. I’m trying hard to listen and learn what my body is attempting to tell me… what signs it’s giving me to help keep it alive.
For the last couple of days, as is not unusual, one of my ankles has been swollen halfway through the day. Last night, I noticed the other one was starting to act up. It doesn’t necessarily scare me. Why? Because I have a genetic mutation called Hereditary Alpha Tryptasemia Syndrome, called HaTs for short. I’ll get into that more at a later time, but for right now, it just seems to be one of my “usual” symptoms that I’ve grown accustomed to.
Let’s get back to today. I woke up tired. Not unusual either. But I started to feel some head pressure, my ears feeling like they wanted to plug (this is a newish one), my hands feeling like they were swelling, a general feeling of simply not feeling right, leaning towards dizziness. The more the symptoms creep in, the more nervous I get, and my brain starts to go down the path of “worst case scenario” every single time.
It dawned on me that it almost felt like it could be my blood sugar. It felt, to me, like it could be low. Luckily, I knew exactly where I put my glucometer, so it seemed like a good time to check it out. 104 - high, considering I had eaten 3 hours ago. Time to grab some water, sit down, and chill for a few minutes. Then, recheck it in 5 minutes to see if it's moving in any direction, if at all.
105 - That’s moving the wrong way, and I’m a bit confused why it would be going up. Time to Google a few thoughts while I wait 5 more minutes and drink some more water. Also, I should add that I had put on compression socks on both legs this morning, so I took off the one on the leg that usually doesn’t need one.
Google confirmed my guesses, a little sprinkle of daily stress (trying to learn a new concept this morning), a bit higher dose of my BP med (I’m supposed to be taking an even higher dose but my body doesn’t seem to like it), and my HaTs could all play a factor in how I was feeling, the swelling and the blood sugar spike.
The next test - 100. Thankfully, it was dropping, and some fear calmed.
Histamine is the biggest culprit in my life, and I’m learning that the hard way. I’ve known I have “elevated mast cells” for approximately 17 years. It’s only been the last 2 years and a few months since I’ve known I have HaTs. There’s no “cure” for it. It’s genetic. There’s no magic pill to fix the symptoms. It’s “take antihistamines” and learn to live with it. It’s only been the last few weeks I’ve been able to use Cromolyn Sodium (CS) as my CRP was extremely elevated. Don’t worry if you don’t understand all these things I’m talking about. Trust me, I will slowly fill you in with what I know to be true and what I am learning, along with future knowledge as I learn it. I will share it all with you.
I realized I hadn’t taken CS for the last few days. No wonder my symptoms were creeping back in. It’s now been approximately 30 minutes since I took the CS after my blood sugar began to drop. The final check - 97. Whew.
It was after I took the CS that I thought about starting to write this all out. It was when I went to the trash to toss the little plastic ampoule. The trash can is in my little mud/laundry room and right beside the door. I did what I always do, I tugged on the mini blind to look out the window of the door. I stood there looking around at the street and my neighbor’s yards. I thought about all the people out “there” living their lives. My thoughts… “The neighbor across the street hasn’t been mowing his yard, I hope he’s ok.”, “Looks like (the other neighbor) pulled out their 4-wheeler.”, “Geez, there’s a lot of traffic today.” You get the idea. Random thoughts about life going on in my head when I realized how isolated and trapped I feel inside my house.
The problem is, it’s my health that has made me almost fear stepping outside my house. I don’t enjoy it anymore. Even a quick trip to the store can become beyond possible. I might feel fine, almost good, before I leave, and while I walk into the store, but within minutes of being there, I could start feeling dizzy or like I’m going to pass out, sweaty, or just hot.. I don’t know if it’s panic, anxiety, or my HaTs flaring. What I do know is that it doesn’t happen all the time, but when it does, it scares the crud out of me.
There you have it. This is what my “today” looks like. It’s chaotic. It’s confusing, but it’s only 1 pm, and this has been a not-uncommon morning. Screaming internally, wanting a normal, functioning life while dealing with the cards life handed me.
Until next time,
Nan
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