Awkward Bitch: My Life with MS

On Christmas Eve, my boyfriend's incredible parents gave me a book which I have been dying to read for quite sometime. The book was written by Marlo Donato Parmelee, and it chronicles her journey with MS.

Reading the book made me incredibly emotional because I was finally able to read about another individual who had almost the exact same feeling(s) as I have/had. It gives me hope knowing that, when I put pen to paper and write about my MS journey, others will be able to relate in the same way.

It is an incredibly easy read, and I highly recommend those enduring MS or those caring for an individual with MS read this book.

I copied down some quotes from the book that have immensely useful information and sound identical to what I have been saying for years (be advised that some of the quotes contain vulgar and/or offensive language):

"I left the clinic with two feelings: relief for knowing what I had, and an underlying grief because things would never be the same. I was in better shape than my husband and cousin, though. They walked out with heavy hearts. They kept telling me how brave I was. This was not bravery. This was just life."

"I felt that whatever was going to happen was now set in stone. There was nothing anyone could do."

"I felt like there was a reason I got this stupid disease, and I was going to find that reason. I was not going to let this stop me from living my life the way I wanted to live it. I was not going to let this stop me from being my glamorous, red-lipped, musica-fashionista self. Slamming my glass down after another swig, I declared, I am not letting this stop me. I am going to leave my mark on this city if it fucking kills me!”

"Believe me, I am not brave. I said. Firefighters are brave; people who have choices are brave. I don’t have a choice, do I? I can’t pretend I don’t have it. I have to get on with things."

"Our nerves are like a system of wires throughout the body. They are made up of nerve cells that are connected by fibers called axons. Axons send nerve impulses, telling the body to pick up a glass, for example. Myelin is the layer of fatty lipids and proteins that protects these axons like insulation. In MS, the immune system attacks the myelin, causing this insulation to become inflamed. That inflammation can either heal or leave scars. When these scars occur, there is a break in the nerve impulses. For example, the message of picking up a glass gets slowed down or faulted. What happens? You break half your glass set, like me."

"If you keep a positive attitude, you will not get sicker. Tell yourself what I told myself: I will never be in a wheelchair."

"Some people cannot deal with illness. This doesn’t make them bad people; it’s just the way they are."

"From the days of my diagnosis, I did not want anyone to feel pity for me. I felt that I had a lot going for me and that a stupid little disease like MS was not going to make me any less magnificent. It was not going to make me less talented, less creative, less intelligent, or less anything. Fuck that, I thought. And fuck anyone who pities me. I still think that, by the way."

"I began to feel a loneliness that I had never quite felt before. I had the support of William, family, and friends like Laura and Colin, but essentially, I was alone with a disease in my brain. Knowing that there is a disease trying to debilitate your body is a lonely thing. No matter who supports you, the ultimate person to help you is yourself.

"I am not a particularly religious person, though I am a spiritual one. I believe that God helps those who help themselves, because what God is, we are extensions of him. I don’t believe in sitting around, waiting for miracles. I wholeheartedly believe in miracles, but I believe that each of us has the power to make a miracle happen ourselves."

"In all the weeks of learning about other people, I was learning about the most important person of all: myself. I was just starting to learn that I had an inner strength that up until then, I never needed to discover. I was also learning that I had dark places inside me…"

"I tried to stretch myself too thing. I wanted to overcompensate for having an illness. I wanted to be Supergirl, no matter what the cost. I thought that if I made myself run a high speed, the MS would not be able to keep up."

"…it began with a few nights of bad sleep. I would get into bed, and just as my body started to relax, I would feel a tingle in the bottom of my foot. The tingle was a tightening of the muscle. It would not let up and kept me up for most of the night. Each night the feeling got a little tighter. Then without warning, the situation worsened. It was probably the fourth night when the tingle in my foot started to creep up the back of my leg to the knee. The tingling became a prelude for a pain that became my nightly torturous companion. The tightening had become a feeling of ripping and burning. I felt like my leg muscle was being ripped apart and twisted. After a few more nights, the pains began to sneak into the other foot and leg as well. In the States, the term ‘charley horse’ is used when your foot cramps underneath it and up into the back of your leg. This was like a double charley horse orchestrated by the devil himself."

"Killing myself started to look like a pleasant escape from the hell I was in."

"I was leaning over to zip up my jeans, when a weird thing happened. As I leaned my head forward (chin towards chest), I got a feeling of a zap in my foot. It was not a bad feeling. It was a beautiful jolt of electricity. It tickled, actually. It was the first time I had felt something good in a while…it’s called L’Hermitte’s sign…it’s named after the man who discovered it. It is common in MS. An electrical impulse goes down the spine and possibly the legs when the person brings his or her head forward. Why does this happen? I asked…it says that it’s from lesions on the spinal cord."

"Don’t tell me everything is going to be OK! I would roar. I am in so much fucking pain! None of the painkillers have helped me! I want to jump off the fucking roof! Do you understand? I want to kill myself. I want to die. I want to fucking die…Why the hell does it have to be so hard? I am so tired. I have never been so tired…"

"With this disease, if you give it an inch, it will park a truck in it."

"Then I began an assault of blaring screams at God. 'What the fuck do you want from me? Do you want me to learn something from all of this suffering? All I’ve learn[ed] is that suffering sucks!'"

"I could not see the color red properly. Bright reds looked dark red and slightly brown. I hadn’t realized it until the exam when the doctor showed me a red object and asked me to describe the color. This was happening because I had optic neuritis, a swelling of the optic nerve the runs behind the eyeball."

"You will pull yourself together. You will pick your heart up off the floor, put on your red lipstick, and get moving."

"…relapsing-remitting MS is like being in a bad relationship. Sometimes everything is great, and life is fantastic. Other times, you are treated like crap and wonder how you ever got there. You cry every time, even though essentially you are crying over the same thing. It will never get better, and your friends keep telling you that you are beating a dead horse. It’s a cruel, vicious cycle. Unlike a bad relationship, though, you cannot get away."

"The problem with my scenario was that my bosses continued acting like they were wondering why I was still sick. So many times, one of them would say to me things like, “Shouldn’t you be feeling well by now?” It became increasingly upsetting."

"If I have a disability then I am going to make use out of it. I am going to make lemonade out of these lemons."

"I began to realize how many challenges there are for those people with any disability, not just MS."

"Look at us (people with Multiple Sclerosis). Look what we can do. We are fucking unstoppable."

"Getting MS had given me the opportunity to become more sensitive to other people’s needs. It opened my eyes further and gave me more purpose."

"Through trial and error, I found taking primrose oil to be greatly beneficial to me. I also started eating better. I ate more oily fish. I tried to eat less cheese. OK, I can’t stop eating cheese every day! I love it!"

"I also started to rest when I felt tired. I was realizing that like infections, stress was a trigger for my relapses. Every single time I had a relapse, I was either completely stressed out, had an infection, or both."

"When you hear the word disability, remember to focus on the ability part! You can do anything you put your mind to! Don’t let anything or anyone stop you!"

"I sighed. I was a changed person. Pain had changed me. Experience had changed me. Multiple Sclerosis had changed me. I was not the same girl I used to be."

"I am in fact, better than the girl I used to be. I am stronger and better in every way."

"I would not change my life for anything. I have been through too much. I have learned too much. Now I know what I am made of. I am fabulous, [] gorgeous, [] tenacious…"

 

 

 

 

Hope

Often, I find myself scouring medical articles for a glimpse into what is being done within MS research. Today, I found an interesting combination of ideas and theories that I've yet to explore previously. Though the idea is rather far-fetched, it's interesting to think about the possibilities of a cure for an incurable disease. Though I do not readily support these ideas, I do find them to be interesting, and I do see the purpose in its content.

Please keep an open mind when reading and watching the below information. You may find yourself sitting in silence as I did after I consumed its information.

Article on Possible MS Cure

Video on Possible MS Cure

Is it You?

You do not know me, but I feel a strong connection with you after reading your posts of encouragement, bravery and self-discovery. I was diagnosed with MS ten years ago and feel ashamed for my actions, thoughts, behavior, and attitude since learning of the diagnosis. You being a young woman of 27 who was diagnosed in the prime of her life at 20 only to come out a stronger person having been diagnosed still floors me. I wish I could say that I am like you and am a stronger person after going through what I have. I'm not. In your post, "Seven Years," you mentioned that you were selfish before the diagnosis, that you believed your life to be over, that you were okay with the disease running its course and taking over your body. You've mentioned in previous posts that you were and still are scared. You've mentioned that you felt alone and still have days where you have feelings of loneliness. How have you been able to get through something so horrible only to become a better person for having gone through it? How can you be so positive when you have a disease that will shorten your life, that limits your overall joy in life, that prevents you from doing what you love, that shadows you with fear daily?

I am at a point in my life (43) where I feel that no one understands, no one cares, and that I will get worse. I pray for the day that I can have the same outlook that you have and begin to accept what I cannot change and help others like you are. Until that day comes, I feel as though I'm trapped in a world of pain, fear, and the dependency of medication.

I read your posts as soon as they are published. The information you've shared has really allowed me to question the person I am today so I can become a better person for myself tomorrow. Your words do not go unnoticed and your actions show how beautiful you really are. We are in this fight together. Thank you for fighting for me.

Yours Truly,

Louise - Washington

***

When I first developed the idea of writing this blog, I did it purely to relay the information I have gathered and learned about over the last five or six years to those who need it. When I was diagnosed, I felt alone. I had questions, but I could never really get them answered. I'm writing this to answer as many questions as I can about what I know, and along the way, I hope we can all learn more about a disease that can be extremely devastating.

Louise, though we have never met, and though I can only reach you through the words I write, never forget that there is a very unique bond between you and I: through our diagnosis, our struggles, our fears, and our triumphs, we can relate to one another on a level that many cannot comprehend. When one has a life changing event occur in his or her life, the way the event is handled depends on the process of grieving and the individual. It is not uncommon to have negative thoughts, behaviors, actions, or attitudes when enduring what you are. In fact, it is very normal.

The fact of the matter is that I am scared every single day. However, just because I am scared does not mean that I can dwell on something that has not happened yet. Why live a life dwelling on something that has already happened in a negative way? Why live my life dwelling on something I cannot change? It is no ones fault that I am sick; it's not my fault, either. I have accepted what I cannot change because that is the type of person I am. Most importantly, however, I am living my life in a way that allows others to realize that a life is not over when something such as MS comes creeping in. Although I cannot change what has happened, I can determine how I handle the situation(s).

I started playing the violin when I was in first grade. I'm rather good at it, and it is something I thoroughly love to do. However, the dexterity in my hands have lessened since the diagnosis resulting in the inability to do something I love. This does not mean that the music is not still inside me. This does not mean that I don't still understand the connection I feel with the music that I used to play. This does not mean that I have given up classical music forever. This simply means that I have to find other ways to do something I love. I can still hum the chords in my head while I'm writing music. I can still pick up my violin and hear the rich sound radiate from its core. Even though I cannot continue doing what I love doesn't mean that I no longer receive joy from it.

I remain positive for myself and others. If I allow myself to dwell on the negative, what does that say to my family, my friends, to my growing niece and nephew? I do not, under any circumstance, allow myself to give up nor will I allow that of those I love. Regardless of the adversities we face, there is always something that could eventually stand in our way to prevent our dreams. It shows our character to move forward past the road blocks to achieve something far greater than we originally imagined.

As I have said before, I am scared every single day of my life. I'm scared that I'll wake up unable to walk. I'm afraid that I'll close my eyes only to open them without the ability to see. I'm afraid that I won't be able to feel the small kisses of my niece or nephew or feel the arms of my boyfriend wrapped around me. I'm afraid that my years of education and my degree will be of no use to me if my cognitive abilities fail me. However, I do not dwell on something that has not happened. I can't - you can't. The fear we possess can feed and radiate ten fold if we allow it. This fear is what ultimately takes over us, and we are much better than that.

All I can say to you is for you to live your life, love what you do, and do not be afraid of something that has not happened. Make 2013 your year to become the woman you want to be despite having MS. Always remember that YOU have MS - MS does NOT have you. You control your emotions. You control your reactions. You control your behavior. You control what you can and cannot do.

Louise, it took me many years to get to where I am at today. I still have my moments of being paralyzed by fear and worry, but the support I have is something indescribable. I know I can do anything I set my mind to, and so can you. You are stronger than you believe, and when you truly allow that fight to radiate from your being, you'll be able to conquer the biggest obstacles and/or fears.

I am here with you fighting for the same things as you are. How you choose to win your battle is purely up to you, but I have the utmost faith that you can and will come through this a much better, much stronger, and more courageous woman than before.

Seven Years

It's difficult to remember my life before Multiple Sclerosis. Although I always was able to pride myself on being a nice person, there were numerous aspects of who I was that was, well, selfish. Many contribute it to being 20. I was still learning about the world and myself.

I guess that sounds good enough.

I had grown up with an ill mother who, for one reason or another, could never quite take care of herself to prevent the inevitable. She always seemed to lean on others which is part of the reason why I believed I was as caring as I was. It is all I ever knew to be. Quite frankly, it was my mother who truly made me into the persona I am today. I would never know how to care had it not been for her. However, once I was in college, once I was on my own, the only person I truly seemed to care about was myself. Sad, I know, but I felt that it was my time to live my life.

My selfishness soon crumbled beneath me.

December 17, 2005 is a day that will forever remain with me, and to a certain degree, haunt me. This was the day I was diagnosed with Multiple Sclerosis. I knew nothing about the disease. I had no idea what it meant to have MS. I strongly believed that my life was over. I remember trying to fall asleep that night in my hospital bed with tears streaming down my face. I remember thinking that I lived 20 years, and although short, it was a nice life. I had memories. I had friends. I'm sure someone or something would remember the vibrant girl I was in high school.

That soon passed. I felt like an empty shell of who I once was. This disease had stolen who I was trying to become. This disease robbed me of a life I dreamt of having. This disease would take me prisoner, and I was okay with that. I didn't want to give any more of myself. For all intents and purposes, I was content with letting it run its course and do what it wanted with my body.

Eventually, those thoughts left my mind, and I was determined to prove the disease and my doctors wrong. For all who knew me, this was something I would always do. I fed off of proving something/someone wrong.

Years of being a guinea pig to medications I knew nothing about, to side effects that made me feel like I was dying, to anxiety, to fear, to many constantly telling me that it was okay to just "give up" soon took it's toll.

However, thinking about that now still makes me giggle a little.

I had developed a mindset that consisted of yelling at myself if I couldn't do something then trying until I could eventually do it. Walking, running, talking, forming coherent sentences, giving myself a shot, typing, buttoning shirts, zipping pants, opening a car door, unscrewing bottle caps, taking a shower...everything - even if it took me hours, even if it hurt, even if the frustration was so immense that I sobbed like a child while doing it, I still did it.

Though seven years have passed, I still remember December 17, 2005 like it was yesterday. Out of the shock of it all, I was happy that I knew - finally - what was wrong with me. I finally became an advocate for my health. I stopped taking the medication that caused liver damage and have been MS therapy free for a year. I still have my bad days. I still fall asleep at night hoping that I'll wake in the morning still able to walk, I still fear what may happen to me as I get older, but now, it's all different.

Now, instead of giving up, instead of allowing something to take over me, instead of constantly questioning why, I use my experiences, my hopes, and my drive to move forward to help others. Now, I find myself better capable of empathizing with others and being the support they desperately need. Now, I love my life. Now, I love my family more than I can imagine because without them, I'd still be that empty shell of a person I once was. Now, I thrive on doing something new. Now, my drive to prove so many wrong is stronger than it ever was before.

I was told I wouldn't walk normally again? No, I walk perfectly.

I was told I wouldn't be able to finish school? No, I earned my bachelor's in May and am going back for my master's in September.

I was told that I would be forever required to be on medication to sustain myself? No, I've been away from MS therapy for a year and feel better now than I did just a year ago.

I was told that I wouldn't be able to have a lasting relationship? No, I'm with a man who celebrates my triumphs and picks me up when I fall.

I was told that my life was over? That's just funny.

It's amazing how something so devastating can be such a positive turn in an individual's life. Being diagnosed with MS was a road block that I have and am enduring. However, being diagnosed with MS was a blessing in disguise to me. It helped mold me into who I am today, and who I am today is just a stepping stone into the phenomenal woman I am becoming.