Recovery Is Hard!

Hi! I Hope everyone is happy a healthy and safe holiday season !

Here’s a lil recovery update since I’ve been MIA for a while,

Basically

Recovery is hard!

It’s slow and unpredictable.

Each week has given me something to deal with from a painful scratched cornea to Covid.

So ya,

Progress feels slow, but it’s happening. Mentally, going from independent to dependent to independent again is not easy. I try to be a good sport about it, but it’s tough.

Anyway. . . .

Let’s start with the recent change in my life: I’m Deaf.

Even after being diagnosed, I could never imagine I’d lose my hearing, but here we are.

I’m Deaf and doing my best.

Fortunately, losing my hearing has not impacted my life at all.

There’s a silver lining with everything and even though I lost something BIG I feel extremely grateful. This loss is simply a reminder of how fortunate I am. Everyone easily accommodates for me and no one has treated me differently because of my lack of hearing, which is the best thing I could ask for.

My family and boyfriend do a great job of speaking and advocating for me. Even my tiny nieces and nephews are helping me when they can.

I’m truly surrounded by the best.

Moving on to a less then positive update:

Due to the surgery, my salvia glands have completely closed up shop.

They no longer work.

Eating is terribly difficult.

In October, I passed the swallow study, so my swallow isn’t an issue. Since I have very little facial paralysis I’m able to chew, but without saliva , swallowing food is incredibly dry, even with water.

This is a major issue because I’ve always been thinner, so unless I strictly stay on a high protein soft/liquid diet , I will not gain much weight.

I do have a feeding tube, which is okay, but at some point I would like to get rid of it.

So far, eating has been a sensitive issue. I’m hoping this gets better or I’m able to adapt to my new relationship with food. Either way, it’s going to take lots of work. Eating is more than a physical experience but also an emotional one.

It makes me sad that I struggle and can no longer eat my favorite foods.

Finally my last unhappy update:

blood loss.

Since September, I’ve been on blood thinners due to a lung blood clot. My body hasn’t taken too well with the thinners so these past month have been very hard.

I’ve been to the ER and admitted to the hospital for a few days to get blood transfusions and iron infusions.

Until I am completely off blood thinners, this issue will remain.

Thankfully, it’s temporary and I will be off blood thinners within the next 3 months, so hopefully once I’m off my energy and blood levels will rise !

On a brighter note, physical therapy is going well despite everything. I’ve graduated from a walker to a cane!

My walking is still not great unfortunately.. Like, I have this uncoordinated waddle, it:s coming along but I’m trying my best to not let it stop me from getting out. I get more tired and irritated easier so I can only be out for short periods to help build my endurance,

So far this entire recovery has been mentally and physically draining.

But I’m extremely lucky for the people I have supporting me.

I’m recently restarted therapy so I’m do lots of work on my mind and body right now!

So ya,

Recovery is hard,

it’s not meant to be easy.

The future of my condition is uncertain. I still have a couple of tumors in my head I need to deal with. Surgery is again a major possibility in the future. Which is a bummer because brain surgery is gross.

However, I’m at a point in my life where I can take what is given to me and work with what I have.

Because that’s all I can really do, to just be the best version of myself.

Always.

P.S. The photo was taken during my first chemo infusion at only 17 in early 2014! A baby!