It Starts With a Sneeze
I’m trying to write this while in the very beginnings of a mast cell “event”, which means typing between sneezes because as I said before, my degranulation episodes usually start with sneezing. I’ve counted fourteen – make that fifteen – in a row now, so I’m almost there. It’s usually no more than 20, but enough to make it known to me and everyone else that my mast cells are NOT happy. If I can stop it now, things won’t progress.
Right now it’s happening because I waited too long to take my morning dose of meds, because as you probably know if you have MCAS or mastocytosis, we are always just a few pills and potions away from mast cell hell.
Anyway, I am grateful I do have medicines that work and I did take my ten little (well, not so little) yellow pills that I filled myself with just the right amounts of mast cell stabilizers to get me through until this evening, so they should be kicking in anytime now. It’s funny, as soon as my medicine kicks in I get a big sneeze and then I know I’m about to feel better. Does anyone else get that?
Soon the brain fog will clear, I’ll be able to breathe freely again and my joints will stop aching like an 90 year old. My skin will stop burning, the little hives popping up here and there will disappear and I’ll feel much, much better.
Until it wears off and we go through this all over again.
I know there’s probably not a huge audience for a blog specifically about mast cell disease but after seeing my last website about this topic’s popularity grow exponentially over a three year period a few years ago, I have a feeling there are more people out there looking for information about living with MCAS and mastocytosis from a patient’s perspective.
Being born sick, I unfortunately have a lot of experience living with mast cell activation and now that I know what it is, I can clearly look back and connect so many dots all the way to birth, health-wise. I was in and out of hospitals for many years in early childhood, always sick with random things from head to toe, and never a solid answer why.
Until five years ago (I’m 51 now).
And while MCAS or mastocytosis explains why we are sick, I still like to dig further and find out why we have mast cell disease to begin with. There has to be a root cause, because it seems to run in the family and there’s not a lot of research out there on that so I feel driven to try and connect my own generational dots, if only for my own curiosity’s sake.
I also love reaching out to other patients or those who are sick, can’t get a diagnosis, all the tests come back “normal” and yet they’re still getting worse, year after year, with zero idea why. I’ve helped many people figure out that their mast cells may be wonky, like mine, after being contacted by them through my old website.
It did get overwhelming back then, I was getting 10k visitors a day, mostly for the doctor directory, but I did manage to help provide a lot of support for quite a few people and I honestly miss that. I remember feeling so alone and lost when I was at my worst, and I feel so lucky to have found Dr. Petty and the diagnosis that changed my life. So I want to pay that forward as much as I can.
It does mean striking a balance, though, because I get attached to people and I am very empathic so it can affect me badly being so involved with other sick folks. Some people with this disease are far worse than I ever was and it’s heartbreaking. Since strong emotion is one of our triggers, I have to balance myself and sometimes distance myself from the worst of it which can make it hard to be a full time advocate.
Still, just writing and blogging about my personal experiences as well as throwing some research in here and there can help someone else out there, I’m well aware of the power of the internet, so it’s worth it to me to do this and hopefully help just one poor lost soul out there who is “allergic to the world” and doesn’t realize that there is help. Just a few years ago I was almost bedridden 24/7 but today I manage quite well.
I’ll be sharing what I’m using on another post, and I’ll link to the specific brands and medicines I’m using (most are OTC) but if you’re reading this and hoping that what works for me will magically work for you, too, then please realize this disease is so complex that many of us have to find our own personal cocktail of medicines and foods and lifestyle changes to make it work, so there really is no one-size-fits-all approach.
The good news is, we tend to find relief using the same things (quercetin, aspirin, H1/H2 blockers) and I’ve already done the legwork of finding the cleanest, purest forms of these I can find because I react badly to fillers and other ingredients. So hopefully my hard work will help you find what you need to feel better faster.
Anyway, like I said, that’s a future post. Also, please remember this is not medical advice, just my own personal experiences living with mast cell disease.
Why People Don’t Believe Us
One of the worst parts of being sick and not having a diagnosis for so many years meant that anyone who knew me either suspected or flat out knew I was “faking” my illness. It’s not uncommon for chronically ill patients to be accused of hypochondria or malingering, and to be honest I can’t be too angry because looking back, it did look on the surface as though I was “thinking myself sick”.
Once I finally found my immunologist, got diagnosed and began treatment (and saw an immediate positive response) I was able to finally begin to process the trauma of going undiagnosed and often unbelieved for so long. After decades of medical disappointments and experiences that also left me traumatized, I had practically grown numb to being treated as a head case but it did feel good to have the ability to be able to say, “I told you so!” if I wanted to. I just didn’t want to by that point.
Anyone who stuck by me, like my husband and son, were still by my side and everyone else had gotten the boot anyway. I honestly don’t have any tolerance for abusive people and would rather be utterly and completely alone than to deal with assholes, unless I absolutely have to.
Still, I do get it. I remember wondering if an acquaintance was faking her “chemical sensitivity” issues years ago, before my own got so bad, and sometimes I wonder if that’s karma for me for doubting her. Who knows, but I do know that I believe you if no one else does. Mast cell disease causes the craziest symptoms that can make YOU look crazy, but you’re not.
You’re not crazy, you’re not faking and you’re not alone. We’re both just sick.
That doesn’t answer why people are quick to dismiss us and I honestly don’t know. As someone who has an invisible illness I’ll always be doubted but I’ve learned to not care what anyone else thinks. It has been the best medicine I’ve found so far (well, after quercetin and gastrocrom lol).
All it Takes is One
Anyone with chronic illness knows that having one person in our corner can make all the difference in how we handle our lot in life. Over the years I’ve met so many people with mast cell disease or chronic fatigue (CF/ME) or a number of other debilitating, chronic conditions like mine and it seems those of us who fare the best are the ones with support.
Not necessarily an entire support system, either, because those are more rare than you think, but just someone – a spouse, a sibling, a friend, a neighbor – who is there for them unconditionally, believes them (one of the most important parts) and can help arrange rides to the doctor, etc.
For me it’s my husband who has stuck by me and seen me through three decades of mast cell hell. He’s known me since I was 12 years old, though, and watched me struggle over the years, especially after we were married and went through three pregnancies together, so he knows I’m not faking this disease. I do have some who still call me a hypochondriac behind my back, but for the most part no one acts like that who is allowed into my inner circle anyway. I don’t have time for unsupportive people and there are far too many like that out there.
My son has me, which is good in the sense that we both understand what it’s like to live with mast cell activation even though we have slightly different triggers and our symptoms manifest a bit differently. After all, he’s a 30 year old man and I’m a pre-menopausal woman at this point who can’t wait to see if the end of my periods means final relief from the worst of this.
That’s the other thing, all it takes is one bad period and I’m knocked out for weeks afterward. Or one skipped dose of medicine, then I’m spiraling back into mast cell hell. Or one hidden trigger lurking around, ready to pounce. Or…
You get what I mean. I hope you at least have one person on your side to get through this madness. 💜
MCAS & COVID: My Experience
When COVID hit, my husband lost his job and at the same time I lost my old website, MastCellDisease dot com because without his income I couldn’t continue to pay the cost of upkeeping servers as well as paying for the security that website needed since it had been hacked multiple times. Popular websites are always targeted and mine was no different.
It was just before the lockdowns, when I was still active on Twitter and before the pandemic really took hold when the hubs got sick first. He usually recovers quickly from things but this time he was really, really sick. It was at the end of January 2020 and I remember we were concerned he’d need to go to the hospital because his lungs were so, so bad. So we figure he had COVID then looking back now.
I also started to come down with whatever he had before his got bad and even tweeted about it (which is probably still there if I log into my old account to look). I mentioned it was unusual because since my MCAS has gotten worse, I don’t get sick. I’m always sick, of course, but I no longer get flus or colds because when they come around, my hyperactive immune system seems to fight them right off.
So I put this tweet out that it was weird I was feeling like my first cold was coming on in years, and actually thought it was maybe a sign I was actually getting better (sounds weird, I know) and had a reply from one of the doctors I used to interact with there who told me to use salt water in my netti pot right away because he found it to be the best remedy to stop a cold in its tracks.
So I took a hefty dose of my regular meds before bed (quercetin, aspirin, h1/h2) and I flushed my sinuses out and woke up completely normal. No hint of a sniffle, except my normal morning pre-med mast cell one.
You can tell the difference between a cold/flu sniffle and a “normal” one for us lol.
While the hubs continued to deteriorate I went on like normal, taking my meds and feeling just fine. Had I known my mast cell stabilizers could have helped him immensely I’d have given them to him but he pulled through eventually and recovered, almost fully.
He still has residual lung problems and you could say he had “long covid” afterwards for several months but overall he’s back to normal. Neither of us have ever had COVID again (if that’s what it was to begin with).
I’ve not had a cold or flu again since then, either, but neither has he so hmmm… 🤔
What Does Mast Cell Degranulation Feel Like?
One of my most popular posts on my old blog described in detail what it feels like to degranulate. I can only speak for myself, but after meeting so many of you with mast cell disease over the years I learned that this is pretty relatable to most of us.
Mast cell degranulation is in many ways a slow-motion anaphylaxis, for those of us who are “leakers” that is. Some patients have full on, sudden anaphylaxis and that’s different. Some of us call them “shockers” (even though many of us both leak and shock). I am mainly a “leaker” which means I don’t get sudden attacks usually but am almost always suffering from at least one or two symptoms of anaphylaxis all day every day.
Anyway, at my worst, degranulation goes something like this:
It usually starts with a sniffle or with my eyes starting to water. Then I’ll begin to sneeze. I will sneeze dozens of times without stopping. Depending on the source of the trigger, my stomach may begin to ache and I get queasy. Then the mucus attack begins. It comes from everywhere mucus is produced, in quantities that defy physics, and it erupts all at once making it hard to breathe, swallow or just, you know, exist.
I can spend twenty minutes blowing my nose and on the toilet expelling the mucus but it just keeps coming until I get mast cell stabilizers in me. The emergency inhaler and my cromolyn nasal spray is my first line of defense. Then I try to drink some gastrocrom to stop the gut thing.
Those don’t always stop it from getting worse, though, although it can because sometimes degranulation is like a cascade effect so stopping it early can prevent it from getting bad but if the trigger is bad enough, then these only stop the mucus onslaught. It takes using extra aspirin, quercetin and Benadryl along with my H1 and H2 blockers. A warm bath followed by a blast of cold helps, too, which I’ll talk about in another post.
At some point the POTS kicks in and I get dizzy and my mood drops like a rock. I can go from happy-go-lucky to clinically depressed in minutes and I just want to lie down in a dark room because suddenly lights, sounds and even the feeling of my clothes on my skin begin to cause pain and distress.
If I get dizzy enough, I’ll pass out and sometimes if I pass out and my head isn’t completely flat, I’ll have a seizure.
And itching. Oh, my god, the itching. Even my eyeballs will itch and I have to be careful not to scratch myself until I bleed. When I do scratch, the dermatographia kicks in and I can do “skin writing” on myself which is fun.
I usually get painful, deep hiccups at some point and the nerve under my eye begins to twitch. My gums will start to swell and bleed and my skin starts to turn bright red, like a sun burn that comes from inside out and starts deep in my bones. Sometimes hives will begin to pop up in huge patches, often in random places.
By now the brain fog is setting in so I forget why I’m suddenly so sick and will even ask outloud, “what’s wrong with me?” usually right before the ice pick man shows up to start randomly stabbing me. That’s probably the worst part of it because the pain is so directed in one spot, just like being stabbed.
My abdomen swells and I can look eight months pregnant in seconds, which is also painful. The swelling doesn’t always happen, usually with a food trigger, but sometimes for other things. Anything I’ve eaten liquifies and it’s excruciatingly painful there and in my bladder, too. It feels like I have a bladder infection but now I know it’s just sterile inflammation.
It also feels like I have an ear infection in one or both ears and they will hurt so bad. Sometimes I get ringing in my ears, but usually one or the other one will “turn off” in the same way my vision in one or both eyes will go wonky. I will see sparks and other weird light effects, my eyelids themselves will twitch nonstop and sometimes my vision will “pop”, meaning it will go out and then slowly come back online. It’s hard to describe but it’s annoying. My son gets orange vision, which seems to happen to some of us, too.
So by now I am an itchy, red, inflamed and allergic mess who can’t remember her name or that I even have mast cell disease or that a few pills, puffs and a douse in some cool water usually brings me right out of it without having to use an epipen. I avoid using those unless it’s dire, and while there were times I probably should have injected myself, I survived and now do what I can to prevent a full blown degranulation episode if at all possible.
Which means living a very strictly controlled life. We grow most of my food, I work from home and I avoid public places as much as possible which is thankfully easy to do living next to Yellowstone.
Like so many of us I am triggered by dozens of things and can’t prevent getting triggered, of course, so at the first hint of signs I will take extra meds or use my nasal spray and inhaler ahead of going into a store with fragrances (which I generally avoid doing). My daily meds do a fair job of keeping everything in check so I don’t use my emergency meds that much anymore but at first I was using them a lot.
Hopefully someday none of us will need mast cell stabilizers, but until then, I sure am glad they exist. They’re my life saver.
What is degranulation like for you? Feel free to share in the comments.
Mast Cell Hell & The Holidays
Anyone with mastocytosis or MCAS can attest that the holidays are the worst time of year for some of us. The added stress, change of seasons, a barrage of smells, foods we want to eat but can’t have (but probably sneak some of anyway and then pay for it later)… ugh! It can be a nightmare.
This year I did pretty well mostly because we’re empty nesters now so my holidays are much less busy and my symptoms overall are more controlled than ever. I’ve worked out the right medicines to take (I use mostly OTC in combination with a couple of Rx meds) and recipes I can use that don’t trigger me that also keep everyone else happy because they taste delicious. So no one is made to go without here just because my mast cells want to be assholes. 🙄
It took forever to fine tune my cooking, though, and the fact that my son who also has MCAS has different food triggers than me makes it unbearably difficult at times to make meals we can eat and enjoy together. Finding foods that we can enjoy period has been a huge journey and now that we’re on the other side of it I am happy to share my experiences here just in case it helps one other person out there suffering from this insidious disease.
In case you are one of those people, I hope your holidays were degranulation free, too, and that you’ve managed to find a way to live through this time of year with as little pain and suffering as possible. A few years ago I wasn’t sure I would live to see another holiday, or if I even wanted to given how much pain and suffering I was enduring at the time, so I understand if you’re also struggling. If you are, just hang in there. I’m living proof you can successfully manage mast cell disease but it does take patience, persistence and a whole lot of stubbornness.
It also helps to not go it alone. 💜
Excuse the Mess
As I get this new website set up, I’ll be blogging randomly throughout the day and maybe several times a day some days depending on how I feel. Once I get into a groove I’ll probably post updates two or three times a week on the blog but I do plan to set the website itself up to be much more than just a blog.
I’d love to rebuild my old site which shall remain unnamed just to not give it clicks, and I might use it as a template for this one. I’m not sure yet. I just know I want to reach out to anyone who may be struggling with mast cell disease or any chronic illness who may feel all alone.
Sometimes just having a fellow voice in the wilderness can make all the difference.
I will be adding disclaimers (something I have to do since this deals with a medical disease), links I love, books I recommend and more. So keep an eye out for that and I’ll definitely update here when I add important things.
I Don’t Have the Energy for This
But I’m doing it anyway! Hi. I’m Chelle B., and you might remember me from a few years ago when I had a rather popular website all about mast cell disease. It was a treasure trove of information for those of us with mastocytosis and mast cell activation syndrome. It even had a directory of doctors and a private forum and.. well, then COVID came and spun my world for a loop so I let it go.
Sadly, I can’t get it back but I did manage to grab this domain name which used to belong to another victim of mast cell disease. It was where I first came when I was just beginning my journey and it’s where I found solace in the vast amounts of information this website had to offer as well as validation that I needed so badly.
I wasn’t crazy. I wasn’t “thinking myself sick”. I wasn’t alone anymore. I was, though, still in mast cell hell.
When I tried to log on the first time after the website disappeared I was devastated as I’m sure many of my loyal readers were just a few years later when my own popular website went down without notice. With our disease, one never knows if a patient has died or has become too sick to reach out online. It happens way too much and that’s partly why I wanted to get back into blogging and connecting with people in the mast cell disease community again.
There are so many people out there suffering alone who haven’t had a diagnosis yet and have no idea that there is hope. I am living proof of that. In a future post I’ll tell my story and share my journey toward finding relief from the worst of my symptoms so I can have a much better quality of life than I had before.
While there is no cure for mast cell disease, with the right treatments and specialists, we CAN get better. I promise.
Since I’m starting brand new again, please do me a favor and subscribe, share and comment to help me boost my website back in the rankings on Google so we can help connect with others out there who need us. Remember back when we were desperate for answers and had nowhere to turn? I hate the thought of anyone else feeling that way so maybe together we can create one more outlet for reaching others who are also in mast cell hell.
God bless and talk to you soon.