Ariana's Posts

Regarding Proposed Cuts To Services for the Developmentally Disabled in Arizona

Posted on by Ariana
Screenshot from google results, all photos by Ariana

An Open Letter to Governor Hobbs, the Arizona State Legislature, and each of you:

In this house, my kiddo has now been without PT and OT for more than a month as the situation I wrote about in my last post remains an active and unresolved matter. So in what would have been an OT session, I am writing a post. While I’ve improved in my surgery recovery to the point where I can play piano an hour at a time, crochet during my entire session with my own therapist, and help my son through school, with each passing day I look at the local and national headlines regarding DDD funding and cuts to Medicaid services with growing concern.

For those of you who do not know, Arizona DDD / ALTCS is set to run out of money in the next couple months as the number of disabled individuals in Arizona has continued to rise, and members of the legislature appropriations committee here are recommending deep cuts for the future despite budget surpluses in other areas. I have posted links at the bottom of this post from media outlets and Raising Special Kids. For me, as a mother who values the sanctity of life, I remain firmly committed to the idea that if we as a community support the right of all life being born, we should be equally willing to provide medically necessary supports for each and every one of those lives to thrive within the community. I am going to post an updated version of thoughts I sent some members of our state legislature recently:

Tony at school today…

I am the mother of a child with multiple significant disabilities that we adopted from the Arizona foster care system. Our son has been approved for ALTCS and DDD since he was 2 years old owing to the severity of his deficits and care needs. Without the services, we never could have afforded to pay for his care. Our primary insurance through my husband’s employment would not have covered most of his services and he likely would have needed to be placed in an inpatient care facility a long time ago. Tony had one therapist when he was four and a DDD support services coordinator around the time he turned six both state to me that an inpatient care facility were necessary and appropriate for him. He is now nearly 13 and been able to stay successfully at home with us in part due to the services and support he has received.

And as of now, he’s still able to live in our home entirely because of the benefits and services he has received from DDD/ALTCS. Placing him in a facility would have increased the burden to taxpayers for his care, so I would like to start off with a concern that cutting services in any way to these programs will actually ultimately either increase the cost to taxpayers or increase homelessness for the developmentally disabled. ALTCS pays for inpatient facilities used by the developmentally disabled. It would also have a chilling impact on adoptions of individuals with disabilities or specialized needs from the foster care system. Without a support to pay for necessary services, most families wouldn’t be able to afford to make space in their home for these special individuals. A likely decrease would also be seen in the number of families willing to foster disabled children, as they would be unable to absorb those extra costs of care. 

It has been discussed recently to target the parents as paid caregivers program, but it is important to understand that these programs benefit disabled individuals that require a therapist or an in home attendant, but non-familial providers for these services could not be found for them. This is a complex issue resulting in part because the pay rate for services such as habilitation isn’t competitive enough to have a sufficient work pool to provide these services to all who meet medical necessity.  If the parents or family members cannot provide these services, this will also increase placement in facilities.

In part because of the work I have done with Tony as his habilitative therapist over the past 5 years, he is now in a public school and able to integrate into many areas of the community in a way he otherwise wouldn’t have been able to. My son is one of many for whom a provider was not able to be found and necessary services were provided by me. With the current economic circumstances, very few families could afford to do this for free which again would increase the burden on the taxpayers ultimately as more families would seek to place their loved ones in facilities.

In my opinion there are other programs that can be reduced, including providing vouchers to help cover the costs for private schooling for developmentally normal children who could still thrive in their public schools. These are children who are going to be able to do well and succeed without these kinds of monetary supports. Children like my son won’t be able to.

This is a very complex issue and there is so much more I could say. I am very grateful for the time you took in reading this and wish you a wonderful day…

And this I wish to each of you as well, but with an added request. If you are a family member, friend, or loved one, please consider reaching out to your state legislators if you feel comfortable supporting the ongoing funding for these services.

Click on the phrases below for links to the following articles:

“Action Alert!” by Raising Special Kids

“Funding for services to help people with developmental disabilities in limbo,” Zach Prelutsky, Arizona’s Family

“Disability advocates call on legislature to close $122M funding gap at Division of Developmental Disabilities,” Colleen Sikora, Twelve News

“Medicaid Matters: Tucker’s Story of Strength and Inclusion,” Raising Special Kids

Ariana's Posts

Just Like That UMR Happened…

Posted on by Ariana
Me, doing a skin check yesterday. Don’t worry Dr. J, I’m still wearing the collar all day except for skin breakdown checks.

Bear with me, that title is going to make sense in a few paragraphs.

On December 16th, 2024, I met with an orthopedic spine surgeon to discuss my MRI findings and a proposed surgery. He felt that waiting any longer than necessary to do the surgery increased my risk of permanent deficits, specifically he mentioned needing a cane or a walker if we waited more than a few weeks. An EMG just two days later showed some damage to my motor planning nerves. That same day, surgery was scheduled for December 24th, and when my surgeon spoke with me the morning of the procedure, he told me that there was a possibility I wouldn’t see any improvement for my current symptoms, but that what they were planning was that this surgery could keep things from getting any worse.

Me, from a screenshot of an I love you video I sent my kiddos after the surgery, and with an allergic reaction to the adhesive on the waterproof dressing they were used as shown on Dec. 26th from a picture sent to the surgeon.

For a few days now I’ve been walking ten thousand steps a day or more. Yesterday I was over 13K. I might have been there sooner, but I ended up with COVID less than a week after my surgery, which pushed my sitting heart rates into the 150s initially, down to 125 laying down in the ED. The ER doctor put me on Paxlovid, and thankfully I didn’t have any sort of allergic reaction and it helped bring my heart rate down quite a bit (I wasn’t so lucky as regards to the sennosides they used in the hospital after my surgery, but it was just hives and redness for that so not so bad either). While my sitting heart rate is thankfully much lower now, it’s still not quite what it was because COVID can’t seem to touch my life without igniting a POTS flare up.

Overall, I am recovering well and each and every day gets better. Most of my previous neurological symptoms are gone, and the remaining have been improving bit by bit. I’m playing piano with fewer mistakes than I was in the last few months before the surgery, my handwriting has gotten better again, and it’s no longer so difficult for me to type. So, you’d think that would be cause for celebration and it is. But every now and then it seems like there must be a fly in every ointment, and so here it is:

A new year, a new insurance plan through my husband’s employer.

UMR.

In case you’re not familiar with that name, it’s a United Healthcare company. I have no doubt at this point because of the news you’re vaguely familiar with who they are even if you’ve never had the insurance yourself.

They’ve already denied coverage for the bone growth simulator ordered by my surgeon. I had a cervical corpectomy with the vertebrae portion they removed being cut up and put in a titanium cage they used to stabilize the area that had to be cut out to remove the disk pressing on my spinal cord, so he wants to prevent non-union or lack of fusion for those pieces. Definitely a medically reasonable request under the circumstances.

And this morning it was confirmed to me that Tony’s OT and PT services would be put on hold until further notice because the agency who has been providing those services for years (Amara has been working with us for I think close to 7 years now, and we were with that company for different therapists before her) won’t accept patients who have that insurance any longer unless it can be proven that UMR will pay the claim. What I was told is that they’ve been stuck in a cycle where they call UMR to see if prior auth is required, they get told it’s not, then they submit a claim, and the claim gets denied for lack of authorization…but not in a timely manner. UMR isn’t returning those denials within the time frame required by DDD to get reimbursement if the claim is denied.

So they had to eat those costs. And they need to be able to pay their therapists. Also a very reasonable expectation. I called the prior auth line for our insurance today because it’s handled by a different company for PT/OT (and that company does have reps working today). I was told no prior auth was required by the person I spoke with, Ms. S. The therapy provider called UMR last week and was told that they showed that authorization will be required for our plan (something the prior auth company denies). The prior auth team said that they can’t do anything about that and to take it up with UMR. I called UMR, and sat on hold for more than 30 minutes before an auto recorded message finally came on saying they “are currently closed to observe the holiday, please call back…”

And just like that, UMR happened to more than one of my days in the past week. UMR happened to my son’s life in a way that is harmful to him. If UMR pays or processes one of his January claims in a timely manner, this therapy provider may resume his services. If it is handled by UMR the way other cases were handled for clients of this provider, they are going to terminate his services immediately through their company, and this is one of the bigger in-home therapy providers in the area. Depending on how long UMR takes to go through this process, Tony may even loose his current therapists and have to wait for new ones to be assigned even if they do pay, and that’s been very upsetting for him. I have heard from this provider that taking more than one month was common for the denial process to play out for claims for other clients with UMR in recent years.

Indeed.

It’s a good think I’m recovering so well from this surgery. While I’m hoping for good things to come out of this, I recognize we may need the strength of my current recovery for more than just the return to me doing therapy work (Tony and I already did hab today) or my return to working in the school with Tony tomorrow. I wish each of you wonderful week ahead. Much love, Ari

He still needs one to one support, I walked away to get my camera to take a picture of how well he was doing with this set of circles and he started scribbling in the last one, lol.
Ariana's Posts

Two Autistics Walked In…

Posted on by Ariana
Screenshots and photos by Ariana

This is a lower resolution screenshot taken from a brief summary video I was able to download from my MRI in October. What is shown here, according to the surgeon who is treating me, is one of my disks which has slipped behind a vertebrae. And what you are seeing is a picture of what the spinal cord compression looked like then.

As I have considered so many times over the past few weeks what I would like to write next, I think that so many of the words that could have spilled across these pages were happy to sacrifice themselves to the efforts I have been making to pull pressure off of my nervous system wherever available. Maintaining this space here is one of the least necessary things in my world.

Tony from last week. He has recently started expressing interest in using the hand dryers at school.

I have focused most of efforts on meditation, yoga, showing up as Tony’s aid at school, making time for my own therapy sessions (currently we’re working on medical trauma), and otherwise supporting the immediate needs of my family. You would think perhaps in all of this I would have considered what I would prefer to say about my own recent Autism diagnosis. And I have. Many times. I have turned it over and over in my mind, and it goes something like this:

Two Autistics walked into a bar…and couldn’t agree on much of anything. Not whether puzzles or puzzle pieces are insulting to individuals with Autism (I personally love them and spend time on a puzzle app daily, yet others find it degrading to see puzzles used as symbol for Autism) nor whether every Autistic needs PT/OT/ST/ABA/DRI/PRT (not everyone on the spectrum does but many will). Certainly not on whether or not every Autistic should get a diagnosis.

I am a person who sometimes says uncomfortable truths, having either missed or overlooked the desire for others that they should remain unsaid. So what I will say here is consistent with that personal theme and is simply this: only if a person needs a diagnosis to obtain services and/or only if they want it. The truth is that there is still so much stigma, so much discrimination, so much ableism that a person has to consider carefully for themselves if they want to actually walk that road if they don’t have to. As myself and any other Autistic who makes it to adulthood without services demonstrates, therapies aren’t necessary for everyone.

I have a degree. I had jobs with titles and non-entry level responsibilities (though they are currently super irrelevant given the current needs for our family). I know I experienced some things these last several years before I was diagnosed just from therapists who clocked me as possibly Autistic after working in our home that gave me considerable pause as to whether or not I would ever want to actually have that as an official diagnosis, so I will never think poorly of a person who decides that isn’t the battle they want to fight for the rest of their lives. For perspective taking, neurotypical witnesses corroborated those differences I observed and validated my perspective to me and others, which was a gift. Gaslighting in these types of situations can be a thing far too readily experienced for Autistics or other individuals deemed to have any sort of disability.

Not everyone will have that luxury of choosing whether or not they can or even need that type of diagnosis. Those decisions will be made for them, either because they have to be because services are necessary or because they had a very aware parent or someone within the community who pushed for it when they were too young to have legal standing to decide for themselves.

My eyes, which might not see this the way you do. And that’s ok.

Hiding or masking doesn’t change what a person is, who they are, or what is going on with them. In the having of this particular diagnosis, even actual medical problems can be written off as more likely being just “in your head” or just a problem with your sensory processing until otherwise incontrovertibly proven. Every capability even sometimes has to be proven, and often then some will still be discounted or disbelieved. Those challenges won’t just vanish though in the absence of a diagnosis if a person can still be clocked as possibly Autistic for any reason.

I maintain what I always have: we are way too focused on labels, way too focused on determining who has value to our society and who doesn’t by them. I am a person who believes in love and compassion, in finding safe spaces for everyone within the community. I think we should just see one another in the context of what we can and can’t do (with minds fully open to seeing what actually is possible there), what our needs are or aren’t…and just leave the stigma as a relic of the past. Maybe find it in our hearts to support what is or isn’t without judging it.

As a young woman in my 20’s, nobody thought of me as Autistic. I was thought to be a bit reserved, a bit of a rebel at times, somewhat eccentric, smart but a bit too blunt on occasion. I functioned in the workspace in a manner that my competence was never questioned. To me I have always found it an oddity of our society that a single diagnosis, or even a single impression that led to the wrong conclusion, can lead to such drastic revisions in how a person is seen or treated within the community for a considerable time or even the rest of their lives. Sadly, I think a diagnosis can sometimes reach an erroneous editorial hand into a person’s past as well in ways that can be detrimental to the well-being of the individuals involved.

As I get ready to head into a more involved surgical procedure, I am going to need to take some time off from typing. Perhaps then when I am more recovered I shall type up some more loose ends here. Until then, I am wishing each of you a fabulous holiday season, whatever it is you celebrate or even if you don’t. Much love, Ari.

Ariana's Posts

November Gratitude & Some Reading/Viewing

Posted on by Ariana
Photos by Ariana

Miss Emily

Somehow even when I know the way time can slip through the fingers and the mind, I still struggle to math that there have been enough days to add up to nearly 9 years now that we’ve known each other. From Tony’s second music therapist to one of my closest friends, you will always be part of the family of my heart. Thank you for dropping everything you were doing that day back in July to come to my house when I called so that someone could be with Tony until another family member could get here while I was taken to the ER. I don’t like to go anywhere like that at this point unless I know I need it, and my right sided weakness was bad enough the ER doctor thought I might be having a stroke. I thankfully wasn’t, but you rushed over as if I could have been when I told you my symptoms and like every second counted. You are a wonderful, kind, caring, and giving woman. Thank you again <3

Our School Family & IEP Team

Anonymous here but not in my heart, thank you for expeditiously approving an IEP addendum arranging for Tony to ride the school bus with my assistance. As always, we are grateful for your support of his needs and his growth. (Shown below is some of his school work from this past week, where he’s showing improvements in tracing things on programs that allow for errors).

Some Reading and Viewing To Consider

Delilah Green Doesn’t Care, by Ashley Herring Blake

I picked this book up in paperback format quite some time ago during a public therapy outing, but didn’t read it until this past month, when I decided the lack of blue screen light made it ideal for pre-bedtime reading. The titular Delilah has a complicated, pain filled relationship with both her stepmother and stepsister Astrid, to the point that only a very hefty paycheck can persuade her to return to her hometown as Astrid’s wedding photographer. While in town, she falls in love with Claire, one of her stepsister’s closest friends.

The past few months have had difficult moments for me, and while there are multiple things about this book I liked, my primary reason for recommending it was a certain cayenne pepper filled scene that started on 271. I hadn’t laughed so hard in weeks, it was great for elevating my spirits. I felt like the author did a good job bringing nuance to the reasons Delilah and Astrid’s relationship had deteriorated, and I appreciated that it ended on a hopeful note for a true family relationship developing between the two.

El Secreto Del Rio, Netflix

I loved, loved, loved this. I watched it in Spanish, but I believe it does have English audio as an option. The story starts with a young child (Manuel) who goes to stay with a grandmother because the mother is secretly receiving cancer treatments. While there, the drunk uncle of a new friend (Erick) tries to abuse Manuel, and while Erick is trying to help free Manuel, the uncle falls into the river, hitting his head and dying. For me, Erick finding a way to overcome the prejudices instilled by his father to find an enduring love for Manuel (who transitioned to Sicarú as an adult) as the plot evolved was the gem of this story. I think learning to listen to the stories of others, to see their value and humanity even when we don’t understand their differences, is a beautiful thing. I also greatly appreciate that the 8 episode series ended on happier notes for most of the characters.

(Latest puzzle completed, and from our visit to PCH to see genetics this past week…)

Ariana's Posts

“But Wait, There’s More…”

Posted on by Ariana
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.

Ariana's Posts

It’s A Matter Of Perspective

Posted on by Ariana

Some days 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.

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.

Ariana's Posts

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.

Ariana's Posts

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

Posted on by Ariana
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.

Ariana's Posts

Autism Sure. And…What Else?

Posted on by Ariana
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.