“Where are you?”

autoimmune

I thought long and hard about writing this blog. My thoughts went back and forth of whether I should keep this private, but it has come to a place where it can’t be kept that way anymore. For the past three years, I’ve been going through an excruciating health crisis that I have had minimal answers to. Most people would see me laughing, talking, and nothing like what happens behind closed doors. I’ve had a rainbow of reactions; from a smothering amount of empathy to close friends completely disregarding my existence. Both ends are reactions I don’t want. I used to be so anxious to tell people what was going on in hopes that they would understand what was happening. I realized that I was receiving these reactions because it was too complicated for someone to see some look completely normal one second, and be rushed to the emergency room the next. How does that make any sense? Trust me, I would be thinking that too if I wasn’t the person it was happening to.

The Beginning

Senior year of high school is arguably the best year of grade school. You are exploring your new future, celebrating your big accomplishments, and blossoming into an adult.  My senior year was the complete opposite. Mine consisted of multiple ER visits turned into admittances to spinal taps to allergic reactions to drugs to the longest nights of my entire life. Nobody knew how bad it was until we found out I’d be attending an out of state head pain clinic for intense medication therapy.

I walked across that stage, received my diploma and knew where my next destination was. When I arrived at the clinic, I was the youngest patient in the hospital wing. They told me I’d be admitted for around 10 days. Each day consisted of early 5 am EKG’s and blood draws, 8 am meetings with a room full of doctors, noon time procedures, and nightly new meds. My family and friends would visit to support me during the day, but at night I was against it alone. Come ten days later and 25 pills a day, I had new diagnosis: Psuedotumor Cerebri. If you look that up you’ll probably see a 400 lbs. lady and I’m pretty sure I don’t look anything like that. Of course I had some skeptics because this was pretty rare, especially since I didn’t fit the criteria but the meds were working and thats all that mattered.

The Now

My 25 pills-a-day regimen worked throughout my first year of college which was a great relief. Sure I was completely drugged up, but I was happy, learning what it was like to be a college student. This past January that completely changed. I started having weird new symptoms like: short-term memory loss, chest pain, tachycardia (fast heart beat), major fatigue, weight loss, swelling, and rashes. I would go to class then come home to take a nap, go back to class and then sleep some more. I opted to stay in most weekends feeling like crap. I developed a good poker face so that only people I was close with could tell if something was wrong.

As months went on, the symptoms had become more prominent and a burden to every part of my life. We still had no answers. I went to my doctor in Tampa and she had asked if I had ever been tested for autoimmune disease. I had no idea what that was to be honest, and I said to her that I have not. Test results came back positive but we still weren’t positive even though the numbers were pretty high. During this time, I had flown home to receive treatment via Johns Hopkins. I flew home from school with the intentions of only staying a weekend but it turned into three weeks. My doctor told me he was so so close to admitting me that if I had waited another day to come home, he would have. He started the process of taking me off medicine and starting new medicine. My goal was to just get through the rest of the semester so I wouldn’t be behind. I got myself back to school and immediately I knew it was a huge mistake.

From this point on, I was on permanent bed rest for the last three weeks of school until my mom came down to pack me up. Every day I felt guilty emailing my teachers that I couldn’t come to class and hoping that they wouldn’t penalize me for being sick. I started having cold sweats at night, being super dizzy, and still in a huge amount of pain. I managed to get myself out of bed for an english final-which was a presentation in front of our 30 person class. I went up to the front of the room about to pass out and stuttered my way through the presentation with classmates giving me faces like “what the hell is wrong with you?”. I wanted to scream out I’m not weird I promise, I’m just really sick and can’t keep it together.

About three weeks into this summer I got re diagnosed. My autoimmune tests had for sure been right. I have low grade autoimmune disease with what we think is connective tissue disease. We are not positive yet, but there’s no doubt that the general autoimmune diagnosis is right. So, what is that exactly? This is the short explanation I tell my friends: my healthy cells are being attack by my body for NO APPARENT REASON. Yup, my body just decided to start attack itself. For the past three years, I have seen the sorrow and hope in my parents eyes and they finally had reassured that now I would get better.

While all my friends are enjoying their first time aboard this summer, I’m yet again receiving intense medication treatment in hopes to move into my first apartment and go back to school. Now, if I ever personally get to tell you this, I don’t want pity, I just want you to understand being in my shoes is far from easy and will be the rest of my life. Autoimmune disease does not have a cure, it is however manageable. There will be a point in time where I am fully functional again but that requires getting my medication levels correct. I’m currently unstable have 1-4 day flare ups almost every week. To get the levels in my blood correct, I require having my blood drawn almost every 5-7 days. When I have my flare up I have learned to give myself injections in my legs and if you see it looks like I was in a huge fight because I am really good at giving myself bruises.

Autoimmune disease does not just effect my head, but all parts of my body. I am hot and cold 24/7, I swell up during flare ups, my hair has been thinning out, I have circles under my eyes and I have accepted that thats just how my life is going to be right now. In fact, I believe it’s a gift. I get the honor to see life in a totally different angle, and that makes me extremely appreciative of everything I have. In order to maintain a healthy way of life, I have had to cut out foods everyone loves: chocolate, pasta, pizza, anything with refined carbs or  refined sugar (i.e. candy, cupcakes, etc.). 99.99% of people will never understand what it’s like to live with this disease, and that’s okay. I’m blessed just to eat a meal out in public or enjoy the sunshine on my good days and take life as it comes. So next time before assuming “her head just hurts” or “she’s faking it” think about if you were in my shoes and how you would react to someone saying that. Just a little food for thought.

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119 thoughts on ““Where are you?”

  1. Hey Syd how are you doing today? I am in Maryland. Remember you are in my thoughts and prayers 💖✌️🏽👆🏽🌹

  2. Hi Sydney, thank you for sharing. We understand the struggle of having to deal with an autoimmune disease and recognize your strength. If you would like to learn more about autoimmune diseases and ways to improve your health through functional medicine (such as food therapy and movement therapy) check out our blog. We have lots of resources that you may be interested in 🙂 #spooniestrong

  3. Wow, I am mostly stuck on the fact that you’ve had to cut pizza out of your life… HOW?!? But on a more serious note, I am sorry you have had to go through this and will continue to go through it. I think it is amazing that you have made it into a positive and are really soaking up everything life has to offer. That is so healthy of you. It’s so easy to get down about the unfairness in our lives. You are handling all of this so well! I am excited for you to get your meds right and to feel better! I hope it is soon! <3

    1. Hahaha I can have gluten free pizza but it’s not as good! This was about a year and a half ago and I’ve made ALOT of progress! But thank you so much ❤️

  4. Thank you for sharing your journey. We have a genetic illness in my family that is broadly mis-understood, I am not personally affected by it but I have witnessed the way people treat rare illness, and the tragedies that can result from missed-diagnosis through it and its messed up.

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