Two weeks after I stopped shopping at Amazon, I made the mistake of putting up one of my e-mail addresses on our family’s profile…and then promptly took it down a week later because all I was getting were vendor requests and one person who admitted after several back and forth exchanges to being a curiosity seeker about why I had written all of those reviews. As always, for the record, I was never a paid or commissioned reviewer. We actually bought all of that crap and so much more for ourselves. Over three years later, I still get a lot of e-mails to that address, and after somehow my primary e-mail address that is linked to our account landed in the hands of vendors, I get requests there too. Can’t tell you how thrilled I am about that one…not really.

That becomes pertinent only because I’m about to quote myself from a response I gave to someone requesting a review. Mostly I ignore the e-mails, sometimes I get snarky (I have people that write me just to mess with me and I know that so it doesn’t always bring out the best in me), and sometimes I’m a bit more sincere. My pre-New Year’s goal for self-improvement involved an appeal to embracing more of my better self and ignoring every e-mail I get from anyone claiming to want a review for Amazon. But, since I have already put these words out into the universe in another setting, for another purpose, I have tendered this brief explanation as to their source. The “vendor” in question was offering shoes for me to review for my next vacation.

“My dear, I have not been on the Amazon writing reviews for about two and a half years now. That is because I no longer shop there. If you have read enough of my reviews to label me as kind and generous, then you might know that I don’t have the kind of life that lets me go to the beach or out on vacation any time I want to…my life has become a snow globe, confined and often shaken up. Too many people in too many places and way too many professions have seen what is going on- both the good and the bad. When I speak publicly in any way that I can be identified by my son’s conditions, regardless of what name I go by, I make sure to always tell the truth, though sometimes I minimize the hardest parts out of sensitivity to the feelings of others.”

Indeed, anchored in the seemingly shallow depths of my snow globe, I have artfully trimmed and reshaped words, events, memories- painful experiences carved into something prettier, whirling around me with every shake and falling through my fingers like haunted dust. Many things are much harder than I write them to be, and some things, I would love to throw people under the bus in a more direct way on, but I feel like the greater good isn’t really served by that… so I focus on letting those things melt off of me. In order to stay sane, much less functioning at the level I need to have to make everything in our world work, I have to have as many mental health repair strategies, coping skills, and safety nets as I can built into my every day life.

Earlier this week, I was at a scheduled visit with a cardiologist who looks at electrical signals of the heart. Mine are totally fine, which is everything I was hoping for and quite frankly expecting. He said that usually in a woman my age they see POTS if a person is struggling with depression.

Truthfully, depression isn’t one of my many problems, mental health or otherwise. Decades ago, yes. And, I certainly did spend time working with a therapist once upon a long time ago. For me personally, my first meaningful long-term breakthrough in self-regulation with that came when I read “Learned Optimism,” by Martin Seligman many years ago. Some of you may recall I recommended a work by Ilardi on this blog some time ago, and I employ almost every strategy he recommends and have for quite some time. I really haven’t had a depressive episode in years.

That doesn’t mean I never have sad moments or fatalistic thoughts. When my heart rate first went up a few weeks ago, I could stand up and have it go straight to 150. Just sitting and talking with Randi put my heart rate in the mid 120’s. And I had a moment where I was laying next to Tony on his crash pad during those first couple of days and I found myself thinking, if this is going to be the rest of my life I don’t want it. That really is exactly what I thought, sadly. And then I immediately started working on repair strategies, which included noticing all of the ways my life could still be joyful and meaningful, thinking about the love my children and family would still have for me, and thinking about the things that might be possible to improve my circumstances. I really didn’t stay in that dark place for more than a few seconds, and nobody is pure sunshine all of the time.

First part of my plan was to ask my allergist if we could switch one of my antihistamines (which he agreed to do), and thankfully that did lower my heart rate about 25 bpm- but did not return things entirely to normal for me. Things are continuing to improve every day, but when this first started I was struggling with my mentation, experiencing dizziness when I walked, shortness of breath climbing just a few stairs, lightheadedness, and my hands turning gradually redder when I stood up. And, unfortunately, it doesn’t matter how calm I am…heart rate still goes up higher than it should when I stand regardless of what I am thinking or feeling. Really, an anxiolytic would be easier and cheaper than the doctors and the testing, so I wasn’t kidding when I said if I thought that would have fixed all of this it would have been my first stop.

My allergist, on the other hand, has given me the impression that he thinks that all of this may be caused by anxiety. I would like to note that the American College of Cardiology has stated that “Patients with POTS can often seem anxious in clinic. However, a misinterpretation of physical symptoms such as tachycardia and tremulousness might account for some of this apparent anxiety. When formally assessed, POTS patients did not have a higher incidence of major depressive disorder, anxiety disorder, or substance abuse problems than the general population.”

My allergist was also the person who first mentioned that he thought I might have POTS to me and that he felt I needed to follow up with a cardiologist. My PCP also felt it was good thing to do because she monitored my heart rate while we were having a seated conversation (I was around 119 bpm for that one) and felt like it would be a good idea just in case. If my husband hadn’t agreed with them, I honestly would have waited until I was weaned off all of the meds I was on, seen if there was still a problem, and only then gone in. But I especially don’t want my loved ones to worry, so appointments were made and testing is being done.

I want to be clear here: I think every provider involved is coming from the best place and trying to give the best possible care. I am also aware of the impact stress can have on illness, and my world is super high stress and there’s not a damn thing that could possibly change that right now. I am sure the stress doesn’t help anything health-wise, and in fact may exacerbate allergy flair-ups in particular for me. And we certainly have had one anxiety causing event after another, back to back with really no real break, for quite some time. I have to work very hard to manage all of that so that I can stay functional. I mediate, pre POTS and the sprained ankle I worked out every day, I do yoga, focus on doing a couple artistic things I really love (such as my makeup and playing piano) as a form of self-nurturance, and generally am just doing the best I can with situations I think most people would find incredibly stressful.

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For me, having so many questions up in the air about the possible food allergy component actually really has caused me to struggle more with anxiety, and I have to spend a lot of time focusing on breathing strategies and positive affirmations to keep myself calm before reintroducing something back into my diet. The RAST results (a blood test they can give to determine allergies that isn’t as reliable or accurate as other testing, but which is one of the few blood tests they can do to assess allergens if a person is on high levels of antihistamines as per my allergist) really didn’t give us much of anything definitive to help us know everything I might need to avoid. Allergies can change over time, and my last scratch testing was done nearly 20 years ago. And, one of the items we suspect may be behind any reaction I had can’t be assessed via RAST.

All of my previously known allergy titans came up as zeros on the RASTS…and these are things that have always tested at higher levels for me on scratch tests and in real life symptoms…so I’m not too sure how much I can trust the RAST results for anything right now. So I have been adding back one food at a time as cautiously as possible into my diet until we can scratch test me. You may be looking at this page of older allergy testing I put up and wondering why I didn’t immediately think what was going on was related to allergies. Well, because the initial facial swelling I had back in January was more on my right side, which has a bicuspid my dentist informed me would always be at higher risk for abscess because of how close a filling was to the blood supply. And sure enough, x-rays Jan. 18^th revealed a small area of infection and inflammation at the root. I ended up with a root canal the same day, but subsequent events persuaded me that probably I have a bit of both going on, because the next exposure and reaction came with neck hives…and I was even on a ton of antihistamines by then. So yep, I do indeed have higher food anxiety right now and that’s really not helpful.

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It also really doesn’t help me emotionally to have health care providers hear I have a disabled son and immediately give the impression that my mental health must be falling apart. It’s actually not. But it definitely takes a ton of work to keep from doing so in our circumstances. And, I would like to have someone ask me what I am doing to manage the stressors in my life before a provider decides whether or not mental health is the cause of a symptom.

You know, I do have to actively engage every day with a battle not to let the high stress events around me knock me down, and that isn’t always easy. Like everything else over here, I’m just doing the best I can, and I am always open to being shown ways I can do all of this even better.