A few months back, they replaced our local swirly slide with the above…and Tony’s been afraid to go down it because the decline angle comes with increased sliding speed, which is harder for him with his sensory differences. This past week, he worked up the courage and found a way that worked for him to give it a try, and he’s been happily sliding down it ever since. Photos by Ariana.
Dr. Anna De Ocampo
I cried when I got the phone call a few months ago that you had left the previous practice you had been working with (not so happy tears). Our experience working with you had been nothing but wonderful since Tony’s care was transferred to you after Dr. Kessler retired. While we are also deeply grateful to the physician who helped support his needs over the past couple of months, the level of understanding you have of our son’s case cannot be gained over a single visit and is irreplaceable in my opinion for a kiddo whose case can be so complicated. Undeniably you have always provided him top notch care, and you have been there to support any need our family had, whether it was to help secure him necessary services, quickly change a medication that wasn’t working, or document what was needed for his IEP team, so I cried again (much happier tears this time) when your new practice popped up on-line and I was able to transfer his care back into your hands.
Sometimes it is easy to make too many decisions for a kiddo with the level of needs our son has, and in trying to be sensitive to that, I asked him recently if he wanted to be able to go back to seeing you as his developmental pediatrician. I only got one word from him pressed twice on his speech device: “yes.” So more than being my choice for supporting his ongoing developmental needs, you are his also. We are deeply grateful for everything you have done to promote the best outcomes possible for him over the past six years. Thank you <3
A Quick Note
Also from this past week: this is the first time he’s been willing to try a type of sucker other than his beloved Dum Dums, it’s from a Valentine’s care bag given to him by his teacher this spring. The smile says it all.
Y’all, I remain burned out and tired. As I look to the months ahead, we are facing the very real possibility that as Tony reaches the milestone of attending a full day of school every day, there will not be an RBT available to support his ongoing ABA needs after school once we reach October. Which means, in practical terms, that I personally am going to have to provide any of those additional therapy supports he needs after school until such a time (if ever, because the most honest reality is this is not too different from trying to find a unicorn on our end of town) as one can be located. His current BCBA and ABA team have been nothing short of wonderful to work with, I love their programming, so it’s a loss on more level than one. That aside, my schedule is going to remain difficult to balance and I’m going to be spending some time thinking about how I want to format my posts here to best support my personal needs during that period. I don’t even have much time for personal reading right now, and this month’s recommendations are going to reflect that, so it’s possible I may not be recommending as much reading for a while, posts could be very short for a while come fall, that sort of thing. Because I need to keep posts shorter right now to support balance in my own life, I’m going to be waiting for next week to discuss any happiness bringing recommendations that I have for this month.
Tony, yesterday, sitting in the classroom he’s assigned to next year, doing a sight word memory game. Photos by Ariana
I wonder how many parents take for granted that they can just drop their kids off at school or send them out the door to a bus stop and know that their kiddo is going to swim along through the year just fine without anything outside the expected start of the school year traditions being done. They buy some supplies if they can afford to. Maybe they show up at the open house, maybe they don’t, but their kiddo is going to just dive right in, floating and swimming through anything new.
For a kiddo like my son, who has level 3 Autism, a couple genetic disorders and so much more, any school change takes a great deal of preparation. He can’t just show up without having seen the location and be calm or functional. Same for any classroom change.
As we look to next year, where his teacher and his classroom will be changing, the preparation for that has already begun. We talked about it first. Then we walked to the classroom and stood outside. I showed him pictures at later points and we talked about it. Then we did walk throughs where he didn’t need to sit. Yesterday, he sat in there for five minutes before school began working on some functional tasks while we talked about this being his new classroom in August.
Tony sitting in a classroom at the summer school location last Friday.
For summer school, we’ve had two tours thanks to the graciousness of that facility’s principal. The intent was to increase his exposure in a couple ways. The first tour, I just took pictures, the other kiddos were gone, and he didn’t have functional expectations. The second tour was structured with short educational tasks, a visual schedule that needed to be followed, token boards, reinforcers…basically it was a practice run through some of things that might happen over summer school while other kiddos were still at the school. The principal said he crushed it on that tour, and I agree.
None of that would have been possible without the generous support of the school staff involved in making the time and allowing us to do that, and we are extremely grateful. Without it, my son likely wouldn’t be swimming through his first week of summer school, he’d be floundering. And even with that, I still have to make and maintain token boards, social stories, visual schedules, extra sets of pictures and visual aides for when he’s so overwhelmed he’s not processing language and needs a picture to show him where he needs to go or what he needs to do.
When just a change of classroom can sink a kiddo, a whole lot of work is needed to help them swim.
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
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.
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.
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.
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.
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.
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.
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.
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.
