It Gets Better!

Hello! I Hope everyone had a happy and joyful Easter full of great food and company!

It’s been a while since I last updated.

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My overall health has been good!

These last months are had its high and low points but I feel like I’m finally in a place where I’m feeling most happy.

Since February, I have been completely discharged from all therapies relating to my brain surgery!

No more physical, occupational, speech, or vestibular therapy, bless!

My balance is dependable but still iffy.

I’m able to get from point A to point B, I just get off balance sometimes.

Which is okay!

I’m fully on board for using walking assistance whenever possible. I used to be so embarrassed for needing help but now I’m all for it! I’m fortunate that I have a great family support system that is always willing to lend me a hand to hold or lean on while walking.

HOWEVER

Now that I’m Deaf, my balance completely relies on my vision,

Aaaand my left eye isn’t doing to great.

After gaining so much back, I now am dealing with a decline.

For whatever reason, after surgery, my eyes, nose, and mouth became dry. All saliva and tears just stopped.

Eating has been a major situation that really has affected me greatly but my left eye has become so dry and painful, I have to take steps in preserving what moisture I can or else I risk losing my eye.

I really really really do not want that lol

I have been making lots of trips to the hospital to take figure what is happening.

My oncologist unofficially diagnosed me with Sjögren's syndrome, which is an autoimmune condition when your cells attack the healthy glands that produce moisture.

To protect my eye, I will be getting a contact lens that keeps my eyeball nice and not dry!

Whether it’s SS or something else NF2 related, I’m trying my best to stay hopeful.

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Also I have been able to do a lot of self-reflection, thinking, and therapy to help me cope with these emotions that I have been experiencing..

It's strange, I thought after surgery all my worries would be gone. Like no more fears, knowing that I would have already gone through the scariest surgery I will ever need, but post-surgery emotional numbness has hit me hard.

After experiencing a lot of sadness earlier this year, I feel extremely blessed at where I am. I’ve overcome a lot,

But to be honest, since I found out the tumor was going to be debulked, I could not imagine how my life would be after surgery.

And now that I am here, post-surgery, I feel so stuck.

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I had such a hard time with my first surgery, the trauma never faded. I could not imagine my future. It was like a massive gray blob.

Being disabled, and dealing with a rare chronic condition has left me in a situation.

I want to be useful and independent but I know that will be difficult.

Some days are easier than others at finding the motivation to do stuff again.

But do not fear! I'm working with my therapists on solutions to stay away from the depression route to keep killing the recovery game!

Through my journaling and art, I am not only getting back to my usual self but have found my motivation.

You see, I realized I am useful and independent just in a different way than most.

Neurofibromatosis Type 2 brought out the resilient and positive person I didn't know I could be.

I want to become the best advocate for myself and every other person dealing with a monster medical condition or disability,

My vocal cord/voice was saved during surgery and now is the time for me to use it.

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I'm still recovering, but now it's the mental recovery instead of physical.

I'm processing and grieving.

I've lost a lot and it's unknown what the future of this condition will bring me but I am extremely thankful how good my life currently is.

I still have many tumors, but even though NF2 has put me, and many others, through so much pain; it now has given me a purpose and directions.

Everything is getting better.