Back at it !

Hi !

First off I survived!

Yessss!

After being in Massachusetts for a month I’m back!

Glad to home where the real recovery takes place!

Anyway lots went down these past months but I would not have gotten through this difficult time without the support I received !

Currently, I’m recovering!

This past week I was nauseous and threw up a lot .

With recovery, every bad thing feels like a major setback from improving.

I can’t push myself too much when I’m sick but it’s frustrating!

I’m lucky that all the nurses come to me outpatient .

I can’t walk well and have a feeding tube . The g-tube is hard because I have never wanted to eat food as bad as I do now.

So going back rewind a bit and talk about the surgery.

My mom and I arrived to Boston a week early for pre op. Every went well !

Prior to surgery I have been talking and texting my friends who also have NF2 for advice on how to prepare for this surgery.

Coincidently my pal McKinnon aka my go-to person had brain surgery a week before me so on a cloudy Monday me and my mom bumped into her and her mom, Tracy, at a random Starbucks in Boston!

Their presence along, with my doctor, gave me so much support before, during, and after surgery! Nothing bonds people more than brain surgery! So I was beyond stoked to see them in Boston!

The surgery was successful, a big chunk of the tumor came out and my facial nerves were kept intact!

My vocal cord did get irritated which is why I currently have a feeding tube and I went deaf BUT I did get an ABI ( Auditory Brainstem Implant ) which hasn’t been turned on yet but at least I was still able to have one placed ! Hopefully this will help me hear a little in the future.

After surgery was a mess of course.

I thought I would be at the hospital for max 5 days, then recover at the hotel in Boston.

WAS I WRONG.

I ended up staying in the ICU for almost three weeks which was awful. Apparently a series of unfortunate events happened after surgery lead to me needing lots of care.

Which makes sense!

But at the time I was very drugged up with medication and confused so my time spent at the hospital was very emotional .

Plus, I could not speak well or hear which made it 100000000 times worse.

My family has been doing the heavy lifting while I get better. My sisters did so much for me and my parents during my stay at the ICU. They flew to Boston and advocated for me when I was not in a state to do so myself. I’m so lucky for my family, especially my parents, who continue to help me recover even though I have bad days . My mom is the ultimate care taker and my dad is always getting me the groceries and things I need! I am so lucky for the support and love I have!

During my time away, I had my older sister update my support page and

wowza ! I had no idea so many people were praying and sending me good vibes ! All the support has really help lift my spirits and try my hardest to recover as best as I can!

You see,

When I was first diagnosed I was overwhelmed and had no idea NF2 would be such a big part of my life.

I’m relearning to walk again and I woke up deaf and unable to speak. This is a great challenge but I just keep reminding myself this moment of dependence is temporary

. Even if it not,I will adapt, and live my best life.

Because that’s what I have been trying to for years; embrace this change and push forward .

I will continue to write as my voice and advocate for NF2 and hearing loss .

I can do this.

I know a cure is guaranteed to happen during my lifetime, but I pray a very successful tumor suppressor is created or gene therapy becomes an option soon because this condition needs to be stopped. Many children and young adults are affected with this condition. No individual or family deserves the pain of NF2 !

Like I said , I can do this.

Recovery is HARD.

But I will overcome!

I’ve done once before and hopefully I can do it again!