Have you ever felt like you were on a runaway train hurtling down the tracks towards a dead end off a cliff? That’s where I am at this point. I’m overwhelmed with what’s going on. There’s been a lot of changes, and still more to come and it’s so much to comprehend, I’m still working through it.
So, with the diagnosis of MCAS, there are 2 other disorders you need to look at closely because they’re all intertwined with each other. They’re Ehlers-Danhos Syndrome (EDS) and Autonomic Dysfunction (Dysautonomia). EDS is a connective tissue disease…essentially someone who has EDS has stretchy ligaments and tendons which lets your joints dislocate easily. With control of the MCAS, the EDS should be controlled as well.
Now the Dysautonomia is a little different. Essentially, there’s a failure in the Autonomic Nervous System (your heart and veins) which causes the blood to not pump correctly in the body. Two of the main types of Dysautonomia is Postural Orthistatic Tachycardia Syndrome (POTS) and Vasodepressor Syncope (VS). Both of which can cause someone to have blood pool in their extremities and can lead to dizziness, being light headed, and even fainting when standing up. With POTS, it’s your heart rate that changes…it can accelerate or decelerate 30 bpm quickly. VS has to do with the blood vessels constricting rapidly making it hard for the blood to pass through the veins.
I did a very difficult, physical test last week, and I’m the lucky one who has both. This isn’t something that I share with a ton of people, as it can be scary; plus, I thought it was completely normal for people to see stars when they stood up a majority of the time. It never occurred to me that it wasn’t. So. Both my heart and my blood vessels are working against each other. The POTS is more prevalent in my body; and it’s feeding the MCAS, which is making me exhausted anyways. It makes sense. My heart is working overtime, and my vessels are making it even harder. So. We need to get this under control so my body can relax and then we can focus on the MCAS again. My cardiologist said he would powwow with my MCAS doc and they would figure something out for me. In the meantime, try to get rid of some stress and keep hydrated.
So. Today, I saw my MCAS specialist and we had to adjust some meds. What he gave me the last time I saw him in November helped, but only a fraction of where he would like to see me. I’m still reactive to scents within the first 2 seconds of being exposed, and he doesn’t like that. We’ve upped a bunch of meds, started some new ones, and he’s thinking of what else to do at this point. He also said that my Dysautonomia shouldn’t be as bad as it is with the number if stabilizing meds that I’m currently on. He hasn’t talked with the cardiologist yet, and I go back to the cardiologist on the 28th, I’ll be getting another new medication to keep that under control.
There’s a lot of personal stuff going on, still have wedding planning, and now all of this stuff with my body. There’s so much happening so quickly, it’s hard to comprehend. I’m thankful that I get to spend time with my little ones this weekend. They’re my therapy and help get me through the days.
I’m not going to lie; I’m sicker than I thought I was. I’m scared of how much further this is going to progress. I’ll be ok, it’s just going to take time. In the meantime, I could use all the prayers and good thoughts I could get.
All my love,