Portrait Of a Disease

 November 2010. New York

( Had ALS but didn't know it)

 

So, I have been receiving an inordinate amount of emails lately from people who read the blog who do not know what ALS is. So, I thought I would explain it. Don’t worry, I didn’t know what it was either and I actually had it! When my doctor told me that he suspected that I had ALS I was like, “Oh, okay, is there, like, an antibiotic for that?” Later that day, when I got home I googled “ALS.” I almost fell out of my chair. Imagine reading this:

Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease or motor neuron disease, is a progressive and fatal neurological disease that causes the neurons that control voluntary muscles (motor neurons) to degenerate. The first symptoms include muscle twitches, cramps, tight and stiff muscles. Eventually, individuals with ALS lose the ability to stand or walk, use their hands and arms, or eat normally. In late stages of the disease, weakness of the respiratory muscles makes breathing difficult or impossible without a ventilator. Cognitive abilities remain mostly intact, though some individuals may experience problems with memory or decision-making. Individuals with ALS will experience weakness of an arm or leg, slurred and nasal speech, and difficulty chewing or swallowing. Most people with ALS die of respiratory failure within 3 to 5 years of the onset of symptoms. There is no known cause and no cure.
 

New Years Eve 2011

(Still did not know that I had ALS)

 

Yeah, not cute. I kept thinking, “I have brain damage? How is that possible? I am like a fucking genius and a sharp as a tack. I’m going to become a brain-dead vegetable?” Then, I kept reading and I realized that I was going to become a vegetable but not brain-dead. Great. I think I’d rather be brain-dead. That way I won’t know what’s going on.” So, after this politically incorrect, ignorant train of thought I decided to educate myself regarding ALS.

 

 June 2011. New York

(Was diagnosed two days earlier on David’s birthday)

 

 June 2011.Paris

Before my diagnosis, I didn’t know what a motor neuron was. I didn’t even know what a neurologist was. Maybe I am brain-dead. Anyway, basically my brain sends a signal to my motor neurons which should send a signal to my muscles to move. My motor neurons are dead so they cannot send a signal to the muscle. The muscle therefore atrophies. Therefore, my cute little body is paralyzed.

 June 2011. Paris

(with friends, Ann-Lise and Chistophe)

 

  June 2011. Lake Annecy, France

 

The progression is called degenerate. The process was slow but not slow. To give you an idea of timing, three years ago I was a perfectly healthy gorgeous supermodel. Just kidding, but I was healthy. Today, I can only move my head. I just got weaker and weaker day by day until one day I just couldn’t move. Not only were my muscles weak but my diaphragm weakened as well. Translation: I could barely breathe. So unfortunately, I had to get this ugly breathing machine strapped to my face, up my nose, pushing air into my lungs. If you thought having a zit on your face was bad, try having a breathing apparatus strapped to your face 24 hours a day. However, it might cover up the zit.

 August 2011. Hamptons, New York

 

  September 2011. Santa Barbara

 

I have seen every neurologist, neurosurgeon, orthopedist, pulmonologist, respiratory therapist, nutritionist, chiropractor, naturopath, acupuncturist, psychiatrist, chemist, botanist, priest, healer and witch doctor from New York, Santa Barbara, Los Angeles, Chicago and Paris. I have had every test from blood, saliva, hair, metal, physical, urine and psychiatric. I have had every CAT scan, MRI, and x-ray. I have been prodded with needles in every vein and artery. I have had intravenous vitamin drips and oral supplements. I drank illegal weird Japanese tea. I have had two surgeries. One surgery put me in the ICU because my lungs collapsed. I was on oxycodone for eight weeks until I was nearly suicidal. I have done everything short of stem cells and pigs blood. I was even, egads, gluten-free for a time being!

 October 2011. Santa Barbara

 

 

                                                         November 2011. Santa Barbara

 

So, to make a long story short I’ll tell you where I am at today. I will go into depth about this whole process in my book in case you were worried that you weren’t getting the whole boring story. Today, I am totally paralyzed from the shoulders down. I use the breathing machine when I am at home and when I sleep. I have a feeding tube. I use a miracle feeding tube formula called Liquid Hope that is the healthiest formula on earth. Everyone should take it. The good news is that I can still eat by my mouth. Kind of phenomenal. I have a diaphragm pacer that doesn’t work. I take the ALS medication called Rilutek twice a day. I take a breast cancer medication called tamoxifen once a day because it’s supposed to slow the progression of ALS. I take an amino acid called L–Serine 5 to 6 times a day. I eat everything I want which includes fried chicken sandwiches, chocolate, beef bourgignon, gummy bears, pastrami sandwiches, croque Monsieurs, lots and lots of French cheese, more butter than anyone should, at least five pieces of fruit a day, lots and lots of vegetables, and I have one coffee with cream and sugar a day. I drink green juice, red juice and any other juice that is in order for the day. I used to make my own feeding tube formula which consisted of kale, dark spinach, apples, avocados, nuts, olive oil, tumeric , blueberries and any other superfood that I could find. I have egg whites with crème fraîche for breakfast and usually a salad with lots of olive oil for lunch. My husband always brings me some sort of dessert every day. Even after all of this, I am a toothpick. My stomach may look a little bit bigger but my arms and legs are scary skinny. I have zero body fat. Jealous?

 December 25, 2012. Santa Barbara

 

 February 2013. Santa Barbara

 

That is how I am physically. Want to know how I am mentally? Statistically, people with ALS strangely do not have depression. How crazy is that? You get the worst disease on planet Earth and you’re not depressed? Nope. I’m not even mad. This is how I explain it… I had to have my own personal “come to Jesus” moment early on. If you start to think about the disease that is racing through your body that will eventually kill you, you will go crazy. So, I just don’t really think about it. I know I have ALS. I know it’s going to kill me. I know that my daughter will not have her mother much longer. I know that I will most likely die of suffocation. I know, I know, I know. So, therefore, I pretend like I don’t know. Ignorance is bliss. Additionally, the way my daughter and I are getting through this is through humor. We are laughing through the tears.

 

 March 2013. Las Vegas

 

 May 2013. Los Angeles

November 2013. Paris

My husband is my hero. He pretends like I don’t have ALS either. He still buys me pretty clothes, takes me out to dinner, organizes fun weekends and tells me I’m pretty even with tubes and wires coming out of my emaciated body. To be honest though, I have been prescribed some anti-anxiety medication. I’m too anxious to take it though. I got it because I had a panic attack at the hair salon. Note to self: don’t look in a mirror for an extended amount of time. When I was at the salon, I just kept looking at myself and looking at myself while she was blowdrying my hair. When you look at yourself and see how your body has changed and you can see that you are sick, you kind of freak out. Also, I’ve been having crazy nightmares. Very detailed, suspicious nightmares. I know I can control my emotions during the day but I guess my subconscious takes over while I sleep and the demons come out. I like to wake up my husband at 3 o’clock in the morning and tell him every detail. I am sure he likes that too.

                                                              January 2014. Paris

What will I do if this all becomes too much, too painful, too difficult, too overwhelming, too heartbreaking, too embarrassing, too much of a burden, too obnoxious? One word: Dignitas.

May 2014. Paris

 

Currently, I do not feel “sick.” Most days I actually forget I have ALS. Some days I actually feel great. We don’t talk about ALS a lot at our house. We have too much other stuff to talk about. We don’t worry about ALS that much either. We have other things to worry about. For example, Gracie informed us the other day that when she grows up she wants to be a housewife. Seriously, Gracie?

So that’s it in a nutshell. I have ALS. I’m sick. I’m dying. I’m living. I’m living happily. Back to blogging about Provence, shall we?