Update

I have the best news.

I am going home from rehab... using a cane!

I will post a giant entry Wednesday.  Lots of trouble, happiness, strife, heart ache and a different physical appearance.

Love.

In The End, Life Is Stronger Than Death

Went to the doctor today. The reason being was I am having a hard time ingesting food, and I constantly feel as if my gag reflux was checking in some over-time. It was not a neurologist, just my internal medicine doctor. For weeks, I had a horrible case of the hiccups, always choking on food, the thought of eating made me gag even though it smelled delicious and eating has become a chore.

For example, eating hard food felt like it was going down the wrong tube. That is the closest I can compare it to.

It was discomforting (to say the least) to find that my symptoms came back to my MS. I was diagnosed with Dysphagia.

Definition: It seems like swallowing would just be second nature, not something we have to think about in order to do safely. However, swallowing is a complicated process that involves all sorts of muscle coordination and feedback to and from the brain through certain nerves and neural pathways. Multiple sclerosis (MS) can damage any of these nerves as well as the area of the brain responsible for coordinating swallowing, the brain-stem. This can lead to swallowing difficulties, called Dysphagia.

And what does Dyspagia feel like?

- Difficulty chewing

- Coughing while eating or immediately afterwards.

- The need to swallow more than twice.

- Choking sensations.

- Food sticking in the throat.

- Weak, soft voice.

- Feeling that it is hard to swallow food or move it to the back of the mouth.

- Aspiration, meaning food or drink is going down the windpipe into the lungs.

And why I'm in panic mode:

Dysphagia can become so severe that people become dehydrated or malnourished. If the tips for managing swallowing difficulties (such as chewing your food thoroughly and adding thickener to your drinks) don’t work, it may be necessary to use a feeding tube. Aspirated food or liquids can also cause aspiration pneumonia. This is a particularly dangerous lung infection, and it is the number one cause of death in people with MS.

This is what my cousin Johnny passed away from.

My doctor called my neurologist immediately and informed him of my situation. It usually takes a pretty damn long time to get an appointment with a specialist, but in this case, my neurologist made me his first priority on Monday morning.

This could go two ways:

1. I could be admitted into yet another rehab for speech and swallowing therapy. They would want to watch me for the next few days because at the rate I'm losing weight and not eating (or picking at food), the idea of malnutrition was brought up. I would also need a scan and ultrasound of my throat.

2. I could possibly have a nurse come to my home and hook up the IV's again. Also, I would have a therapist come to the home to monitor me.

The thought of going into the hospital does not deter my worry -- the thought of death does.

The Ram

Earlier, I was writing essays for my grad school applications. They were all about my diagnosis with Multiple Sclerosis, but I never gave a proper ending to the story on my blog.

I spent 4 more times in the hospital. This is only counting MS related visits; MS lowers your immune system and creates a whole lot of other hospital visits. With every visit, my faith in the universe dwindled down to the size of a pencil tip. But my last hospital visit was different. A very good friend, Astrid, sat down and said, "you need to fight."

"What the hell do you mean 'you need to fight'?"

"Remember when we were watching Animal Planet and the leopard was attacking the ram and the ram was just giving up? Then at the last minute, the ram just runs the damn thing into the wall and sticks it's horns in it?!", she asks. "You need to be the ram."

I had absolutely no idea what episode she was talking about. Although, I did get what she was trying to say and it made me realize that I was walking in pity of myself. This "woe is me" shit had to go. So I worked my ass off. I felt as if I couldn't live with myself unless I tried enough to accomplish something.

I receive a lot of e-mails asking me how I went from a wheelchair to walking again. There is no special diet. There are no cures with bee stings and snake venom (I'm not kidding, Google it). However, I did push myself every single day to walk, talk and function again. And don't just think your actions will take you far; you have to believe it. You have to believe that your hard work will pay off, that you could make your own happy ending.

Be the ram.

Visual Reference: Therapy In Bed

[permission]

Sally Sold Seashells By The Seashore

A few months went by since Monica’s visit and I was feeling better than before. That is, until October came and my symptoms were flaring up. However, this time was worse than before. While I was using the computer, everything went blurry. I rubbed my eyes a few times, thinking maybe I had something in them. Two hours go by, and looking through my eyes felt like someone had rubbed Vaseline in them.

“Do you want to go to the hospital?” says a very, concerned mother.
“No way!”

I also didn’t tell them that my legs were numb again and the sensation was moving upward almost every other minute. My symptoms never moved this fast before.

“Mom, I can’t see! I can’t feel my legs!”

My vision was impaired to the point where I couldn’t make out a face. All I could see were colors and outlines. Back in the same hospital I was in the beginning, it was really late at night so the nurses (who knew me by then) paid close attention to me. When you sign up at the ER counter and tell the lady, “hey, I’m going blind!” gets you a fast pass into a room upstairs. Because of the late hour, doctors were not able to run the tests they wanted to. My parents were not allowed upstairs that late, so I was alone for the night. By 3:00 am, I wasn’t so alone; I was rooming with a woman in her 90’s, wide-awake, and watching a Locked-Up marathon on the television pretty loudly.

“Hi kid, whaddya in for?” she croaks.
“I’m going blind,” that’s all I could say without provoking conversation.
“Well damn, ain’t that a shame. God sure plays mean tricks, huh?”

Shortly after our introduction, she fell vast asleep, with the television on. With the combination of the light in the hallway, the television, and Merdie’s extreme snoring, I couldn’t sleep. The next night, Merdie was watching her favorite show, Gray’s Anatomy. She had me cracking up, calling all the actresses sluts and men were better looking in her day. I realized Merdie wasn’t a bad roommate after all. If a nurse took too long to come to the room, she would yell. If I had food I didn’t like, she would have her grandson sneak some in for me. Merdie couldn’t wait to go home. Unfortunately, she died one day while I was getting tests done in another section of the hospital. I would always hope for another roommate like Merdie, snoring or not, she made my situation feel not so bad. But my situation was getting worse. By day four, the majority of my body was feeling pins and needles. I also couldn’t swallow and my speech was slurred. While receiving more and more rounds of steroids, more weight was being put on.

I also got a new roommate. I never knew her name; she slept most of the time and barely spoke. When my roommate did speak, she would cry out for her husband whom been dead. One night, I heard her walking around (which we weren’t allowed to do) inching her way to the bathroom. A few seconds later, CRAASHH! Nurses came running in, bringing my privacy curtain around so I couldn’t see the damage. Through brief openings in my curtains and overhearing their conversation, I found out that she missed the toilet, hitting her head. She had also defecated all over the floor. Now, I feel bad for her, but living in a tiny hospital room with the smell of feces is no Disney World.

Even though my symptoms were getting worse, the hospital transferred me back to the rehab facility I stayed at before for more intense observation. On the good side, I would have my own room, my eyesight was coming back, and the food was amazing there (Our Lady Of Lourdes).

I was welcomed back by a loving staff. This time around was peaceful. I hadn’t come to terms with my diagnosis, but I wanted to feel as comfortable as possible. Even with an additional diagnosis of Secondary Progressive MS, I thought, what else can I do?
At Our Lady Of Lourdes, I wheeled around like a free agent, talking to staff, the older patients, and even doing makeup for them! One staff member gave me regular, awesome massages. A woman across the hall would bake me goodies down in the rehabs kitchen. My father even bought me a mini-DVD player and a few movies to watch. Nights were never alone; staff would sit with me and watch television, DVDs my father brought, or just to talk.

Everything was going fine until I had to start physical therapy. I dreaded it. I couldn’t walk without support. Rehab had some contraption built that look like gymnast bars, so I could walk between them with my hands firmly planted on the bars with my wheelchair behind me in case I fell. I always fell. My knees had officially left the building.
My speech was terrible and so was my eating. All of my food became puréed, and I had to spent hours with a speech therapist. Not only was I literally learning how to walk again, I was learning how to speak again, too.