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The past 2 years have not been it, here’s to 2021!

Despite the struggles you face, you’re beautiful. Continue to be reliable and transparent with your journey. The world sees you even when you feel invisible. Your willingness to love even after being discarded and forgotten is admirable. Be proud that you’ve grown to acknowledge your worth. -A.E.

Even though my MS diagnosis didn’t come until mid 2020, my life had been on a downhill trajectory for quite some time, which might be why the diagnosis felt like just another hit while I was down.

For half of 2019 I was in a relationship for the first time in a long time. In that relationship I found myself completely losing my self-worth, settling for less, and gaslighted. For an entire 6 months I was convinced I deserved to be treated the way I was treated. I ignored when I felt low or upset because he made me laugh, and when things were good I convinced myself I was happy. I convinced myself I was overthinking everything and over reacting to what he said and did. It took a blindsiding breakup and a lot of brutally honest friends to open my eyes to the toxicity of what I put myself through.

After the breakup, I was trying to build myself back up, regain my self-worth, and find happiness. And then I was assaulted in a Boston bar after an altercation with a very intoxicated, ignorant man. Physically, I only suffered a cut lip and a black eye, but emotionally, so much more. Twice in one year I was treated terribly by two men, and again I started to convince myself that I deserved it.  I still struggle with that thought from time to time.

In early 2020, before the world shut down, I went to court and faced the man who assaulted me. It was traumatic. His lawyer put the blame on me; I know, that is his job. But I wasn’t in a place where I could rationalize that his words weren’t the truth. He insisted that I instigated the man, and the results were warranted.  In reality, I did nothing to deserve a glass being thrown at my face. There was nothing I could have possibly done to a 6’2” 250 pound man in a bar that would ever justify what happened.

I started 2020 angry. I didn’t feel comfortable going out in Boston, constantly worrying I would see my ex or the guy who assaulted me. I was 25, single, frustrated with how I felt about myself and where I was at in life. I was losing sight of who I was. I knew I needed to make a change. I made the choice to leave teaching for the time being. I love teaching students with significant needs, but the emotional and physical stress I was putting on my body was not okay, and was only hurting the progress I was trying to make. Instead of taking a year off completely, I looked into masters programs to further my education and expand my career options. I also made the choice to move out of my parent’s house and further away. I knew I couldn’t be sure that I want to live in Boston if I never lived anywhere else, and I didn’t want to look back one day and regret spending my whole life in one city. So I looked around the country for Masters programs that were far enough from Boston that I needed to hop on a plane. I  landed on The University of Texas at Austin for a Masters in Early Childhood Special Ed with a course track that would lead to sitting for the BCBA exam. In February I went to Austin, got accepted to UT,  and I made the commitment to move.

Then the world turned to shit and we all know how the rest of 2020 went….

My MS diagnosis was an emotional eye opener. I had a chronic illness that is significantly affected by stress and mental health. Now taking care of my emotional state was more important than ever before. I took control of my diet, I cut out gluten and dairy, inflammatory foods that impact MS symptoms. I started working with a personal trainer, a physical therapist, and a social worker. MS put a lot on my plate, but I know that if I put the work in, I can give myself a better outcome.

Through all of this mess I recognized that I preferred taking care of others and ignoring my own needs. Which makes sense- I’m a severe special ed teacher- but I was using my job as an excuse for treating myself poorly. I realized I try to find people with flaws to distract myself with, instead of focusing on fixing my own. I realized I was dependent on external validation and took no responsibility for myself and my feelings. I realized that the saying is true, that if you don’t love yourself you will never accept love from someone else. Don’t get me wrong, I’m still angry. But I can do something about it. I work on getting my feelings out by writing this blog and talking to my social worker. I am more open and honest about how I feel and what I expect from the people in my life. I take less shit from people who have no right to presume they have any power over how I feel. Every day is a challenge but I’m bringing my new mindset into 2021. I guess my new thing is ending these posts with affirmations. This time, I’ll quote Alex Elle, who has been a huge influence on how I view my self-worth. I look at her affirmations daily.

  • I am allowing my pain to teach me, not harden me.
  • I will choose myself even when rejection is hard.
  • Dear self, you are more resilient than you let yourself see.
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Chronic Illness is Isolating

The past few months have been hard. Due to chronic fatigue….which caused me to miss days of work… which increased my anxiety…. which decreased my sleep… which increased my stress… which led to more MS symptoms…. I had to quit my job near the end of November. Leaving my new job was just another loss to add to the tally of heartbreaks 2020 has brought me . 

When I try to explain that I am unemployed at the moment and taking a month to rest, I can imagine people thinking to themselves, “that seems a bit dramatic”. And there are days where I get down on myself and feel the same way. I know I need to remember that I’m the only one experiencing what I experience everyday. I am the only one living in this body.

For as long as I can remember I have always felt the need to make others understand how I feel, which is part of why I’ve always been a complainer and I’ve always been an over-sharer. I did so in an effort to make people know where I was coming from. So they could quite literally “feel my pain” and understand . But that gets much harder when you’re living with a neurological disease that is invisible. I know people assume things about me and the choices I have been making, like staying home instead of working, taking long naps, and avoiding anything that over exerts myself. And as much as I wish it didn’t, it gets to me. I’ve always cared way too much about how people perceive me. 

It’s hard to remain positive. 

Even with all of my affirmations and reminders that I know what I’m doing, I have never felt more alone in this illness than I have the past month or so. I have had to be my own support system, check in with myself on how I’m doing and what I need to do to make things better. I know that a part of that is because of people’s judgments or assumptions. I feel like everyone must be thinking; she’s out of work, now she’s home all day with a cute puppy, things are fine. But they definitely aren’t. Quitting my job was incredibly hard. I miss the students so much already and felt like I was letting them and my team down. I’ve lost my sense of pride, and without that it is difficult to remain positive.

My social worker, who helps me manage the chaos that is my life, compared a diagnosis to the grief of losing someone close to you. At first, everyone offers their condolences and checks in on you and grieves with you. Then everyone returns to their normal life, while you continue living with your grief. Getting an MS diagnosis was similar. At first it’s new and scary for everyone in your life. Everyone says they’re thinking of you and continuously checking in on how you’re doing, then, people move on with their lives. But I continue to wake up every day without the pleasure of moving on, and instead, chronic pain and the anxiety over what my future with MS holds. 

It’s been hard to remain positive, but I will end this post with some affirmations, because maybe they will help…

  • I don’t need to explain myself or my choices to anyone- I am making the choices that are best for me and my health, and I don’t care what anyone else thinks. 
  • Things right now are tough, but I am tougher.
  • There are people fighting bigger battles than I am and sticking it out.
  • Nevertheless I will get though this difficult chapter, and every day I get to wake up in an able body and know that I have people who love me, so while I am currently a little bit mad at the world, I am also so very lucky for all that I have. 
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MS is Really Frustrating

Today things hit a peak. Today, MS got the best of me and there was nothing I could do to overcome it.

The past few weeks have been hectic. I started working full time and I am really enjoying it. I missed being in a classroom. After teaching full time year round for 4 years, the past 6 months of virtual teaching just hasn’t given me the same joy. Running after kiddos, working on their goals, and getting to see their smiling faces has reminded me of how valued I feel as a special educator. But it was a tough adjustment. I went from barely moving throughout the day to walking 5 miles around the school last Monday. The change of pace is difficult for everyone, going from living a quarantine lifestyle to working full time, no adjustment period. It has been especially difficult for me and my MS. Being out of the house for 9 hours and then attending night classes full time was way more than I could physically or mentally handle. Between the many drs. appointments, physical therapy, the chiropractor, and classes- I was over doing it. My body was so tired and my brain was burnt out. So I had no choice. I had to cut back on classes. But as anyone who has attended any college or university knows, it’s all about the money. You drop classes? You lose your scholarship. You aren’t taking full course credits? You no longer get in-state tuition. Not only will it now take me longer to complete my program, it will also be more expensive per credit. All because I have to deal with chronic health issues. MS is really frustrating.

This weekend I was so tired, that while curling my hair to go out to dinner on Saturday, my bicep spasmed and I dropped the 400 degree iron on my neck. Now I am sporting a nice big burn in the most inconvenient spot, trying to keep it out of the sun and moisturize it to prevent scarring. Then last night I woke up at 3 AM to use the bathroom and I couldn’t walk. Every muscle in my body ached and felt weak. I imagined it was how runners feel after a marathon. I woke up the next morning and was no better. I was dizzy, my eye sight in my right eye was blurry, and if I was in any position other than laying down I had pins and needles from my hips to my toes. So today, MS got the best of me. I had to take the day off of work, which is always accompanied with guilt, as anyone in special ed can attest to. I spent my day in bed, trying to regain my strength, drinking an obscene amount of water to see if that would help, and sulking. I wished I was home with my parents. I felt alone here in Texas without all my people who bring me comfort. I was angry with the university for taking away my scholarship and lesser tuition. I felt useless in my own body. But then I remembered what my neurologist told me. This isn’t going to be easy, and there are going to be hard days, but right now, I have an able body. I CAN walk around the school for miles, and run after my students on the playground. I CAN attend classes and learn new things to advance my career. Things may be more difficult, and they won’t always be comfortable, but I CAN do the things I want to do. And for that, I should be grateful.

So this evening I am changing my tone. I am not always happy with the hand i’ve been dealt, but I am resilient. There are going to be days where MS gets the best of me, but there will be far more where I get the best of MS.

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Heat Intolerance

Very few people like being hot. So when I say I hate the heat I know I’m not stating some sort of outrageous opinion. But when I say I hate the heat….I mean I really REALLY hate the heat. 

About a year before my MS diagnosis I was diagnosed with heat intolerance. My face would flush way too easily and I’d get extremely tired after time in the sun. If you’ve seen my complexion you might be thinking ‘well duh, you are translucent”. But its more that just red cheeks and bit of sweat, its a bright red face that feels like fire and a body so sweaty I feel like my blood is boiling. Before my MS diagnosis I felt like a whiner. Maybe I was over reacting and things really weren’t that bad, and maybe it was all in my head.

But with my MS diagnosis came the validation that I was not just a crybaby (this time). Actually, a lot of people with MS have heat intolerance. Heat intolerance is described as a hypersensitivity to heat. If you have heat intolerance, your body doesn’t regulate heat as it should. Your brain doesn’t tell the rest of your body to cool down. So instead, you feel like your body is baking from the inside out. Unfortunately, as the disease has progressed over the past year, I went from over heating during a cardio class or a few mile walk in the sun, to experiencing heat intolerance symptoms multiple times a day.

To give an example; Last week I went to a rooftop bar with my friends. It was about 7:30 pm, we weren’t in the sun, and there were fans blowing right on us. It was a 100 degree day. And sure, everyone was sweating. But I was melting. In these situations my breathing becomes labored and my heart feels like its going to beat right out of my chest. My Optic Neuritis acts up so my sight in my right eye goes blurry. It is more than enough to ruin a good time. It would be one thing if it only happened in situations like these, but it’s more than that. It’s when I clean my apartment, or walk to the mail room, or take a shower, or do literally anything that may increase my internal body temperature by the tiniest amount. 

When I feel this way it’s hard for anyone to notice. Unless I’m actively complaining, people don’t realize what I’m going through. Aside from a red face after a workout, my discomfort isn’t visible. If you know me , you know I’ve always expressed my complaints (not my best trait), but this is different. If I were to complain about my heat intolerance or my MS and how it is making me feel, I would be complaining all day every day. And who would want to spend time with that girl?

One exciting thing about having MS in 2020, is that there are ‘cooling devices’ that help give your body the signal that it’s time to cool down. So far I have tried ice packs and a cooling towel. Neither of which are very fashionable, and they make me look like a major drama queen, or like an elderly woman (no offense to the older ladies out there). But I’m lucky, years ago there were no discrete cooling cooling vests, ‘fashionable’ cooling scarves, or ice packs made in every shape possible. As I continue on this journey of understanding my illness and fighting through the tough times, I need to remember I am fortunate enough to have options on cooling myself down, no matter how silly I may look. So if you see someone out and about using a cooling device, don’t judge. If you think someone is being over dramatic about how hot they are, try to be understanding. And if you catch me with ice packs on multiple parts of my body, don’t be surprised. We probably hate the heat more than you do. 

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My Diagnosis

Having MS Sucks

I’ve never been athletic. If it involved any sort of hand eye coordination, I sucked at it. But growing up I could hang. I could “participate” in sports and run around with all my friends. In high school, I could keep up during practice (I was the slowest, but still) and then go to dance class for 2 hours no problem. In college, I could run miles every day to and from class (since i was almost always late),  walk around Boston at all hours of the night, and keep up with my friends on the weekends.

Then I graduated… and slowly things started getting harder. Walking from the parking garage to the building I worked in was exhausting. I’d be out of breath for the first several minutes of the work day. When I would get hot at work, I couldn’t cool down. My face would get so red it felt like it was on fire. I went from being someone who never napped, to taking 2 hour naps every day after work until dinner.

I thought maybe I was just getting lazier, or I wasn’t in “shape”. I thought it could maybe be my mental health, and I felt fatigued because I was anxious or depressed. But it never made sense since my anxiety and depression was more under control than ever. I went to the doctor in 2018, and she thought maybe I just needed to move more, get into a good exercise routine, and she diagnosed me with heat intolerance because my symptoms matched it. But I was told I could probably deal with it and that once I got into better shape I’d improve and the heat and movement wouldn’t be so hard.

But things didn’t improve. I felt worse with everything I did and felt worse about myself because of it. I couldn’t understand why everything was so hard for me. I gained more weight, started feeling less motivated, and was so unhappy with how things were going for me.

Flash forward to this February. I started to realize my vision was getting blurry in my right eye after I got out of the shower or when I was walking my dog. In March, I completely lost my sight in my right eye during a dance workout. Then COVID hit, and like most I decided to start exercising more to try and stay busy. With the increase in exercise came more issues with my vision.

Now if you know me, you know I am a complainer. As soon as something hurts or feels off, I tell my family or my friends. But this time was different. It was like I had a gut feeling this was more serious.

So I kept it to myself.

I’d mentioned it to friends occasionally, but just thought it was related to the heat intolerance. But when it got bad I finally told my parents and my sister and after some convincing, I went to Mass Eye and Ear. After some tests I was diagnosed with Optic Neuritis, a swelling of my optic nerve, which can cause vision changes.

I was told that having Optic Neuritis gives me a 50% chance of having MS. I felt pretty good about my odds. Then my neurologist suggested an MRI. They found lesions on my brain, and the percentage moved to 75% likely. I was less optimistic. Then they suggested a spinal tap, and my spinal fluid showed differences found in those with MS. So the 75% became 100%, and I was diagnosed with relapsing-remitting Multiple Sclerosis. The most common kind. But the interesting thing about MS, is even though it effects nearly 2.5 million people world wide, they still don’t know much about it. They cant tell me if I will continue to have mild symptoms off and on for the rest of my life, or if I could develop progressive MS and have lasting symptoms or a physical disability.

So the reason I’m writing this is to get all the chaos in my head down in writing. As my About Me says, here I am, just trying to make sense of it all.