The 5 Most Annoying Questions Asked By Doctors (Especially If You Have A Chronic Illness)

1. What is your pain level? If looks could kill…..No seriously, ask my doctor, I shoot him (or anyone who asks me this) daggers.

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2. Where does the pain start? Is everywhere an answer? Where do you want to start? This question is answered with a lot of unknowns and ends with please just fix it.

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3. What medicines are you on? Just bring the doctor in, I’m not explaining it twice.

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4.  Didn’t I just see you? Yes, I’m aware you see me more than I see most of my friends.

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5. Your doctors out today, is Dr. Whatever, fine? Idk, Is Monopoly Money accepted? NO DOTOR WHATEVER is NOT okay!

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Living Life with a Rare Disease

As many of you know (and many of you don’t), I live with a rare genetic disorder that causes my body to actively grow a second skeleton – fun right? I’m literally a human statute & it’s basically the coolest hobby ever.

At age five I was diagnosed with FOP or Fibrodysplasia Ossificans Progressiva, if you want to get fancy. It’s a genetic condition that affects 1 in 2 million people where muscle, ligaments & tissue turn to bone.

I’ll be the first to tell you, I got lucky. I might have got a genetic condition created by the devil, but I got to live a normal childhood; one filled with love, laugher, adventure, and a lot  of bumps & bruises. But my body dropped a bomb on me one September day. I went to the doctor for the second day in a row (every kids dream right?), but that doctor saved me and my family from a lot of pain. I saw the only  doctor in the area that has seen, heard, or even knew about the disease that was about to take over my body. He quickly took my socks off & left the room-even at five, I knew he knew something that would forever change my life. He saved me from.gabing a survey which would have caused more pain, hardship, and many hours in countless doctors offices. He diagnosed me & saved me all the testing that would further harm my body.

I got lucky, because I am surrounded by people that love and support me with everything they have. I’m lucky because even though I have this awful disease, I have the coolest little big toes — a marker for FOP.

The worst part of the disease has nothing to do with the awful pain or the bone incasing my body. The worst part is the stares I get going about my daily life. The general public is so discouraging about anything or anyone that looks different. I don’t mind answering questions and educating the people that are genuinely curious, but the people that automatically assume that I don’t belong or that I’m not enough? That’s what makes this life hard. The looks alone are enough to make you feel like a third class citizen, so let’s not start with the comments they throw my way.

Outside of the disease, I’m still a twenty-something that’s all about fitting in. I love all things girly. But my disease took one very important thing from me; the ability to do my own hair. This might not seem like a big deal to some, but to me, I’ll tell you it’s the biggest thing the disease took from me (just ask my mom). If I had the choice, it would be the first thing I took back from this awful disease, which says a lot considering my jaw & hip are both locked as well. I would much rather gain the movement of my shoulders back, over the ability to walk or eat normally.

This disease took a lot from me, but one thing it can, and will never, take from me, is my attitude. Each day is faced with many (many) challenges, but with my support system, anything is possible. I love my family & friends that make every single day possible. Although, without my doctors & the copious amounts of medicine, I can honestly say I would have a much different outlook on life.

I’m beyond thankful for the outpouring love & support from all my family, friends, & doctors, because without them, my life just wouldn’t be as good.

I recently found a quote that I’m making my new motto to live by:

“You aren’t a burden, you have a burden, which by definition is too heavy to carry on your own”

5 Goals for 2018

2018 is going to be my year. It’s time to start focusing on myself and discovering my passions. It’s going to be about finding myself again, and focusing on ways to be a better, more happier, me. It’s time I hold myself accountable for my thoughts, feelings, and general attitude about life.

#1 Be more grateful

The past couple years have been rather tough. From all the curveballs life has thrown me, to suffering from mental health, and chronic illness, it’s time for me to focus on bettering myself. It’s time I become more thankful for all the great things that life has given me. 

My plan is to write down three things I’m grateful for everyday. For me, it’s about enjoying the little things in life.

#2 Get healthier

Just like everyone else, right? Clearly this is easier said than done, especially when you add my physical limitations in.  On top of this, I’m the pickiest eater on the planet. This is going to be one of my more challenging goals. Over the past couple years, I’ve stopped eating Chicken Nuggets everyday, but clearly, it hasn’t helped my weight. 

My plan is to achieve this by going to the gym to swim. I’ve always been a fish, but swimming to lose weight? This should be interesting… (I’m open for any tips). My goal is to also give up sweets for 2 weeks, and then again for 30 days… Let’s see if my sweet tooth can survive….

#3 Learn new skills

I’ve always enjoyed writing, but this year I want to take this to a whole new level. I want to learn calligraphy. I’ve always loved the look, so why not learn how to do it myself? I’ve also want to learn how to write with my left hand. I’m ambidextrous in many things in life, or favor my left hand verse my right. 

I’m grateful for any tips, tricks, or ideas for new skills to learn.

#4 Enjoy some me time

I love to read, and over the past year or so, I’ve gotten so busy with life that I no longer have time to myself. It’s time to find time for myself again. It’s time to learn to not let life pass you by, or get to busy to enjoy time for me. 

My goal is to read 30 books. My favorite books are romance novels, & I’m always open to suggestions/authors!

#5 Building my blog

Only seems fitting right? Third time’s a charm right? I want to grow my blog, my social media presence, better my website, & gain followers. (Anyone have website building skills and want to help a girl out?)

My goal is hefty, with one post a week. My followers goal? I’ll share when I reach it!

Though I’ve set more specific goals that I’d love to reach, these are the general goals I want to achieve in 2018. Now it’s your turn to help and keep me on track (insert winking smirk face). 18 goals for 2018, what could go wrong? (Everything, but we’e going to give it a go!)

Health Update

After the past two months, I feel like I need to give you guys a health update.  As many of you know, I have a rare condition, Fibrodysplasia Ossificans Progressiva or FOP.

I have been on 32 days of prednisone for two different flare ups. I’ve also had a painful flare up in my big toe for over three months. Last week, I received an outpatient infusion treatment in the hospital and was there three long days in an attempt to help absorb the medicine and hopefully combat FOP and fight the many side effects of the medicines.  I don’t know what is worse, the constant pain or the effects the medicines have on my body; especially Prednizone, which makes me super hungry, crabby and unable to sleep.

My throat was causing many breathing problems, and though the breathing problems have been lingering for years, it seems to be sticking this time. This flare up sent us to Philly, and a higher dosage of the clinical trial medicine. We go back to Philly in a month to reevaluate and run more tests.  Luckily so far, only a little cord of bone formed in my neck.  I have limited movement in my neck but this flareup only impacted it minimally.

The swelling in my jaw has had us most scared, as I only have 2 MILLIMETERS (yes, millimeters) of opening as it is. We’re throwing every medical and non-medical thing we can so I don’t lose any more movement…this also means eating A LOT of pasta & bread (It’s been terrible…… *insert sarcastic voice*).

Anyone who knows me, knows that I absolutely adore my big toes. Since it’s on my right foot, where I put all the pressure given the way I walk due to my hip being locked, it seems to be recurrent. Due to other medicines’ side effects, it is also very raw, which causes additional pain. I also keep aggravating it since I can’t sit still for more than 20 minutes, but for now, my cute big little toe is feeling a bit better.

On top of FOP, over the past three days I’ve been in incredible pain, making it nearly impossible to move or even function. Turns out, I have a cyst on top of everything else. Unlike the FOP symptoms, these symptoms seems to be resolving rather quickly. Nothing wet wipes, gauze, and antibiotics can’t fix!

Though I’m trying really hard to stay positive, there are days that it seems impossible. I’m extremely thankful for the outpouring love I’ve received over the past several months from friends, family, my dogs, and an amazing team of doctors, nurses and many others on the research team.  I’m hoping I’m on the upswing of things now! (keep your fingers, toes, eyes, and any other body part possible crossed)

My family and I are extremely thankful for all of your thoughts, prayers, texts, and well wishes,. I now call my mom “a worry elephant” instead of “a worry rat”.

Much love,