LindsayFair warning: I am likely going to drop an expletive or two in this post, because I’m very annoyed. Current frustration level: F-bomb.
For mast cell activation disorder (MCAD), I take a medication called cromolyn. Actually, if you want to get technical, its “cromolyn sodium oral concentrate”. It consists of these little tubes filled with clear medication that come latched together in a discreet package. Discreet shiny, glittery, crinkly “let me see how many people I can make stare while I open this shit” silver package that could be used in place of a mirror if you’re ever stranded in the desert and need to signal a passing search helicopter.
Each silvery packet is then packaged in a larger cardboard box – large enough that it doesn’t fit with the other prescription bottles at the pharmacy and you have to direct the pharmacist behind the counter where to find it. “It should come in a big box. No, it won’t be with the other prescriptions ready for pickup. I think that’s it in the corner, over there on the second shelf. The second shelf. No, the second shelf. The shelf below the first shelf. Yes, that second shelf. It’s right there next to someone’s giant bottle of – what does that say? – OH. Well this is awkward.”
The boxes are only about a square foot, but the three that I am given at each order weigh enough to set off the seat belt alarm in my car. Sometimes I like to put a hat on the boxes so I don’t feel like I’m driving around talking to inanimate boxes wearing a seat belt.
I mean, in the event I were to actually talk to them. Because I don’t. No, YOU’RE crazy.
The little tubules in each shiny packet are squirted into a glass of water, although apparently the amount of water with which they should be mixed is some state secret that cannot be disclosed at my current security clearance level, because NO ONE WILL TELL ME. Are we talking an ounce? A trendy BPA-free water bottle full? Should I just get the hose? I have no idea.
Sorry, I digress. So, you squirt the tubules into some *undisclosed amount of water*, stir, and drink it straight (not on the rocks). It’s all very bourgeoisie.
On July 30th, I ran out of cromolyn. Naturally, I called the pharmacy to refill the order. It typically takes a day or two for the pharmacy to special order the prescription as they don’t keep any on hand, so I knew it would take a few days. I’m trying to get better about ordering it when I start to get low so I never run out, but I have been busy spending countless hours researching what new toy I’m going to buy my dog. Don’t judge me.
So, five (FIVE) days later, the pharmacy calls to tell me they’re out of cromolyn, the manufacturer is out of cromolyn, the world is out of cromolyn and we’re all going to die. Maybe they just said the first two, I pretty much stopped listening after that.
I called a few other pharmacies in the area. They’re out, too. I’m starting to panic a little. At that point, I had already been without cromolyn for almost a week.
Cromolyn is one of those medications I don’t realize is working until I’m out of it for six days, and every inch of skin on my body starts to burn. It feels like a bad sunburn, except I’m not a gorgeous lobster-red, and I didn’t get to spend the day chasing my dog or making out with the BF on the sand. Then it starts to itch. Then I get a rash. Then I get stomach pains and digestive issues and am constantly clutching my stomach as if in labor.
It’s kind of sexy.
So, I sent a casual email to the drug manufacturer that produces cromolyn to see if it was true that there was a shortage in production. It basically went like this:
“Hey man.
I’m just, you know, inquiring whether you guys are really out of cromolyn. My overbearing pharmacist said you were, and I’m just, you know, seeing what’s up. Whatevs, no biggie.
Peace dudes,
Linds”
and NOT like this:
“Dear fuckers,
WHEREISMYCROMOLYNFORTHELOVEOFGOD. GIVE IT TO ME NOW. You have one job – How can you be out of the drug that you manufacture???? It’s simple – JUST MAKE MORE. Don’t make me come down there.
Sincerely,
Lindsay N., Esq. Attorney at law.”
Yeah. Not at all like that.
After calling every other pharmacy in the area I could think of, a chronic illness friend or two suggested calling the mail-order pharmacy. I feel like some of those mail-order spouse companies could really hit it big if they included drugs free with your spouse. Although if that was the case, I’d have like 12 husbands. And maybe a couple of wives. I’m really not picky when it comes to free meds.
So I called Express Scripts, and apparently they’re the doomsday preppers of the medical world, because they have a shit ton of cromolyn. Awesome. Can I have the assholes friendly neighborhood pharmacist at Rite Aid fax you my order? Great.
Assholes Friendly Neighborhood Pharmacist at Rite Aid says that’s not how it works, Express Scripts has to call them. Express Scripts says that’s not how it works, I need a new prescription from my cardiologist. Cardiologist says no, the script was just written three months ago and they can’t write another. Insurance company says no, I can’t have two outstanding prescriptions for the same medication with two different pharmacies.
Explain to insurance company I’m switching to mail order pharmacy and they can shove the other pharmacy order up their ass ignore the other order. Insurance company says Done. Cardiologist says okay, they’ll write the script if the other is cancelled. Express Scripts says “Give it to me, baby” (uh huh, uh huh). So now I’m pretty fly for a white guy gal.
Two days pass, Express Scripts says Cardiologist still hasn’t sent order. Cardiologist says bite me, yes we did. Rite Aid calls and says, “hey, guess what. That prescription you wanted filled? We have it in stock now. But we can’t fill it for you anymore, because you said to cancel it. Just called to tell you. Oh, and I did your mom last night. Love you! Buh-bye.”
Meanwhile, Manufacturer responds to my paranoid pleasant inquiry and says yeah, there was a shortage, but we should have cromolyn soon. And, from your email we can tell that you’re a very beautiful, intelligent, put-together lady who is not at all crazy.
Aaaaaand that’s where I’m currently at. Twelve days without cromolyn. Like I said, Frustration level: F-bomb.
I found one last glorious silvery packet of heaven cromolyn hidden in my desk at work, but I can’t bring myself to open it. Because then I would really be out, and what if there was an itchy/burning-related emergency? Besides, once my order is finally filled, I’m going to open that silvery packet and slowly and seductively empty it all over my body and bathe in that shit.
With an undisclosed amount of water, of course.
“I know not all that may be coming, but be it what it will, I’ll go to it laughing.” – Herman Melville
Smell ya later.
– Linds
Ok, I also looked up the water question in my fancy special pharmacist drug references. I’m not sure what the definition of “a glass of water” is, but the FDA seems to think those are sufficient instructions. 🙄 In all seriousness, I think 8 oz is fine. I hope you are able to get your supply soon! I can’t imagine how awful you must be feeling! 😔 Your conversations sound an awful lot like the arguments I’ve been having with absence management at my place of work for the past year and a half…😒
oh, then i’m definitely doing it wrong 🙂 i take it in about an ounce of water, and shoot it down like it’s vodka.
Lol, you’re probably fine. If the FDA doesn’t see fit to specify the information on volume of water, I don’t think it’s really all that important in the grand scheme of things!
PS- community pharmacists can be incredible a**holes. That’s why I work in a hospital, where we learn to loosen up when you realize what’s going to save a patient’s life and what really doesn’t matter.
right?? i loved Gary, my pharmacist before I moved to my new house. not impressed with my new pharmacy at all.
All of this awful story!! Our lives, so many phone call and the time “on hold” and I do this for all kinds of meds, and lately certain manufactures too now–that was a joy to figure out and learn. I get to do this for my daughter and feel so sorry for all the people/warriors who have to do this BS for themselves!!!
UGH!
it shocked me to find out that the manufacture was out. don’t they account for supply and demand?? sorry to hear you have to go through this kind of thing, too!
I have yet to figure out the undisclosed amount of liquid either. My packages clearly say to dilute it…but not in how much. My PCP who also takes cromolyn said she just takes it straight – like, squirts it directly into her mouth – and had no idea about diluting it or how much water to use. (I asked, because I have every symptom of gastroparesis but they won’t diagnose it as gastroparesis…in any case, it takes me *forever* (i.e. several hours) to drink a full glass of liquid, so I was hoping I could take it in less than a full glass of water. Which apparently people do…but is it safe? Still no idea.) In any case, I now usually take it after squirting it into about 2 oz of a beverage because that’s as much as I can get down in a reasonable amount of time before a meal. And I just use whatever beverage I have on hand…which is rarely water because it makes me choke for some reason. It still seems to work well enough. Though my latest batch of cromolyn (a 3 month supply, which is stacked in a giant tower in the spare bedroom) is just in smaller boxes in squat little vials, instead of stuck to each other in foil packets. Yay for no crinkly foil packages, but so much less transportable. Sigh.
Oh, and I have given up on local community pharmacies because they have messed up my order so many times. My doctor writes a specific NDC down so I can get the right formulation of a med…and they ignore it. I go to pick up my cromolyn and go through the drive through (because it’s a Walgreens and the horrible perfumy smells inside trigger me) and they haven’t even given me the first box and are already expressing annoyance about having to pass three months of cromolyn, one box at a time, through the drive through window. “Can you just come in and get it?” Oh sure, I’m sure it’ll be no problem at all for me to carry 3 months of cromolyn through your smelly store, on crutches, and not have anaphylaxis. *rolls eyes*
thanks for your comment, Elliot! i only take cromolyn in 1-2 ounces of liquid as well. i don’t like the taste, even diluted, and figure i would rather get it over with quickly.
i have had such issues with local pharmacies lately as well! they’re always dirty, long lines no matter what time i go (and with POTS, i don’t DO lines), they don’t have my order when promised, and their customer service is awful. do you use a mail-order pharmacy? if so, are you happy with it?
OMG I DON’T THINK ANDREW AND I HAVE EVER LAUGHED SO HARD IN OUR LIVES!!!! You should really be a stand-up comedian if it weren’t for the fact that you have POTS and would pass out after the first joke 🙂
You are truly TRULY an amazing person!!! We’ve had a lot of the same (idiots) pharmacy/physician
issues too, so can TOTALLY relate, which makes your post even MORE hilarious!!!!
I hope you have your cromolyn sodium by now LMAO, but possibly not, which is a very good possibility.
We LOVE you to pieces, Linds.
You are THE BEST, bringing tears to our eyes as I yell, Andrew! Andrew! Another post from Lindsay! And I read it out loud as we die laughing and you make our week!
Hugs and love from us both!!
Keep up the WORLD’S BEST BLOG!
glad you enjoyed it! no cromolyn yet. on friday i received an email that it would ship on saturday. saturday i received an email that it would ship on monday. yesterday i received an email that it would ship today. so any minute now, i’m sure i’ll receive an email that it’s shipping tomorrow 🙂
I few years back a company that manufactured many vital generic drugs went bankrupt and their plants stopped producing. They were the only manufacturer of MANY generic drugs, drugs that no one else was making. I remember reading about how there was a shortage of several cancer-fighting meds. Unfortunately, one of my rescue meds for migraines was on the list. I was frantic for a year because no one had my one med. It was a horrific experience. I really fee for you…
wow, i’m so sorry to hear that! a whole year without a migraine med must have been awful!
Wish I’d kept my Cromolyn so I can send it to you. I think I have one packet from when I tried it a few years ago, so let me know if you really get desperate.
I have MCAS and this was hilarious in a very “not funny” way! I, too, have run into the There Is No Cromolyn Anywhere wall. I use the inhalation kind, but still…there is none to be had and I am suffering. This must be illegal.
Hi linds, in Australia I take mine (sodium cromoglygate) in powdered capsule form.
That’s interesting, I had no idea it even came in powdered form!
This is the best! Way to revel in the humorous absurdity that is our broken medical system. The undisclosed amount of water is so ridiculous! I researched and researched and finally found a reference to a half dose of chromolyn that mentioned it should be diluted in half a glass of water and then it said….drumroll…. half a glass is four ounces!! So whatever top secret agents have been trying to keep the specs of “glass of water” under lock and key made this one tiny slip up and now I know – by a “glass” they must mean a cup which is 8oz.
So glad someone finally discovered the secret! Thanks for sharing it with us!