The other day I was scrolling through FB and came across this article describing a newly discovered syndrome consisting of the combination of autonomic dysfunction, allergies and tissue abnormalities.
I immediately thought hmm.. can’t help but think that could easily translate into a little known, but widely undiagnosed triad of diseases called dysautonomia/POTS, MCAD/Mastocytosis, and Ehlers Danlos.
I emailed the author and told him so. He agreed the joint laxity syndrome is likely Ehlers Danlos, but asked what POTS and masto were.
I explained what they were and all the common things we’ve all been misdiagnosed with.
How we come to these conclusions when we do our own polls on support groups/pages.
Never heard back after that.
Hello all. As some may or may not have noticed, I’ve been MIA (masto in action more like it) lately. One of my biggest triggers is my monthly hormones. Since I got worse in October 2014, there’s been only one month that my menstrual cycle hasn’t sent me to emerg.
My hematologist and I discussed starting hormone replacement therapy in hopes of eliminating my cycle all together, therefore avoiding the cyclic fluctuations of essentially poisonous hormones in my blood.
Being deathly allergic to your own body’s reproductive cycle is like an episode of Twilight Zone. Miniseries more like it.
At first it caused a flare in estrogen which was what we were trying to abolish. I eventually ended up being admitted for a few days. Was supposed to be longer but I ended up sneaking out. That doesn’t come as a surprise to anyone reading this that has (tried) being admitted for masto.
I was adamant that we were going to stop the Lupron. It was taking me down. My hematologist however, encouraged me to continue and in fact UP the dose to that more consistant with prostate cancer trearment. Somehow I ended up saying ok and we continued the shots.
Im super happy to report that I havent had a cycle in 4 months!! I still have flares and attacks but it’s not as frequent. At first I could NOT stop sleeping. I mean I sleep a lot, but it was intense!! 16 hrs wasnt unusual. Which felt even stranger because I was coming from having horrible and short sleeps.
I still have bad fatigue, but it’s not like it was thankfully. So now I will start the task of catching up on everything thats been going on the last few months….
On Monday, July. 13tb, I went to see my therapist at the Cancer Center. Afterwards I wanted to pick up a prescription I had forgot. When I went to pick it up, I found they had added 3 Lupron injections to my bag. I guess they were in. It was time to try dose 1…
Nervous would be a gross understatement to how I felt about getting the first shot of Lupron. It’s easy for people to tell me to just try it, and I know I had to, but they’ve never experienced the reactions and attacks I’ve had.
I had just completed a month of the oral version medroxy/progesterone, which instead of getting rid of my period, I got 2 heavy ones in 2.5 weeks and I also went to emerg 3 times. Once in an ambulance. One of the attacks required an epi pen for blood pressure drop, but the others were full on GI attacks, with sweating, vomiting, diarrhea, palpitations, syncope etc. So the thought of having a concentrated version jammed in my arm that’s stuck in my system for a month just wasn’t sitting right.
I had it done at the daycare unit at the cancer centre. Where they do primarily chemo, but hormone therapy as well sometimes. For me it was mainly just in case I had a reaction. It felt fairly sureal to walk in there.
The nurses were a cut above, and were incredibly kind and thoughtful. I was thrown off when they were sad and apologetic that kids were clearly not happening for me. That part of it never really crossed my mind, and certainly didnt bother me.
I stayed 30 minutes to make sure nothing happened, and then they let me go. I was so relieved I didnt react. Yet.
I had brought things to do to pass the time, but ended up just staring at the old vhs tv and out the window. Wondering about all the other people who have sat there and imagining all those who will.
Accepting a shitty diagnosis takes awhile. And that`s ok. It`s different for everyone.
For me I was somewhat prepared like I think most of us are by the time your bone marrow biopsy results come back. How could it NOT be systemic mastocytosis at that point. You`re prepared to hear the words, but not how they will make you feel.
When she came into the exam room, she sat at the computer and got right to it, pulling up my chart and saying that the results came back with what we both expected, I had systemic mastocytosis.
We discussed medication I was already on and the ones I would need to start, and the need for a medic alert bracelet.
At the end of the consult she said I also had high eosinophils and said she was still waiting for the rest of my genetic results to determine if Imatinib/Chemo would be an option for the eosinophilia and mastocytosis.
I didn’t care what we tried, I just wanted to stop having the attacks that had started happening frequently and severely.
A week or so later I called to ask her secretary something about a test I was going for and instead she put me through to my Dr. So I knew something was up lol.
She started by saying she had the rest of my results and was going to transfer my treatment to the cancer center.
I guess I expected there was a chance I would see an oncologist because they specialize in neoplasms. But I didn’t expect to be at the cancer center for some reason.
I only remember bits and pieces of what she said after that. Mainly “A malignant diagnosis can be beneficial because you can apply to the Luekemia and Lymphoma Society for financial assistance.”
It was just like some people say. As soon as the `c-word`is mentioned your brain diverts somewhere else and the rest of the conversation takes a back seat to your now racing thoughts.
It hasn’t fully sunk in yet. It`s been 2-3 months. But I`m making my way through the stages and I`m letting it happen naturally because I am making my way through, and that`s what matters.
It doesn`t consume every waking and sleeping thought like it did at first.
I`ve gone through denial (somehow still thinking it wasn`t permanent even though I knew it was).
I`ve gone through anger. At my doctors, family, friends etc.
I`ve gone through sadness. Feeling hopeless and alone and like everything was grim.
I’m not saying I don’t still have all those feelings here and there, but for the most part I think I`m moving into acceptance now and I just want to go back to my life more than anything.
But I know I can never go back to the life I had. And although I’ve managed for over ten years with this, things are a lot different now.
The main difference is I wasn’t “shocking” until recently.
It’s hard getting “used to” that. And the concept that it’s going to happen for the rest of your life, and can kill you.
It’s traumatizing and it’s only been in the last few weeks that I’m not as terrified of it happening any time, any place.
The first time it happened to me was November 2013, I was a flight attendant and I was alone in a hotel room.
Sat up at 230am and ran into the bathroom in time to throw up blood everywhere and have simultaneous uncontrollable diarrhea all over the floor and towels.
Then I started sweating really bad and feeling this weird super hot sensation all over inside. My skin turned bright red everywhere, my heart was pounding out of my chest and I felt like everything was shutting down and I was going to pass out.
I tipped over onto the floor and just laid with my face on the cold tile and breathed heavy and gasped, my mouth was so dry and my chest was so tight. Trying to concentrate so hard on staying calm and conscious and not blacking out which is what I felt like doing.
I eventually was able to get up and stumbled naked, groaning, covered in vomit and feces (and not for the last time unfortunately) to the other end of the hotel room. I couldn’t form a coherent thought.
Then I had the urge to lay star fish on my back on the carpet. So I did.
Slowly things started going back to normal. I started getting chills from the sweats, the flushing went away, my heart stopped pounding and was just racing, I didn’t feel like I was going to black out, my cramps and nausea started lifting.
I knew that I wasn’t out of the woods though because WTF was that all about and what if it happened again?!
There’s a whole second part to this story but I’ll save it for another post. This was just the first time it happened and was a look ahead to what would happen almost a year later when I suddenly had that happen even worse 3 times in one week.
I never would have guessed that a year and a half later I would be writing about it on my website about a disease I had never heard of.
But here I am, and here it is, and this too is all part of the process of accepting my new life with anaphylaxis/shock and 2 chronic cancers as permanent life partners.
I hope this post helps let others with this know they aren’t alone, which is something we all want. It sucks, and it’s scary, but you aren’t alone.
I’ll never forget the day I suddenly had allergies. And I mean suddenly.
I grew up in small town, rural Saskatchewan. I spent a good portion of that time at my aunt and uncles farm with my cousins.
We were always having feasts of fresh veggies and fruits from the gardens. We used the ATV and a trailer to drive around to all the gardens and collect everything that was ready to pick.
Fast forward. I’m 20 yrs old. I’m living in Calgary and working at the airport. My boyfriend at the time and myself decided to spend a nice fall Saturday off, at the farmers market.I bought fresh raspberries and peaches.
I was laying on a pull out couch in the basement of his parents house, watching some trash daytime tv show I can’t even remember what it was. Time to dig into my fresh delicious fruit!
I started pigging out on my raspberries and peaches. A few minutes later I noticed I was rubbing my eyes a lot, and the more I rubbed the worse it got.
Finally I realized something wasn’t right and I got up to look in the mirror. I remember yelling out some expletive and then yelling for my boyfriend to come downstairs.
I had hives all over my face. All over and around my eyes, and all around my mouth.
My boyfriend yelled when he saw me and then laughed, and so did I. I didn’t have any swelling just lots and lots of hives.
He drove me to the nearest clinic and as soon as the receptionist looked up and saw my face, she took me straight to the back despite the full waiting room. Another peak into the future.
The Dr gave me what I know now was a shot of epinephrine and then I laid in an exam room for half an hour until it was safe for me to go.
The next day I reheated some mac and cheese for lunch and then sat on the couch to have a peach. I had still not attributed the hives to the fruit as I ate them regularly for 20 yrs. I assumed it was fertilizer or something and thought I would be fine if I washed it really good first.
No sooner did I swallow the first 2 bites of the peach, I was making a mad dash for the bathroom. I hardly made it there in time to bring it back up. Just the peach. It was the weirdest thing. Obviously it was the peach and not chemicals.
I had heard of people developing allergies as they got older, so I presumed I was now one of those people. But Really? This sudden? And peaches? After all these years? But I love peaches.
In the coming months I also discovered that I was allergic to every other thin skinned fruit with pits or seeds. So apples, plums, nectarines etc. It sucked!
I can only handle melons, bananas, oranges and grapes to an extent.
I started having allergies to carrots, almonds, peas, cranberries, cherries…how was I supposed to eat healthy or have a balanced diet if I’m super limited in my fruits and veggies??
I struggle with that to this day. The more limited my safe foods become, the more out of balance I get.
I would give anything to dive into a bowl of fresh apples, plums, peaches, and nectarines.
There’s worse things in the world I know.
I just wish I knew the real reason behind those sudden reactions all those years ago (I’m still in the woulda, shoulda, coulda phase of acceptance).
Like hey you have a really rare skin disease that may be turning systemic. That would’ve been nice.
I hope I get to see that change for other people in my lifetime.
Why? Why the bone pain? Ok, so we make bullsh*t bone marrow. So what. Does it have to be so painful???
Ohhhhh yeah it does.
And it’s a pain that’s very different than tissue pain. It’s also virtually untouchable.
You can’t numb bones with freezing, but if you’re lucky and don’t react to pain meds, those can take the edge off.
So you don’t quite want to ram your head through the wall.
That’s the medieval part of having a bone marrow biopsy.
They can freeze the sh*t out of the surrounding tissue but once they hit bone, all bets are off.
Hopefully one day they will find a way to make it bearable. Hopefully it will be in my lifetime.
Anyone having bone pain, I wish you quick relief that lasts a long while. Hang in there!
This is the biggest decision I have in what to wear every day, so I may as well make annoying symptoms (such as frozen feet) as satisfying and fun as I can.
Also note the bench because I have to sit to take my shoes and slippers off and on.
If this is only 32 years old..I imagine in 10 yrs that there will be a scooter parked there instead.