Challenges

You might be asking about what types of challenges I face. Here are a few:

Hearing.

It is believed that Helen Keller said, “Blindness cuts us off from things, but deafness cuts us off from people.” Although I am profound Deaf, I can still communicate through sign language and lip-reading. Unless I am with an interpreter or another Deaf individual, I am fully dependent on lip-reading rather than using sign.

I took a lip-reading class during that first round of radiation. I had already been doing it 87% on my own, according to the first “let’s see where you are at” test. But I still miss conversations; I venture to guess I get less than 10% of conversations, unless it is a one-on-one setting. I shy away from big groups and miss a lot of conversation even at the dinner table. A simple looking down at my plate for the next bite to eat, is enough for conversations to transition to a new subject and I have to restart all over in trying to understand the context.

Hearing also is a struggle in the work force. I have my rights under law of course, but it still is a struggle in everyday things. I was a cashier for 3 1/2 years; a really difficult experience, but I learned a lot at the same time about being assertive in my conversations with the customers and how to meet their needs in a professional manner. I love office work, but it is difficult to get an office job without the criteria of having to answer the phone.

To the current date (July 2013): I am now fully unable to hear in the left ear. However, at my last hearing test, my audiologist tested my ear by maxing the volume for the audiogram. I heard two beeps, which initially left me in shock when it happened. My audiologist explained that because I heard those two beeps, I still have “hearing,” but will only hear anything if it is in extreme volume.

My MRI results in May showed tumor growth in the brain and on the left acoustic neuroma. This explains why I lost hearing in the left ear so quickly. I am currently still able to hear a small percentage in the right ear and still use a hearing aid as well.

Hands

My hands are very weak and continue to weaken due to pressure from different tumors that cause my hands to be numb. It started just in the pinky/ring fingers on both hands. Now my entire right hand is completely numb, fingers included. I also have two tumors (one large and one smaller) growing on the inside of my palm on the outer edge. These tumors cause much hand pain, especially since I am right-handed so much of my daily tasks are functioned with this hand.

The ring finger and middle finger on my left hand curl in, because the tumors press on the nerves which causes the muscles to stop receiving the message to/from the brain to function. I took occupational therapy in the Fall of 2012, but reached a plateau.

My typing is becoming daunting. I go to hit the shift key or an “A” and start pressing all the other buttons around instead. I drop things all the time, and have pain spasms every so often that make my hands clamp shut. My handwriting is very sloppy (well, always has been) but if I am using a small pen then it is worse-to where holding the pen is near impossible. The muscles on my thumbs are atrophied, so all you see is the bones with a big indent. If my hands are cold then I lose all function–even buttoning my pants or starting my car. It is the little details that are now getting more and more difficult: putting in my earrings, tying my shoes, turning on lamps or opening doors that have circular handles, un-snapping my bra, or closing zip-lock bags (to name a few.) I also cannot feel the difference in temperatures. I have to be careful when I am around hot items like the stove or curling irons.

To the current date (July 2013): My hands are being affected by the tumor growth in the brain. I am very blessed that I can still function as well as I am. My left fingers are starting to become numb and my hand is becoming shaky. My right hand is becoming severely numb. My grip is weak and my ring finger/pinky curl in as well. I can hardly button my pants without the help of a button loop helper; I bought no-tie shoe laces for my sneakers; and use special silverware when I eat. I am also at a point where holding a pen is difficult and my writing is pretty un-legible; I am thankful I can still type (even if it is finger poking.)

Feet and balance

My feet are completely numb as well. They often turn a nice shade of blue if I sit for long periods of time due to bad circulation. My right foot turns in when I walk, because of muscle atrophy in the right ankle. This causes me to trip often; but also, I have extremely bad balance. NF2 has the tumors on the acoustic nerves (which causes the Deafness). It also results in bad balance.

To the current date (July 2013): My entire left leg is numb. Numbness does not hurt–it just feels heavy or dense. My balance has worsened and I fall more often.

Others

I get pain spasms in the upper arms. If you want to know what it feels like then imagine someone with a big shocker hitting your muscles on the under part of your bicep every few minutes. Pain spasms can also appear in my feet (very painful in the big toe); my nose or other parts of my jaw; my armpits and a few other places. The pain spasms happen randomly. I never know when they will come. Most days I have none–other days the spasms seem unending. Lyrica (chronic nerve medicine) helps release the pain of this, but not always; I also use heated rice pads as a comfort.

My left bicep is atrophied. The left side of my face and mouth is numb, including my gums. I also have a very limited sense of smell due to the tumor on the 5th nerve. Other conditions are due to results of radiation therapy, resulting in multiple problems to my thyroid and pituitary gland.

To the current date (July 2013): I have had no pain spasms in months! 🙂 However, November 2012, I started to have other problems. There has been an increase of pressure on my lower spine, which is causing problems as they put pressure on my intestines. I am now dealing with chronic constipation.

Also, there was an increase of pressure in the neck area from the tumor that is growing within my spine. I started a steroid treatment in December 2012 to help release some of the pressure; I am still on the treatment and it has kept me as stable as possible. I also took Physical Therapy in February to get exercises that will help strengthen the muscles in my neck and upper shoulders.

– – –

These are the main areas of physical conditions that I live with on a daily basis. Anything can factor in more limitations, but I strive to continue living as normal as possible by adapting to the changes.

3 responses to “Challenges

  1. Kirsty Stevend

    hey there i have nf2 as we dk u us face ook

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