Ariana's Posts

On Allergies, Mast Cell Activation Syndrome, & The Costs Of Healthcare

Posted on by Ariana
Me, today. No caffeine eye patches needed, photos/screenshots by Ariana

Y’all deserve high quality writing. You do. But, this is what you’re getting so that I can find some personal time today…and it’s going to be relatively to the point and skip anything more elevated or artsy.

Life with a lot of allergies and Mast Cell Activation Syndrome can be complicated to navigate under the best of circumstances. And some of what I do with my risks are because I face the same types of realities as the nurse who discharged me when I went into anaphylaxis a few years ago. She told me that if it had been her, she would have stayed home and died because she couldn’t afford the ER bill. As I recall, my portion was over $2000, and we have (and had) insurance.

Challenge testing something in my allergist’s office isn’t cheap either. So, in the line of patients who reduce meds because they can’t afford it, I sometimes take risks or choose to try things out on my own on the basis of what I know about my body and any previous reactions I have had to something. CBD was a milder reaction for me back when I was reacting, never been anything but mild in all of the years I’ve been trying it. So I felt pretty comfortable trying it out at home. Not comfortable enough to do it while my husband was working (he’s got medical training, I take risks but I’m not completely careless). Nopales? Those caused swelling on my throat the first time I tried them roughly 10 years ago…so if I ever decided I really wanted to try them again, that’s something I would feel uncomfortable doing anywhere else but my allergist’s office. Because they are easy to avoid and I don’t really crave them, I’ve never even brought it up to my allergist (and they certainly don’t have that one on the standard food allergy tests), so he doesn’t even have that one on my medical record. But Stevia? It’s being added to more and more things, caused swelling on my face…so that challenge test is definitely scheduled for his office.

Yeah, I get nervous when I see ingredients I haven’t had before, because I’ve had enough reactions, it’s hard to be confident it will go well. This one went just fine…

I can’t always afford to go in every time I react to something either if it doesn’t lead to serious symptoms. I have been reacting to things my entire life so while I feel the tension and sometimes even the fear when trying something new to me, I’m nearly 48 so I’ve been there, dealt with this for a long time. So if it’s something new to me, I’ll try it, see how it goes…and if it’s just hives or anything I can treat at home he’s not seeing me.

For me, loosing the CBD sensitivity and allergy has been a serious boon for managing my Mast Cell Activation Syndrome Symptoms and my allergies in general. I can still react to stuff, but some days I’m only doing one antihistamine right now – in peak allergy season- and doing way better than I was two months ago (the start of peak allergy season) being on way more antihistamine. This has been pretty awesome, life altering even. The main side effect I have is dryness, for both my skin and my eyes, but I can lotion and oil more and use products for dry eye and it’s more than worth it to me the trade offs.

Still had an Allegra in my system when these started cropping up…had them increasing in number for about 2 hours, until I did some time on the exercise bike. Adrenaline from exercise is very useful in my opinion for milder Mast Cell Activation Syndrome related symptoms for me personally.

But, it wasn’t completely easy to figure out what was doing what initially. Viral infection that came with a POTS flair up (thumbs down), hives to blue agave even with antihistamines in my system (sigh, me and the plants of the desert apparently do not get along)…at one point I got off of everything but 1 to 2 Allegra just to see what was doing what (I even stopped the CBD). And without the CBD, my Mast Cell Activation Syndrome got a bit cranky and started throwing up hives until the CBD resumed. Finding a brand of CBD gummies I can use hasn’t been easy, because many contain things like mango (yep, allergic) or other products I’m allergic to…fortunately, I found one that uses sugar and the spirulina that is coloring the green ones isn’t causing a problem.

The tea I mentioned last week? I love it, Andy hates it, and I’m not having any sorts of reactions to the ingredient I had never had before. For me, trying something new to me comes with potential risk even before I developed Mast Cell Activation Syndrome. I know my allergist would probably be a bunch happier if I didn’t take these risks, but unless he starts comping my bills (which I would never expect or even ask for)…I am sure many of you probably understand and can relate. I do the best I can and I can’t always afford to do everything by a doctor’s version of the book.

So, do as I say, not as I do. If you want to be at the safest, you’re going to have to find the money. If you can’t find the money…I hear you. Health care costs have gotten out of control and most of us are just trying to do the best we can with it.

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Thoughts About When Symptoms Are From A Medical Condition & Not Disordered Anxiety: A Note of Gratitude to Emma from Therapy In A Nutshell

Posted on by Ariana
Me, today. No caffeine eye patches needed thanks to the CBD, photos by Ariana

I started watching Therapy In A Nutshell’s Anxiety series for the same reason I decided now was an awesome time to retry CBD and see if I had lost my sensitivity: Bank of America’s Fraud response. I was starting to have panic attacks in the middle of the night, struggling to sleep, and it was rippling every where throughout my day. Just to sum up, the first rep who promised me the account would be closed and marked fraud didn’t actually mark it as confirmed fraud and I found out near the end of March it was still a pending account. I do try to keep my finger on the pulse of my mental health and make rapid adjustments if needed to self-rescue, and I am familiar with her content and generally find it high quality.

Something she discussed in one of her videos is something I wish every medical provider who treats allergies, Mast Cell Activation Syndrome, or POTS really understood on a level that impacted their interactions with their patients:

“Sometimes a physical medical issue…these show up looking exactly like the symptoms of a psychological anxiety disorder. And sometimes the best way to treat anxiety is to actually treat these underlying physical conditions first [and she goes on to mention that when fully treated in many people all symptoms that could look like disordered anxiety go away]…but most people, doctors included, often focus their treatments on just therapy or just medication (for anxiety)…and then sometimes anxiety, even extreme anxiety, isn’t disordered. Someone could show up to a therapist’s office or a doctor or the ER with clear symptoms of anxiety, and it’s not going to be helpful to treat the anxiety first because the issue is really something else all together.” – Emma McAdam, Licensed Marriage and Family Therapist.

She goes on to mention allergies and POTS (or any condition that causes a lot of inflammation in the body) in addition to multiple other conditions and if she had been in the room, I would have hugged her for it. For me in particular, my body tends to produce a lot of adrenaline in response to anything I have allergic reactions to. My environmental pollen allergies alone had the nurse at my allergist telling me I need to wear a hazmat suit (that part was a joke) and shower and change my clothes any time I got back home after leaving the house (that part wasn’t). When I went into anaphylaxis a few years ago, my body’s response was on full display because the adrenaline I was producing slowed the rate of swelling down but left me unable to stop shaking by the time I was in the urgent care that shipped me off to the ER.

And then that kicked off what became my journey with Mast Cell Activation Syndrome and POTS, and if there is any one thing I would want any medical provider to have the time to listen to and understand it was what that experience felt like. My memory was immediately impacted, which was super disorienting for me. I was constantly having allergic reactions to stuff that I didn’t used to within the first couple weeks, which only added to the adrenaline spikes. And then y’all remember that time I tried Lexapro that summer after this happened? My adrenaline production didn’t decrease and my anxiety got worse. Because I wasn’t following my allergist’s recommendations for how much antihistamine I should be taking after the last round of testing because it was too hard for me to function mentally on that much.

After that, I started doing better about taking more…but even on the max dosing he had recommended for me, I was till having break through reactions, which likely means my symptoms weren’t fully managed. Having that much adrenaline pumping through your system creates a near constant state of fight or flight. And that’s without the POTS, that definitely makes it worse. There were moments where as I was struggling to navigate all of this I felt like providers were really minimizing my symptoms and wanting to just brush everything off as poorly controlled mental health due to my circumstances. I found it upsetting, and those kinds of reactions make it harder for me to want to go into a doctor’s office even when I need to or should.

Tony is staying until 1:30 p.m. at school now on days he doesn’t have ABA, it’s not easy working two jobs with POTS so I feel grateful and blessed that I have had enough symptom improvements that I am able to.

I have had to work so very hard to find ways to manage all of that in the face of all of the stressors that our life holds. Because I still have no problem also saying that when someone is dealing with everything I have dealt with privately or talked about publicly, then we can talk about whether or not any stress that appears to show through on the surface is disordered. Some things it’s perfectly normal to not feel good going through and to feel fearful or anxious when you are first experiencing them. My closest friends have told me they think I handle everything with grace, and I am grateful they see that in me.

So to Emma, from me to you, hugs. Thank you for stating so explicitly that medical conditions can cause states that look like anxiety to a medical provider but actually really aren’t. And I would like to add that even when a person is fearful, especially with allergies or Mast Cell Activation Syndrome, they have good reason to feel that way. I know I just drank a tea with an ingredient I’ve never had before, and as I’m typing this, I have no idea how my body is going to react to it because it’s uncommon enough it doesn’t appear on allergy tests in my area. I don’t have the same confidence a person without my history of allergies or without Mast Cell Activation Syndrome might have that this is going to be completely uneventful and just a treat for the taste buds.

In an unrelated note, I asked my PCP to run my liver enzymes to see how those were doing in light of my decision to continue using CBD and make sure I am adequately spacing the doses between my other meds. The results came back great. For me, the CBD so far has been life altering. Within the first three days, the amount of adrenaline in my system was so reduced…it was easy for me to recognize that the risk for me is worth it because of the benefits in improving the management of my condition with fewer medications that have come. I’m down to two antihistamines and eye drops and doing better than I was before I started the CBD with significantly higher amounts of antihistamine, and it’s peak allergy season for me. Still not needing caffeine eye patches. So, even though Bank of America’s fraud response may have started me off on this journey from a more negative space, I feel like it’s given me more good than bad at this point because of how CBD has improved the management of my symptoms and I’m just grateful to be where I am at right now and I have so much hope that the good things will keep coming from this. Next up, hopefully, maybe (if my allergist thinks it’s a good idea) allergy shots!

I did find an article on Harvard Health Publishing (CBD and other medications, proceed with caution…click article title for a link) that gives a link to 57 medications you shouldn’t take together with CBD. Mine aren’t on that list (but yours might be, so check it first before trying anything), so…any medication or substance going into the body is a risk technically for anybody, and at this point I’m willing to take carefully thought out and managed ones when they bring this much hope. But that is my choice for me, anybody else with these conditions needs to make the best choices for them after consulting their own providers and considering how their body reacts to things.

yesterday, also no caffeine eye patches 😀

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Talking Some Science on Allergy Meds & CBD

Posted on by Ariana
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Ok, so I have some possible answers to explain the effects I observed when taking CBD and my usual cocktail of meds. Because it’s late in my day, I’m not really taking the time to finesse this. This is important to pay attention to for anyone, because if you go to see your doctor to get permission before taking CBD with your medications, the drug guides they look at may just say proceed with caution. We did look up my meds in the same drug guides your doctor is most likely going to use, and none of them said to avoid, they all said just to monitor how it was going because CBD may increase some of the side effects.

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Basically, it’s really important for you to know how your medications are metabolized, because depending on how your body reacts and how much of the liver enzyme is inhibited for you personally (and this likely varies from person to person), it can increase the amount of the drug circulating in your body because it’s taking longer to break down. So, yes, CBD can calm down mast cells…but, unless you can take Zyrtec as all of your antihistamines (if you have Mast Cell Activation Syndrome like I do, you’re probably on more than one Zyrtec per day and even more than one antihistamine type), you will need to proceed with caution for any other antihistamine and probably need to be monitored. Part of what I observed was likely due to CBD keeping the antihistamines in my system longer, therefore effectively increasing the amount in my system. Because when I got entirely off the Hydroxyzine, not all of my allergy symptoms were managed by the CBD and Allegra alone. Except when I tried taking Zyrtec instead (that definitely had superior allergy benefits) to see if my tolerance for it has changed. It is important to note that I am still recovering from a virus that Tony still has some nasal symptoms from, and he got sick 4 days before me, so possibly that will change

I still can’t take Zyrtec, it raises my heart rate about 30 bpm, and interferes with my ability to get to REM sleep (causes insomnia for me). With the POTS, both of those are a no go. I left a message for my allergist a few days ago about if he had any safety concerns about all of this before our upcoming appointment to discuss it and haven’t heard back…my appointment to discuss all of this with him isn’t until the end of April. The Allegra likely isn’t a significant problem because only 5% of it metabolizes through the liver. But the Vistaril? His drug guide might not say so (because my husband’s sure don’t), but it actually could be. So. If you have mast cell activation syndrome, yes it can help, but make sure you talk with your doctor about how your drugs are metabolized versus what liver enzymes CBD can inhibit as you are making decisions together about what is best for your body, and if you can switch to Zyrtec and want to try the CBD, that may be the safest route.

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Ariana's Posts

Gratitude & A Conversation About CBD As An Option For Mast Cell Activation Syndrome

Posted on by Ariana

Second screenshot is citation source, photos and screenshots by Ariana.

Allergies can come and go. For an item to which a person can avoid exposure, sometimes in as little as a year a person may no longer react to the item. My life has taught me this many times over. My earliest memories are filled with hives and treatments and anaphylaxis (I literally lost consciousness and ended up in the hospital and on weeks of medication after my first bee sting). I wasn’t overly disappointed when, as a toddler, I began reacting to things with eggs (hives and lots of them). I hated the texture (still makes me nauseous), I hated the taste. But, loosing baked treats and certain candies was definitely a hardship I remember focusing some negative energy on. The doctor my mom took me to at the time recommended keeping me away from eggs for a couple years and then trying to reintroduce them. I was so scared the first few times I ate anything with eggs, but…turns out, after those two years or so avoiding them, I haven’t had any issue eating eggs since.

In that spirit, I have been retrying CBD every year or so. My previous reactions to CBD have included hives and respiratory symptoms with elevated heart rates. That being said, they were mild enough and the amounts were small enough, that I felt comfortable trying this outside of my allergist’s office as long as my husband was going to be off from work and home for a few days. He works in health care and has all the training necessary to keep me safe for anything up to the level of needing to use my epi pen on me, so that’s my nod to prudence. Stevia, that caused swelling on my face, so I am not crazy or brave enough to try that one anywhere but my allergist’s office.

I started out with very small amounts of the CBD. No reaction. Increased amounts. No reaction. Day three of all of this, still no reaction. And I started to notice something odd. I felt like I had too much antihistamine in my system. Like, way too much. And I could literally handle any fragrance, including those I haven’t been able to handle with a bunch of antihistamine in my system since I developed Mast Cell Activation Syndrome. Floral perfume? No sneezes, no sniffles, no problem. I even slept in it and woke up just fine. L’Oreal Ballerina Shoes, my previous favorite frosty pink lip? Also not so much as a reaction. Both of those on while standing over an incense cone on full burn…my nose had never been so clear.

Mind blown. CBD can calm down mast cells. And I didn’t know. I got on-line and started googling once I was experiencing all of this while feeling like all of a sudden I had way too much antihistamine in my system. It’s always possible my allergist mentioned it to me and I didn’t recall, the POTS that came with Mast Cell Activation Syndrome has definitely impacted the quality of my memory (though in general that has been improving over time as my symptoms have been well-managed). But, since it wasn’t gone over with me with the same depth that the possibilities of biologics were (because I definitely remember those conversations), I feel like it’s maybe worth sharing so that each of you can share if you run into somebody else with this condition.

Me, March 29, 2024, feeling the need to document my Ballerina Shoes moment. Yeah. I know. Doesn’t exactly match the eye shadow (but the original lip color did) and it was near the end of the day and my skin had gone too glowy. Still happy even though my mind was blown…

Some of you may recall, but my allergist tried me on a biologic last year to try and calm my mast cells down. And drum roll, I had an allergic reaction to it. So, that has effectively left us with nothing but antihistamines and a lot of them to manage my condition. And even with 6 different antihistamine pills in my system during a 24 hour period when I first developed Mast Cell Activation Syndrome (2 Pepcid, 2 Allegra (the 24 hours ones), and 2 Vistaril) I couldn’t handle Ballerina Shoes without sneezing, a runny nose, and respiratory discomfort.

And then I started getting sick last Saturday. Most likely I caught the same virus Tony had started getting sick from a few days earlier with respiratory symptoms. But it wasn’t easy for me to avoid a freak out that included stopping the CBD as a precaution, because experience has taught me an allergic reaction can happen at any time. My allergic reaction to Clindamycin happened on day 7 of use (literally the hives were so bad they broke blood vessels, most of my skin was purple and red for a month). As I wasn’t experiencing any other symptoms of allergy and my congestion would improve after the CBD, I figured I was good to keep using it…but I definitely had to work really hard through the worries and fears and what if’s because of my previous medical history and experiences.

And today, still not fully recovered (nobody in our house is, even Tony is still congested and coughing and he started getting sick 4 days before me), but I can still wear Ballerina Shoes without a runny nose. Walked outside with Tony today in peak allergy season for me and not a sniffle or a sneeze (and even with all of the antihistamines I was on that wasn’t happening), literally this is the worst time of year for me to live here and ever since I developed mast cell activation syndrome, I wake up with super puffy eyelids, sometimes so bad they’re almost swollen shut. Yesterday was the first day in years I didn’t need caffeine eye patches to tame that just so I could look normal. And I’ve already cut the amount of Vistaril I was on (I’ve been on 3 a night for nearly 2 years now) in half and I’m still doing fine.

Me, yesterday, not having used caffeine eye patches, whoo-hoo!

And, even though I decided to skip the makeup today since I slept in, I’m wearing Ballerina Shoes while I type this. That’s my equivalent of “pinch me, am I dreaming?” Internal happy dance in progress! So, this is what I am most grateful for right now, this experience, this hope, this moment.

I still, of course, don’t know how all of this will turn out long term. This is a gift I honestly didn’t expect. Once I am fully over the viral crud, I will know for sure how much antihistamine I am going to be able to eliminate. There are still so many questions, and my allergist and I will need to have a talk in person over all of this, because I don’t know if this is something I will have to take the rest of my life, or if eventually the mast cells will be calmed down long enough that I can be weaned off the CBD? Maybe we can try allergy shots with this? I couldn’t benefit from them before, they made me too sick because of how hyperactive my system was and I could never get worked up to a maintenance dose.

I don’t really know. But I hope it continues. CBD is not cheaper than those antihistamines, not even close…but if it can make this kind of difference, it’s worth it to me. Though, CBD is definitely cheaper than biologics, so it might be worth it to anyone with this condition to try. And because possibly this may not be emphasized enough as a possible treatment for Mast Cell Activation Syndrome, that’s what I wanted to share this week, that information and this experience.

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“Two Things Are True”

Posted on by Ariana
Me, this morning.

Earlier this afternoon, after completing a therapy session with Tony, I dropped Hannah and her boyfriend off at Guitar Center, and then drove myself across the street to treasure a rare moment. A moment where I got to enter a store with me in mind and all by myself, no pressure to focus on therapy tasks or to rush for any reason other than when I agreed to pick Hannah up.

As I was paying for a handful of small polished crystals and some incense, the store owner of Centric Crystals and I had a brief conversation. Both of us parent kiddos on the spectrum. I could feel the warmth and encouragement in what she said as she spoke of the moment she recognized within herself that no matter how hard she had it, she felt that her child certainly had things harder.

In the moment, I just listened and thanked her for her words, because I could feel the genuine warmth radiating off of her and the kindness of her intent. I think if I had more time to frame an additional response, I might have led in with words I recently read from a book by Dr. Becky Kennedy: “two things are true.”

“Two things are true.”

My Autistic children have journeys that are difficult in ways I can’t completely understand, and I can readily acknowledge that I have some things that have been much easier for me personally in my life. My journey has had different challenges though. “Two things are true” here: I can feel like stress is ravening and rampaging its way through my life as I do everything I can to meet the needs of certain moments before me, and they can feel the heavy weight of their own challenges and how difficult lifting them can make any moment of life seem.

But a third thing is also true. We love each other fiercely, and that is enough to banish the shadow of many difficult things.

This thoughtful store owner encouraged me to always make sure I can take time for myself. That is somewhat hard to do, but I am trying as I am able. Always something must go undone to make it happen though…therapy or cleaning, for example. But that’s what those quiet moments in the store were for me- self care. But perhaps the thing that was most special in those moments was that someone reached out to share a bit of their light and peace. I hope someone shares a bit of those with each of you sometime soon also.

Much love <3 Ari

Ariana's Posts

Quiet Moments Of Puzzle Joy

Posted on by Ariana
photos by Ariana

There is so much uncertainty in life. A great many people before me have said it, perhaps many more after me. The quiet successes and happy moments in the now have to be the joy we live for, because the rest is just a maybe, a hopefully…a maybe, hopefully some day. But today, this day, my son put together a 16 piece jigsaw puzzle unassisted by himself for the first time.

He did three of them actually. Three he’s not ever tried to put together before. Three very new to him puzzles. So we know, he’s now got the skill for puzzles of that size.

This is a collaborative goal that both the habilatative therapy team (myself and Emily) and the ABA team (Ms. K and Mr. B) have been working on. I am, to the depths of my core, grateful to each of the other therapists involved and every effort they too have personally contributed that led up to this moment today. To keep him from getting frustrated as we build his puzzle skills (it’s one of Tony’s more preferred leisure skills), we need the piece count to increase in smaller increments. There aren’t too many puzzles in this size range on the market for young children, so I ordered a bunch of puzzles off of Amazon geared towards dementia patients. We can’t just reuse the same one, two, or even three puzzles, because then he would just memorize the piece placement rather than generalize the skill.

As the day is already racing past the horizon where I live, and a busy week is rushing to greet me first thing in the morning, I am leaving you with the joy of accomplishment on his face. Smiles that lit my heart up like magnified sunlight hopped up on an energy drink. Take good care of yourselves this week, and I am hoping for each of you to find some moment of happiness… quiet or otherwise.

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Just The Waves Of Life

Posted on by Ariana
Tony looking through his lunchbox at school, photo framed close to protect privacy of other students, photos/screenshots by Ariana

Every night since I developed POTS, I listen to some version of waves crashing against the shore. I find that these sounds sooth me the most, and I sleep so much better with them…but only if they crash with a certain amount of force. Not too much, not too little. My inner Goldilocks gets it.

Life in a way is like spending time on a beach. Sometimes the balance of the waves is one we like, other times it’s maybe too much, too little, too dangerous, too tame…and sometimes everything just gets flooded one way or another. I have seen the ebb and flow of such moments this past week.

A kingly and elegant hummingbird with royal purple feathers flowing down his head stopping on a pomegranate branch about 15 inches from me while I was meditating and grounding as the sun was just starting to roll into the sky where I live- and stayed on the branch until I moved. Which I didn’t for bit, because it was such a treat being so close to a hummingbird. Trouble with our garage door, mostly resolved at this point. Tony staying at school for 4 hours and making it to his first full lunch period. Somebody trying to open a credit card in my name using all my personal information…including my SSN.

Yeah. That was a wave that crashed a bit too much for sure.

Ok, so that last part is definitely the kind of wave I don’t want, but that’s life. Sometimes it comes at you in ways you don’t want. But it could have been worse. Because I get notifications from Experian for any change to my credit report through them, I was sent an alert within a few minutes of the person submitting the application…and I know based on when the credit was pulled MST that they live in a time zone that hadn’t hit midnight for them at the time they did it based on when it posted to the credit card company’s system.

There are villains in this story (boo to the person who did this – because it certainly wasn’t me, I can’t see myself needing a card with frequent flyer miles since I don’t think I could even get my kiddo calmly through the airport, their security procedures, and on to a plane in the first place right now- and the original hackers who raided one of the health care providers I have seen that this information likely was scraped from) and there are heroes (like John from AZ who works for the fraud department at that particular credit card company getting the application canceled out and marked fraudulent for me before it was approved).

There are things that are lucky. Hurray that I get notifications from Experian (who alerted me within minutes to the hard pull on my credit that is done when an application is initiated), because even though I have monitoring for 24 months from one of the doctors I used to see who got hacked, their service is through Transunion, and that’s not where the credit report was pulled from…so I wouldn’t have known in time to do anything to prevent a big, ugly mess if I had waited for Transunion to register a new account.

There are things that suck. I’ve spent more than six hours total related to getting that application marked fraudulent and freezing all of my credit reports and putting fraud alerts on through the three credit agencies. And, I’m sadly not done. This person used my SSN, DOB, all my stuff…which is why I believe it was from one of the health care hacks that has exposed my information in the past year and not one of the retail hacks. Nobody I just buy stuff from gets that up close and personal enough with me to know my SSN.

Why do we even need three credit agencies anyways? Because what it looks like to me is that unless someone is getting notifications from all three, or paying for a whole lot of different monitoring services, it’s a little too easy for something to slip through the cracks if only one agency is providing your service as regards to that. And quite frankly, that’s not benefiting anybody but identity thieves and fraudsters. Maybe the individual agencies collecting monitoring fees are benefiting, but good golly credit fraud is costly and I vote for consolidating all of the credit agencies into one!

I didn’t initially freeze my credit when I got the notice from my former cardiologist because I’ve been getting these types of notices for years, I just monitor my stuff, and I like to have the flexibility of being able to do whatever I need to do without unfreezing, unlocking, etc. Now I’m kind of wishing I’d frozen it, but then I wouldn’t have know for sure someone tried to do this with that information. But truth is, I got lucky, because this account was closed before it was ever approved.

I have heard people recommend not to give health care providers your SSN, but the reason they want that is so that there aren’t medical records mix ups between individuals with similar or even idential names. I used to work for a hospital system, and those kinds of medical records mix ups can kill people, so they prefer to have something that is a super unique identifier like the SSN for patients. But it’s definitely unfortunate when data gets hacked from a healthcare entity that has access to all of that. However, if you are concerned after reading my story, you can probably ask your provider to issue you an organization specific computer generated ID number from their system for their medical records- it just won’t transfer well to other health care systems in my opinion.

Today’s makeup…when we did public therapy at Baskin Robbins earlier today, the clerk complimented me on my eyeshadow, which was sweet…makeup is always a happy wave for me 😀

But that’s life. It’s the good and the bad. Our son’s BCBA encouraged me to do something kind for myself this past weekend, like some colorful makeup on a day off from my job at the school. Today was the earliest I could manage that (spring break) with what’s been going on, but I also got to have breakfast with my good friend Gena. So even when the waves are pounding too hard sometimes, there’s always still a gentle stretch of walking in the sand and finding some bit of quieter enjoyment.

And before I get going, one quick video share: I found this soooooo relaxing after I spent 1 hour and 39 minutes on one phone call alone over all this. You can click on the title for a link.

Rainbow Curve and Relaxing Music, YouTube video by Lew’s Sensory Therapy

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March Gratitude & Some Self-Care For The Stressed Viewing/Stuff

Posted on by Ariana
Tony & I early in the school year, photo by his fabulous teacher, Ms. L

Y’all, my schedule is so full I don’t usually even cook for myself these days. I make myself salads. Yogurt bowls. Oatmeal. Smoothies. Maybe some pasta (if it will cook in less than 10 minutes). So as much as I would like to detail all the ways I am grateful for the special education team and the staff at our son’s school, I just don’t have time to do any of it justice. Some day soon, but this week isn’t that week, so what I will leave you with is the most concise thing I can say, which is that I feel like they have seen my son and his needs and every single person has been supportive in a way that wants to wring tears from deep within my heart every time I think about it. I am grateful and touched by the way they have worked with him, with me, and with our family. You guys rock <3

Some Self-Care For Stress Viewing & Stuff

Emotional Freedom Technique (EFT) Tapping, by Ridley-Tree Cancer Center (YouTube Video)

When finding self-care feels like the quest for the Holy Grail, sometimes I want to internally shriek like a banshee when someone says I ought to make more time from myself (because there just isn’t much of any such thing that can be carved from my schedule right now). If that sounds like you, but you would be interested in trying something quick that is evidence based that might help calm the pounding from the waves of stress, maybe consider giving EFT a try. I found this video to be especially nice because the presenter is using a very soothing voice. As an additional recommendation, I add to my “even though” statements an additional piece: for me, it is not enough to stop with loving myself unconditionally, I like to add a positive leaning statement about how I’m going to find a solution, or get through something. This helps orient me to being open to the best even when I’m dealing with the worst and gets me in the best frame of mind to problem solve if need be. (Click on the title for a link if you are interested).

Dental Guard Recommendation: SmartGuard Elite Dental Guard, Front Tooth Design

So, I broke that crown grinding my teeth in my sleep…something that started with the pandemic and hasn’t let up yet. So, if the stress is causing you to do this also, read on. I know I should have a night guard, I’ve even had one made by my dentist, but they are too expensive in this economy for me to keep having done professionally (because I grind through them enough where replacement costs would be over a thousand dollars yearly at a minimum). I have literally hated pretty much every over the counter mouth guard I have ever tried, except for this one I found last week doing public therapy. I can close my mouth with it, because it only covers the front teeth it isn’t too thick in the back (but it definitely does keep all the teeth from contacting), and because it’s smaller, it’s quicker to clean in the mornings- win, win 😀

Ariana's Posts

Life Always Giving Us New Therapy Goals

Posted on by Ariana
Tony from our hab session this morning, Photos by Ariana

Things have remained pretty busy over here, so I am going to keep this post short and sweet. Yep, it was strep. He’s been on antibiotics for more than a week now. And the appointment to be tested with his primary care made it clear there’s yet another thing we need to help him learn how to tolerate: strep swabbing.

He has only ever been tested for strep once, several years ago when he was much younger, and he had to be held down then. I had to hold him down this time too because he got really scared by it, and with his throat hurting I imagine he wasn’t feeling as receptive to anybody touching back there. He tolerated every other part of the exam calmly, including looking at his ears and listening to his lungs. He let them put the blood pressure cuff on and pump it up. Aside from the sadness that gave me to see that we needed to hold him down to get this done, I recognize it won’t be sustainable as he continues to grow.

And so, another habilitative therapy desensitization goal was born. I bought some swabs of an appropriate length from Amazon, and we started working with them today. Because I have done so much work for other types of swabbing (like COVID testing, which he is now fully tolerating without reinforcement), the progression on this for today has gone pretty quickly.

I started with touching his lip, and then when he was tolerating that well for part of the session I moved to asking him to let me quickly touch the tip of his tongue with the swab. Then we progressed to touching the side of the mouth back towards his molars and then to rubbing for a couple seconds in that area. In time we will progress to moving towards touching the areas pertinent for testing with the swabs. This is something that has to be done gently and carefully so that swelling and/or irritation isn’t caused, so we won’t work on it more than once a week.

As many things as we have worked on that he’s now tolerating (recently he’s progressed to calm acceptance of an anesthesia mask on his face while laying down without his kindle for a full minute, with lavender oil in it to help with the expectation for possible odors), there’s still so many things still to be done. We also worked on sunglasses today, with the longest he will keep them on being 2 minutes right now. I know sunglasses aren’t strictly necessary, but if he should ever need glasses for his vision, this will be an important one too.

And, though it’s random, I found out more than just what else we might need to work on in therapy this past week. Tony likes the song “California Love.” Sometimes if a song comes on the radio and I see him moving his head to the music or clapping, I ask him…and this was the case here too, and he was pretty emphatic and enthusiastic about it. So on my Spotify liked list it went. These moments mean a lot to me because they give me glimpses into his own unique personality. That’s not a song I generally listen to, he definitely has his own likes and preferences outside of what he gets exposed to a lot from my listening tastes.

And now I am headed off to get ready to do more therapy. I wish you all a wonderful week ahead! <3 Ari

Ariana's Posts

“He Has Benefited From Having You Here”

Posted on by Ariana
Morning traffic on the way into school just after an in-home OT session, photos by Ariana

Yesterday afternoon I had the pleasure of meeting briefly with the current principal for Tony’s school to discuss how things were going for him and whether or not I’d be returning to assist him at the school next year. She remarked about how well he was doing, we talked about the growth he’s had in the school environment, and she said something that I think sometimes we all need to hear:

“He has benefited from having you here.”

For each and every person who works with our son in whatever capacity, he benefits from having you here too.

Even if I’m not talking about it right now as I try to decide how I want to handle discussing any of his other therapy services outside of my hab work. I have honestly been uncomfortable asking anyone to participate in posts about their therapy work after what happened with a former provider more than a year ago, which is why that hasn’t been happening lately. While I tried to handle any discussion about that situation with a delicate hand, there remains implicit criticism from our family in what little I did say, as we remain unable to support their handling of our son’s care at the time of termination or the manner of the termination of care from their organization, while recognizing and honoring the good they do for other families within the community. My desire has always been to make sure this is a safe space for everyone who works with him because I know at the end of the day that what I say can potentially impact a person professionally.

But that does mean that I have not been shining the same light of gratitude on those who help us here that I used to because I have definitely been talking less about the details of what they do as I remain unsure how I want to handle that going forward. We have been and always will be grateful for those who work with our son. I don’t want any of them to feel like they are unappreciated ever. But I do want people to feel safe continuing to work with our family, hence the public silence for the time being.

Because you are deeply appreciated. I am grateful for anyone who helps him in whatever capacity.

And so from me to you I give the same words:

Tony has benefited from having you here. And that is something that benefits everyone who works with him.

Thank you <3

And now I need to get going. Our little man has an unexplained fever without respiratory symptoms (COVID test negative, he’s doing so well with those now!), so we’re off to his doctor to get tested for strep.