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,
Carli