The Terrible Trifecta

[Insanity_Stars_Birdie]

You know a diagnosis is going to be unreal when the medical community refers to it as the terrible trifecta.

POTS, EDS, MCAS 

Otherwise known as...

Postural Orthostatic Tachycardia Syndrome - Dysfunction with the autonomic nervous system in relation to circulation of blood. Results in dizziness upon standing/fainting. Rapid heart rate upon standing. Fatigue. Exercise intolerance and more. It exacerbates MCAS because the issues with circulation can worsen mast cell triggers. It is exacerbated by EDS because the flexibility of the blood vessels makes circulation even harder.

Ehlers Danlos Syndrome - A connective tissue disorder. Seen as an umbrella disorder with all of its comorbidities. It affects all of the connective tissue in your body. This can lead to veins not circulating properly. Bruising. Dislocations. Fragile skin and organs. Frequent injuries. Stomach issues. Issues absorbing vitamins and much more. It affects every part of the body all at once. Often exacerbating its two sister conditions within the trifecta

Mast Cell Activation Syndrome - This is Dysfunction with the immune system. An overreaction of mast cells specifically. Causing wide spread allergy like reactions to almost anything. Allergies can also form and go away at any point. Mine manifest mostly as stomach issues but there are also anaphylactic like reactions too. I have one to coconuts I developed when I was 18. Often exacerbated by POTS symptoms.

 

With these three together it constantly feels like I'm one wrong step away from a hospital stay. I recently developed a new food "allergy". We think its beef but we're not sure if its a specific type or fat content so we need to keep trying different kinds to see. My heart rate hit 200 today at work. And my wrist got sprained opening a door. Sometimes it feels like this can't actually be real life. Add autism and OCD into the mix?

Some days are better than others but man looking forward to birthdays is difficult.

[BabyPoppy]

That's a lot to face 🫂 It's not easy being sick or dealing with chronic illness. Please know who you are is not defined by your illnesses. You are so much more!

I have 10 - 15 safe foods I can eat and somewhere between 35 - 50 medical providers I've seen this year. I understand the doctor drama all too well, but I choose to celebrate that you made it 27 yrs with all that stuff going on! Your trifecta is terrible, but 27 is terrific! This will be the year of .... whatever you want it to be! Miracles happen and I am grateful for the miracle that brought you here to the forum to celebrate with us! 

Happy Early Birthday! 🎂🥳🎉🎈🎁🎊🎂🎂🎂🎂🎈🎈🎈🎈🎉🥳🥳🥳🎁🎁🎁🎁

Poppy 💕 

[Insanity_Stars_Birdie]

31 minutes ago, BabyPoppy said:

That's a lot to face 🫂 It's not easy being sick or dealing with chronic illness. Please know who you are is not defined by your illnesses. You are so much more!

I have 10 - 15 safe foods I can eat and somewhere between 35 - 50 medical providers I've seen this year. I understand the doctor drama all too well, but I choose to celebrate that you made it 27 yrs with all that stuff going on! Your trifecta is terrible, but 27 is terrific! This will be the year of .... whatever you want it to be! Miracles happen and I am grateful for the miracle that brought you here to the forum to celebrate with us! 

Happy Early Birthday! 🎂🥳🎉🎈🎁🎊🎂🎂🎂🎂🎈🎈🎈🎈🎉🥳🥳🥳🎁🎁🎁🎁

Poppy 💕 

Thank you It's crazy to think I'm almost 27 when most doctors gave me until I was 5. I've been sick as long as I can remember so I'm  not sure who I would be without it.

Most days I'm good. I know who I am but once in a while it's harder to accept.

[babypichu5]

Hi @Insanity_Stars_Birdie, my best friend has the exact trifecta you are talking about, so know you are not alone. Always give yourself the grace and understanding you would give someone else.

Remember that your best is context depend. Some times your best is getting out of bed. Other time it is going to work and getting all sort of things done. Both are your best and both are valid.

I wish you strength and grace to handle the situation your experiencing. Please don't be hard on yourself there are years ahead filled with joy!

Hugs. 

~💛 Pichu