Rare Disease Day 2018!

"And we know that in all things God works for the good of those who love them, 

who have been called according to his purpose."

-Romans 8:28

February 28th is Rare Disease Day! As someone who has a few rare diseases I am so appreciative of this day to spread awareness! I thought I'd take today to answer some questions about my rare and invisible illnesses to help spread awareness about what I, and others, face everyday. I stole these questions from Sunshine And Chaos. 

What illnesses do I live with?

~I have been diagnosed with Mast Cell Activation Syndrome, Postural Orthostatic Tachycardia Syndrome, Asthma, and Raynauds. 

What year were you diagnosed?

~I was officially diagnosed with MCAS, POTS, and astma in 2017 and Raynauds in 2018.

When did you first start seeing symptoms?

~I started showing symptoms in high school. I was misdiagnosed with anxiety and conversion disorder which my cardiologist has now confirmed it was POTS the whole time. 

What is the biggest adjustment you had to make? 

~The biggest adjustment I had to make was learning my limits and how to push myself with out going over board.

What do most people assume?

~Because I don't ever look sick most people assume that I am feeling fine all the time. Or that I am faking my illnesses. 

What is the hardest part about mornings?

~The hardest part about mornings is getting up. My POTS is usually the worst in the mornings so getting out of bed and getting dressed typically spikes my heart rate into the 160s or higher. Which leaves me very symptomatic and short of breath. 

What is your favorite medical TV show?

~I LOVED Night Watch when they were still filming in New Orleans but now I'd have to say Grey's Anatomy. 

What is one gadget you can't live without?

~Non medical gadget would be my phone. Medical gadget would be Melvin my benadryl pump.

What is the hardest part about nights?

~By the end of the day my body is usually in So. Much. Pain. So trying to fall asleep in pain is pretty difficult.

What medications do you take and how much?

-IV Benadryl Infusion (11mg an hour 24/7)

-Zyrtec (40mg)

-Zantac (350mg)

-Asthamnex (4 puffs)

-lexipro (10 mg) 

-potassium (40meq)

-birth control 

-epi pens (as needed)

-benadryl (50mg as needed)

-ventolin (1 puff)

What alternative treatments have you tried?

-I tried acupuncture and I noticed a difference but the negative side effects outweighed the positive effects. I also go to talk therapy, which doesn't necessarily count as an alternative treatment, but I love it very much. 

Would you choose to have an invisible illness or visible illness?

-I would choose no illness if that was an option. But invisible illness makes it easier to "blend in".

Are you able to work? If yes what do you do?

~I work at my parent's company as the professional printer paper restocker and all around office help. I would looove to go back into the field as an EMT. I am also a part time student in the Fire & EMS Administration program. 

What would people be surprised to know?

~People would be surprised to know how many of my day to day symptoms I don't talk about or hide. I don't share every tiny symptom but that doesn't mean those symptoms don't exist. 

What has been the hardest thing to accept? 

~The hardest thing to accept has been the fact that I may never get 100% better. I will always be battling with my body to maintain my base line. 

What is one thing you never thought you could do with your illness?

~Be happy 

The commercials about your illness:

~HAHAHA there are no commercials about my illness. No one has ever heard of them before and there's no cures or medications to advertise. 

What was one thing that was really hard to give up?

~My career. I miss being an EMT and the likelyhood I'll be able to return to the field is slim to none. 

What is a new hobby you've taken up since your diagnosis?

~Blogging and running my spoonie Instagram account. 

If I could have one day feeling normal again I would...

~Hike the Grand Canyon again. 

What is one thing people say that gets under your skin?

~Are you feeling better today? or How are you feeling today? The answer will almost always be no I'm not feeling better. And no I am still not cured. 

But I love it when people:

~Research my illnesses and understand them. Or understand when I have to bail because my health just isn't cooperating.

What is your favorite motto or bible verse?

"My flesh and my heart may fail, but God is the strength of my heart and my portion forever." 

-Psalm 73:26

What would you want to share with someone who is newly diagnosed?

~Don't give up. There will be hard days but the good will outweigh the bad. Don't let your bad days trip you up.

What is something that has surprised you about living with an illness?

~I was most surprised at what living with my illness has taught me. From learning to persevere, learning to not take anything for granted and learning to enjoy the littlest things..

What is the nicest thing someone has ever done for you while you were ill?

~I was living in Nebraska and inpatient for like a week. The sweetest nurse knew I was alone and took my dirty pajamas home and washed them so I would have clean pajamas and she would sneak me in ice cream. 

I'm involved in rare disease day because:

~I want to spread awareness for not only me and what I'm facing, but spread awareness for all the rare and orphaned diseases. There is still so much research to be done and spreading awareness will only help propel that research and funding. 

The fact that you read this list makes me feel:

~Encouraged, loved, and understood. 

Thank you for reading my Rare Disease Day question and answers! Please help in spreading awareness for rare and orphaned diseases by sharing this post or sharing awareness in general. I appreciate you all! 

With Love, 

Elizabeth <3