A couple of months ago I was talking to Amara, who is the fabulous OT therapist that works with our son about how it isn’t always easy to get in to a doctor when I need a check-up, treatment or care. She told me that when it comes to my health, “you need to be careful.”

Sometimes I have to make decisions about what I can and truly can’t manage myself at home when it comes to my health related matters because having anyone be able to come in and take my place for a few hours isn’t a luxury that is often mine.

I love that my PCP now has Saturday hours, so that Andy can be home with Tony on a day off for him, and that’s what I took advantage of to check in with my doctor about some swelling I had been having for about six months on a lymph node in my throat around the time of that conversation with Amara. That is certainly nothing I should be managing by myself short of a recent illness (which I hadn’t had), and I would have been in about two months sooner, but we went through three near back-to-back quarantines around the time I figured it might be a good idea to have someone take a look. All of the lab work came back perfectly normal, and I walked away thinking I was probably struggling more than usual with my allergies and that I should get a full physical around March. Ha. Ha. Ha.

When I sprained my foot Jan 7 during a telehealth session with Tony’s new speech therapist (tripped and slipped), I figured that was something I could manage at home. I looked up guidelines from Harvard’s health education for recommended care and stretching guidelines and worked on managing that one myself. And it’s been going just fine. We were already dealing with a lot of appointments for Tony at that time because of his tooth and upcoming general anesthesia extraction, so for me it made more sense to work on handing that one at home.

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And then my tongue swelled up. And unfortunately after that, I can only say I was too busy making my own decisions for a few days about what I could or could not have been allergic to (sheer hubris) that I probably had at least four more encounters with the currently as yet unknown new allergen (not my brightest or best decision making moment I must say) because I was thinking certain items had always been safe for me and would probably always be safe for me. I also do have to note here that sometimes tongues swell for reasons other than allergies, and at that moment, none of those had been ruled out so I really wasn’t completely sold on the idea that something allergy related was going on. Despite my history of food-related allergic reactions. Ha. Ha. Ha.

And, I seemed to be reacting to some of the medications that I had been put on. I was honestly on multiple medications and with being re-exposed to whatever was possibly causing the reaction, for a three day period before I clamped down and truly stopped touching everything I had eaten the day the swelling started, I couldn’t really be sure what was or wasn’t a problem and neither could anybody treating me.

Yep. I know. Nobody needs to lecture me on that one. I’ve already dressed myself down and said it over and over again before I had to stop myself for unhealthy amounts of mental flogging.

A four hour challenge test that the allergist was kind enough to do as quickly as possible ruled out Prednisone, and I am truly grateful they made the time to do that. But before we even got to that magically happifying moment (because really, if you have a prednisone allergy and your tongue swells, that is no bueno), I was back in the ER for tachycardia and orthostatic hypotension. My EKG, labs, and a CT showed nothing abnormal or immediately life-threatening, so the ER doctor advised following up with my doctor.

Both that ER doc and my allergist seemed to wonder if this could be related to anxiety. My world is high stress and I never deny it. This blog gives only a narrow window into the picture I see. If you read everything I have written here and say to yourself “there could be so much going on that she’s not talking about,” then you’d be about right. I strive to keep it mostly professional and a safe place for others on these pages. But if I honestly thought an anxiolytic would fix all of this and make it go away and never happen again, I would have been at my doctor’s office January 18 or as soon as they could have squeezed me in asking for one. I was running with Tony for significant chunks of some of our walks (he likes to run, and yes I know I shouldn’t be, but again, if it can’t be me who will it be?) and climbing stairs without loosing my breath at the beginning of January, and certainly my world wasn’t low stress then either. Though certainly, these recent medical events haven’t had a positive effect on my mental health, but that’s for next week.

Right now, I’m more than making up for the fact that my PCP has only seen me like, twice in the past four years. I’ve now got a cardiologist, an allergist (haven’t seen one for fifteen years or so, though I probably should have been given what I know about my history there), and I am headed into more tests and another visit with a different heart related specialist. The first visit with the cardiologist, he told me he thinks that right now I might have developed POTS (postural orthostatic tachycardia syndrome) because my heart rate went up about 30 beats per minute from laying down to standing in his office, though a tilt table test for more official confirmation on that is still pending scheduling.

I asked him if it could be caused by the medications, because my elevated heart rate seemed to occur simultaneously, and it did go down about 25 beats per minute just by changing me off of one of them to a different medication. He said that he couldn’t possibly say at this point. You know, I find that to be a very wise answer, and I genuinely love that he’s not pre-diagnosing, but he’s waiting for additional tests. And, I’m hoping to be off of more medications by the time we get to more testing so we can rule that out as much as possible. Although, I’m honestly just hoping it is the medications. My body hasn’t been on pretty much any medication except occasional benadryl in several years, and I think my system might be very sensitive to this high a dosing of antihistamines, etc. right now. And it really doesn’t help that between the medications and the elevated heart rate when standing, sometimes I am mentally wandering through a bit of a fog storm. And, I can’t be scratch tested for my food allergies until they can safely get me off of all the antihistamines for three days.

All of this has made a serious dent in what I could and can do with Tony therapy wise right now. My heart rate has stabilized some, but it is still going up when I stand and it’s worse first thing in the morning. I have been able to resume doing once a day community safety as long as there’s no running (but I could probably safely jog for about a block if it was necessary to protect our son), and I am able to do most everything I need to do at home for Tony and our family as long as I take a few more rest breaks. I have looked up recommended guidelines for reconditioning my cardiovascular system to tolerate exercise and I am being as conservative as I can be until we get the echo and treadmill tests done. I monitor my oxygen stats to make sure they’re not going down with movement, and I still hear empty laughter from myself echoing through my head at how uneventful I was thinking this year was going to be for me health-wise back in December.

I know I’m not a specialist in either of these areas, but answers will be weeks or months coming, and I have to still find a way to live my life as safely as possible. And, it’s still my body, so any decision making process about care and management should still involve me and my input, though I am admittedly not always right about things. Nobody that I know of, myself included, likes to have their feedback about what is going on in and with their body brushed aside by a doctor simply because they themselves didn’t go to medical school. But I am trying to listen, and I am trying to “be careful.”