RT @ElisaFernndez1@twitter.com

Una década sin ti y, aunque se está avanzando, seguimos necesitando una mayor inversión y apuesta por la investigación en #EnfermedadesRaras para que cada vez menos familias pasen por lo que pasó la nuestra #NF2 #ER #RareDisease 😢

🐦🔗: https://twitter.com/ElisaFernndez1/status/1617111762007982080

Im feeling better. I also had a busy day. Saw a physiotherapist.  I was able to walk stairs and walk short distance with walker. I saw occupation therapist to see about going home asap. I also saw an assistant to my neurosurgeon. They explain to me MRI i had showed I have a clavicle tumor on my neck. Its benign like all my tumors. It's a high risk surgery. I said no surgery. We discuss the prospects of palliative care. I maybe coming home tomorrow. Thats good news. #Neurofibromatosistype2 #nf2

Well that is uncanny. I couldn't get up from couch to wheelchair because of nerve pain. My dad had to pick me up and put me in wheelchair. Everyone is concerned. #nf2

So this is consumption. A little bit more death each day. I haven't done as much as i would like. Connecting with people, creating situations for mini miracles, but when i do go out and be my authentic self its happiness to be blessed by people who care about you. #starseed #nf2 #5D #newearth

I feel like a sick boy. My best days gone. I got a tumor growing in my gums but neurologist said mri of my brain and spinal tumors is more important. I dont have cancer. I have #nf2 my tumors are beign. I have had brain and spinal tumors removed. I ain't having surgery again so trying to gracefully leave this world. I know my love and presence will be missed.. I feel sad when i don't contribute any value to the world. I'm just sick now. I think about what is my "vow" to my soul mission. #pray

Ìm out cruising in my scooter. A man stop his car to ask me a question. I drove over to him and got my phone out and open my voice to text app to read what he was saying. I told him to speak louder because I'm deaf. I knew he wanted directions. All I read was "im sorry." #nf2 #deafculture

About to go to bed. I just took a Tylenol and hope it numbs my leg pain. I haven't had a good night sleep in months. I also had some reiki and sound healing this afternoon. My energy is out of tune and reason for body pain. Being in tune takes discipline and a good fight is ahead of me to self heal and have self empowerment. #nf2 #newearth #intention #prayer

Im fantasizing about driving my scooter to the cemetery for a nap. Best way to experience heaven on earth. #nf2

@georgia I have power naps throughout the day. I just learnt sleeping in the rocking chair is more comfortable than bed. The position of sleeping put less pressure on my spinal nerves. But getting out of this rocking chair will be tougher than getting out of bed. #nf2

Now that my spinal tumors have because of #nf2 I have left hip pain. It's hard to bend over to pick up stuff from fĺoor and lay in bed. It's hard to without periodically waking up every 1 or 2 or 3 or 4 hours. So my sleeping patterns are power naps throughout the day. Time for a nap since I'm pain free atm. Cheers.

I was worried about the lump in my gums for 3 months. I thought I had gingivitis. I don't like the dentist. It's a bsdm visit. If I smiled it wasn't noticeable. It finally was noticeable mom was worried and made dentist appointment. I saw dentist and he had no clue what it was even after xrays. He said won't touch it with a 10ft pole. He said I needed 2 teeth pull bc they were broken. Long story short the lump is a tumor. It is normal for people with #nf2. Routine surgery like a tooth removal.