Ariana's Posts

Mental Healthcare *Is* Medical Healthcare

Posted on by Ariana
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.

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Word Light, Gratitude Heavy

Posted on by Ariana
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.

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Looking For Positives While Lumbering Through The Sluggish Quagmire of the US Healthcare Diagnostic Process

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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.

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Autism Sure. And…What Else?

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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.

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Still Busy & Checking In

Posted on by Ariana
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!

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On A Personal Note

Posted on by Ariana
Selfie of Me.

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

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Some Gratitude & A Quick Note

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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.

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What Some Kiddos Need To Stay Afloat Through School Changes

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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.

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Travel Size Therapy Note

Posted on by Ariana
Tony in the sensory courtyard at his current school this past week. Right now because we are there for longer amounts of time, he will work on structured tasks for 20 minutes and then get a short sensory break or walk. Photos by Ariana.

A few days ago, I sat on my bed and cried as I repeatedly inhaled deeply a perfume I had tested out on my forearm, a fragrance with jasmine notes. Never in my life to this point have I been able to tolerate the smell of jasmine in the community or even as a background note in scents designed to be worn. I wish I could tell you I didn’t sit there smelling my arm like a loon for approximately 10 minutes, but nope. Can’t say that. I am just deeply impacted and grateful that at least once in my life I get to know what this feels like.

I have long been a fan of travel sizes in perfumes as pre-CBD me even before I developed Mast Cell Activation Syndrome couldn’t really get away with wearing even perfumes I tolerated more (mostly fruit based gourmands) on a daily basis. I had to give myself and my system a breather. So, it’s always been just plain cheaper and less wasteful. Now I’m in perfume every day with stuff I couldn’t even do occasionally without wreaking havoc on my allergies and respiratory system. And travel sizes are still cheaper if I want to try something on the nicer side of things.

So that’s what we got me for Mother’s Day, some travel sizes of some perfumes I really wanted to try or that I liked the smell of while we were doing public therapy. My favorites so far are Kayali Eden Sparkling Lychee and Replica Jazz Club. We’ve been through this before when discussing my musical tastes, but just as a refresher: don’t ask me to make sense. That will just probably never work out, I like what I like. I know those smell about as far from each other as could be, but I love them both and they have infused my days this week with joy.

In the spirit of busy mothers everywhere (myself included) I am going with travel size posts for a bit. Today’s is a travel size note on my therapy work.

As I mentioned last week, Tony was approved for extended school year (ESY), so he will attend a half day of schooling for three weeks during the middle of the summer break. This is to help him retain his tolerance for the environment, which he is still in the process of building.

The ESY school is not the one he currently attends. Now, he is nervous about this, but I am actually pretty darn stoked about it because I think it is valuable for him to expect as soon as possible that school locations can change since he’ll only be in middle school for two more years and I want him to have the opportunity to get used to the idea before high school.

Yesterday, getting ice cream after walking around the ESY location before heading off to the fragrance aisle of the local mini Sephora…

My first step was to reach out for contact information to arrange a tour for him before the school year ends. My next step was to take him by the school on the weekend when nobody was there and walk around the outside, talking about what would happen and when. I used a calendar at some points to help him get a reference for the flow of time involved. Because he’s now been in school for several months, I added functional expectations for the outing such as describing landscaping so that he could already acclimate to doing something other than walking around on the campus. I then took him to the same ice cream shop we sometimes stop in after a successful school day right now so he could associate and transfer over positive and happy experiences with the new location as well. My next step will be to schedule the tour, during which I will take pictures to make visual aides and schedules to support him once the summer session starts.

Success for traveling through this type of transition requires many small steps, and these are just the first of ours as we prepare for summer school. Wishing each of you a wonderful day and a Happy Mother’s Day. <3 Ari

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A Small Bouquet of Gratitude

Posted on by Ariana
Tony, yesterday attending a birthday party, photos by Ariana

For all the weeds of life (i.e. identity theft), I want to acknowledge the varied blossoms of happy moments I have experienced lately and gather them into the tidiest bouquet possible for this post, from the most literal (being able to wear a perfume with strong floral notes without sneezing, wheezing, a runny nose, or systemic malaise) to something more symbolic, like seeing Tony attend the first birthday party he’s been invited to in years. For nearly an hour before we left I watched him display comfort I once only dreamed of seeing him have in a completely new to him house and mostly unknown to him guests. He did some answering questions with his speech device, he smiled, and he left calm. Such a beautiful bloom, that.

To Emily, thank you for inviting him and I. You know how rarely anybody extends that type of invitation to him, and as a mom, you know how grateful I am in this moment. Your friendship has long been a gift and a blessing in my life. We appreciate all of the years you have worked with our son as one of his therapists and as you move forward on this next chapter, I am honored as always to have you in my life.

I think it is pretty clear from the previous week’s post, but so many of my happy moments this past month have bloomed because of my new tolerance for CBD and how it is currently improving the control of my Mast Cell Activation Syndrome related symptoms. For me personally, the CBD combined with the reduced meds is actually a lower level of potential medication complication, so it’s an incredibly desirable outcome all the way around at present, and my every hope and wish is for the continued success of this. The tender and many-colored petals of feelings are everywhere in my life right now, but this morning’s fresh burst of happiness came from finally waking up to eyes dramatically less irritated after finding the right mix of dry eye products. I appreciate the recommendations of my allergist in helping me out with some of that.

My eyes today…less red, yippee!!!

To our son’s special education leadership team: thank you for approving him for extended school year. He has worked so hard to expand his tolerance of all of the sensory input in this environment, it is the baby’s breath of bubbling puffs of joy to see so many moments of growth for him there. But, as we have only just reached beyond 2pm in the afternoon, helping him have more experiences in a school environment over the summer will help new buds of skills to thrive and blossom. I am deeply grateful to your team for recognizing that and supporting his needs so fully.

There is so much more in my heart, but I am also facing a tighter schedule, and to be honest, I have moments of burn out where it’s hard to be working two jobs that can go 7 days a week on top of everything else. I have extra therapy work to do to help Tony acclimate to the summer school campus (which is different from his regular school), specialized testing we are doing at my allergist, and many other things that will fill up much of my time. I’d really like to cuddle and watch a movie with my honey right now, so…I’m just going to tie this up where we’re at with a hint of maybe I’ll be doing fewer posts for the next month, maybe not. Totally depends on how the schedule works up and what my physical and mental health needs are clamoring for.