“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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34 thoughts on ““Where are you?”

  1. I’m sorry that you’re going through all this. I’m hopeful for you when I hear how well you are coping.

    I have an autoimmune condition diagnosis that’s about two years old now. Mine is mild, but those first few months were still debilitating. I’m grateful for every day with only mild pain now. I’m carrying on with my life (as a stay at home mom, including home schooling one of my two children) and accomplishing a fair portion of all that I’m “supposed” to.

    Blogging really gives me a lift. I hope it is as good for you. I avoided sharing my diagnosis with most people until I had it under some kind of control. That helped avoid the pity party and a lot of explanations, but was also isolating and difficult. I’ve found my blog to be a pretty safe space to share.

    Liked by 1 person

    1. Thank you so much for taking the time to read my story! I can completely relate with you. I’m so glad to hear that you have been able to carry on with life! I’ve been sick for about 3 years now, and they just never knew what was happening for a very long time! I so agree with you on the whole diagnosis sharing aspect. I have yet to share with most of the people in my life-only family and close friends know-the pity party does get very tiring as you may well know. It’s super isolating especially since I am only in my early 20’s and started getting sick in my teens. I just think its important to get the message out there that everyone is different!

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  2. I’m so sorry you’re going through this battle. But know that you are a survivor. Every day you get up that’s a success. I myself have a chronic medical condition and have been in and out of the hospital my whole life so I’m no stranger that. Just know you have a support here ☺️ I also just wanted to say you’re being an incredible help to others going through similar things. Helps people not feel alone and the world needs more of that ☺️

    Liked by 1 person

    1. Thank you so much for making my day!! I so appreciate it. I am so sorry you still have to go through that still, its something I wish on no one. Sending so much love & support back! xoxo

      Liked by 1 person

  3. Thank you for sharing this. I am sure that you have helped others going through situations similar to yours. I prayer that things get better for you, but I love the way that you look at, honor and enjoy life. WE can ALL learn great lessons from you!!! Keep being the strong person that you are and BE ENCOURAGED!!!

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  4. Thank your for sharing this very personal story. By doing so, there’s a very good chance that someone will read it who really needs to know they are not alone, and they will be inspired by your journey.

    Best wishes for complete healing.

    Liked by 1 person

  5. Thanks for sharing this, as most people don’t understand what autoimmune disorders are, and it helps to spread the word and create more compassion for people who are dealing with it. And I hope you are able to find the right combination of medicines to help you soon!

    Liked by 1 person

  6. It sound like a hard struggle. I understand what its like to have your life revolve around a condition and to deal with people’s perceptions and/or lack of understanding. My condition has to do with mental health though, but I do have physical symptoms and have to take quite a few pills. I know that when I express myself and explain what it is I’m going through to other people, it does seem to help. You seem to have a positive outlook, which is great, and I look forward to getting to know you through your blogs.

    Liked by 1 person

  7. It is so good that you are sharing this. I would want to support without that smothering you speak of. I have a medication-induced autoimmune situation, nothing compared to what you are going through, because of meds I take for a kidney transplant (with great gratitude to my co-worker donor). I’m a retired RN. It takes courage to go through what you are going through. I find that “a day at a time” is a good way to approach that–and, for me, developing my spiritual life. Since I became a nurse, so many new treatments have emerged. I pray that the same will be able to help you.

    Liked by 1 person

    1. I am so sorry that you have to go through that, I hope that you feel better soon! I have so much respect for RN’s- I know that it’s not an easy job at all. I hope that there’s an alternate type of treatment that will help you in the very near future!

      Liked by 1 person

  8. Thank you for including us in your personal journey.
    I’m a mum of 2 teenage boys with an autoimmune condition and it’s hard for others to understand because they look fine on the outside, but on the inside, their bodies are in a constant battle, just like yours.
    You are a blessing to this world, thank you again for sharing. I wish only the best for you. If you need anything, we are here for you. x

    Liked by 1 person

    1. Thank you so much for your nice comment! I’m happy to hear that you were still able to raise children-because that’s something I worry about everyday even though I’m young. I understand what you’re saying- most people will never understand because your looks don’t always match how you feel, but thats what makes you stronger than most! xoxo

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  9. I’m so sorry to hear what you are going through. Thank you for sharing your journey with us. My son was hospitalized at the end of 2015 with encephalitis and Guillain-Barre Syndrome. He is still recovering. Doctor appointments and medications are no fun. Nice to meet you. I wish nothing but great blessings your way. ❤️​

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    1. I’m so sorry! I know it must be hard as a mother watching your son go through something like that, my mom still struggles with it 3 years later. I wish the best for you guys!

      Liked by 1 person

  10. Hello,
    Pleasure to meet you and thank you for taking time to visit my blog page and having a follow, I appreciate the support and look forward to reading more from you.

    Sorry about what you are currently going through and appreciate your ability to share it among total strangers (which isn’t easy) , this was such a good post, literally well written and definitely gave me an experience just reading it through your words. I have only heard of this condition maybe once before but didn’t know a whole lot about it, so thank you for making people like myself more aware of it and shining some light on this matter. I realize you will be going through a tough time probably as you read through all your comments, but know to continue keeping your head up and heart strong – nothing is easy for you, but you can make it easier having a positive attitude that you seem to have in your post. Once again, thank you for allowing us be apart of this experience and giving us a taste of your routine and life, you betcha, that this will also make others more appreciative of their lives if they aren’t already.

    Shay-lon

    Liked by 1 person

    1. Thank you so much Shay-lon! I really appreciate you taking time to write this comment and read my blog! I’m glad that I could make an impact on people’s lives in such a positive way!

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  11. Honey, II am so sorry you have been going through all this. Autoimmune diseases are so draining and painful. I suffer from both RA and Fibromyalgia. Both auto immune diseases. Sometimes it is so hard just to get up. You are so young, and have a bright future honey, don’t give up or give in to the disease. Keep fighting! Love and best wishes!

    Liked by 1 person

    1. Thank you so much. Oh my goodness, I can’t even imagine what you’re going through! I know that both of those diseases are incredibly hard. I wish you the best and keep fighting! xoxo

      Liked by 1 person

  12. Thank you for sharing. Several years ago started feeling sick, in and out of dr’s offices, ER visits, on medication, off medication, high fevers, sleeping most of the time and as a mom this was very hard. Long story short after visiting a specialist, I was diagnosed with West Nile Virus. I decided to give up all medications and starting using essential oils. To say I feel so much better would be an understatement.

    Keep your chin up. You are a blessing.

    Liked by 1 person

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