Sick

** warning: very personal post.. but here goes it**

Just recently I noticed that its been a little over a year since i’ve blogged at all. It wasn’t until I put two and two together that I realized I stopped blogging right around the time I started to noticeably feel sick. I’m not sure why that is, but my mom would probably say its because I internalize a lot. From the very beginning i’ve preferred to be very private about what I’ve been going through, but it’s pretty obvious at this point that i’m not okay. I’ve been sick for a while.. but you can only hide a bald head for so long, lol.

Days like today – no matter the amount of support I have behind me – i’m not okay. I think that i’ve been pretty positive throughout this process, as well as very open about the love that I’ve received because I’ve felt that the people in my life deserve that acknowledgement, because I’m just so so thankful. On the same note though, I think it’s only healthy to acknowledge everything that goes on behind the scenes. There’s nothing about what I deal with on a daily basis that’s okay. And sometimes when you’re told over and over that -“it’s okay”, “you’re going to be okay”, “it’s all going to be okay”- all you want to do is scream back that nothing about this is okay. 

It’s not okay. It’s feeling like your not in control of your own body. It’s being afraid to go to sleep at night because you don’t know what kind of morning you’re going to wake up to. It’s constantly fighting with your own body to stop attacking itself. It’s having to leave the job of your dreams because you’re just “too sick”. It’s seeing tears roll down the face of those closest to you. It’s keeping a daily log of every food or medication I put into my body. It’s hesitating before you go anywhere or do anything because you’re terrified of when your body will decide to shut down. It’s throwing up multiple times a week, with nothing even coming up most of the time. It’s being covered head to toe in bruises. It’s asking God “why”. It’s looking in the mirror and not even recognizing yourself anymore. It’s having to have someone with you almost wherever you go. It’s getting 8+ hours of sleep, then feeling so fatigued you can’t stand before 2pm. It’s the stares. It’s medication after medication, and then more medications for the side effects of those medications. It’s getting your blood taken so much you know where just about every good vein in your arms are. It’s a “you okay? how are you feeling?” instead of “hello?” when someone picks up the phone. It’s not being able to hold down even your favorite meals. It’s trading in your flat irons for hats, hats, and more hats. It’s aching in places you never thought you could ache. It’s going from being a gymnast- to walking up a flight of stairs and having your head spin and heart beat out of your chest. It’s having to sleep with a thermometer and pulse-ox by your side every night. It’s not sleeping. It’s fearing for your future. It’s saying “I’m sorry I can’t”, more times than you can count. It’s being unable to go out with your friends, whether that be to a bar or just to lunch. It’s looking up how close a hospital is to you if you go anywhere out of town just in case. It’s trying to make sense of something that will never make sense. It’s praying, and praying, and praying.

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But it’s also okay. It’s the rare but monumental good days. It’s the random phone calls, texts, and face-times. It’s the heartfelt and sentimental gifts. It’s the bald-head massages. It’s finding humor in what you lack. It’s saving money on hair products. It’s the long warm hugs. It’s connecting more with God than ever before. It’s the deep and meaningful conversations. It’s a new perspective on the world. It’s having 20 boys you don’t even know sing to you and bring you flowers and gifts, just to make you feel beautiful for a moment. It’s getting to meet amazing and inspirational doctors and nurses. It’s messages from complete strangers with genuinely big hearts. It’s being able to spend more time with your family. It’s learning more and more about the medical field (hopefully that gives me a leg up when I become a nurse). It’s the feeling of writing thank you letters. It’s being more than grateful for a healthy day. It’s being pleasantly surprised to see who’s really there. It’s seeing who didn’t end up being there after all, and knowing that it’s their loss. It’s thanking God for your past. It’s being loved unconditionally. 

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While I still like to be pretty private about things in my life for numerous reasons, I now know that fearing I wouldn’t get the support that I needed was never something I had to worry about. The amount of support that I’ve received from friends, family, and even strangers is enough to make my head spin. Those screenshots I posted above are only a glimpse into the kind words I’ve had sent to me. To everyone that’s contributed to making me feel better in any way, THANK YOU. I’m reminded every day that what I’m going through could always be immensely worse, to stay positive, to trust God, and to be strong. Although that positivity can be hard to follow sometimes, most of the time it comes easily thanks to the people in my life. More than anything, it’s okay that my normal isn’t like everyone else’s normal. All I can say is that despite it all, I’m still very truly blessed.

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4 thoughts on “Sick

  1. You inspire me I look up to my little sister more and more for her strength and perseverance in life no matter what your going through you won’t stop reaching for your goals and refuse to give up I love you I’m always here for you and this what you wrote is beautiful this journey has been a rough one but an enlightening one for us all and trust in god because the way you do that makes me (someone who has never been religious) seek help and guidance from god ! Love you with all my heart

    Your big sister
    TT

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  2. My dearest daughter, I love you so much and Im glad you shared your feelings. You are going to beat whatever this is. Soon we will know what we are battling, but know until then we your family and friends love you and admire your courage. I know it’s not easy. You will stand tall and strong with a full head of hair one day. We will look back on this time and say it was difficult but you persevered. Building more character and knowledge of the world and realizing you can and will go on and conquer the world. I know you feel alone at times. But don’t. You need to know that you are loved and cherished by many. You are an inspiration to so many and will make an amazing nurse one day. Until then, keep charging on. You can do it. Love Mom

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  3. thank oyou for sharing your life. you are stronger than you know. you are beautiful inside and out. hair doesnt make you beautiful your soul does. i can tell by what you wrote you have a beutiful soul. keep your head up. pray often and god will do the rest. i will keep you in my prayers also. im sending love from waldorf maryland

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  4. You don’t know me, but I see so much of my life in your blog, I just had to write and encourage you (hopefully!). I have have a seizure disorder, severe chronic migraines and most recently I was diagnosed with multiple sclerosis, there are a few other minor things that I really don’t worry about like Celiac disease because the MS and the seizures are so much more overwhelming. I also have a service dog that detects my seizures about 10 minutes before they happen and then protects me when they do and helps me after the seizure happens. He has been a life changer for me and I honestly don’t know what I would do without him to help on a daily basis. My best advice to you is to hang in there and know that every day is a little different, some days are difficult and some are wonderful but all days are a gift from God. The best of luck to you, love from Roseville California

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