This week, I got normal people sick.
Luckily, I noticed the second my lymph nodes started to swell, because I am hyper aware of my body. I took a Benadryl right away.
Then I sat on the couch and contemplated if I was dying, because last time I got the flu I legitimately almost died from anaphylaxis.
However, I know catastrophic thinking is bad, so I decided to distract my thoughts by cleaning my condo. (Also, because I like to return to a clean home after near death experiences.)
Unfortunately, I started shaking from a low-grade fever and bronchospasms started stabbing me in the chest. I knew I should probably go to the emergency room to be tested for the flu, but sometimes I have to argue with the doctor just to receive fluids. The only certainty is the $100 copay.
I checked the wait time at my urgent care. None. Only a $25 copay. So, I drove to urgent care, which is literally one block away.
When I told the urgent care doctor that I was worried I had the flu and I have mast cell disease, she googled mast cell disease and told me I have a rare disease.
Fortunately, I held my tongue.
Unfortunately, my skin began to prickle.
So, I took another Benadryl.
I realized the doctor was terrified of me when, for the third time, she asked, “But you’ll know if you need to go the emergency room, right?”
I convinced her to order the flu swab test.
When she left the room, I looked in the mirror. Deep purple, bruise-like hives covered my face, neck, and chest. My lungs spasmed and I gasped for air. I needed to go to the emergency room.
Luckily, there was an emergency room across the street.
So, I ditched the urgent care and heaved myself through the darkness, snow, and winter air.
Although, it kind of felt good to be outside, because my entire body was burning.
Once I was in the hospital, I was totally disoriented and had to ask for help getting to the ER. The walk seemed a mile long, and I considered laying down on the floor until someone brought me a wheelchair or bed.
When I got to the ER, the staff was extremely nice. They escorted me to a bed, placed an IV, and gave me medicine right away.
Unfortunately, that medicine included steroids.
After several hours, my reaction went away, and I went home.
And now I owe $125.
The following day was Pi Day, and because I was pumped full of steroids, I was able to eat pie.
Because I was pumped full of steroids, I ate a concerning amount of pie.
Oh man! That’s intense! I’m sorry you felt so horrible!
At least your bill wasn’t too high. $125 is still a bunch of money, but it could have been way worse.
Any story ending in the ability to eat pie is a good story 🙂
I am so relieved to hear I am not the only one who cheats on food when steriods are involved! Other than there living saving deal…that eating thing is the best! Hang in there!
I just found your blog from a post on the EDS support Facebook group page. I think I love you. Seriously, thanks for sharing your story.
Aww. I’m blushing! … or flushing?!
HAHAHAHA omg this made me laugh so hard.
Does anyone who’s been diagnosed with mcas as i have have chronic horrific burning and ulcers in their mouths? On gums( ulcers) that never go away and a lump in the back of my tongue they see on ct scan and can
Yes. The key is to figure out what is triggering it. Usually it’s a food or drink. Squishing liquid Benadryl may help.
Thank you, i question if its all mast cell as it literally os present constantly, but does get worse on certain days….thank you…will try to figure it out!
Thank you, yes early on in this they gave me every mouth remedy imaginable including magic mouth wash which has benadryl. Will keep trying stuff andclook for triggers
2nd of 1 comment, and can feel by papating but refuse to biopsy it as one very skeptical ent biopsied another very tiny greyish looking area and said no inflammation even though my tongue stays so swollen they cant see my throat! And
They have found chronic inflammation.on my tongue on biopsies in 2014 but in 2016 took a very tiny piece from a grey spot and a very skeptical ent who was more empathetic till she read my gastro reports which no doubt made me sound nuts as they could find nothing major , so then she treated me like a crazy nut. Was before my mcas diag, if anyone has any tips about this mouth biz plz reply!
How awful for you. I live in England so if I need urgent care or need to be treated in A & E is free, and I suppose we are used to it here. But to think you’ll be charged all the time is awful and can put you off seeking help. 125 is a bit of money too. Glad your better.
These mast cell are expensive! Thanks for reading.
I love the way you think and how you aren’t afraid to laugh about it. It’s the best way to get through it. Thanks so much for sharing! I love this blog.
Dr u first meet don’t really no you so they should not make a decision about period what meds work for why rock the boat to many drs like t many cooks is a wide open door for major mistakes that can be fatal or unnecessary test n quick to cut no thank you Roland Seymour cares a book it’s a pill book to see what can’t be taken together she at M metro main campus she made the mistake the two meds can cause bleeding lucky for I had more knowledge the her what they need to do is Listen n n get to know you n your medical history