My Experience

  • My Experience

    My Response to “I’ll Pray For You”

    If you’re chronically ill, you’ve heard it before a thousand times. “I’ll pray for you.” Now, I’m not talking about the cousin who is genuinely saying, “I’m keeping you in my prayers.” I’m talking about the person that’s saying it as a condescending belittlement. For a lot of people, coming in contact with someone who looks normal and is dealing with something life altering, is uncomfortable. People don’t know what to say or how to respond. The problem with saying, “I’ll pray for you” is that they’re praying for the wrong thing.I’m going to try to explain this in the most elegant way possible. I don’t need to be fixed.…

  • My First Surgery
    Helpful Hints,  My Experience

    What I Wish I Knew Before Surgery

    A week ago, I got my tonsils removed. This was my second surgery, I had my gallbladder removed a year ago. People will warn you about a lot of things when going into surgery. Pain, recovery time, and the inherent risks you take when undergoing a procedure. I always feel like I’m signing my life away, I guess in some ways you are. Accepting the risks of surgery is terrifying to me. It’s terrifying for most people. Even though you sign that scary form and acknowledge that there is a laundry list of risks with fractions of a percent that everything could go horribly wrong, These are the things I…

  • Helpful Hints,  My Experience

    How to Love Your Body

    Three years ago, I hit a serious fitness craze. I was working out daily, eating healthy, and focusing on my fitness goals. I was more confident than I had ever been. I loved my body and people knew it. Now, I wouldn’t say I was cocky or overly self confident. I was proud of the work that I put into my body and how that work showed. When I got sick, I lost all control over what my body looked like. If you’ve ever been on steroids long term you know what it means to have prednisone puff. I was the same weight but it looked like I gained twenty…

  • My Experience

    Goals for the New Year

    Like most people, I have made several goals for the new year. Unlike most people, they’re achievable goals that are actually possible. I do believe in New Year’s resolutions, but I try to make goals for the year that will help me grow in several areas. Personally, mentally, and physically, are the key areas I focus on. Right now, I don’t have a job because of my physical health. That is something I can’t control so I don’t make a goal in that area. Same with school, because it’s on hold and I can’t control the future of that right now, I hold off on setting goals for it.  Making…

  • My Experience

    Taking Care of My Mental Health

    One of the most common questions I get asked is “How are you doing, mentally?” It’s a completely reasonable question. Right now, everything I do revolves around my health. It’s a scary and turbulent time. At twenty, I’ve faced a lot of obstacles. This has caused me to develop different issues along the way. As I’ve said before, I have OCD. This is something I wasn’t aware of until several months ago. As a child, I’d often have intrusive thoughts. Anxiety would develop as a coping mechanism. I always assumed OCD was obsessive cleaning, handwashing, and compulsive behaviors. If I had OCD it would be very noticable. Given, most of…

  • My Experience

    An Urgent Surgery

    If you keep up to date with my blog, you know now that I need hip surgery to repair a tear. Well, that is not the only surgery I need. Last week I had another angioedema attack. This is the most severe attack I’ve had to date. For the past eighteen months I’ve been dealing with random swellings of my tonsils, tongue and uvula. This problem has perplexed most doctors and it has yet to be controlled by medications. During my last attack, I was prepped for intubation. They went through the protocol, numbed my airway but I turned a corner at the last moment.  My throat swelled so much…

  • My Experience

    I Need Surgery

    Anyone with chronic illness can tell you that you’re not immune to normal issues. When I first started to get in shape after getting diagnosed, I took to running pretty fast. This was soon after my physical therapists had taught me how to walk again with a normal gait. I set off with the goal that I was going to run a marathon. My plan was to run a 5k every month for eleven months. Then on the twelve month, exactly a year after my first 5k, I would run a half marathon. After my half marathon, I would take a year to train for a full blown marathon. With…

  • My Experience

    Merry Christmas Spoonies!

    Today, I’m celebrating Christmas. Whether you celebrate Christmas, another religious holiday, or no holiday at all, I hope you have a wonderful day. I hope that you feel joy on this day and everyday. I hope that you take time to be grateful. I hope you take time to share your gratitude. I hope that you look around you today and acknowledge the good in the world. I’m so grateful for your presence. No matter what you are struggling with, I want you to know that everything will be okay. It might not feel that way but I promise it will. I wanted to take a second and say thank…

  • My Experience

    My First Week With My Service Dog

    It’s been a little over a week since I brought my service dog, Crush, home from the facility that gifted him to me. As I’m writing this, Crush is trying to insist I play tug with him. It’s cute but not very productive. Having Crush home has been like no other experience I’ve ever had. Unlike our family dog, Crush is well trained and responds to most of the commands he’s given. He’s focused and attentive. We’ve been on several outings. Here’s an overview of our first week together. Our First Outings Crush and I went out together before the scheduled time. Due to some driving inconveniences, he went out…

  • My Experience

    Getting My Service Dog

    Getting a service dog is a big decision. There is a lot of thought and logistics that go into making such a large lifestyle change but for me this was worth it. First, I want to address why I came to the conclusion this was right for me and my lifestyle. Then, I’m going to talk about the process and getting accepted into a program. Finally, I’m going to talk about meeting my dog and starting to train. As of right now, my dog hasn’t moved in yet. It is going to happen this week and I couldn’t be more excited. I will give a more in depth review about…