ADHD Tales

I had several revelations this week. The first one happened when we went to Ohio Renaissance Festival. I’m not fond of crowds, feeling crowded, too much noise that I can’t filter, and overall loud people in small spaces. I once got a migraine back in college at a store in one of the malls that was so full of circular racks it was hard to move anywhere. When we went on our road trip back in 2015 and I got sick between Portland and Arcata, CA, that illness exacerbated my sensory issues that I didn’t realize were sensory issues back then. We found a place to eat dinner but it was a wide open space that was full of not only students at Humboldt, but older locals who live and work there. There was so much going on, the light was dim, I had a hard time reading the menu, and I really just wanted to crawl into bed. Every minute that passed, the internal buzzing intensified until I felt I was going to explode. Chaz saw how it became painful and as soon as we were done, we got out and it was like releasing built up pressure as soon as we were away. I was still sick though.

Being able to filter out conversations and focus on doing a thing or another conversation became something I had to force myself to do when sharing an office with other people and not enough buffers between us like a modular wall. Whether it was my-coworkers having at least two different conversations going on or one conversation and several on the phone with clients, service providers, state social workers, or Kentucky’s Medicaid gatekeepers. I was less inclined to eavesdrop so I could focus on meeting my own deadlines and getting as much done on my task list before leaving for the day. At one point I was going in an hour to an hour and a half earlier than everyone else just to be able to get as much done with no one else there and have music playing in the background to keep me going. If I could’ve, I would’ve used headphones to listen to music the entire time I was in the office but there was that pesky telephone of mine that I had to listen for.

Back home, we have big street festivals called Ho’olaule’a. Waikīkī is the biggest of them, blocking the main drag of Kalākaua Avenue for entertainment stages and vendors. People at the stages generally stay in the street, but because it felt like the entire island was there, there are areas where you have to squeeze through the crowd on the sidewalk to get where you’re going. I didn’t go every often because the crowds were too much for me and Waikīkī is one of the last places I would want to have a meltdown (not that I realized that’s what they were back then).

When I went to Bonnaroo with Chaz and two of our friends (the three of them had gone together in previous years. I always looked for a spot that I knew wouldn’t get crowded at every stage we went to. That’s how much I try to avoid crowds in crowds. And I’m pretty sure this is why I dislike General Admission only shows where there is no seating and shows where people crowd into the seats that aren’t theirs. I end up getting surrounded, the buzzing starts, and I hyperfixate on the people crowding me instead of enjoying the music.

So, there we were at OHR in the 3 Fools Pub, me eating smoked turkey with relish on it (because there were no sides or veg at that vendor that were safe for me), listening to Pirate’s Creed at the edge of the pub where people were passing by behind me and everyone inside was clapping, stomping, and yelling along. I thought that I should probably prepare myself to leave when I knew it would be coming. But. BUT. I sat for a minute and really paid attention to my body. All was calm. CALM. I should’ve at least had a low level buzzing. I’m not saying I like crowds now, but having Adderall on board made it more tolerable. There was a point in a shop that had very little room to move in the first place and people were just standing, not really looking, just standing and I was stuck. Brain kicked in and screamed, OUT. Which I did after saying “excuse me” to everyone literally standing between me and outside. Without Adderall, it likely would’ve been worse and strangers would’ve thought I was rude.

My next revelation yesterday after a perfect storm of things I couldn’t control in a short period of time—an order arrived that was missing things and my attempt to contact the seller with their link was just me talking to an AI thinking I was asking a hardware question and then finding out another order was delivered around noon (which was hours before) but there was no box—spending an hour dealing with those two issues and trying to do ALL THE THINGS to fix them at once because I knew I’d forget if I didn’t, being 60 words away from my daily word count goal with dinner closing in as this happened, hormones going bonkers before my period starts (hormone changes affects our neurodivergence), and being late taking my afternoon Adderall because I forgot to reset my timer after my midday dose. I was melting down. Big time. As mentioned, I was trying to do all the things while worrying about my writing and dinner and Brain screaming, GO CRY, all at the same time. With everything going on at once in my head, it was hard to do anything at all. I got up from my desk and went out to the living room to cry but tried calling the charity that picked up donations that morning in case they accidentally picked up the boxes…but I hung up since I knew they were there before the order was delivered. Returned to my desk still frazzled and absolutely paralyzed by too much in my head going on simultaneously—like having multiple TVs on at once with different shows and no matter how hard you try you can’t focus on one and tune everything else out to take care of the first thing. That’s when I looked at the clock and realized I was late for my Adderall. That turned out to be the first thing. Then I did the next thing and the next thing and the next thing. By the time I was done I decided I wasn’t going to cook dinner. I told Chaz I needed to eat my feelings. What I realized later was, I needed the foods that were going to give me a good dopamine fix—burger (lettuce wrapped), fries, and a chocolate peanut butter shake that took me back to the KC Drive-Inn days—Waffle Hot Dog and an Ono Ono Shake with chocolate. Once I was done with the things, I focused on those last 60 words and getting to a place where I felt comfortable enough to stop for the day.

Later, as I was brain dumping in my Morning Journal I had another revelation. When I get overwhelmed like that it’s not that I can’t keep my composure as I order through everything and do it—if I was still working in a psychiatric residential treatment setting, I could. External controls had me able to do a 1 second freak out internally and then jump into doing what needed doing. I was very good at assessing the environment in a crisis quickly and deciding what needs to happen first, next, potential backup next, potential second backup next, and on and on. But there are no external controls for me anymore. It’s all on me. What it is is that I can’t keep my composure because my brain is short circuiting 24/7 and only dopamine can fix it short-term before I need more again. It’s wild to realize all these moments I’ve had before where I felt like I was about to break social norms because I couldn’t keep it together, that I was somehow defective because I lacked “control” and “patience” and blah blah blah…I think my fellow Neurodivergents know what I’m talking about. But no, they were true neurodivergent meltdowns that I cannot control. None of us can. It’s like expecting someone with a tic disorder to control their bodies to prevent tics. That’s not how it works and society needs to accept that their precious norms are ableist. Honestly, I’m done masking and pretending. I’m not going to do it anymore. It got me nowhere for decades and I was punished/abused for my neurodivergent traits—it’s a stunning eye opener to realize that and maybe even if I had been diagnosed sooner, adults and my emotionally abusive ex would’ve still acted as they had while telling me I couldn’t keep using my neurodivergence as an excuse.

For those of you not familiar with what dopamine has to do with neurodivergent brains, it’s the neurotransmitter that not only helps us feel pleasure, but how we think and plan as well. It’s not that we don’t make enough of it, we do. It’s that the dopamine we have is as ADHD as we are. It works like this: Dopamine Ships need to make it to the Dopamine Harbors for everything to run smoothing. The problem is our Dopamine Ships space out and miss the Dopamine Harbors disrupting what our nerves are able to transmit between each other.

I don’t know what next week will bring, but avoiding another meltdown like yesterday would be nice.

The Adderall Agenda

Photo of author holding up a tiny pill of Adderall between her thumb an forefinger in front of her left eye. She is wearing black-rimmed, rectangular glasses and a baseball style shirt with black sleeves and artistic images of each band member of The Linda Lindas in 4 square panels. The author has medium length dark brown hair parted in the middle, brown eyes, and tan skin with freckles.
One tiny pill can make a world of difference

I can’t pinpoint exactly where I realized I had undiagnosed ADHD but I can tell you a few things that kept leading me on this current path. Some years ago I got really frustrated with people being judged for being on their smartphones, especially when it was being used to call people “addicted.” It was around that time I learned about masking, a term that wasn’t used in either agency I worked for when I worked in the mental health field. It clicked that maybe I’ve masked my whole life which is why I tricked myself into thinking I didn’t have it. Then I realized, what if smartphones were actually taking that mask off for us. Have you heard the saying that we carry a computer around in our pocket. I carry an endless supply of dopamine hits.

I think it was 2018, I was at my integrative doctor for my monthly acupuncture at the beginning of December (it was the first week) and I’m on the table with a cloth gown on as she’s sticking needles in where she feels I need it. She always asks about what I’m currently writing, if I’ve done anything fun lately/have any fun plans for the weekend, and what I’m reading (because I always have a book with me). Because it was holiday season she happened to ask, “Are you ready for Christmas yet?” She was surprised when I said yes—tree was up and decorated and all the presents that needed to be mailed were wrapped and sent—and with genuine interest asked how I did it. “Panic.” She paused and looked at me with concern. I was rather shocked myself. It just came out of my mouth, but it was the truth. I had a plan in my bullet journal:

Day 1: rearrange living room, vacuum, get out tree and decorations, set up tree.

Day 2: decorate tree

Day 3: wrap presents

Day 4: box presents, create labels, set pick up date for boxes

Day 5: tape up and affix shipping labels to boxes, set boxes by the door

Day 6: set out boxes for pick up

That’s how my preparations usually go. I break everything up into manageable pieces, including housework. I don’t have a cleaning day. Every chore has a different day. Deep cleaning the kitchen gets broken down into several days. I don’t know how it happened but something in my brain went off and a real panic mode set in and I had to do everything NOW. And yes, it was early. My bestie is Jewish and her son’s birthday is before Christmas. So if I have to get all their stuff out before Chanukah I might as well get everyone’s done at the same time.

The shock of my answer stuck with me and all the memes and TikTok videos I’ve seen since then pointed with giant flashing arrows to ADHD, but I kept forgetting to ask my doctor if she knew anyone who does evals for ADHD.

Then the pandemic came, Chaz began working from home before Ohio locked down, and I settled into a nice little routine. I wasn’t getting everything done but I finally finished Tainted Love and sent it to my editor and was spending time in the morning on our lanai, reading and drinking my morning coffee before going for a walk and then fixing breakfast. When fall rolled around and it became too cold for me to sit outside, everything pretty much fell apart. And then (yes, there’s more), I sprained my ankle so bad it took months to recover and during that time, I kept it elevated as much as possible. That means I wasn’t doing anything but reading and binge-watching shows and movies.

When I returned to seeing doctors after getting fully vaccinated in March, my integrative doctor wanted to do a full set of lab work because this is the year I turn 50. Fast forward a couple of months and I’m sitting with her reviewing the results of the labs and she asks at the end, “Do you have any questions?”

“Yes! Do you know anyone who does ADHD evals?”

“You weren’t tested for it in school?”

I shrugged. “No one was looking at girls back in the 70s for ADHD.”

It was July before I was in my therapist’s office for the first consultation. I already had a conversation with the intake coordinator about why I felt I needed an evaluation and filled out several questionnaires for the therapist before that session. My biggest complaint was difficulty getting started in the morning. I would sit for hours trying to get myself going and nothing. If it weren’t for the meds I need to manage my MCAS in the morning, it would’ve been me not getting out of bed for hours. It wasn’t until after I felt the caffeine had kicked in that my brain would finally sputter and chug along like an old car on its last legs. I had difficulty organizing my mise en place for dinner and actually getting to where I could get into the kitchen to do mise en place, like there was a baby gate around my brain that fenced me in place. To compensate, I would start mise en place when I’d go in for a drink (it would end up being just one of many side quests in that particular moment): get out everything I need that’s non-perishable, if it was an hour or under before dinner should be ready, I’d get out everything. And with all that, I’d still miss things and not realize it until after I was done or in the middle when it was too late. If I was really lucky, I’d catch it before it was too late. To go along with the disorganization, I’ve been using a bullet journal for years. When I was still working in mental health, I used a planner and had a spiral bound journal I kept in my purse for lists and whatnot. Little did I know the latter would be called a bullet journal years later. So now, here I am using a bullet journal as a planner because random lists on notepads and Post-Its weren’t cutting it anymore. But was I really using it? I used to just do weeklies but it wasn’t working for me. I had already gotten rid of using a habit tracker because seeing it mostly empty was deflating and separating weekly chores from daily chores threw me into that panic mindset of “get all the weekly stuff done as fast as you can.” So that’s when I wound up assigning them days. I’m not constantly thinking, “do the vacuuming, get it done, you need to get it done. now do the windows, come on, do the windows.” But doing that meant I’d run out of the room some days, so then I switched to making dailies each week. This gave me a full page for my lists, any notes (usually of the medical variety), decorative stickers, and memory keeping. Even with all that, I would go days without checking it and when I would check, I would find I forgot something.

Back to the food/meal prep for a minute. Up until Celiac reared its head, I would grocery shop without a plan. Maybe an idea of what I wanted. If I did a list, I would forget to put something on it or I’d miss something on the list which meant many cross store trips to back for the thing if I was with it enough to notice. I don’t remember exactly how I started meal planning other than choosing what I wanted to eat ahead of time and then making the list, but I know I did it out of necessity because gluten would put me out for days. This is where I started to break down my lists into the store areas: protein, produce, packaged, dairy, and non(-food). I rarely buy non-food items at the grocery store now so if I need something it now goes under packaged and so does dairy because that’s a rarity these days too. When my doctor went over my labs with me, my A1C was borderline and my cholesterol was out of balance (but total is fine). She was very optimistic with the goals she set for me. And by optimistic I mean they felt like a fantasy. I was lucky if I could get myself to walk twice a week and I didn’t know then that it was ADHD related. The dietary changes she suggested were overwhelming. This is me talking. The one who has had to face so many food challenges that I’ve learned how to adapt easily. This time was worse than when she had me do the histamine elimination. The struggle felt like a windup toy that ran into a barrier, popped back, and ran into it again. Rinse. Repeat. In a moment of frustration, posted on FB that the low-glycemic food lists don’t include much non-Western foods. In came Cheryl like a unicorn riding a rainbow telling me the Plate Method (1/4 protein, 1/4 starch, 1/2 non-starch veg) is easier to use when it comes to non-Western foods. It unlocked a bank vault door. Everything became easier in an instant. Then I met with the dietician in my doc’s office and she liked what she saw in my food diary. The only thing she wanted me to do was use more coconut sugar and maple syrup instead of refined sugar and as much non-processed as I can. Basically old habits I got out of. She also told me about resistant starch, how the starch in rice and whole potatoes changes went they are refrigerated after cooking. This is one Asian used to cold rice. But snacking is my weakness. I will feel hungry and not be able to think about anything else or focus on my task once I think about being hungry and a snack. Hyperfixation, anyone? It’s also sensory. I can cut up all kinds of veg to have ready in the fridge and they still won’t be eaten because I will still want something after eating them. Years I ago I would get cravings for a specific food and it wouldn’t go away until I somehow appeased it. Apple pie? Make fried apples. No, eating an apple won’t do and I never really liked eating an apple whole but did because I was “supposed to.” But a mountain apple? Yeah. I’d eat those all day right off the tree. There were also times I’d be eating something and in the middle of chewing I’d want to spit it out and not eat the rest. I learned this is an ADHD thing. Or if something needed a lot of chewing, I didn’t want it anymore even if I liked it. I always thought I was weird for this but it’s totally normal for us neurodivergents.

My eval with the psychiatrist was scheduled for August but a week and a half before, I got a call that something came up and it had to be rescheduled, but it wouldn’t be until October. I was on my way home from my monthly acupuncture and pulled into a movie theater parking lot while talking to the person. I rescheduled with her and then sat there stunned after I hung up. I was looking forward to the appointment ever since my therapist said she thought I’d benefit from meds. I was getting little dopamine hits from that excitement. Then, POOF. It was gone. I wasn’t sure how I was going to make it another 2 months. I knew I would. I survived this long without ADHD meds, I knew I was capable of making it. But “survived” is the key there. I’ve merely “survived” for nearly 50 years. All the struggles in school with daydreaming/spacing, difficulty staying focused, difficulty keeping up with lectures and taking the right notes, not being able to copy things from the overhead projector fast enough before the professor changed it (1) I couldn’t remember enough at one time to write out big chunks at a time so I had to keep looking up and 2) what they were saying while I was copying would crash into each other like a surfer and their surfboard in wipeout while being thrashed by a set of waves), having to reread entire pages because something didn’t process (I still standby my opinion that my Social Psych professor was a terrible writer and her books we were forced to buy for her class were repetitive, but), math being taught in abstracts (algebra and geometry—don’t get me started, I won’t stop) but it clicked in classes like Chemistry, and the struggle meals before I knew there was a name for them (I could do an entire post on struggle meals). That’s not even a comprehensive list of the difficulties in school and college. The way I am and feel on meds right now, I could’ve thrived in educational settings and having undiagnosed ADHD is probably why I disliked school so much but could never explain why.

I got an unexpected call from my therapist a few weeks later. My psychiatrist had 2 slots open up sooner. Folks, I’m not kidding when I say I almost screamed. It was with glee that I scheduled a 9am Saturday appointment. Yes. 9am on the weekend. It was virtual so I didn’t have to get up my usual 2 hours before (to compensate for any time that I spend with fighting executive dysfunction and ADHD paralysis) and I wanted her to see me uncaffeinated in all my executive dsyfunctioning glory.

The morning of the eval I realized I had no idea what to expect and I was worried about technical difficulties with the virtual appointment. I was in my writing cave early, setting up my phone. In all, I think she asked me questions for 20-25 minutes–I forgot to check the time on it. One thing my therapist did was make sure I was paired with this particular psychiatrist who is also a neurologist and takes everything into account like functional medical doctors do. So, this means she understands my overflowing basket of chronic illnesses and we went through all of that. She settled on Adderall, having me take 2.5mg (breaking a 5mg in half) in the morning and 4 hours later for the first two days and then upped it to 5mg each time. Her first concern was that the fillers in the Adderall not trigger my mast cells—because there is nothing worse than your body treating something you need like it’s at war with an enemy (currently it’s warring with water, I hate it here).

Let. Me. Tell. You.

I fucking love it.

It’s a-fucking-mazeballs.

With my work experience and personal experience with medication, I know full well not to expect results right away. I know that sometimes we start with a med that isn’t the right one for us so we try something different or up the dose. I know that I might start with something that my mast cells are okay with and then a few days later it’s an all out revolt inside.

That didn’t happen though. And I’m damned lucky. And thankful.

On Day 1 I was able to interrupt a task (checking email) to take care of the laundry as soon as the dryer went off, then went right back to my task. This means, I got up when I heard the dryer go off and didn’t say to myself, “empty your inbox first, then get it” which would normally lead to me hyperfixating and forgetting I was supposed to take care of the laundry; AND I didn’t do a bunch of side quests while taking care of the laundry. Then, while switching over loads later on, I remembered I wanted to put up a Command hook in the kitchen for my aprons to increase the chances I use them (because object permanence is also an ADHD thing, if we don’t see it we forget about it). I interrupted my task, got the package of Command hooks in the hall closet and then went right back to switching over the laundry. And now I have my aprons hanging in my kitchen after I don’t even remember how long of “I should do this” running in my head. Several times during the day, I remembered I forgot to get a Vitamin Water while I was up as soon as I sat down. Popped right back up to get it without the usual negative self-talk that usually happens a minute later when I finally remember I forgot something. While posting this news on FB I forgot the “trap” part of “lint trap.” Normally, when my brain won’t hand over the word I want and makes me play hide and seek for it, it takes a long time to find it, if I find it at all. It really sucks as writer, especially since I know I have a large vocabulary. But as I was typing on my phone and hit that block I didn’t even try to look and intended to type “thing” knowing my friends would get what I was talking about. As soon as I made that decision, Brain handed over “trap.” I sat there thinking, “SORCERY!” Honestly, I thought that a lot those first few days. Because, wow. No wonder neurotypicals think it’s so easy to do things, stay focused, remember things, get organized, stop snacking/make better snack choices, etc. They aren’t constantly fighting their brains so it IS easy, but it has nothing to do with willpower. I opened up packages that came in that day, unpacked them, put the items away, and broke down the packaging to put in the recycling or trash. That doesn’t happen either. Packages will pile up, a mix of opened or unopened, until I finally unpack them all. I might or might not put the items away, sometimes they sit a pile until I do a declutter later. I might break down the boxes or I might put them near our recycling bin to break down later. I wrote that first day for the first time in what felt like forever. Ever since publishing Tainted Love, I haven’t been able to write. I’d open up Scrivener and just stare, like a car with a dead battery that won’t even attempt to turn over when starting the car. I didn’t just write either. I made my word count goal without taking all day. I was able to Google something for the story or check notifications on FB or Twitter and go back to Scrivener without falling down dozens of rabbit holes for hours.

Day 2 was a little more of a struggle. Day 1, I had some heart palpitations and I realized that it was likely the Adderall + my usual caffeine consumption, so I told myself to cut back on the caffeine. What I did was not have any caffeine at all—unintentionally—and so Brain decided to fuck with me at every opportunity. I still got things done, even writing, but I found myself fighting Brain more than I did on Day 1. Then, before I needed to start dinner, I needed a transition activity. Day 1 was a Sunday and Chaz cooks on the weekend and I didn’t need a transition activity to appease Brain before moving on to the next thing—that’s pretty significant too, the time I have now that I’m not needing that transition time between everything. But on Day 2, I wound up hyperfixating on the transition and started dinner late, missed prepping something and missed getting a few things out while doing mise en place. It was like I spent all day building a castle out of blocks around Brain and then Brain imploded and the blocks collapsed. I’m used to Brain imploding but I didn’t like that it happened after a productive day, even if I had to struggle for it.

Image is a meme in ten panels for a pain scale using classic paintings. Title reads: Which level of pain are you? First panel is an image of Girl With a Pearl earring and reads: 1. Vermeer, I feel a little twinge now and then. Second is an image of the Mona Lisa and reads: 2. Da Vinci, I can grin and bear it. Third is an image of Whistler's Mother and reads: 3. Whistler, I just want to sit here. Fourth is an image of a self-portrait of Rembrandt and reads: 4. Rembrandt, I've been better. Fifth is an image of a self-portrait of Albrecht Durer and reads: 5. Durer, Yes I'm in pain. I wouldn't be here otherwise. Sixth is an image a self-portrait of Van Gogh and reads: 6. Van Gogh, Can't talk... Seventh is an image of Dora Maar in an Armchair and reads: 7. Picasso, Something is very, very wrong with me. Eighth is an image of the Desperate Man by Gustave Courbet and reads: 8. Courbet, Morphene! Ninth is an image of The Scream and reads: 9. Munch, AGHHHHHHHHHHH!!!! Tenth and last is an image of The Mask with the Mustache and reads: 10. Dali, Not. Even. Human. Any. More.
The only pain scale I use anymore

Day 3 was the first day on the full dose. I noticed my chronic pain levels were down. On a good day, I’m Whistler or Rembrandt. Now, I’m down to Vermeer. After posting this on FB and Twitter and having someone on Twitter tell me their endometriosis pain decreased after starting Adderall, I went and Googled it. Turns out the stimulants are catecholamines which have analgesic properties. WHO KNEW? A happy side effect. This decreased chronic pain means I’m taking walks more often. No such luck in my period pain decreasing, but.

Day 4 included a follow up with my therapist by phone. I typed out everything I wanted to tell her beforehand, because I didn’t want to miss anything. To address things falling apart before dinner, because that’s when the midday dose of Adderall peters out, she had me start an afternoon dose. It was up to me to choose between 2.5mg or 5mg. I went with 2.5mg. Another huge difference. Dinner preparation went much better and I was able to pay full attention to the entire episode of What If? that we watched that night without picking up a device or a book.

I’ve been writing daily (yes, writers work weekends) and making my word count goal each day. I’ve toyed with increasing my word count goal but I’m going to keep it where it is for now since I’m using my reclaimed time to do extra chores and projects that have been put off for too long.

Later that first week was when I noticed the connection between hyperfixation and snacking. During the day if my stomach grunts its displeasure, I can acknowledge it and then keep on with what I’m doing. However, once the Adderall is out of my system. I can’t stop thinking about it until I have a snack in my mouth. I used to think it was weird that I would get specific cravings and couldn’t stop thinking about it until it satisfied with either the thing I’m craving or a close enough approximation. Now it all makes sense to me.

The start of Week 2 on Adderall came with a happy accident. I got up that day and told myself to do all the household tasks first and then get on the computer to check email and write while listening to the last day of MAM Fest. FOLKS. What. Is. This? It seems so simple, yeah? Do everything that requires moving around in one chunk of your day and do the sitting tasks in another. But if you’re neurotypical you need to understand that our brains don’t work this way. I see a list and there’s a big neon sign over it: DO ALL THE THINGS NOW. Which is why breaking down tasks into do this sometime this week and do this daily didn’t work. I wanted it all complete and that tracker fully filled ASAP. It’s like a short circuit in Brain got fixed. So now I finally have a routine again that works, that is flexible if I have appointments or something comes up, and doesn’t have me constantly trying to multi-task to get it all done. In another follow-up with my therapist, I told her about this breakthrough and she asked if I thought I could’ve figured out the new routine without Adderall. My answer was, “No. I’ve been trying to figure one out for nearly a year and never got it until now.”

That week I also noticed Brain is quieter at night because I’m getting everything done during the day. Not completely quiet. There’s still the running list of things to do the next day and in the future even though all of that is written down. The difference is the things that didn’t get done that day aren’t added in the mix with me telling myself to just do it and Brain throwing out a roadblock.

It’s a weird feeling of having half to sometimes mostly unfinished tasks lists daily (I use the Franklin-Covey key because I used their planners for so long) to now seeing everything with a check next to it, and in the case of things like working on my next book, a dot to show I worked on it and it’s still in progress. Monday I had a long list of things and in between my first and second dose I got so much done that when my friend Angelina asked everyone on FB what we were up to, I listed off everything I had already done and what I was about to do. According to her, I won Monday.

I. Won. Monday.

Other than all the personal wins, the best outcome of my evaluation is that in being open with my friends about it, those who have thought they have ADHD too are now in the middle of their own evaluation or looking for a provider to get one.

If you are struggling and think you have ADHD and have the resources/access, get that evaluation. It may take a few medication changes to find the right one for you but it’s worth it. It’s worth being able to go through the day without being in a constant battle with your brain; without feeling like you have ten tabs open in your browser and nothing will load even though nothing is wrong with your internet connection or router; without feeling like a cat that never sleeps lives in your head and bats around their favorite toy non-stop. We don’t have to be so tired all the time just from that internal struggle. We can live a full life and really thrive.

If you’re still on the fence or just now climbing onto the fence, here are some TikTokkers and FB pages I love:

Connor DeWolfe – TikTok

Catieosaurus – TikTok

The ADHD doctor – TikTok

@thepsychdoctormd

I couldn’t figure out how to duet this. Thanks @cosmopolitan #drsasha #adhddoctor #LeadWithLove #adhdinwomen

♬ original sound – The ADHD doctor

Harley Evans – TikTok

@harleyevans59

Hello from nerodivergent land, im back with masking pills! #comedy #adderrall #adhdlife

♬ Monkeys Spinning Monkeys – Kevin MacLeod

Jenn Has ADHD – Facebook

The ADHD Gift – Facebook

Another Chronic Disease For The Collection

Wine Tour 11

A selfie with #Selfie.

I started this post last fall—it’s long, so either settle in or be prepared to read it one part at a time. Little did I know back then that things would get worse before they got better. Life has been difficult. That’s life with chronic illness. For a long time I was clueless to the one festering under the surface. A rare one that most doctors don’t know about or only just learning about. I thought, along with my team of doctors, that I was just having

odd complications and flares of my known illnesses. My mouth and eyes were drier, almost as dry as they were before monthly acupuncture kept the Sjogren’s symptoms in check. The pain in my hands and feet, inflammation that could be tied to the inflammation causing the Sjogren’s to act up. The constant reactions to everything. And by everything I mean water and the minerals and chlorine in it, barometric pressure changes, mold, sinus fungus, various foods, plant and food phenols, seasonal changes, flowers, trees, grasses, weeds, and cold. Again, inflammation.

We weren’t wrong about the inflammation, we just had the wrong culprit.

Enter: Mast Cell Activation Syndrome.

My guess is I’ve had it for years, possibly my entire life, but the symptoms weren’t intense until March 2017. We flew into New Orleans two days after Mardi Gras for Dr. Cuz’s wedding reception that weekend. The typical allergic rhinitis started that first day only magnified by a million. Then came the plantar fasciitis roaring back like it wanted to be in the spotlight. It was followed by the worst menstrual cramps I’d had since starting on progesterone the year before. The day of the reception I was texting my cousin while fighting nausea and curled in the fetal position. Finding anything to help the symptoms in the middle of the French Quarter was difficult.

MCAS post 1

Jackson Square, French Quarter, New Orleans, LA

It was so bad that I couldn’t blog about anything I wanted to blog about when we got back. In fact, I couldn’t blog at all that year about all the great food I had while traveling.

Treatment with my team of doctors helped with my recovery and, after a few months, all was good. As good as it can be when living with multiple chronic illnesses.

Things took an about face in October 2017. I was glutened while flying out to L.A. At first I didn’t realize it was gluten since my reactions are normally silent. I’m pretty sure this means I ingested a significant amount. All I know is I was nauseated before landing in Salt Lake City and nothing was helping that normally does (mint & ginger). Waiting for all the passengers to board the second plane, I was sipping on ginger ale when a woman drenched in perfume walked by. That was it. Over four decades of flying and I used an air sick bag for the first time. At this time I still didn’t know I was glutened. Vomiting has never been a symptom for me. I wound up in the bathroom sometime after that, vomiting some more and then that was it. I was worn out and haggard, unable to nap on the short flight to Burbank.

MCAS post 3

In Heaven at Hogwarts. Yes, I had a Butterbeer. It was just as good as I imagined. And yes, I had Pumpkin Juice. Not as great as Butterbeer but it was cold and refreshing for the scorching heat.

It was the next day when my fingernails split vertically, which is usually what happens a month or two after being glutened, that I knew what was wrong. So there I was, on vacation and visiting with friends trying to get over the worst case of glutening I’ve ever experienced before the big day at Universal Studios, which was the main reason for going to L.A. I wanted to celebrate my birthday there, even if we went the day before, because 1) I hadn’t been to the Wizarding World of Harry Potter, 2) going there with Auntie Boogie is something we would’ve done to celebrate our shared birthday together—she was a major Potterhead and was the reason why I read the books, 3) Darth Vader was really into Harry Potter at the time and I knew witnessing his joy would make one more birthday without Auntie Boogie would suck a lot less, & 4) I’ve been so used to sharing my birthday that I like making it about someone else sometimes.

MCAS post 4

After getting queasy on The Forbidden Journey ride, I couldn’t tell if my stomach was angry about the ride or if it was telling me I was hungry. Turns out it was the latter. Felt better after a delicious and filling gluten-free lunch at The Three Broomsticks. I went to Universal with a list of all the gf options at every restaurant/kiosk around the park which made it easier on all of us.

I tracked down some charcoal in Orange County right before meeting up with a childhood friend and soul sister, Rad. I’m not sure it did much good but I took it for a few days anyway. I made sure, at least for the first few days, that I was eating healthier than usual. This meant at least one trip to Sun Café, one of my favorite places to go when we’re visiting my bestie.

MCAS post 2

Rad and her girlfriend (now fiancee) surprised me with Chocolate Decadence to celebrate my birthday early after an amazing gluten-free lunch (Loaded Veggie Tamale) with a spectacular view.

MCAS post 5

Lemon Ginger Burst at Sun Cafe.

MCAS post 6

Lettuce Tacos at Sun Cafe

I left L.A. sick. I remember spending a lot of time upon our return trying to recover but not really getting anywhere and taking a lot of OTC meds. Then I thought I felt well enough to stop the meds but as soon as I did, I was back at Square One. So, I started the meds again. Felt better for two days and stopped them again. Hello, Square One. Nice to see you again. That’s when it dawned on me that I wasn’t sick, I was reacting. That’s when I made an appointment for AAT. I left that appointment with a long list of things I was reacting to, pretty much the usual for me but this time all at once.

About the same time as our return is the when the pain in my hands and feet started daily. My doctor and chiropractor were stumped because it was in my joints and was worse in the morning but would usually abate after a few hours. It was so bad even gross motor skills were difficult. Even if the pain lessened by midday sometimes it wasn’t enough, making writing impossible most of the time and resulting in texting Chaz that takeout for dinner was necessary because I didn’t feel safe holding and using my kitchen knives to prepare dinner. Picking up a glass with both hands was sometimes iffy.

While this was going on, the plastic straw bans came up, as did renewed fervor for grocery stores to end their pre-prepared vegetables and fruits (peeled oranges, spiralized vegetables, etc.) and I spent a fair amount of time defending these things to friends and strangers alike. Having personal experience added weight to my argument that these are still necessary things. They give greater access and freedom to disabled people. Those days where holding a glass with both hands was iffy? Give me a plastic straw if we’re out. I’m not about to drop my drink and spill it everywhere because I can’t keep a good grip on my glass with two hands. Food-based straws mean people with food allergies can’t use them. Metal straws heat up from hot liquids, causing burns, and poses a danger to those who have tics and will involuntarily bite down on them—same goes for glass and pasta straws. Paper straws disintegrate too quickly and disabled people have been vocal on how this poses a danger to them aspirating on the wet paper. Reusable straws are great for those of us who have full use of our hands. However, those who are using straws because they can’t hold a glass are not likely to be able to wash them properly. I even Instagrammed a photo of a reusable straw of mine that is part metal part silicone—it came apart because the brush it came with is too big and got stuck. There were times I was using those pre-prepared vegetables knowing I wasn’t going to be able to use my spiralizer because the pain and inflammation in my hands would make it too difficult. Peeled oranges, as ridiculous as they may seem to able-bodied people, give disabled people the freedom to have an orange when they want one where they would’ve had to wait for someone to do it for them. And as my friend keeps reminding me, they allow family members of people with citrus allergies the ability to enjoy oranges without getting the oils everywhere and potentially triggering their loved one’s allergy symptoms. Keep that in mind when these things come up.

In January, my doctor mentioned low-dose naltrexone during my monthly acupuncture after I rated my pain that day rather high. I believe I put it at an 8. I had been up long enough for me to be able to have some function to get dressed and drive to the appointment but my hands were still bothering me. I have a great relationship with my current doctors. The integrative doctor I see monthly knows I don’t want to take medication unless I have to, so to her surprise, I said yes to LDN right away. She was expecting me to go home and do research on it. Only I didn’t have to. I had done it before when friends and fellow gf bloggers had started taking it themselves. I had forgotten all about it until she brought it up. It took a few months before the pain lessened on a regular basis. Most mornings I was able to wake up and not struggle with using my hands, or walking. There was still lingering tenderness in my knuckles, though. I still wasn’t writing much and I was still lacking spoons to do all the things. Keeping up with cleaning was about all I could manage. No extra exercise. No traveling. Even the thought of planning and packing for a trip was exhausting.

MCAS post 7

Loading doses of LDN from left to right: 1.5mg, 3mg, and 4.5mg

The allergy treatments continued weekly. Headaches. Dehydration. Inflammation. Pain. Rashes. Uncontrollable itching. Gastrointestinal pain (Xenomorph trying to tear its way out of my abdomen level pain). Upper gas—that’s what I called it because I didn’t know what else to call it because it wasn’t heartburn or reflux, just a feeling like I had to belch and if I let out a good one it would be over; unfortunately I usually resorted to GasX because it would become painful. Every time we thought we were making progress, I would react to something and that would open me up to reacting to five more things.

Then, one blessed August morning last year, the doc that does the allergy treatments brought up mast cells. It was something the founding doctors of the practice had recently learned about at a conference and brought it back to the rest of the practice. He said, “Basically, they cause you to react to things that aren’t normal.” “That’s me!” I exclaimed and then we both laughed.

Some of the symptoms of Mast Cell Activation Syndrome (MCAS) are:

  • Allergies, asthma, and anaphylaxis
  • Hives, flushing, itching, rosacea, and other skin rashes
  • Swelling, pain, and tingling in hands and feet
  • Blood pressure issues (can be high or low), high heart rate, palpitations, dizziness, fainting
  • Abdominal pain, gas/bloating, nausea/vomiting, GERD, diarrhea/constipation, liver fibrosis
  • Red and itchy eyes, runny/stuffy nose, other sinus symptoms
  • Chest pain and throat tightness, trouble breathing
  • Autoimmune disease, trouble recovering from infections, slow healing of wounds, blood cell abnormalities
  • Irritability, anxiety, depression, vertigo, insomnia
  • Fatigue, obesity, abnormal weight loss
  • Interstitial cystitis

In a nutshell, when mast cells activate is they flood the body with histamines. Light bulbs went off. There were times this year where breathing became difficult for no apparent reason. During my last appointment with my integrative doctor, I described it as feeling like someone was tightening an already too tight corset on me. One time when it got real bad last summer I took a Benadryl. I don’t know why I thought it would be a good idea since I tend to stay away from it. Sjogren’s + Benadryl = drier than a desert. But it worked. I was able to breathe once it kicked in. Same with heart palpitations. Again, I don’t know why I thought to use it but it worked. Turns out that’s what other “masties” usually use when mast cells are triggered.

In my searching, I discovered there isn’t just one medication for to help manage it. There are different classes of drugs that doctors use. I started with an H1 antihistamine: Claritin. And it worked. I was feeling better. For about a week. Then one day I just felt like crap. Pressure was pressing in on me from all over. It sucked big time. So much that I complained on Facebook that mast cells are assholes. A good friend has a son who had mastocytosis and told me Gastrocrom helped him a lot. The active ingredient in Gastrocrom is a mast cell stabilizer, one of the other classes that is used in treating mast cells. But she told me I also needed an H2 antihistamine since I was only taking an H1. I took a screenshot of a list of the H2s and told Chaz to pick one of them up for me on the way home from work. He brought home Zantac. In less than an hour, all the pressure was gone and I felt great again. So great that two days later I went for a walk for the first time in a long time, then some jerk ruined it by catcalling me.

I went to my next appointment with my integrative doc and chiropractor telling them how great I felt and how I was able to do things I hadn’t in a long time, that I was able to get shit done and walk on a regular basis. I wasn’t using eye drops and Biotene on a daily basis for dry eyes and mouth. The following week was my yearly checkup with my rheumatologist and discussed the new diagnosis. Despite feeling great, my labs came back with an elevated sed rate—inflammation was still happening somewhere in my body.

It only took a few weeks for that “feeling great” high to come crashing down. This is kind of like trying to get use to Adrenal Fatigue Syndrome. Figuring out how much I can manage without setting myself back from overdoing it. But I’ve also got triggers that I have no control over and as some masties explain, we can take every precaution but if our histamine bucket is already full any trigger will send us into a reaction no matter what. The week of my next monthly acupuncture breathing was difficult and I wound up taking a lot of Benadryl that week. Headaches. Pain. And then the night before my appointment, generalized anxiety.

The last few years I’ve been dealing with generalized anxiety not knowing it was a mast cell reaction. I thought it was because I work from home now and don’t have to deal with being out in public with other people all the time like before. One time it got so bad in the dentist’s office that I felt like crawling out of my skin and right on out the door while I was in the chair waiting. There’s no reason for me to be anxious there. I’ve been going to this dentist since we moved to Cincinnati. That should’ve been my first clue that something serious was going on. But I’m adept at masking things and if it’s not a major interference in my functioning then it’s not a problem.

I had Chaz pick up NasalCrom on his way home from work. The nasal spray I was using wasn’t working at all and NasalCrom’s active ingredient is a mast cell stabilizer. It helped but not to a great degree. The difficulty breathing and anxiety ratcheted up right before bedtime. I hate taking Benadryl before bed because I feel groggy the next day. I took what I thought was the next best thing: CBD oil. It took the edge off enough for me to get ready for and get into bed, but falling asleep was still difficult. At some point after I finally fell asleep, I woke up gasping for breath and in an absolute panic. I don’t know how I didn’t wake Chaz up. It was then that I gave in and took a Benadryl.

I was glad when I was finally on the table talking to my doctor the next morning. Explaining everything that I experienced that week in as much detail as I could, as well as letting her know about my sed rate. Because of the inflammation, she went with their protocol to have me start Palmitoylethanolamide (PEA). It’s an OTC supplement so I ordered it as soon as I got home and started it as soon as it came in. It’s helped a lot, but mostly with the anxiety. I haven’t had a major anxiety attack since I started it. It was earlier this year that a research scientist who runs a group on Facebook firmly told the group (because it had come up in a post), mast cell disorders cause anxiety. It really never hit home for me until she said that even though I had a list of symptoms that included it.

This past winter was difficult. Even though I was feeling better and able to keep up with household tasks, there were days when the pain and inflammation were still bad. The cold didn’t help. Winter felt like a months long reaction that I had no control over other than weekly AAT to help. I also developed a rash that was barely visible on the back of my hands and the sides of my fingers. It looked just like the rashes I would get when I was having an IgE reaction to gluten, eggs, or any other food. AAT wasn’t really helping with the rash like it’s done in the past. I remembered the group members of the previously mentioned Facebook group recommending Magic Masto Lotion to everyone who asked about how to treat skin reactions. I had to order the Vanicream (but any really thick lotion without a lot of additives can be used) but within two days I had some mixed up and it was at least helping to reduce the itching and preventing further spread.

The beginning of the year my integrative doctor gave me an ultimatum, do the low histamine diet or she wouldn’t consider more meds. She had brought up the diet in October and I cut out some high histamine foods (coffee didn’t last long) and decreased the frequency in how often I ate others. With my birthday and the holidays approaching, I didn’t want to be in the middle of an elimination diet.

Reluctantly, I sucked it up and removed all high histamine foods (and drinks). Much of what I had to remove from my diet years ago and was able to slowly reintroduce happened to be high histamine (again, another clue that none of us knew at the time the testing was done). This was probably the most challenging elimination diet ever. It doesn’t help that there are so many lists online that vary to minor degrees from each other. My friend Cheryl Harris, a dietician and fellow gf blogger, sent me the lists she had that I compared with what my doctor gave me and this is what I wound up removing:

  • Alcohol
  • All forms of chocolate
  • Soda
  • Coffee
  • Tea
  • Aged, smoked, cured, canned, and processed meat, poultry, and fish
  • Leftover meat, poultry, and fish. (and later any leftover veg cooked with acceptable dairy products)
  • Bone broth
  • Pickled, canned, fermented, and soured foods (including gf shoyu, condiments, olives, sour cream, buttermilk, yogurt, kefir sourdough)
  • Aged or raw cheese
  • Dried fruit, strawberries, raspberries, citrus, avocado, cherries, banana, papaya, pineapple, mango, and plums
  • Tomatoes, spinach, eggplant, pumpkin, mushrooms, and commercially prepared salads
  • Chickpeas, soy beans, and peanuts
  • Walnuts, cashews, sunflower seeds
  • Eggs (especially egg whites, some can tolerate a small quantity cooked in food)
  • Cinnamon, chili powder, cloves, anise, nutmeg, curry, cayenne, baking powder and other chemical leavening agents, yeast
  • Tartrazine, benzoates, sulfites, MSG, nitrites, and food coloring

 

I was absolutely miserable. First, I was constantly hungry and for this reason I almost stopped before I was done with week two. Second, I was obsessing over what I could and couldn’t have and truly felt I was heading into eating disorder territory because I was afraid to eat. Third, I was afraid to eat because I was still having reactions during or after meals. There were days I didn’t eat breakfast because I didn’t know what to eat. Some mornings I made grits (lots of butter) or oatmeal (but I missed the heavy doses of cinnamon and dried fruit). There were also days in which I didn’t eat breakfast and by the time lunch came around I didn’t want to eat but I would get lightheaded and forced myself to eat. I knew this wasn’t healthy.

I realized that while I couldn’t have bacon, I could have pork belly. So I went to Whole Foods—the only place I can find it in my area, even the small market with a butcher down the road from us doesn’t carry it—and bought a couple, sliced them up and froze them so they were ready for mornings or for use in dinner. At some point it got less stressful, but it never got easier. I think the hardest part has been to only cook what is needed for the meal instead of making enough for leftovers to have for lunch the following day or to freeze for later use. I’ve relied on leftovers for my entire adult life and it’s just weird not being able to make a big pot of stew or soup and freeze it for another week, or to heat up leftovers for lunch the next day. I felt like I was spending all my time in the kitchen cooking and then cleaning up with little time for anything else. Reality: it wasn’t all my time, just a significant amount more than usual.

Because the reactions never really stopped while all the low histamine foods were out of my diet (even the rash on my hands didn’t go away), I asked my doctor at the end of February for a mast cell stabilizer—Gastrocrom. She agreed without us needing to discuss it because she knows I don’t ask for meds unless I truly need it and after years of using only alternative medicine to treat this (even if we didn’t know what we were treating in the beginning) I needed to be able to function again. I had to stop writing. Every time I sat down to work on Tainted Love, I would work on scenes/chapters, sometimes for days, and then realize that what I spent so much time working on wasn’t usable. Brain fog sucks. While writing, I didn’t have the ability to ask myself the questions I would normally ask myself as I’m working so I wouldn’t spend so much time on something that won’t survive the editing process. Instead, I did a lot of cleaning/reorganizing, reading, and binge-watching. Some of that binge-watching might’ve included daily viewings of Aquaman and Spider-Man: Into The Spider-Verse (hapa representation!) as well as To All The Boys I’ve Loved Before, Searching, and Crazy Rich Asians (Asian representation!).

My prescription was called in and then I waited. It took several days before I got a call from a pharmacy tech. She asked if I was aware of the cost of the med and I told her I wasn’t. After insurance was applied: $1,327.55. After. Insurance. And this was for cromolyn, the generic for Gastrocrom. That’s more than our rent and utilities. The tech told me to look for coupons online. I went to pick it up later that night, coupon in hand, only to find that using the coupon meant it would cost more than using insurance. Our healthcare system is fucked up, folks. I was at the pharmacy for a good half an hour as the pharmacist double and triple checked her math to make sure I needed all the ampules and that the coupon was indeed worth less than I was told it would be. She asked me if there were any other alternatives I could take and I answered that the only other mast cell stabilizer is Ketotifen. She and the pharmacy tech both had that “yikes” look before she said, “Yeah, that’s even more expensive.” Tell me something I don’t know. I broke down at the counter while she was back at her computer and then again in the car before going home empty-handed. The entire time I had been doing the mental math. There was nothing I could cut from our budget that would suddenly make a med costing $1,327.55 per month “affordable.” The only way a med that expensive would be affordable is if we were billionaires. I left with printouts of the prescription and the receipt that included how the prescription was filled. I was going to have a lot of work to do.

MCAS post 8

Fo’ real kine.

Have I mentioned that stress is a trigger for a mast cell reaction? It is. The following morning I felt horrible. I had trouble moving. I could feel the inflammation in my body hindering it from doing what I needed it to do. If I’ve learned anything from years of chronic illness, it’s to listen to my body. I did nothing all day. The worst part of that stress reaction is I had already successfully reintroduced eggs. Instant reaction to eggs as my breakfast because my histamine bucket was already overflowing.

The day after I felt better enough to start tackling the issue of acquiring the cromolyn that I knew I needed without dipping into our savings. I called the pharmaceutical company to make sure they didn’t have a patient assistance program (there isn’t one listed on their website). “We already sell our products to pharmacies at wholesale,” was the excuse I was given when I was told they didn’t have one. I really wanted to retort with, “That’s what every pharmaceutical company does and yet others manage to still have assistance programs,” but I didn’t want to stoke the stress reaction. I just find it hypocritical to state on a website that you strive to provide affordable medications and yet at least one of them isn’t.

I had crowdsourced suggestions the mast cell group on Facebook, I was specifically looking for how to get the insurance company to cover more of the med. Several people suggested getting it compounded. I wasn’t sure I could get that done and I really didn’t want to pay for shipping through the pharmacies some were suggesting, because I really wasn’t fond of paying for shipping for my LDN that was being filling by a compounding pharmacy in Florida. However, I stuck that information in my back pocket.

Next, I called the insurance company’s specialty pharmacy and wound up being transferred to the company’s regular pharmacy after being told they didn’t handle that med. Turns out the specialty pharmacy does handle the med but the guy at the regular pharmacy I was transferred to helped me out anyway. It was going to cost over $900 for them to fill the same prescription. The difference being if I filled through them my co-pay is 25% as opposed to 35% for other pharmacies (if you do the math, it would be over $5K per month without insurance). That was still too expensive for me. The guy, trying to be super helpful, made the same suggestions as my pharmacy’s tech that I spoke to two days before, even though I kept telling him that I already tried that and it was more expensive. While I appreciated his help, I found myself more frustrated when I kept telling him I had already looked into something he suggested and yet he continued to go on about it. Have I mentioned I really don’t like talking on the phone the way I used to anymore? Blame the years of waiting on hold while I was a case manager trying to do Medicaid recertifications. I’m talking hours of waiting.

Before logging off my computer and deciding I had enough for the day, I shot an email off to the pharmacy that compounds my LDN, asking if they compound the med I need and how much it would cost.

I never heard back from the pharmacy and started a search for a local compounding pharmacy. I contacted the wrong location of one and they were supposed to forward my question on. I say “supposed to” because I never heard back from them either. Turns out, there’s one a couple of miles down the road from me and the pharmacist who responded to my email was not only helpful but made sure he had all the specifics in order to convert the liquid dosage into a capsule dosage and give me an accurate estimate, which turned out to be just over $300 per month. It’s still high but I wouldn’t have to touch our savings to pay for it. He contacted my doc to get an updated prescription and I decided that when my LDN ran out, I would start getting it filled there.

Could I have afforded the original prescription? Because surely the deductible kicks in, yeah? Just fill it and once the deductible kicks in there’s no copay. I did the math. It’s still cheaper to pay out of pocket for the compounded version I’m getting, plus it’s easier to take than opening 8 ampules 4 times a day to add to a liquid to drink. The pharmacist said the capsule would be better if I want it to work systemically, which is exactly what I needed it to do.

MCAS post 9

One month of compounded cromolyn.

The day of my next AAT appointment, I told my doc about the stress reaction and then the reaction to the eggs the next morning. I had since been fine with eggs but he had me remove them again for a month. Like the silent reactions I have with gluten, mast cell triggers can do the same. Taking away the fuel for the fire would help quell the histamine production.

Meanwhile, I was expecting the cromolyn to take a few months before I noticed anything. However, within a few days I noticed my sinuses were clearer. I made the mistake of stopping the NasalCrom and the nighttime dose of Zyrtec because then spring hit and I turned into another hot mess of sneezing, itchy and runny eyes, stuffy nose. I added back the NasalCrom and second dose of Zyrtec. I also turned all the air purifiers in the apartment back on. I had stopped using them last fall. AAT saved me once again.

While I felt the cromolyn was working as it was meant to, I could still feel the inflammation working to keep me from being as productive and functional as I could be. At the beginning of May, I asked my doc about adding in a COX inhibitor. Inflammation in mast cell patients is often caused by excessive prostaglandins. I knew and felt the inflammation in my body, it is like being trapped in a cloud. Whenever I woke feeling the pain and inflammation was higher than usual I would take an aspirin and the cloud would lift. I could’ve asked for testing first but knowing that the aspirin works and the testing for prostaglandin levels being iffy, with the validity of the results being totally dependent on whether or not the sample was handled at the right temperature from collection point to testing point. I already knew the aspirin worked, it was a matter of discussing it with my doctor before taking a daily dose and whether or not aspirin or celecoxib would be most appropriate. I had already asked the Facebook group what their experience with a regular dose of aspirin was and it was mostly positive, the rest either had side effects (without telling me what their dosage was) or they were judgmental about taking more meds. One person asked me, “Why would you put more toxins in your body?” BECAUSE I FUCKING NEED THEM TO FUNCTION! I didn’t reply with that but I was blunt in letting her know that her judgment wasn’t welcome or even an answer to my original question. Do I want to be taking the shitload of meds I have to take? No. Would I be taking them if I didn’t have to? No. Have I tried alternatives? Hell yes I have. I’m not going to walk around not wearing either my glasses or contacts all day to make functioning more difficult. Why would I deny myself the ability to function because medications are demonized? I wouldn’t. It’s one thing to ride out a cold or a mild sinus infection without cough syrup or antibiotics, it’s another to do without a meds for chronic illnesses, physical and mental.

After discussing it with my doc—which included educating me on how high a dose I’d need to take for me to experience side effects—I started low dose aspirin (81mg) with the instructions to take a regular dose (325mg) as needed. My executive functioning has improved, I can order my thoughts a bit better, I don’t feel the inflammation all the time, my knuckles aren’t tender 24/7, and I’ve been able to start doing Morning Pages again.

It’s not all sunshine and roses now but it’s better. I can tackle longer To Do lists that I schedule each day in my bullet journal. I’m sleeping better, almost 8 hours a night, thanks to the LDN and a weighted blanket. The additional sleep I’m able to get every night as opposed to 6-7 interrupted hours nightly helps combat the physical stress every day. I know how elusive sleep can be, battling insomnia for decades, and I wish more doctors would take insomnia seriously rather than just telling us to get more sleep in the same way they tell women to lose more weight in order to resolve whatever symptom is interfering with our functioning. I also don’t need to take Benadryl PRNs as often as I was before the cromolyn and aspirin.

All I can do is continue to take it one day at a time.

 

RESOURCES:

The Mastocytosis Society

Mast Attack: Educating People About Life With Mast Cell Disorders

Magic Masto Lotion recipes – I made the one using NasalCrom.