“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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95 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.

    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!

  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 ☺️

    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

  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!!!

  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.

  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!

  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.

    1. I’m so sorry about your condition-I know it is not fun taking lots of pills. Thank you for your sweet comment, I hope that my blog will bring you some relief!

  7. I’ve read that your body metabolism changes every eight years (approximately) – hopefully this is true. My prayers are with you. Not an easy start in life for an obviously gifted writer.

  8. 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.

    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!

  9. 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

    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

  10. 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. ❤️​

    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!

  11. 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

    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!

  12. 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!

    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

  13. 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.

  14. Wow Sydney!! I found you because I saw you followed 4theloveofsass and I am so happy because it led me here! You are SO STRONG and it was so nice of you to share this story.
    I have a mild chronic condition that makes me extremely tired and achy. People have called me “lazy” but honestly, that’s just how my body is and I take medication for it everyday.

    I am so proud of us for doing the best we can despite the circumstances 🙂

    1. Aww thank you so much for the comment! I completely understand. I used to be called lazy as well and medication can make it more profound. I love love makeup and everything beauty so I will be reading your blog for sure as well! xoxo

  15. Thank you for sharing your posts! I appreciate it when people share the reality of their lives. I find then that I am in good company with authentic humans.

  16. It sucks when you have an “invisible illness”! It’s so difficult to tell others you don’t feel good, or you can’t do that, or I have to go to the doctor again today. Because then you get the “I don’t see anything wrong with you” looks. Or the “whatever, you’re just blowing me off” attitudes. Keep up the good work and know that I’m sending you lots of strength, positive thoughts and courage to keep stepping up every day.

    1. Thank you for your sweet comment!!! Yes it started off as almost completely invisible but now it’s made it’s way through physically during my flares and you can for sure tell but on the okay days it for sure seems like an invisible illness! Thanks so much for reading!

  17. This is a very courageous post. I have been battling anxiety since January and i feel like that is nothing compared to what you have been through. You are quite a fighter and I admire your outlook on life. I too have thought wow, things are not really perfect with my health but i am blessed in so many other areas in my life. You will surely get through this! Stay strong 💪🏽🙏

    1. Thank you so much! Everyone has different challenges and experiences that you cannot compare! I wish you the best and know it will get better for you! Xx

  18. First off, just wanted to say that you and your blog are both gorgeous and amazing. Secondly, I commend you on the strength it took to post this, as well as the positive outlook you continue to keep while going through such difficult times. You’re absolutely inspiring! I don’t have the same autoimmune issue, but I do know how unfair it is when your body works against you and you don’t know why nor how to stop it. Keep your chin up pretty lady. Hoping one day all of this is just a distant memory for you.

  19. Loved this post! I am so glad you had the courage to share your thoughts on what you’re going through. You are a very strong fighter, and I am so happy to have come across your blog. Can’t wait to keep reading your thoughts on life. Have a great day (:

  20. Despite all the hardships you went through you are still a sweetheart with so much positive vibes .You are a strong fighter .Stay positive and never lose hope . You will definitely get well soon. Looking forward for a blog from you that says you are completely fine and healthy and that you successfully got through all the treatments … Read few other blogs of yours as well… it’s true being an optimist can take you a long way in life than being a pessimist.
    Best wishes for complete healing .

  21. So brave to share your story. Auto immune disease really is so unspoken about. We know so little about it therefore making it so difficult for those who sufer to be understood. Know that your post has informed people,has educated them a little and absolutely no doubt has helped someone suffering the same in silence. Thank you x

  22. Thanks for following my blog. I feel sad reading your post. A friend of mine was diagnosed with lupus a year ago. She’s under lots medications and weekly blood tests.

  23. This story was inspiring! I myself is battling against a autoimmune disease called SLE Lupus for short. I too was going in and out of the hospital during my senior year and college. This whole summer I was hospitalized due to a horrible flare up that lasted for unconditionally to long. During that time I was diagnosed with Gastritis, pancreatitis, AVR also known as bone death and my kidneys have officially been damaged due to a horrible infection. I have Lupus Nephritis which is the kidney disease of Lupus. I understand everything you are going through! I can relate but I know we are attack differently. I love your positive attitude! ❣️

    1. That’s so hard, you are so strong! I’m going through a really bad attack still as well! This is so crazy I never thought I’d find anyone I could relate to! Let me know if you ever want to do a collab! Xx

  24. As I began to read your story, I knew immediately what you were getting at. I have an autoimmune disorder, connective tissue disease, fibromyalgia, radiculopathy, degenerated disk disease, osteoarthritis, and all of the related issues that come with those ailments. You are correct. Not one person can understand what it’s like unless they are in your shoes. I’ve adopted a motto years ago before any of these problems ever occurred, and it’s so relevant now. “Never judge a person until you’ve walked a mile in their shoes”. I’ve always believed that. One thing I detest is when people say to you, “you’re too young to have so many health problems”. Yeah, no kidding. It’s rude and ignorant. I feel for you and do hope the very best for you in the future. Let’s hope someday there will be a cure! Thank you for sharing your story. You’ll be in my thoughts…

    1. oh my gosh I can’t even imagine what you go through on a daily basis! Just having one autoimmune disease is alot. You are super inspiring and I commend you for living by your motto! I hope things start to look up for you! Xx

  25. Thank you for sharing your story, I’m so sad that this happened to someone so young. From my understanding, autoimmune diseases come with a lot of symptoms that may not show on the outside of your body, so getting people to understand it is definitely a challenge. You’re doing so well by writing about it on your blog. I don’t know if you watch the Pixiwoo girls on YouTube, but one of them (Nicola) has MS and recently did a video about it. Although I don’t know much about you personally, from reading your blog it seems like you might really connect with her.

  26. Sydney, you’re an amazing writer – I could relate to what you were saying so vividly, even though I can’t even imagine what having an autoimmune disease must be like. Thank you for letting us readers glimpse into your world. All the best!
    xx

  27. I just discovered your blog and happened to come across this post.Your life changed really quick and it seems like you are adjusting to it. I really appreciate that you were bold enough to share your story. it will help individuals going through similar situation. it encourages me not to be depressed about these little life anxieties. I admire your courage and positivity. Continue fighting.

  28. Wow what an amazing and inspiring story that is! I’m so sorry to hear about your health problems and everything you’ve been through. It takes a lot of courage to share that with people, but I know you’ll come out stronger at the end of it all. Keep fighting chick! 🙂

  29. Hey,

    Thank you for having the courage to share your story, I really believe vulnerability is helpful both to the person being vulnerable and the person receiving the message. I really hope that now that the problem has been identified you’ll be able to get through better with the medication, we’re all going through a journey with different problems and highlights but since we’re all on a journey it’s important to be there for each other no matter the different circumstances, we all need love. Sometimes people tend to disqualify people and say ‘you don’t look sick etc’ or ‘it can’t be that bad’ when really it’s not about comparing peoples bad situations, I really don’t see how that can be helpful to anyone, but just being welcoming and open to be there always knowing that we never really can know fully how a person feels. I hope your day goes well beautiful soul
    x

  30. Hi, I came here to thank you for the follow, but here I am in awe of the way you have turned your pain into art. Seriously, keep doing what you’re doing. The world needs more of you.
    I won’t pretend I know what you go through each day, but I have had my own unique experience with the frustration and confusion of trying to maneuver the health care system while attempting to experience the “normal” life of a young adult and student. It’s exhausting.
    I hope that with every word you type and every post you publish, you log out and smile. You have no idea how many people silently idolize you. Like I said, keep doing what you’re doing. I’ll be reading every post!

  31. I’m so sorry you are going through this. May you find some semblance of health and balance soon. I believe that we are in the midst of a big shift on this planet and many new alternative healing technologies will be available. So hang in there as I believe this isn’t a life sentence for you.

    I grew up severely asthmatic, spending much time in the ER and hospitals, not knowing if I’d be alive the next day. Hospitals were terrifying for me. I learned to hold my breathe in class so no one would hear me wheeze or make fun of me. I learned to quietly jiggle my leg to release the speediness of the medication. I still struggle with my lungs but have learned how to move forward and stay active.

    I appreciate you following my blog and introducing me to yours.

    1. Thank you so much! This was so sweet. What you went through and still go through is very rough as well. I am glad you have learned to make the best of your situation and commend you for your amazing attitude and positivity!

  32. This was hard enough to read given how much horror you went through, but it really struck a nerve with me at the portions where you hit on the concept of ‘invisible illness’– the ‘she’s faking it’, god does that resonate with me.
    I also have a range of chronic illnesses– all 100% invisible. Not a single tangible sign of anything–be it pain, fatigue, horrible nausea– to anybody but myself, and how I feel it.

    I was accused of faking a lot of things back in high school; when I was cut slight slack in PE, by kids who didn’t know I was taking 17 different prescription medications a day (not counting supplements, vitamins, and pills that needed to be taken in multiple), and seeing anywhere between 9-13 specialist physicians regularly at any given time. They were willing to dismiss my suffering and mock me as ‘lazy’, and I wasn’t willing to fight back– so as far as they were aware, I WAS just lazy, and they would never know I went on to have 4 abdominal surgeries in the 2 years following graduation.
    Oh, and don’t even get me started on getting off glares for using my handicapped parking placard (which I already use judiciously), because only people in wheelchairs are supposed to use those, or something else pathetic along those lines.

    I’m so proud of you for having gotten through everything you’ve been through. You are so strong– especially with such frequent blood drawings, oh my!! I’m so, so terrified of needles, that when I first got very sick and diagnosed, around 15-16, I would literally PASS OUT in the phlebotomist’s chair, hah! But now that I get blood testing maybe once a month, I’m forcing myself to become strong. I’ll think of you next time, and how once monthly is actually piece of cake, so I can’t complain anymore!!

    Stay strong, friend, and never give up on your goals. Starting a beauty blog was one of my goals in not giving up on life because of chronic illness, so thank you for following my little fledgling blog– I’m going to work hard even hard on that, now!!

    1. Thank you so much for sharing your story. Living with that type of illness is anything but easy. Kudos to you for staying strong during your journey. People should never judge a book by their cover and this is something you yourself have witnessed first hand. Don’t let people remarks ever bring you down. I know it may not seem like this but it will get better. Keeping chugging through as you will find the light at the end of the tunnel! I will most certainly take a look at your blog! Xx

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