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.


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