Lemon's drop-inn

[Vivianne]

People who listen and try to understand are just as amazing. Kindness and empathy really make a difference in the world.

[Lemon Cheesecake]

I think when people try to picture themselves in "others shoes" they make an effort to be more compassionate. But sometimes you literally have no clue how it is...like until I had vertigo I thought I had an understanding of dizziness but really did not realize how absolutely debilitating it could be!

[Vivianne]

Not everyone bothers to try, in my experience.

I do have severe balance issues. I can’t stans upright without leaning on something. It is a major loss of independence. I’m not dizzy, necessarily, just lost in space.

[Lemon Cheesecake]

Are you able to get products that can help you? Like an electric wheel chair or...?

[Vivianne]

I tried an electric wheelchair for fifteen minutes and got nauseated. It was very odd.

I do have a custom wheelchair!

I’ve settled into a routine with my mom (my primary caretaker) and can achieve what I need with what we have. When new problems arise, we’re adept at adapting.

Thank you for asking!

[Lemon Cheesecake]

I like that..."adept at adapting".

Not sure if you have any good support groups where you are, but they can be very helpful.

[Vivianne]

Haha, thanks! It seems dramatic, but usually things are stable-ish.

The one specific to my disease is on Facebook, and I personally try not to get too involved. Their overall mentality exhausts me, and I’m trying to practice self-care. But they are helpful!

[Lemon Cheesecake]

hmmm I don't do facebook...I prefer face to face time.

[Vivianne]

Most of us on there have hearing issues with varying levels of fluency in ASL. It makes sense for us.

Also, it’s a rare disease, and most of us are lucky if we meet another patient face to face.

But, yeah, Facebook has problems.

[Lemon Cheesecake]

Then you are a very unique and rare person!! It didn't take long to notice your wonderful personality! You sound like such a go getter, resilient, positive! Maybe what you learn/experience from your disease will help someone else.

Did you have any indications in childhood?

[Vivianne]

I hope I can bring about positivity, even if in small ways!

Yes, as a child I tripped a lot and had eye problems. I was physically weak and had skin tumors. No one knew what they were, so eventually a hospital biopsied one while I was awake. It led to my diagnosis, but sticking a needle into a nerve tumor is a horrible idea.

[Lemon Cheesecake]

a nerve tumor!! That sounds incredibly painful! I had a neuroma on my foot before and it was very difficult to put weight on it but fortunately physical therapy and ultrasound etc helped it to go away after a few months. I feel for you!

[Vivianne]

They are literally on nerves!

I have a bunch of them.

[Lemon Cheesecake]

I feel sad for you but I think you are so brave!

[Vivianne]

Bravery is an odd thing to me. I think it takes a lot of bravery for anyone to just live life and stand by their convictions. I admire a lot of my friends and I’m making a point to acknowledge their quiet bravery, and they seem surprised, as if it hadn’t occurred to them. Society seems to put loud actions of bravery on a pedestal, but the quiet ones add up to a huge impact.