5 Years Ago

5 years ago on this date, I was scheduled for an appointment to go over my MRI images with neurologist I had only met once before. Before getting there, I remember thinking “they’re not going to find anything and the way I’m feeling will remain a mystery until I unexpectedly die”. That thought, actually crossed my mind and I didn’t think any “bad news” was going to come from this visit, because wouldn’t they have told me to bring a loved one with me? (I was only 20 years old). I remember every little detail, down to which parking spot I parked in, the weather, and what I was wearing. I guess when it’s one of the most devastating days of your life, your brain captures as much as possible.

As I walked into the building, got into the elevator, pressed the button and made my way to his office, I felt cold because the AC was turned up too high. I was slightly nervous (I think I suffer from white-coat syndrome) but not anymore than I usually am. Nothing in life ever prepares you to be diagnosed with an autoimmune disease, especially at the age of 20. When my name was called to go to his office, so I jumped right up and walked in there. The doctor shook my hand like it was our first time meeting, like he hadn’t remembered doing all those odd tests in his exam room that made absolutely no sense to me. He then pulled up the images of my brain, (I was kind of giddy about because I never saw an imagine of my brain before) and said, “can you see that there”? It looked like a “normal” brain to my knowledge, but I did notice what he was trying to point out. It looked like fading, blurry parts of the image. As I sat back in my seat, I asked “what is it?” The doctor replied, “You’re showing early signs of Multiple Sclerosis”. I instantly started crying, even before he finished his sentence. I remember feeling confused, overwhelmed, and thinking am I going to die? From there it was awkward silence, and I muttered “how did I get this”? The cold neurologist replied, “we don’t know”. I barely knew anything about MS, other than I was just diagnosed and as I’m sobbing, thinking could you be any more vague [eyes-roll]? ‘We don’t know’ as you don’t know, or neurologists in general, don’t know? While he explained further about MS, he also threw out what I like to refer to as an “old-school opinion” that I should/can not have children of my own. Not knowing what I know now about MS and pregnancy, I was sick about not being able to carry my own children. Also, not realizing how “old-school practices” works, he also proceeded to say that there is no cure (truth), but that I would ‘most likely’ end up in a wheelchair. That’s when I walked out. Everything broke me. Back to the elevator I went, sobbing and face completely red. I called my mom to share everything with her, and was trying to be quiet because I sound like a maniac when trying to talk while crying but she couldn’t hear me mutter the words, “I have MS”… so I screamed it. She started to cry, and was worried about my condition to drive home. She asked that I call my boyfriend (who is now my fiance) before driving home. She also suggested we get a second opinion. While I appreciated her enthusiasm, all I wanted was to forget I had gotten bad news. Put my brave face on and act like nothing was wrong. But first, I did call my boyfriend and tell him. He was extremely supportive saying, “we’ll get through this together”. But it was already decided in my mind, get through what? And that’s exactly what I did. I dealt with the symptoms on my own, not sharing too much about how/what I was feeling. I stayed quiet for the whole first year of having MS. I didn’t tell people, I pretended it didn’t exist, hoping it’ll just go away if I pretend I don’t have it. Nope, wrong.

When I finally found a neurologist I understood, he ordered another MRI. This MRI then showed progression, which is when I realized how serious this may become. It broke my heart to admit, I’m different from everyone else. That I would now have this ‘diagnosis’ labeled on me. After 5 years with this label, I’ve realized that the hardest part is having to “prove” how sick I am despite looking fine on the outside. Or the assumption that making people aware of MS is used for attention. I don’t want your attention. I want your respect for carrying on my day, despite my battle with fatigue, pain and my concerns about where this disease will take me.

Every day is a battle. Some days, MS puts up a good fight, but I am much stronger – especially after 5 years. Happy MS Anniversary to me. I am Made Strong.

 

 

Four Years Later…

Well, here it is… 4 years since being diagnosed with Multiple Sclerosis. 4 years strong means surviving through trial and error attempts at medication (more than 1), 8 MRI’s, countless blood drawn, a spinal tap, loss of vision, extreme fatigue, sleepless nights because of my bladder, a whirlwind of emotions including severe anxiety and many days of crying because I was too weak to get out of bed… that’s what it’s like to have MS. Whenever an MS anniversary comes and goes, I get the same reaction… “is that really something to be happy or celebrate about”? I’m not celebrating having MS, it’s not a birthday party. I am celebrating because I am stronger than I was 4 years ago when I got the devastating news. No, for the record I am not happy I have MS – do you know anyone who is? I am happy because I am now fearless. Nothing scares me anymore. My dark days made me strong, or maybe I was already strong, and they made me prove it. Don’t judge a person on what you can see, he/she may be fighting cancer, or an incurable disease. She could be a person in chronic pain, they come in many forms. She is breathing, but she is hurting. She may look young, but she feels decades older. She smiles, but her heart sobs. She walks, she talks, she cooks, she cleans, she works, when she can, and sometimes when she can’t. She IS, but she IS NOT, all at once. She is here, but part of her is missing. She fights a battle you will never see. But if you take a moment to look beyond the smile, you might see that girl is me. Thank you MS for opening my mind, I’ve changed many opinions because of you. Thank you for showing who my true friends and family are through their understanding and guidance. Thank you for giving me an MS family I never knew I needed. So, bring it on MS – you may have won the battle but I’ll always win the war because I’m alive & I am grateful.

“I am thankful for my struggle because without it I wouldn’t have stumbled across my strength”. 

“You gain strength, courage and confidence by every experience in which you really stop  to look fear in the face. You are able to say to yourself, I lived through this horror, I can take the next thing that comes along. You must do the thing you think you cannot do” – Eleanor Roosevelt 

 

 

Parenting 101

It’s been happening more often every summer… parents leaving their children in a car when temperatures are too hot. Why, you ask? I wish I knew the answer, but here are my thoughts. Everyone is praising the idea of making devices to “remind” them to check the backseat before they get out of the vehicle. I’m not faulting the idea of people wanting these devices because ultimately they may save innocent lives, but why aren’t we more concerned with why we need a device in the first place. Children are human-beings. Humans that rely on adults – their parents to protect and take care of them. They aren’t accessories. You can’t just say oops, and act like it never happened. I stand firmly behind the idea that if you need a “reminder” that your child is in the backseat, then you shouldn’t be a parent. Are you going to forget to feed them too? I make mistakes, I’m human… but a “mistake” shouldn’t cost a child their life. I genuinely feel like it is a lack of responsibility. Instead of being so distracted by their phones or work, parents should pay more attention to their children. I’m not sorry for my opinion; I place higher standards on adults who are responsible for caring for their children. If they can’t take on that role completely and dedicate their lives to raising (which means not killing) their children in a hot vehicle, then they shouldn’t have became parents in the first place. As sad as it is to say, this country would be better off if they offered a Parenting 101 class to first time parents. Here’s your first tip: don’t leave your child in a hot car. You’re welcome.

Dakota Jane

It was the hardest decision I’ve ever had to make in my life… and it was solely rested on my shoulders. I had asked for opinions, but it was more like asking for blessings on a decision I had already made. Dakota was suffering, and it was my duty and responsibility to know when she was ready, even though I wasn’t. I knew I would have more than one terrible day in my lifetime, especially as I get older… but nothing in life ever prepares you to make a decision to end a life, even if she was “just a dog”. Dakota was literally my everything, not just a dog. She came into my life shortly after being diagnosed with MS. She became my savior, my heart, my keeper, and ultimately my very best friend. From the very first time we met, I knew she was going to have the biggest impact on my life. We drove 3 hours to get her, which made for an interesting ride home. She snuggled right up on my lap the whole ride home, and whined like a baby. But now more than ever I miss her whining. I miss her big ears and beautiful brown eyes. I miss the sound of her ‘clickety, clack’ nails on the hardwood floors. I miss her perking up her head when I would say, “Gotta go poo”? Or the reaction she would get when she’d notice the snow outside during the winter… she loved snow more than any other dog I know. She had the biggest personality, and the biggest heart. Best of all, she could read my emotions like a book. She knew when I wasn’t having a good day, and how to cheer me up when she was lay her head on my lap. I so deeply miss the littlest things like being able to pet her, talk to her, or sing to her in the kitchen when I did the dishes. I miss saying ‘goodnight’ to her before bed, or waking up in the middle of the night and looking down to make sure she was fast asleep on her bed. It’s funny the small things you take for granted when you think all good things live forever. I used to constantly complain about how Dakota would follow me around our apartment. Anytime I would get up, she would try to beat me to whichever room I was going to next, or she’d try to guess and cut me off while I was walking into that room; I’d trip then scold her about getting in my way. Now, I walk into a room and actually miss being cut-off, or followed. The quiet apartment has to be the worst. No more barks out the window when people walk by, or the mail gets delivered. It’s just so damn quiet.

I feel like I’ve lost my identity without being a dog mom, like who am I without my dog? She was the best part of my life. She allowed me to forget how cruel the world can be when I would look into those brown eyes. She was so happy and full of life, and I will always cherish those memories. Luckily, she was extremely photogenic so I have plenty of pictures of her too. Day by day, I am trying to move on but often feel guilty about the littlest amount of happiness. It’s hard to explain, but I’ve lost a part of myself and I know I will eventually be able to think about her without crying, but until then I will continue to wish her goodnight and keep in the back of my mind that she’s no longer suffering.

“You no longer greet me, as I walk through the door. You’re not there to make me smile, to make me laugh anymore. Life seems quiet without you, you were far more than a pet. You were my family member, a friend, a loving soul I’ll never forget. It will take time to heal, for the silence to go away, and miss you every day. You were such a great companion, constant, loyal, and true. My heart will always wear the pawprints left by you.”

Mommy loves you so so so much Dakota Jane.

Oh, Washington

“…. But if you’re looking to be spooked by really tall trees then you’ve got to go to Washington state” – Dar Williams

From the time my plane landed, I was in love. I wish my love for Washington state was easier to describe in words. It’s more of a feeling I get. I had the opportunity of visiting Washington state in April 2016 because my best friend moved there. It’s the state I never knew I wanted to go to, but I’m sure glad I did. The trees are tall, and the people are nice. I love how open, and clean the state is. Anywhere you travel within the state is an adventure because the views you get to enjoy. I could spend endless hours just driving around on a clear day and seeing the mountains, the trees, the animals, etc. When I was there, I went on an excruciating hike that I honestly didn’t know if I was going to complete. Mt. Walker is apart of the Olympic National Forest which is west of Seattle. I’ve hiked a lot of mountains in the Adirondacks in upstate New York, but this hike was unlike any I’ve ever done. I felt bad for my friend, Avery who was doing much better with the hike, than I was but luckily, I was able to finish the hike and enjoy not one, but two breathtaking views. There was both a North and South Summit. I loved both views from the top, but preferred the South summit because it’s facing Mount Rainier. The state is also full of colors, from the trees to the water – which is very blue in most places. It’s the simple things in Washington that brings happiness to my heart. In order to preserve the nature and beauty of the state, they’ve banned plastic bags in many of their cities which I’ve always been a huge advocate for. Seattle is unlike any city I’ve ever been to. From the city lights, to the Space Needle, to the Woodland Park Zoo, to the Great Wheel. I just felt so alive when I was traveling by myself, especially to a place I’ve never been which was 2,943 miles away from home. Washington offers tall trees and cold seas. It’s the wandering around in rain-boots. It’s the trails within the forest. It’s the unstable feeling of the ferry crossing the Puget Sound. Washington state has my heart, and I can’t wait to go back – October can’t come soon enough!

 

 

What is MS to You?

I wish it was easier for me to explain what Multiple Sclerosis (MS) is for those who don’t know… I’m going to try my best to explain how I feel with MS, so here goes nothing.

MS is a constant reminder that no matter how hard you work, or how decent you think you are as a person, life doesn’t always go your way. MS is finally getting into a comfortable position in bed to fall asleep, but either getting a sudden burst of energy or having to get up to the sudden urge to pee. MS is a constant reminder that no matter how “put together” you might feel like you are, you’ll still forgot to do that one thing which in fact ruins your whole day. MS is a constant reminder that no matter how educated you are, you’ll still have trouble speaking or spelling words that are fairly simple to most people. MS is the “I just forgot what I was going to say” moment that makes people question our intelligence. MS is the voice inside my head that makes me doubt my future, or if I am going to ever “make it”. MS is a thief and a villain. MS is a life sentence. MS comes and goes as it pleases, without warning. MS is a struggle, a battle, and sometimes a war. But myself, and the other incredible MSers I’ve met over the years fight because we are brave. We fight because that’s the only choice we have!

I’ll definitely be adding more to this post, as it comes to me in the future!

Babbling On…

It has certainly been awhile since I last wrote on here so I’m not sure where I want to start… When it comes to my writing, I like structure but I’m going to try something different and write whatever comes to mind in the next hour or so – here goes nothing!

Lately I’ve been struggling with where I am in my life… I graduated college in December with a Bachelor of Arts Degree in criminal justice from SUNY Delhi and I am still trying to figure out where I want to go with my degree. I knew there would come a time and place when I needed to make a decision in how I would like to use my degree, but I didn’t realize how difficult this process would be. I say this because I like a lot of different aspects of the criminal justice field, to the point where I want to try it all – which is nearly impossible to do. All I know for sure is that I want to help people, have an impact on their lives. It has been difficult finding a job in my career field because it’s either all about “who you know” or it’s a waiting list to see how you rank with other men and women who are also entering the field. But maybe I’m not trying hard enough? Everyday I start to doubt myself more and more, thinking maybe I picked the wrong career… It’s a problem for not only me but for my boyfriend who has been gracious enough to pay all our bills while I’ve been in school the last 4 years him and I have been together. Now that I’ve graduated college, I feel it is my turn to step up and help pay our bills, and move forward with our future but I can’t exactly do that without having an opportunity to use my degree. I just feel guilty that Josh has had to carry the weight of our future solely on his shoulders, it truly breaks my heart because he deserves an equal, a partner. It really wears on me everyday that I can’t help out more – and I know it wears on him too.

On top of not being able to find a job in my career field, did I mention that I have 36,600 dollars in debt that I’m going to have to start paying back in June? That’s a beyond scary thought that I literally don’t even want to think about. I went to college for a total of 6 and a half years – I have an associates and a bachelor’s degree and I was unable to get financial aid because my parents make “too much” money. I had mentioned in an argument with Josh that “I almost wish I was born with lazy parents so I could’ve gone to school for free”. But that couldn’t be further from the truth – I am so grateful I have parents who work as hard as they do. They’ve shown me that hard work pays off and I wouldn’t have wanted it any other way. It just really bothers me that their annual income determined whether or not I got financial aid… How is that fair? My parents will help me when I need it, but that’s their money, not mine. They aren’t the ones who will be in massive debt for the rest of their lives so why does their income matter, you know? I just think that is wrong.

Well, it has been an hour and I’ve complained about my life enough for the night. I really should start writing more because I found I have a lot to say but sometimes it’s hard to find the time!

I See Your Light

I never used to be a “positive” person. It always used to bother me when I saw women posting about how great their lives are because I didn’t feel as it was true or authentic. It really used to drive me crazy thinking, “we all know your life isn’t THAT great…”. But who was I to judge their lives, or how happy they really are?

Within the last year I’ve really jumped on the positivity train because even though my life isn’t always “as it seems”, I knew half the battle would be how I responded to the setbacks. Earlier this week, I was on my MS_Fighters account on Instagram, and I had posted a quote, “I have MS but… MS is just a speed bump on the road of life, it may slow me down but it won’t stop me!” To which I thought was very positive and rang true to how I live my life. Obviously, I know that not everyone is able to live by this quote. But MS is different for everyone. With that being said, I knew some of my followers would relate, and some would not. I received a comment from someone who MS has affected differently than me – someone who is unable to get around as easily as I do. I genuinely do feel bad for this individual, never wanted to take away from his experience and struggle with MS, but like previously mentioned, I have experienced something different than him. I don’t think that I should be “looked-down” upon just because I choose positivity in my life. Although, I may end up in a similar situation, without the use of my legs in the future, I do not let that change how I think or how I act now.

For some reason this really stood out to me because he felt as if I was “making it seem like MS is just nothing more than an annoyance”… which I do not agree with. Most of my followers understand how MS is much more than that. And I never wanted to undermine the severity of having this chronic illness.

Everyone who has MS will experience something different, no two cases are the same. Just because I choose to deal with it with a positive attitude, doesn’t mean I deserve to be treated any less, you know?  Half the battle is remaining positive.

Courage

What does courage mean to you?

Courage by definition is: the ability to do something that frightens one.

Courage is the choice and willingness to confront agony, pain, danger, uncertainty, or intimidation and there are many different types of courage. Physical courage is courage in the face of physical pain, hardship, death or threat of death, while moral courage is the ability to act rightly in the face of popular opposition, shame, scandal, discouragement, or personal loss.

Courage to me is, waking up everyday knowing the struggles you may face, but continuing to live your life anyways. Many people associate courage with the color red. It is said, red is the color of fire and blood, so it is associated with energy, war, danger, strength, power, determination as well as passion, desire, and love.

Red is a very emotionally intense color. It enhances human metabolism, increases respiration rate, and raises blood pressure. In heraldry, red is used to indicate courage.

Courage could mean:
Feeling fear yet choosing to act.
Following Your Heart.
Standing up for what is right.
Facing suffering  with dignity.

Everyone could have their own definition of what courage is to them. My professor for Introduction to Painting had us choose a noun, and I chose courage because it has many differently meanings, really just depends on who you’re asking. In my opinion, I feel everyone carries some type of courage with them.

 

 

 

 

 

 

 

 

Here We Go Again

As if the Multiple Sclerosis diagnosis isn’t enough…

After being confirmed that I have MS, it wasn’t urgent that I start medication because I wasn’t really having any significant flare-ups. Fast-forward a year later, my MRI showed “active” lesions. My neurologist at the time suggested Copaxone, which is a shot I would take three times a week. I struggled a little with making a decision on whether or not I could actually give myself a shot. But after seeking opinions of others, I decided it was something I could handle. After being on Copaxone for a year, I had a repeat MRI which indicated the Copaxone wasn’t doing its job because I still had active lesions. I needed something more aggressive to treat these lesions. But in the meantime, I was going through the “why me?” phase all over again.

The “why me?” phase will never completely go away in MS patients. It sure hasn’t with me. This is because I’m sent right back to the same feeling to my diagnosis when something like, a medication not working (because there is only so many) happens. I was completely devastated when I learned that Copaxone wasn’t working for me, because some of my other friends have had such good luck being on it. Understandably, the disease is different for everyone but even knowing that, doesn’t make you feel any better about the outcome.

After finding out about the Copaxone and continuing a series of testing (JC Virus), we learned that I should steer clear of Tysabri because my JC level is ‘too high’ and can potentially cause PML which is a rare-brain infection that leads to death. Ultimately, my neurologist and I decided Gilenya would be a good fit for me. I spoke with some of my MS friends and they had nothing but good things to say about it. I was very skeptical about starting it because you have to be monitored in the hospital for 6 hours to make sure that Gilenya doesn’t cause my heart rate to go too low. Luckily, it didn’t and I started out strong. Gilenya made my body feel ‘normal’ again and I was extremely grateful. One of the side effects of Gilenya can be Macular Edema, which can cause blindness. In order to catch the Macular Edema early, I have to be screened every three months by eye exam. Well, after being on Gilenya for 7 months, I went in for my second visit. Unfortunately, Dr. Rheeman found a cyst behind my left eye. If the cyst continues to grow, I will go blind in my left eye completely. The only way to stop it from growing is to stop taking Gilenya. He believes it was caused from the medication because this cyst was not present at all three months ago. So here we go again…

Again today I said to myself, “Why me?”… I thought Gilenya was doing its job (which it may be) but it is also causing something that is 100% preventable if I stop taking it. I am frustrated, and it feels like I am starting all over again. Everyone says stay strong, but they don’t realize how much energy and tears that takes to do so…

Back to the drawing board for me.