Screenshot of recent findings for my MRI’s, screenshots & photos by Ariana
If only it were going to come with the “low, low price of just $19.95.” OK, so you can totally tell I saw a few too many infomercials in the ’80’s. I wish I could say some of this came as a complete surprise, but it didn’t. My foot slipped carrying an air purifier down the stairs in the fall of 2020, and instead of just letting the purifier go and taking a more protective body position, I curled around the appliance and cracked my back and then my head on the four bottom stairs. Came with a concussion and lower back pain ever since.
I’m not really going to speculate on what the treatment plan for this will be here, I still haven’t had my appointment to speak with the current treating neurologist (who is likely going to need to refer me to the type of surgeon who could comment on that). I can tell you if you hit Google up for a search on it you’ll once again find many of the symptoms I’m currently dealing with. And if you dig a little deeper, it recommends surgery for individuals who experience some of the symptoms I am having. The good news is it’s something that can be fixed, the trickier part will be navigating anything with a hospital stay or lengthier recovery time.
I spoke with my therapist last week, and she said she was going to look up stuff specifically designed to address medical trauma. Because the one thing I can for sure predict is that more personal doctor’s appointments will be in my near future. In the mean time, I’m going to celebrate Tony’s first week on the bus, and share some screenshots of one of the mental health supporting activities I am currently engaged in (puzzle apps). I have loved puzzles since I was a little girl, and while I find the ads on these apps annoying, I like the lack of cardboard dust and the variety of puzzles. Currently I’m crushing through as many Halloween ones as I can to celebrate the season. Take good care of yourselves, Much love, Ari
“Spooky Hour,” Attributed to Erina Ren. Other puzzle creators not listed on the app used.
Somedays I love my make up, sometimes it just doesn’t go as planned (like today, the first pic). Sometimes though, the view we see looks distorted because we’re not seeing or believing the full picture. Photos, videos, and screenshots by Ariana.
It’s all a matter of perspective, what lens or experiences a person is looking through. One person’s crazy is another person’s completely understandable if you know their full story. If you believe their full story, because some people in telling their truths find there’s a skeptic on every corner. But, let’s assume that you do believe those stories here. I’m not saying mine is a gullible audience, but rather an open minded one.
Once upon a time in my own personal healthcare journey, I experienced a series of unfortunate mistakes by several doctors across differing specialties within a five year span. The worst of them was from the OB group I was seeing for my pregnancy and delivery with Hannah. I think I had three ER visits starting the day they discharged me from the hospital (fluid retention and swelling that had squeezed shut my urethra on visit 1, asthma on visit 2, and a temperature difference in my right calf on visit 3). The ER doctor I saw on visit 3 felt both of my legs and expressed some concern. My right leg had a noticeable temp difference. They didn’t have a tech available to do the necessary scans at the hour I showed up, so he ordered I be given a shot of blood thinner and told me to be back at the hospital for scanning first thing in the morning. I was told that the problem was on my arterial side and to see my primary care for recommendations on specialists.
Shortly after that visit, something emotional in me just snapped. Literally snapped. I had read portions of a study before giving birth about the efficacy of certain doses of aspirin for blood clots and decided that I felt emotionally safer in every way treating myself than in going to the specialist they referred me to. I took the recommended dose of aspirin until the temperature difference vanished, and spent the better part of the next year or two avoiding doctors unless I had no choice. A practitioner at my PCP asked what had happened for the follow up on that particular issue during one of my appearances, so I told him and he just laughed. Pretty sure his thoughts might have gone something alone the line of “she’s cr-a-a-a-a-zy!” To kinda quote Olaf.
OK, currently, I don’t recommend this. I do not. I was extremely lucky that things didn’t go very wrong without someone monitoring and supervising that situation. What I need you to bear in mind is what the bottom part of this screen shot below can mean:
This PTSD diagnosis was given based on experiences that happened long before I was a pregnant woman in kidney failure because a provider refused to check what medically could be causing 5-6 pounds a day of fluid retention, telling me I was “probably just cheating on my diet.” But the gift that carries forward is that I’m far more likely to have, as Google’s AI says, “a higher increase in symptoms” with any fresh trauma- medical or otherwise. And, if we’re having an honest moment, I still struggle to see doctors. For the last maybe 12 years or so I mostly only show up if I have no choice (as in something has gone wrong enough I feel it’s safest to do so). I wasn’t even showing up for regular physicals. My one concession to trying to work through that the past couple years was showing up more regularly for those, and I don’t skip appointments with my allergist or dentist any more. Sadly, I’d honestly still almost (but not quite) rather chop off a toe than show up to a doctor’s office.
Even without trauma, the one thing I would want medical providers to remember when they see patients is the impact medications can have on emotions that a patient is having or presenting with at the time of any given visit. During the period of time my PCP was trying Ropinirole to see if it would help some of my recent symptoms, I spent more than one afternoon crying for no good reason, and others with heightened panic responses until it was totally out of my system. This is a medication that can cause fear and nervousness. Many patients who show up for healthcare could be on those types of things, and I feel like they deserve to be seen compassionately in the full context of the symptoms their medications could be causing, heightening, or exacerbating. I was put on Ropinirole to try and manage spasms and twitches such as these, sometimes it feels like they just roll through multiple muscles in one area. On the second video, you need to watch the calf at the top of the screen, not the bottom.
For me, aside from involuntary movements, the muscle spasms and twitches were the thing that were interfering with my sleep (they are most active when I am either sitting or laying down), and it’s something that at present no medication has fully stopped (but the current combo I’m on is doing better than any of the previous ones). I was wondering why until some recent labs came back.
Screenshot of the out-of-range findings on labs ordered by a neurologist involved in my care.
Screenshot from “Vitamin B6 Toxicity” by Adam Hemminger and Brandon Wills, taken from NIH National Library of Medicine.
Now, I’m not a doctor. But…many of my symptoms that I was experiencing are on that list. I’m not really going to get into the blood sugar numbers. I’ve known my blood sugar can dip below normal after meals since a PCP in my 20’s mentioned a blood glucose level that came back below normal on a lab test I did about an hour after eating a grilled cheese sandwich and chugging down a fully sugared Coke. Nobody’s ever ordered the type of testing the most recent neurologist did to examine how my body processes sugar outside of pregnancy, but this lab finding wasn’t completely surprising to me and I already tend to eat in a manner that reflects that awareness. However, I was reducing calories over the summer to loose weight, and it’s possible that might have not helped me sleep better at night. But back to the B6, I was continuing to take my supplements (I’m a vegetarian, I’ve supplemented for years) and I wonder how much that was impacting anybody’s ability to stop the spasms and twitches. I just don’t know.
I’m sharing this before any of my upcoming doctor’s follow ups because I am confident some of my family and loved ones are taking multivitamins or other supplements with B vitamins. Apparently Vitamin B toxicity can happen even without high supplement doses if a person takes supplements containing B vitamins for a number of years, which I did (a B complex in addition to my multivitamin). And if you are too, maybe this is a heads up worth thinking about for you personally.
In the mean time, life is giving me all sorts of unplanned exposure therapy to doctor’s office visits. In the midst of all of that, we are still doing school and therapy the best we can. As I head off wishing you a wonderful week, these are some recent pics from some of what we are doing.
Bubble time after a recent fire drill in the sensory room….
The first picture with the traced items is from therapy, the second from school. You can see that he struggles to stop or inhibit movements but he’s showing a lot of growth in his ability to motor plan these types of movements.
Screenshot, the hot take by Google’s AI, screenshots by Ariana
Perhaps it’s fruitless to disagree or discuss this with Google’s AI, but in undertaking to comment on this statement here I am doing so as an acknowledgement that the above is a view held by many, including those who can and do work in the “medical” side of healthcare. And I must also acknowledge that I feel a higher level of discomfort when a medical provider asks me something like “are you sure anxiety can’t be causing your symptoms?”
First, it is often made after discovering I either have a kiddo with significant disabilities or a very high stress life (with the assumption being that I must have poorly controlled mental health related issues because of either). And second, anyone who has ever worked in healthcare knows that the moment a provider even thinks your symptoms may be caused by any sort of mental health condition, workups can become half-hearted and risk missing actual physical disease that needs treatment (with an added bonus that these providers often seem to think such patients are a waste of their time, which can be felt in the bedside manner and other interactions, all of which can exacerbate any existing mental health concerns or even create them).
I think if one were to look at the medical literature, it would bear out that high stress or any sort of “mental” health related concern can cause very real “physical” health problems, such as heart attacks. But aside from that, the mind is part of the body. What happens to any one person is complicated. The interplay between so many components of the physical health can impact the what goes on in the mind and vice versa.
Regardless, one of the greatest joys of my life has been to stand beside my children in whatever manner was required and the assumption that having a kiddo with a disability equates to having not only mental health needs but inadequately treated ones feels upsetting, dismissive, and rests on an a lot of assumptions based perhaps on how they themselves or even someone other than me might feel in my circumstances. But I do also think it’s important to acknowledge that the stress of having “physical” illness as a caregiver can lead to mental health related concerns without active and mindful management.
That is just my hot take. And now, I’m off to watch a movie with my family.
This is my waking and standing and moving heart rate spike on a day where the sleep wasn’t enough this past month because of some other ongoing symptoms and my POTS was grumpy. I spent most of the day resting, my standing heart rate before moving is around 149 until I start moving on days like these when I first get up. Photos and screenshots by Ariana
The biggest challenge for me as a mother, the one-to-one aide for our son Tony, and his hab therapist has been keeping me functional while neurological evaluations and diagnostics are happening. What has been happening with involuntary movements and muscle twitches has been impacting my sleep when the medication balance isn’t working, and when that happens…it’s an ugly day with POTS that is otherwise pretty well managed by adequate sleep and lifestyle modifications. The gabapentin, for whatever reason, as I told staff at my cardiologist’s office a couple weeks ago, seems to improve overall POTS symptoms and management. But the heroes of keeping me stable at this time are without a doubt are the providers from the practice that has managed my primary care for the past 18 years.
I would very much like to express my gratitude in particular to A.N., S.A., and H.H. for their contributions to keeping me mostly functional. On the days where things have been going well, I’ve been present in school, we’ve been doing therapy, I’m getting the makeup on, and in general, just trying to “Vivir Mi Vida,” pero sin mucho reir algunas dias, desafortunadamente. I live for the hope that there will be more of that some day soon. Until then, Tony’s learning how to fold laundry independently in hab, he’s staying the full day at school, and soon we’ll be working on getting him used to riding a school bus. To the caring and supportive team and my primary care: thank you for making these things possible this past month.
in sensory room at his school
Next week’s post will also be a gratitude related post, maybe by then I’ll have a book or two I want to add on and recommend. Until then, take good care of yourselves and do the happiest living and dancing of your own that you can.
A view through my eyes, as seen yesterday. Photo by Ariana
I have been going to the same healthcare clinic for the past 18 years for all of my primary care needs. Because I had a situation go not so bueno with my ObGyn during my pregnancy and delivery with Hannah, I struggled for a while to want to go in and see any healthcare provider, so I have a record of tending to go in only when I need to (as in, something has definitely gone wrong for me to show up). The past couple years, I have been trying to improve and actually show up consistently for yearly physicals.
My bloodwork results, by the way, are pristine.
I was in last week for a follow up with the provider who has become involved in my care since my most recent onset of symptoms. He expressed concern about how far out the MRI’s are. That my friends, is US healthcare. There is a provider that could have gotten me in sooner for the MRI’s, but they won’t take our insurance. That’s the hill the best possible healthcare outcomes die on for many people in this country. And, often, even if a provider does take their insurance, they can wait months or years to see the appropriate specialist or be put on the most efficacious treatments because of this perhaps.
I know the first neurologist a provider from my PCP tried to get me into is booked as far out as their schedule is open in their system, which is into the spring of next year. This Thursday I’m scheduled to see a neurological NP, and even at that, I feel lucky. But if the diagnostic process ends up showing something that immediate treatment would have been best for ?
I try not to think about it, but I can’t remove the awareness from my mind.
All I can try to do is see the positives. Like, yesterday, I noticed that on the Gabapentin, my walking heart rate is in the 70s or 80s. It hasn’t been that way since I developed POTS. Now, depending on what the diagnostics find, I may need to be on it anyways, but if not, I may ask to stay on it because they’ve not been able to medicate me with anything that could help with the POTS previously. My resting heart rate is too low for Corlanor, and I can’t do BETA blockers because I need to be able to use epi. I don’t seem to respond well to SSRI’s, which sometimes in small doses can help with POTS. And so my functionality and exercise options, while not bad for a person with POTS because I dialed in every lifestyle support I could for the condition, would definitely be improved by this medication from everything I’ve seen the past few days.
So, it’s a positive perhaps. My system seems to be tolerating this med quite well, I don’t actually find it to be sedating. Outside of that, all I can do is be thankful for what I can still do. I am focused on meditating more, listening to songs I love (right now “Loveo,” “Zona De Riesgo,” “Please, Please, Please,” and “Greenlight” are some of my favorites) because I feel like controlling my stress responses is going to be the next best thing I can do right now while slogging through the diagnostic process. I prefer not to listen to anything with darker overtones right now because it just tanks the spirits too much.
Doesn’t mean I don’t have my slip ups there. I started listening to and binge singing in my head “Don’t Know What You Got (Till It’s Gone)” before I caught myself and redirected to different songs because it just wasn’t helping to focus on how much I wasn’t appreciating how easy I had it when Mast Cell Activation Syndrome and POTS were my only challenges. Better to focus on the time I have to enjoy with loved ones or other activities as I can. And the hope that whatever this is can be managed in a way that won’t be significantly life altering.
Better to see the positives, because the negatives might not be changeable and they sure can suck a whole lot more if you look at them too long.
Me, This past Saturday, after getting ready for breakfast with my good friend Gena. Photos and Video by Ariana
I have certainly written this before somewhere buried deep in these pages: pictures can tell so many lies. Perhaps unwittingly (even if they are unedited as this one is), but so it remains. But, we’re not getting into that just yet.
Perhaps you may be wondering if I have a confirmed Autism diagnosis yet. And, the answer is yes. Also PTSD. But ADHD? …No. I have above normal impulsivity and hyperactivity, but my focus and attention are within normal parameters.
So are we going to talk about that Autism diagnosis? Right now? Not really. We make way to big a deal about some things I am thinking in our communities, this being one of them given I am a 48 year old woman whose been married for 21 years, has friends, has had jobs, and holds a degree.
But let’s go back to that picture. Let’s just say, I’ve got a lot going on. This is video taken from later that morning:
This is a toned down version of what tardive dyskinesia can look like, and it’s the dramatically improved version of me after two days of Gabapentin. On Tuesday, I was in the ER with spasms and twitches over my entire body that were causing considerable involuntary movement without any sort of pause for more than 8 hours. I started taking video of break through episodes on Saturday after Gena recommended it, I was honestly so overwhelmed with the totality of my circumstances that I didn’t think of it, though a host of providers all over the ER and my primary care certainly saw much more extensive episodes than these from me over the past week.
Do we know for sure what’s causing it? No. A diagnostic process is ongoing and I’d rather not comment any further until that process is completed. So all we can say about the “what else” at this point is that mysteries abound, but that I am doing everything I can to say positive. I would especially like to thank and acknowledge Mr. A.N. from my primary care for helping me get to that spot on Thursday.
That being said, I have returned to doing therapy for now and I plan on returning to school tomorrow. I may not write as much for a while. There are just a few moments from the past couple of days in pictures following below, some of a personal nature, mostly of therapy because this hasn’t stopped me from returning to doing everything I can to help and support the members of my family. And, I would especially like to thank my husband for his love and support, and my sister for showering me with self-care items that have already brightened many a moment. Much love, Ari
A selfie from a text exchange with my sister, who sent Petey, the weighted emotional care friend I am holding as part of a care package for what is going on. We were discussing his new found passion for watching certain shows with me, but how I needed to use an earbud to protect his delicate ears from the salty vocabulary in “Perfil Falso” on Netflix. He’s already had many adventures we speculate, including raiding my jewelry for his drag show aspirations and returning home hungover this morning. He’s a busy panda, but of course I support all his artistic endeavors as long as he returns every last piece of my jewelry, lol.
Yesterday, Tony and I returning to therapy after a week off. He’s actually taller than me now, but he slumped down for this pic…he only took this picture with me because he loves me a whole lot 😉
Skills we’ve been working on in hab, for cutting with a butter knife and stabbing with a fork and putting items in a bag. This is from yesterday.
Tony, using a glue stick and completing a worksheet with me during summer school. He needed help putting the letters in the correct order at the beginning of the worksheet, but was placing them more independently towards the end, photos by Ariana
This isn’t a content heavy post, just a quick check in. We may have been silent here, but we’ve been busy. I’ve started the evaluations mentioned in last post, we did summer school with Tony, and we’re still working on therapy goals. Currently, he’s mastered tolerance of headphones with sound, so we’ve started prep work to help him use that to move into environments like a local UU congregation I would like to go to (that involves practicing sitting here at home for now with his headphones connected to his kindle while the livestreams play). He’s started the regular school year schedule this past week and he’s doing amazing. And for now, I’m still taking a break from blogging. Take good care of yourselves. Much love, <3 Ari
Tony using his headphones with sound at a recent doctor’s visit and today practicing during the UU livestream. He’s officially taller than me now!
Hi, my name is Ariana Thude, and I am likely an undiagnosed Aspie. I probably also have undiagnosed ADHD, which has been masked by a combination of things throughout the years, including copious amounts of caffeine and higher levels of exercise. I have had signs and symptoms for both my whole life, they have just never been confirmed by a medical provider. I grew up in a home where abuse and neglect were themes I’d rather not discuss in this post, but that, my academic skill set, and a combination of how well my conditions were masked allowed me to fly through to adulthood without receiving any sort of diagnosis or even concern one was needed.
The first time I realized Autism was a possibility in our family was when I was watching my beautiful daughter Hannah (who is officially diagnosed at this point) flap, toe walk, and be hyper verbal before age three…traits that I myself did not possess to that degree as a child. Her story is not something I speak much about here to respect her wishes, though she has given me permission to say that much.
I didn’t really connect the dots on my own childhood and conditions until I was going through the evaluation paperwork for Tony’s first consultation with Dr. Kessler.
I chose to remain undiagnosed because I felt confident that the needs of my child would require a high level of advocation to get his needs met, and I was concerned that my having those conditions known or be public could change the perception of critical stakeholders about my ability to adequately and competently speak to the needs of my child. The truth is, Tony and I are more alike than most people have ever realized, though his needs are more extensive. My awareness of those similarities from my own unique perspective has been a guiding force behind some of the times I recommended something different from one of his therapy providers. And I also must acknowledge that some of my strategies that I used for my own therapy work were Divinely Inspired. And I’m grateful for those inspirations.
Now, our son is in school and doing better and better every day. Before I say another word about myself, I want to acknowledge the contributions of others that have led to this. First, and foremost, Andy whose support has been more significant in areas outside of therapy, and I have failed to acknowledge it as often as I should, which I deeply regret, but that support made everything I have done possible. Andy, thank you for all of the things you have done to love and support our family <3 I am grateful for your service to us.
I also need to acknowledge that to help Tony I have used ideas from books I have read, plus implemented the strategies of therapists like Whitney, Emily, our former ABA providers, his current ABA providers, Amara, Justine, Jenny, Suzanne and the entire past/present NMTSA team, every therapist, every case manager, last year’s educational team, the IEP team, his educational advocate, and support services coordinator who has worked with our family.
For me, I was not interested in masking or passing. I was interested in protecting and helping my child. And I think that for me to have felt the pressure that my ideas or my words or my voice might be discounted in a way that could harm his opportunity to access the level of support he requires says something I would want others to think about as regards to how much the conversation about Autism needs to change. I started writing here because I could see that a conversation about individuals with the level of need Tony has was important to start. He’s accomplished so much more than some thought he could, and it is my intention that others can look at that and see more hope for a wider array of people.
What I needed to feel safe enough to talk about all of this was Tony doing well enough in school that other people could see his worth, see he could grow, see that I was capable of standing with him in his needs. Now that this has happened, I am going to be taking time off writing here so that I can be officially diagnosed, work through a possible trial and error process for ADHD meds and an anxiolytic, and get a therapist to help me try and unpack how all of the things I have acknowledged here have impacted me and work my way through it. In the mean time, I remain grateful for the help and support our family has received and continues to receive. Much love, Ari
A few months back, they replaced our local swirly slide with the above…and Tony’s been afraid to go down it because the decline angle comes with increased sliding speed, which is harder for him with his sensory differences. This past week, he worked up the courage and found a way that worked for him to give it a try, and he’s been happily sliding down it ever since. Photos by Ariana.
Dr. Anna De Ocampo
I cried when I got the phone call a few months ago that you had left the previous practice you had been working with (not so happy tears). Our experience working with you had been nothing but wonderful since Tony’s care was transferred to you after Dr. Kessler retired. While we are also deeply grateful to the physician who helped support his needs over the past couple of months, the level of understanding you have of our son’s case cannot be gained over a single visit and is irreplaceable in my opinion for a kiddo whose case can be so complicated. Undeniably you have always provided him top notch care, and you have been there to support any need our family had, whether it was to help secure him necessary services, quickly change a medication that wasn’t working, or document what was needed for his IEP team, so I cried again (much happier tears this time) when your new practice popped up on-line and I was able to transfer his care back into your hands.
Sometimes it is easy to make too many decisions for a kiddo with the level of needs our son has, and in trying to be sensitive to that, I asked him recently if he wanted to be able to go back to seeing you as his developmental pediatrician. I only got one word from him pressed twice on his speech device: “yes.” So more than being my choice for supporting his ongoing developmental needs, you are his also. We are deeply grateful for everything you have done to promote the best outcomes possible for him over the past six years. Thank you <3
A Quick Note
Also from this past week: this is the first time he’s been willing to try a type of sucker other than his beloved Dum Dums, it’s from a Valentine’s care bag given to him by his teacher this spring. The smile says it all.
Y’all, I remain burned out and tired. As I look to the months ahead, we are facing the very real possibility that as Tony reaches the milestone of attending a full day of school every day, there will not be an RBT available to support his ongoing ABA needs after school once we reach October. Which means, in practical terms, that I personally am going to have to provide any of those additional therapy supports he needs after school until such a time (if ever, because the most honest reality is this is not too different from trying to find a unicorn on our end of town) as one can be located. His current BCBA and ABA team have been nothing short of wonderful to work with, I love their programming, so it’s a loss on more level than one. That aside, my schedule is going to remain difficult to balance and I’m going to be spending some time thinking about how I want to format my posts here to best support my personal needs during that period. I don’t even have much time for personal reading right now, and this month’s recommendations are going to reflect that, so it’s possible I may not be recommending as much reading for a while, posts could be very short for a while come fall, that sort of thing. Because I need to keep posts shorter right now to support balance in my own life, I’m going to be waiting for next week to discuss any happiness bringing recommendations that I have for this month.
Tony, yesterday, sitting in the classroom he’s assigned to next year, doing a sight word memory game. Photos by Ariana
I wonder how many parents take for granted that they can just drop their kids off at school or send them out the door to a bus stop and know that their kiddo is going to swim along through the year just fine without anything outside the expected start of the school year traditions being done. They buy some supplies if they can afford to. Maybe they show up at the open house, maybe they don’t, but their kiddo is going to just dive right in, floating and swimming through anything new.
For a kiddo like my son, who has level 3 Autism, a couple genetic disorders and so much more, any school change takes a great deal of preparation. He can’t just show up without having seen the location and be calm or functional. Same for any classroom change.
As we look to next year, where his teacher and his classroom will be changing, the preparation for that has already begun. We talked about it first. Then we walked to the classroom and stood outside. I showed him pictures at later points and we talked about it. Then we did walk throughs where he didn’t need to sit. Yesterday, he sat in there for five minutes before school began working on some functional tasks while we talked about this being his new classroom in August.
Tony sitting in a classroom at the summer school location last Friday.
For summer school, we’ve had two tours thanks to the graciousness of that facility’s principal. The intent was to increase his exposure in a couple ways. The first tour, I just took pictures, the other kiddos were gone, and he didn’t have functional expectations. The second tour was structured with short educational tasks, a visual schedule that needed to be followed, token boards, reinforcers…basically it was a practice run through some of things that might happen over summer school while other kiddos were still at the school. The principal said he crushed it on that tour, and I agree.
None of that would have been possible without the generous support of the school staff involved in making the time and allowing us to do that, and we are extremely grateful. Without it, my son likely wouldn’t be swimming through his first week of summer school, he’d be floundering. And even with that, I still have to make and maintain token boards, social stories, visual schedules, extra sets of pictures and visual aides for when he’s so overwhelmed he’s not processing language and needs a picture to show him where he needs to go or what he needs to do.
When just a change of classroom can sink a kiddo, a whole lot of work is needed to help them swim.
