My original plan for this week had been a brief toe dive into our recent public therapy outings. After reading Denise’s comment on Hannah’s post last week, and after reflecting on a comment I myself made to someone else someplace else on-line this past week, I decided to keep everyone’s toes waiting at the edge of our therapy strategies pool just another week more.
The issue of inadequate appropriate representation for individuals with all types of disabilities in films and other forms of media is one I don’t just see in our country’s culture. Recently I was watching “El Faro De Las Orcas” on Netflix (my own recent health journey has caused me to adjust the balances of my own schedule to include slightly more rest and relaxation). While the movie overall is beautifully filmed and artistically emotive, as I watched the young actor portraying an individual with Autism, I felt like I wasn’t watching any version of Autism I had seen in real life.
As the credits started to roll across my phone, I read that the films events were loosely based on actual happenings, and then the first picture came up of the real-life inspiration for the Autistic character. I immediately noted in his eyes a depth of expression I felt was completely missing in the portrayal. Of course, as a side note, I became curious at this point and asked Google a few things, which led me to a book written by the other real life person one of the characters was based upon (Roberto Bubas). Perhaps soon I will begin to read that one, I am certainly interested to see what his reflections would be about the events that transpired if they are included.
Tony, smiling at something that happened in his movie.
I think far too often individuals with Autism are misrepresented as either lacking emotion or being incapable of love. I have been Tony’s mother now for nearly nine years, and never once have I ever doubted that he loved me. In fact, when I think of how Tony loves people, and he loves more than just me, I can only describe the depth of what he feels as a love so sincere. A love that may not show up in displays of cooperation, but a love that formed without reference to how I look or what groups I belong to.
He shows it in so many ways, from giving me surprise bear hug squeezes with a laughing grin to laying next to me much of the day for the first few days after I came home from my visit to the ER for an elevated heart rate. Even medicated for his ADHD that really isn’t something we see from him. But there he was, trying to engage with me at the level I was capable of on his crash pad (a small space between us of course, because he does not like to cuddle), giggling as I tickled him, his eyes filled with the confidence of one who loves and is loved in return.
Yeah, he may not outwardly show the same range of emotion as some people, but he definitely has and displays a number of stereotype busting feelings. And I certainly wish that more people could see him like I do. As a mother, I hope some day we can all move past the misunderstandings that lead to the creation of such caricatures of Autism or other disabilities in media portrayals.
Today I wanted to catch as many of his smiles and enjoyment as I could in pictures from our morning walk to share. This was the kind of glorious morning here where the balmy gaze of the sun showers one in peacefulness, and every gentle stroke of the breeze infused my spirit with germinating joy. We both were quite frankly loving it, but our little man is a bit mischievous, and most every time I tried to get a picture he would either turn away or give me the stink eye.
Starting to smile
tail end of a smile
stink eye for another picture 🙂
I have been having the same problem trying to get pictures of him working with his PT of the past several months, Miss Justine. He laughs and tries to hide for those. I managed to successfully catch a few of his smiles though, but given how precious and pleasant the experience was, I didn’t want to devote too much of my time to the attempts, so I have sprinkled in a couple pictures of him enjoying life from other days as well. Tony, my son, who like his sister, shows love so sincere.
Tony laughing and enjoying playing tickles with his papa, November 2020
Somewhere, a few months ago, I heard that the Australian pop star Sia was screenwriting and directing a film called “Music”. The film was supposedly about an autistic teenage girl who had to be taken care of by her sister after her grandmother passed from an unfortunate stroke. I saw the trailers and didn’t like what I saw, but nonetheless I tried to remain open minded. That of course became harder as more and more reviews came out affirming my worst fears; the movie was terrible, and even worse than the trailers showed. Normally in a review I would avoid spoiling a movie like I would avoid the plague, but I wouldn’t recommend this movie at all.
I’m going to be honest, watching this movie was difficult. I honestly wanted to just turn the TV off and walk away multiple times, and a movie has never really bothered me that much. Due to the poor portrayal of autism in this movie, much of the other glaring errors go unnoticed. I am planning on shining a new light on these, as well as bringing up a few of the autism-related issues in the film. After all, I have a sibling who is very close to the autistic character on this film, as far as the autism-spectrum goes anyway.
I’m going to start with what you’ve most likely heard of Sia for, her music career. She has remained very uncontroversial up until this point, with many adoring fans. You may know her from her song “Chandelier”, which was on the radio constantly a few years ago. With such a successful music career, you would think a film with, to quote the advertisement, “10 new Sia songs” would have a much better soundtrack. Many of the songs felt lacking, not that they were terrible or anything, just unimpressive. There were a couple good songs, but many just didn’t catch my interest, and I forgot about them 5 minutes after they played. Overall I can think of 3 songs I liked out of the 10, and while those songs were good that still means that 70% of the soundtrack was unable to captivate my interest.
As far as the acting goes, for most of the characters there aren’t any glaring issues. It’s fine given what they had to work with. The problems arise with Maddie Ziegler’s character, aka the character with autism. Now I’m not blaming her for this, the film started production when she was in her teens, and she probably didn’t have much of a choice of what character she acted. The most common critique of this film is that Sia did not actually get someone on that part of the autism spectrum to play the autistic character. Even less, she had someone neurotypical play the character. This becomes a problem when the acting for the autistic character seems like a parody, and it does. It seems fake, it seems like a stereotype. Looking into this issue I found out that Ziegler had brought these issues to Sia’s attention and expressed worries about playing the character, worries which Sia dismissed.
And now the plot. Oh, the plot. What was the plot? The plot shifts over and over again. First it’s about a sister who is struggling to take care of her autistic sibling, then it is about the sister struggling through rehab and trying not to relapse, then it’s a romance story between the sister and another character (Ebo, and don’t worry, we’ll get to the characters in a second). The plot is a weird, jumbled mess and switches randomly.
And now for the characters. This was probably one of the worst aspects of the film. The main character is a recovering drug addict, alcoholic, and drug dealer named Kazu. No, the person with autism isn’t the main character, and while I feel that the advertising and the title “Music” (the autistic character’s name) were misleading, it’s fine if the main character is the sibling. The problem is her character arc. For most of the movie she is a terrible person, she is rude and inconsiderate, and overall she’s just hard to connect with as a main character. She becomes a better person somewhere in the last third of the movie, and it seemed weird, sudden, and rushed. Her change came after getting drunk one night and injuring her nose after she fell on the sidewalk, but she seems to have been in worse situations and hasn’t changed, so why this? Knowing her character, when you put it in perspective it doesn’t seem as significant.
Of course, there’s Music, the girl with autism. She isn’t given much character and individuality, so there isn’t much to write about here. She is portrayed as having a wild imagination due to her autism, and is shown in the film like she is a mystical, strange, hidden visionary, and her thoughts portray themselves as, how do I describe it? Artsy- music video things? I’ll get to that later. If I’m being honest, I feel like she isn’t portrayed like a person. She’s just portrayed as “The Autism”, “The girl with Autism” etc.
Screenshot from Rolling Stone, weird music video thingy
The last significant character is Ebo, and immigrant from Africa. He isn’t a mean character, and there’s not really and glaring flaws with him. My biggest issue is that he is portrayed as the “Autism Whisperer” or something like that. He states overly-simplified facts about autism, and is treated like the magical autism know-it-all. This character is actually the one who introduces restraint into the movie.
For those who don’t know what restraint is, it is a technique that some have used to stop freak-outs from those with autism. The problem is that it does the exact opposite of helping. I’m just going to simplify why it doesn’t work:
What do you think will happen if you grab someone or tackle them to the ground in public, or in private?
Now what do you think would happen if that person was panicked and trying to fight back?
Now, what would happen if that person had a disability and couldn’t even understand what you were doing or why?
People get injured, there have been multiple people with autism killed from restraint. I can leave some links here, actually:
My point here is that a film should not promote such harmful practices that have lead to the deaths of those with autism. Of course, there’s other issues with the film, but they are more minor. There are strange music video sequences, where the characters wear strange clothes and dance to songs written and sometimes sung by Sia. In the film Sia has a cameo in which she tries to make herself look good to a cringe worthy level, with no subtlety. Overall, I would not recommend this film whatsoever. My final score is a 3/10. It really isn’t worth watching, and the few decent moments in the film are outnumbered by mediocre and bad ones.
Hannah (currently 14) this morning, photo by Hannah
To Hannah
My sweet daughter, my love has been, is, and always will be yours without any need to do anything, much less something that would necessitate a gratitude note. But I know I owe you a note all the same. For holding my hand in the middle of the night on the way to the ER, for texting me words of encouragement and jokes throughout the night, for helping me to do laundry for the next few days, for helping get your brother back down the stairs when climbing even half way up was sending my heart rate above 150: thank you. If I could give you anything, it would be a moment to feel the depth of what I feel internally when I think of you. Since that is beyond my power, I want you to know how much knowing you has been a gift and a blessing in my life, and how much I appreciate you for the tender caring you showed me that night.
To K.L. and her MA
I know these are difficult and scary times, so I wasn’t sure what to expect when I needed to ask permission to bring our little man in with me for an appointment this past month because there was nobody else who could sit with him. Words are not enough to express how grateful I am that you approved that, knowing as you did that Tony might struggle to keep his mask on his face the whole time. For your patience and understanding when he ripped the paper off the exam table and flung the pillow behind it, and for making me feel like it really was no big deal to have to clean up after that: thank you. Thank you for prioritizing my health and safety that way.
Tony kept is mask on the entire time we were waiting in the lobby (about 20 minutes), but he did struggle a bit once we were back in the exam room…
Hannah was the first person to show me a trailer for the movie “Music,” and as the mother of a beautiful nonverbal Autistic boy who uses AAC to communicate, I had a pretty strong visceral negative reaction to it. I’m not really going to delve into that here, because Hannah has asked my permission to post a review she is writing of that movie here on our family’s blog sometime soon. I also want to make it clear that I really love a lot of Sia’s music and I do not support any form of personal attack on her as an artist or a person. Sometimes I have gotten things wrong, and I know I would hope for patience and gentleness from those around me who were trying to educate me. That being said, I think it is important for each of us to hear and read the words of nonverbal Autistic individuals regarding these controversies. The title above has a link, I would encourage each of you to watch at least the short film, and if you have time perhaps read some of the article or essay links posted farther on down the page.
For some families working on the frontlines or anywhere in healthcare whether they had exposure to COVID patients over the past year or not, the applause was never there. I will not be citing any of our experiences over the past year here as I seek to keep this blog a safe place for everyone connected with our family and I know other individuals view these situations in a different light. I will say though that I have had to work very hard at healing some pains and minimizing the effects of the stressors created by these unwritten events. As I put it to one person recently, I have had to rip apart hay stacks daily to find and maintain any sort of inner peace or calm. I get there most days, but it takes a great deal of work in the face of constant legitimate and unavoidable stressors, emotional or otherwise.
And I have read the words of other individuals, one doctor’s op-ed in particular stuck out to me as he described watching the same neighbors that begged him not to get on the elevator with him clap and cheer for healthcare workers on their balconies every night. The effects of these attitudes aren’t just a devastating emotional pain for healthcare workers themselves, but the impact ripples over every member of their family like a potential mental health destroying tsunami.
If we turn the collective backs of our communities on the very people we are hoping to save us and take care of us, what does that say about our values as a society? How long can we expect an increasingly isolated community of healthcare providers to stay strong and be there for us if we turn our backs on them? Consistently, what the evidence has shown is that healthcare workers have not been fueling the spread of this virus- rather, it is private or public gatherings where protective equipment such as masks and adequate ventilation have been lacking.
We are placing an enormous burden on health care providers in our communities by refusing to modify our personal behaviors and pushing our local healthcare systems in some places to the brink of failure. A burden they may not continue to carry if the personal cost to them becomes too high. Some providers have already walked away from healthcare because of their experiences in this pandemic. As COVID seems likely to be with us for quite some time, I think we owe it to everyone we are hoping to be there to save us to educate ourselves about what is driving the continuing spread of this virus. To educate ourselves about the extensive training that is given to healthcare workers for how to effectively use protective equipment and reduce the risk of becoming infected.
As always, this past year my husband hasn’t brought home a single illness to our family, not so much as one- and none of our quarantines have been related to his job. Of course, that could change, as it could for any of us. Some of my readers have themselves already had this virus from another source or know plenty of other people who have been infected. A healthcare provider wasn’t the cause of infection in any of the cases I’m aware of. So, my hope is each of you could take the time to read that article (click on the title for a link), and then take the time to reach out and wrap your arms around someone you know who’s working in healthcare right now. They may have toughened up enough to get by without that, a person can indeed get mighty tough and find happiness with just a speck of sunshine in their lives if they are so inclined, but I bet they’d appreciate it all the same.
Screenshot of part of an article by Manuela Andreoni for the New York Times, discussing the impact of a new COVID strain on Brazil’s healthcare system.
The compression on these is so tight, just getting them on for the first time felt like a mini workout…put my heart rate at 114.
A few weeks ago, I resumed active participation once a day in community safety walks for Tony with both Casandra and Emily. We had told Tony that I couldn’t run yet, and he was trying his absolute best to control his urges to sprint ahead. During our first walk back with Emily, she asked me a question while Tony was taking a few moments rest, seated with his legs crossed on the sidewalk.
“How much do you think you give to your family?”
I thought about it, and said somewhere around 85-90%. She countered me, saying that as she saw it, I give 100% to those I love. I told her that I saw moments that I pickpocketed out of my daily responsibilities to play music, do my makeup, work out, watch a quick video while doing dishes, which is why I didn’t really see it as 100%. And for all of that, I felt like my family needs more than I am capable of giving. As I see it, there isn’t any way I can really fill every unmet need for this family.
I find a lot of fun and contentment in playing with my eyeshadows daily, even if I don’t often have the time to do anything incredibly artistic…
We talked about how she felt like I needed to take more time for myself, and I told her I don’t disagree with that in principal, we just don’t have the resources to make that possible. For years, I have burned every end of my candle I could fit a wick in and still watched it not be enough to give everyone I love the things that they need. I watch myself fail in some way every day, and I have learned to not flinch at my mistakes and shortcomings because they surround me with a greater familiarity lately than most of the people in my world.
Emily has worked more closely with me and spent more hours with our family than any other therapist. She sees and has seen things other people don’t see, and while I think sometimes she is generous in how she sees my failings in particular, I feel like her vision of me is one of the greatest gifts I have ever been given.
I have had no choice but to slow myself down for the time being. The week I noticed my standing heart rate had risen was a very difficult week for our family. All of Tony’s therapy was canceled and put on hold. I began doing what I could to slowly increase the time I was able to sit each of those first few days, when even sitting was raising my heart rate into the 120’s. Then I pushed to be standing and walking as much as I could before my heart rate went above 130, and it didn’t take much of that at first.
Once we switched out one of the antihistamines, things got a bit better, but it was still a delicate process of folding a few pieces of laundry and then laying down. Washing a few dishes and then laying down. Andy picked up community safety walks with Casandra and Emily, but his fear and worry for the future was a constant impetus on me to do more than pray fervently for improvements.
After the first cardiologist I saw indicated that my laying down to standing test indicated POTS, I did some reading and decided that very day I was going to be as proactive as I could about the cardio reconditioning and every other lifestyle change indicated as possibly being useful. I bought compression tights, and we raised the head of our bed 4.5 inches. I increased my salt intake. I planned my cardio progressions. I always prefer to start off with lifestyle changes, but in this case I had extra incentive because the medication he mentioned as being my only option since I now have a history of angioedema is nearly $600 a month with GoodRx, and it isn’t covered by our insurance.
We can’t afford that, so I was planning on having a discussion where I could hopefully make a strong enough case based on halter monitor data and my own tracking for why I felt like we could successfully start out with lifestyle changes based on where I was with my heart rate, which while still abnormal for me, fell short of going dangerously high for milder activities at that point. I can’t even tell you how thrilled I was to hear the cardiologist I saw last week tell me that my heart rate while laying down for the testing they did to examine my electrical signals was too low to allow me to be a good candidate for that particular medication.
I just looked at him and said, “Good, because I don’t want to be on it anyways.” And I don’t. But, what I have been doing takes time, and that time has to come at the expense of something, or in this case, someone. I have been leaving most of Tony’s hab hours I am responsible for unmet so that I could prioritize improving my current health condition, because I recognize that failing to address what is going on right now adequately would damage my ability to provide long term support to him and our family as a whole.
I have been varying the types of physical activity I do, carefully watching my heart rate and sprinkling in rests or increasing intensity as need be. I am taking two rest days a week. I put in a mix of activities that balance out floor based exercises with low intensity cardio. Yoga, Pilates, and Tai Chi. Interval training with my rower. My exercise bike. I track what my heart rate is doing, and as I have been noticing reductions in my standing heart rate or increased time before it spikes up during exercise, I have been methodically cranking up my intensity. I am doing everything I can to get more than six hours of sleep a night, but that is never guaranteed to me as our little man is still frequently awake in the night.
Only four episodes in, but enjoying it!
I have been taking more time to rest while reading or watching Netflix (currently working on “Madre solo hay dos”) or YouTube because I emotionally need a respite from the burn out pace of the crisis parade at this point. I even purchased an e-book that I started from Amazon, otherwise known as “the website that shall not be named” for the purposes of this blog, because I wanted to check out the entire book by this author and that is the only place it’s being sold. My issues are with the company’s polices and not the author, and when that is the case I am happy to increase my library accordingly.
I try to saturate every moment I can by listening to ASMR, positive affirmations, or something uplifting like Tercer Cielo while I’m doing my makeup. Luis Fonsi while doing laundry. Brene Brown’s podcast while tidying up or washing dishes. Shakira for reintroducing very light hand weights. Def Leppard while trying to increase my tolerance for climbing our stairs. My Andreas Vollenweider Pandora channel while rowing. Loreena McKennitt while I’m washing off my makeup and brushing my teeth. Secret Garden while trying to relax my mind before bed. Deuter to mediate. Whitesnake while I’m writing this post. The Weekend while I’m editing. If you’re expecting that list to make sense categorically, I recommend you refrain from trying. I like what I like, and that crosses a whole bunch of genres. But I do deeply feel the emotions of music, so right now I’m avoiding anything I like that has darker undertones.
Some of my medical stuff has already given us an unexpected opportunity to practice things in public, Tony here with me at my PCP’s office a couple weeks ago.
And this past week, I resumed community safety twice a week four days out of the week. And we once again were able to return to public therapy this past Saturday with Tony. I have slowly begun to work in more of Tony’s hab hours that I cover into that schedule. Some rest activities will have to be reduced to support that, because I really don’t have a way to be personally balanced in the manner some people see it without reducing our son’s opportunities for growth. And in his growth I see the only path to my personal freedom to anything that looks like regular rest in the future. So each day I turn to pick up any wick I can handle and set a match to it, knowing it still won’t be enough yet to fill my unmet needs, or his, or anybody’s. But maybe someday. Maybe.
My eyes may see everything in our snow globe, but they don’t put it all on display.
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.
My copy…
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.
Copying a Beautbean look that I loved…
hearing the beat of my own drum on this one.
Sometimes I just go basic, but doing my makeup helps me feel grounded and happier.
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.
This was the food portion of my 2002 scratch testing, the rating scale went from zero to four, four being the worst, and the arrows were for hives that were larger than the typical four rated hives.
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. 18th 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.
There were two surprises for me on the RAST…pineapple (explained why the good molecules pineapple exfoliant I bought was causing blisters) and chocolate…NOOOO!
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.
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.
Jan. 7
Jan 9
Today, doing pretty good, just a reminder the right heel looks that way because of a birth defect, so that’s normal for me.
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.
For every picture I’ve put into the universe with me in full makeup, I feel like I owe it one with my face swelling.
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.
My blood pressure and heart rate after standing without movement for two minutes, right before the decision was made to take me to the ER the second time. Andy’s hand.
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.
Me, today. Looking more like myself, still not feeling exactly like I was a couple months ago.
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.”
I don’t even know what to say about the past month, except that never had I expected most of it to happen the way that it did. Randi, I know your proverbial plate passed the point of overflowing long ago. And yet, without hesitation and with nothing but cheerful kindness you came over to sit with me and help out in the early stages of my current recovery process. You have continued to help sit with Tony for any of my medical appointments you can, and that alone is owed massive gratitude. But to have you call these times “playdates” with Tony…my heart cannot thank you enough. I have tried several times to write these sentences and make them something worthy of your kindness to us at this time, but every character I type as they line up falls short. Thank you.
NP S.T., FastMed
We both know you could have just given me the name of the allergist you recommended and left me to follow up on my own. The door to my exam room in the UC was cracked, and I heard what you said and the effort you went to in getting me an appointment with said allergist as quickly as possible before sending me off to the ER. For going above what was necessary (especially in our current hectic pandemic circumstances) you have my most sincere and heartfelt thanks.
A Quick Note
IV started in the ER, my arm, photo by Ariana
For me and our family, this has not been the easiest month, and I am still in the process of recovery and testing. I have not been able to discipline my mind to much of anything serious- Bridgerton and Emily in Paris certainly don’t count. While I have been enjoying them, I certainly can’t recommend those to my more religious loved ones, and some die-hard Jane Austin enthusiasts or Regency history buffs definitely might take a little bit of an issue with some of the liberties taken by Bridgerton’s representation of that period.
Tony, waiting to have his vitals taken on Jan 5, Photo by Ariana
I started last month with an amazing high point for me, though it would look like a small thing to many. Our son, for the first time outside of general anesthesia or sedation, successfully tolerated a blood pressure check at his doctor’s office. I am trying to look more at those kinds of small happy moments, and to the joy and love I find in my family as I am walking through and feeling the thick drag of heavier circumstances. But I’m still not feeling quite like reading anything in my spare time that I could get too emotional about or that would require me to muster up a credible critical analysis right now, and I sadly must ask each of you to bear with me as I work to reorder my time and thinking around my current circumstances. So, if some of what I recommend to read, watch, or listen to isn’t thematically consistent with my usual content for the next couple of months, it is still what I have been enjoying as I work my way through some things.
I am, however, going to give one brief recommendation for this post that is on point with what I typically discuss, and that is an ABC 15 news article, linked below:
Some of you who are local may have already seen this, but I think it is important for each of us to continue to be mindful of the ways the ongoing pandemic could be affecting each and every member of our community. The challenges which arise can be very different depending on each individual’s needs, so I view this article really as a general reminder for the importance of ongoing mindfulness in these matters.
Sometimes life can wrap itself around me and suck upon any eloquence I had until only crusty cracks of effort remain. The past two weeks have certainly left me feeling artistically desiccated and a bit more to the point. So let’s get more briefly to it…
This was me, the morning I wrote my last post. Looking and feeling pretty darn healthy. Except for the previously mentioned purple ankle sprain. 😉
This is me the next day, the second picture was me moments before I was given dexamethasone to bring down tongue and face swelling for a suspected allergic reaction at a local urgent care. About half an hour after that they sent me off to one of our local ER’s, where the attending MD told me that I had now joined the ranks of those needing to carry an EpiPen with me at all times.
The past two weeks have been a long, sometimes scary ride for me that isn’t anywhere near over yet. I have been in the ER twice, and I have probably annoyed the heck out of at least one doctor. Not what I aim for, but sometimes I have a gift without even trying when it comes to that. Just sayin.
I also found it’s an expensive ride. Our portion of the ER bills, doctor’s office visits, and filling one prescription after another was quite a lot- including for the EpiPen. Which, costs an astonishing $600, compared to the mere dollars it allegedly costs to manufacture.
Because I’m tired and still dealing with so much from this, I am going to be blunt about this: This markup is absolutely indefensible and obscene. For those who need an EpiPen, it is a matter of life and death. I am not opposed to a reasonable profit, but I can see no justification for a price point that high on this. Mylan, SHAME. ON. YOU.
I rather suspect they have heard similar sentiments before, and as the pricing remains ridiculous, I doubt anything I alone add onto that pile of previous criticisms would lead to changes. Like many people, I had heard of the price gouging on this item, but I was busy with so many things and I have never publicly said anything. We all are busy that way. But unless more of us start objecting to this level of profiteering, far too many people will be priced out of being able to carry something like this with them that they need to survive.
Now I, like many people, have health insurance. Blue Cross Blue Shield, specifically, and they are typically one of the better insurance providers. And, like many insurance providers, they don’t cover the cost of an EpiPen.
I do understand insurance companies aren’t philanthropic organizations, they also exist to turn a profit. But it’s honestly not a good look when you don’t allow benefit coverage of any kind for this type of item. We’re not talking about something cosmetic here, after all. Even covering a portion of the EpiPen, or putting a benefit limit of covering one every year or two is a much better look that still allows for some sort of spending cap. Blue Cross Blue Shield, SHAME. ON. YOU.
One entity that came out looking a bit better in this situation was GoodRx, which had a coupon allowing us to purchase my EpiPen for $94.
My words of disapproval alone will never change this situation. I know many of you have busy lives, and many of us have causes that are near our hearts and take up so much time. But next time this issue becomes a matter for public discourse, my hope is that each of us will raise our voices in condemnation of these types of pricing practices. You may not think it will matter to you personally, but just like I was, you could be wrong. And it may still matter to someone else you love, or someone you could love if only you had the chance to meet or know them better. <3
An alternate title to this might be “welcome to the sometimes very scary world of special needs dentistry.” When you have a kiddo who needs sedation or anesthesia, even outside of a pandemic, you can wait months to get a cavity repaired. Even when a bigger chunk of the tooth is gone (as we encountered in Tony’s mouth on Dec. 27Th, 2020) the best case scenario for receiving treatment or repair is often at least about a month away. For any typically functioning individual, it would have probably been fixed the day of his very first appointment regarding this matter (if not within a day or two of that), and it is incredibly heartbreaking that the resources and relatively few specialists capable of handing individuals with this level of need are stretched so thinly that lower functioning disabled individuals are put through weeks of pain and the risk of complications that can become life-threatening.
Dec 27, 2020, day tooth damage discovered
Jan 11, 2021, early stages of an abscess
Jan 14, 2021, tooth continuing to decay
A few days ago, our little man began developing an abscess, and no, that black stuff coming out of the hole in his tooth isn’t food. Tony has been tolerating 90 seconds of tooth brushing two times a day or more for quite some time now, and I am cleaning out whatever food I can out of that hole every time he eats. That tooth is literally rotting out of his head at this point.
Jan 9, 2021, my foot two days after initial injury after most of swelling had gone down. All photos by Ariana.
His procedure date was moved up two days, and he’s now on antibiotics, but that was the best that can be done…and if his condition deteriorates, we have to head into the ER. We’re five days out from his procedure. And, because sometimes this is just the way life goes, I sprained my left ankle last Thursday, and it’s currently still displaying one of the few types of purple I really don’t like to see on my body. If it were eye shadow that same color-fine. But this? No thanks! And yet, here I am just the same.
My hands are full because our little man is having a hard time with all of this, and I can barely focus on writing even this much. In order to better care for Tony, Hannah, Bandit, and myself, I will be taking time off from writing for our blog for the next two weeks. Thank you for your patience and understanding. <3 Ariana
Bandit, his fur is starting to grow back from the shaved IV site, photo by Ariana
To the ASPCA Animal Poison Control staff and toxicologist, the Blue Pearl Emergency Animal Hospital, and Dr. M with the Fabulous staff at our Vet’s office:
Thank you. Hannah’s precious Bandit, mischievous and usually very loving, doesn’t thank you. He’s not fond of vets, hospitalizations, medicines, tests, or anything like them- so he’s still very displeased with each and every one of you. But I am beyond grateful, that he is even here to attitudinally impress each of us with his ongoing displeasure for all live-preserving services rendered is a gift beyond words. And I thank everyone involved for the roles that they played in bringing this happiest of outcomes to pass.
To Chris
Thank you for everything you contributed to Tony’s speech programs over the past two years. I have always deeply appreciated your professionalism, as well as your patience with him and with me. You have been a trooper, slogging through rain and anything else we thought might be helpful to try as we have worked to expand Tony’s communication skills. We support you in doing whatever you need on your own path forward, but know that you will be missed and we wish you the very best.
Chris and Tony, March 2020, working on describing things during community safety. Photos by Ariana
This talk has been on my mind for some time, but I feel in light of Wednesday’s horrific and deeply concerning events in our nation’s capital, Mr. Davis’ inspiring message is something that we should all do our very best to internalize and apply. In this talk, he outlines the importance of respectful communication with others who think differently from us as he details the journey of how he, as an African-American, came to have an enduring friendship with a KKK leader. A friendship that would ultimately see the day where this former KKK leader resigned his membership and gave Mr. Davis his ceremonial robes. In a world where so many are becoming increasingly intolerant of respectful interaction with anyone who doesn’t share and echo their own personal beliefs, I think Mr. Davis’ example shows a better way forward for us all. You can click on the title of his talk above for a link.
Some Doing To Consider
This past week I read a news article from CNN detailing the rise of mental health crises during the pandemic. Some of the people we know and love may be silently suffering and struggling with weights that have only been increased by the deepening pandemic. I know I personally have struggled significantly with anxiety in ways I haven’t for decades, and I am sure I cannot be the only one out there experiencing that. I would ask each of you to reach out to someone you haven’t heard from in a while and have a friendly conversation with them about anything- could be something happier than current events, could be whatever they need you to listen to about how the current events are impacting them. Whatever each of us are going through, the burdens often feel lighter if we help lift each other up a bit along the way.
