Chronic Illness Doesn't Stop Me: My Health Journey

Chronic Illness Doesn't Stop Me: My Health Journey

Hi, I'm Hannah, and I'm sick. My body doesn't work how it's supposed to. I was on chemotherapy for 14 years and it destroyed my body. I'm still trying to recover my immune system to this day. Nice to meet you. What's your name?

Yes, while that's very much true, that's not how I want to introduce myself to people. I find talking about my health issues to be difficult because I don't want it to define me. I want to known for more than just my health issues because I am so much more. I am an artist. I am a lover. I want to be known for things other than just being sick. I know that it is important to talk about my health issues, because I also want to inspire other people with health issues to live their best life, and it's a part of me that I shouldn't hide. So, that's what I am going to elaborate on right now. If you've followed me on social media for awhile now, you know that I will occasionally post about health struggles or health issues on my Instagram story or in a YouTube video, but I want to give you all a broader look into my health for the purpose of transparency, awareness, and love I have for my customers and supporters. Thank you for listening.

Hi, my name is Hannah Valentine, and I am the designer and visionary behind my clothing brand, Ghost Soda. I've been running Ghost Soda since 2016, and I am beyond grateful that I get to run Ghost Soda as my full time job. While I love my job, I also struggle with the weight of many health issues: Systemic Scleroderma, Raynaud's Syndrome, Burning Mouth Syndrome, and Small Fiber Neuropathy.

At the young age of 5, my hands and toes would turn white and lose the blood flow in them at random times. The blood would only return if I were to warm up in a hot bath or go stand in the sunshine. My mom was concerned so she took me to the doctor, and there I was diagnosed with Systemic Scleroderma and Raynaud's Syndrome in 2005. It is extremely rare for a child as young as that to be diagnosed with Scleroderma; primarily middle aged women are diagnosed with it. Because I was such a medical rarity, from a young age I was constantly seeing doctors and being poked and prodded at. Because Systemic Scleroderma is an auto-immune disease, I was put on an immunosuppressant medication, Methotrexate, as treatment for my diagnosis. Methotrexate is a common medication used to treat auto-immune diseases, but it is also a low-dose form of chemotherapy. Little did I know at the time (because I was literally a child) that this medication would wreck havoc in my body for the next decade and a half.

For the next 14 years of my life, taking this medication weekly just became a part of my life and so did the terrible side effects that came with it. While the Scleroderma itself gave me ulcers on my fingers, joint pain, and facial tightness around my mouth and neck, the side effects of the Methotrexate were beyond worse. Methotrexate has destroyed my body, and to this day I am still trying to restore in my body what it took from me. Methotrexate gave me migraines that lasted days, and made me so nauseous that I would gag whenever I tried to eat. It made me dizzy and weak upon every dose. Opening my eyes and moving felt like a chore. Not only did I have these side effects when I took the weekly dose, but the long term effects were much worse. I couldn't gain weight no matter how much I ate or what I ate, I always floated around 115 pounds, which was dangerously underweight for my 5'10" height. I looked like a skeleton. Not only that, but Methotrexate destroyed the enamel on my teeth, so I would always have cavities. It didn't matter how much I brushed my teeth, the dentist would always find cavities in every visit. My mouth was constantly in pain: burning, aching, itching, and bleeding. In addition to all of this (but wait, there's more!), since I was receiving this medication as an injection in the sides of my thighs once a week, the sides of my thighs were black and blue with bruises. Pain, weakness, missing out on school and skipping the "normal" teenage experience was my reality. I only went to school every other day, and I did a lot of online classes because I wasn't able to get out of bed. It upset me not being able to see my friends every day and also because I really enjoyed school. 

From age 5 to 19, I was on Methotrexate, and it destroyed my body and my immune system. In December 2019, I went to the doctor's office and complained about how Methotrexate was robbing me of living a normal life, and how my Scleroderma symptoms are essentially gone. My ulcers on my fingers have healed and I didn't have joint pain anymore, but the Methotrexate rendered me useless, weak, and in pain. The doctor then had announced that I had gone into remission, meaning the disease had gone "dormant" and was no longer active in my body. This meant that I could stop the Methotrexate!!!!!! I had never been so happy in my entire life: everything I've ever wanted to do just became an option. Playing guitar, hanging out with my friends without being in pain, doing more art, being able to be more active, and so much more! I didn't have to spend my days laying bed, waiting for a migraine to pass. I could now throw myself into my hobbies and my job. (At this time I was selling on Depop part time because I couldn't work a normal job). I remember crying in my mom's arms in the hospital cafeteria because I was so overwhelmingly happy.

I have to admit that 2020 was the best year of my life. I threw myself into Ghost Soda, and I felt better than I ever had in my life. I loved my life, and it felt amazing to be off of Methotrexate. Not only did I start to gain healthy weight back after I stopped Methotrexate, but on the VERY NEXT VISIT to the dentist I had NO cavities!!!! I was ecstatic and excited about the doors that were about to be opened for me in life now that I could finally enjoy it.

Life was going splendidly until December 2021, when I got the Covid-19 vaccine. I am not anti-vax, and I do believe that vaccines help people, but for me, the vaccine triggered chronic nerve pain and anxiety in my body. Just a few days after I got the vaccine, I was rushed to the ER with the worst panic attack of my life. It felt like I couldn't breathe, and I thought that I was going to die. My throat and my mouth were on fire and stiff, and my nervous system had gone completely haywire. I don't know if these nerve issues was something that was already happening in my body due to years of being on Methotrexate or if the vaccine gave me these issues, but regardless, I have not been the same since December of 2021. After I got home from the ER that night, the rest of December was filled with anxiety attacks and sharp nerve pain in my mouth and throat that felt like knives and needles were being lodged in my throat every time I breathed, moved, or talked. I lost my ability to work, and I spent months in bed. Doctors did not help me, and I was never told it was nerve pain initially because "I'm too young to have nerve pain". I was misdiagnosed with allergies, Candida, Strep, and many other things, and I was put on a slew of medications that did nothing to help me and in fact only made things worse (I'm looking at you Flonase). I felt like I was in Hell, and every day was just filled with horrible pain. Waking up felt like a curse, and I honestly had to fight to want to live. I was at rock bottom, physically and mentally. I wasn't eating, and I ended up losing about 20 pounds. 

Now, after about four months of suffering with nerve pain and panic attacks, I was slowly climbing out of a phase of anxiety and pain and resuming work come April, but I held onto the feelings I felt when I was in this dark place. My body had been holding onto so much trauma from all of the treatments and sicknesses, and I had developed PTSD from being in so much pain for such a long period of time. Even writing these words for this post is extremely difficult to go back and proofread. I don't want it to be a part of me, but it's time to share and heal. 

Summer 2022 rolled around, and I felt pretty good. The nerve pain had diminished, but it was still there quietly. My burning mouth syndrome would sneak up for a day or two, but I mostly felt amazing over the summer and fall of this past year. Slowly the winter began to creep in, and so did the feelings I suffered from the previous winer. I felt okay physically, but the lingering aura of my trauma anniversary (the day I got rushed to the ER, December 12th) was looming in the air. I tried to push away the feelings, but that only made them worse. I had a PTSD attack a few days before Christmas because of the trauma that I endured the year before. Saying that winter sucked is an understatement.

Winter has always been a difficult time for mental health issues in general, but since I was also dealing with PTSD from LAST winter, I knew this season was going to be especially hard. Not only was I dealing with mental health struggles trying to process everything I had been through, but my nerve pain was slowly coming back mid-February. I ignored it, fought it, and pushed it away because I thought to myself that there's no way I am going to be able to survive another few months of being bed bound by nerve pain AGAIN. I learned that thinking like this only caused resistance which made the pain and anxiety worse. On the evening of February 23, I had another awful panic attack that triggered my second long flare up of nerve pain and anxiety.

I had accepted now that I was dealing with another flare up of terrible, excruciating nerve pain. My neck felt like it was on fire and someone was stabbing needles and knives in my tongue and throat. Again, it hurt to talk, breathe, and eat. I lost a bunch of weight in a small amount of time because I wasn't eating, and I dropped my classes for the semester. I was at rock bottom once again, but this time I know that I would come out the other side stronger and more at peace. I had just gotten into a new, wonderful relationship, and there were so many other things I was looking forward to in life like getting my degree and moving into my own place. I know the future held so many amazing and wonderful things for me, and I wanted my body to be in the best condition it could be in so I could be there for those things. So from that moment, I decided that it was time to create a better Hannah. 

I've been seeing a wholistic medicine doctor for about a year now because he helped me during my initial flare up back in 2021, and he was helping me again through this flare up as well. He's put me on many supplements that I've been taking for the past year, but during flare ups, we up the dosing a bit to help my body heal what it needs to. In regards to the nerve pain I've been having, he said that because I had been taking Methotrexate for years now, my immune system was not functioning properly and I have nerve damage in my mouth from taking the medication orally. Just a reminder to you that I started taking this medication at the age of 5 AND I grew up taking it! He even told me at one point that he's surprised I'm in such good condition as I was and that I should be lucky. He has hope that we can heal me together through diet and supplements, but it's going to take a shit load of time.

The healing process fucking sucks. I'm not going to sugarcoat it. When my body's nervous system is going haywire and giving me constant panic attacks, brain fog, derealization, and intrusive thoughts AND it's also causing physical nerve pain, functioning normally is just about impossible. Eating, breathing, and talking became the hardest things.

Manually calming my nervous system when my body can't do it on its own is not easy, but I found many things that helped and possibly rescued my mental health. Meditation and reiki healing sessions have saved my life. They brought out the positive energy in me that I couldn't feel in moments that were filled with anxiety. The positive energy and peace that I want to achieve is not something that I have to look for, it is already within me. I just have to find ways to access it. There were three things I knew I needed to work on in order to become the best version of myself:

1. Addressing physical health issues: I needed to figure out what was going on with my body and take the steps needed to heal myself from what Methotrexate had done to me. I knew that I needed to heal myself through diet and exercise: the two building blocks to great health. 

2. Addressing mental health issues: I needed to address my anxiety and PTSD that I was experiencing caused by my physical health issues. Meditation, reiki sessions, talking to my therapist, diet, and exercise were all things that I began to leap into as I began my healing journey.

3. Being more creative and finally creating music: I've always been a creative person, and I love painting, drawing, sewing, etc! I know I haven't been expressing myself in the most vulnerable and honest ways, and I need to be more honest with my art. Most of you know me because of my sewing and screen printed designs that I showcase in my brand, Ghost Soda, but I find myself to express myself the best through singing and playing guitar. I've always wanted to make music, and for years I've wrote songs and never released them. It's finally time to do this, and that's something I've been working on in private and will be sharing with the world soon. I owe it to myself.

So keeping all of these in mind, I began my healing journey. Like I said earlier, the healing process SUCKS!!!! Healing emotional and physical wounds at the same time is the hardest thing I've ever had to do, but it's something I know I needed to do and I wanted to do. I changed my diet, began exercising every day, talking to my therapist twice a week, and meditated, but I wasn't seeing any results (immediately, at least). Anxiety and pain was riddled throughout my waking hours, and I yearned for nothing more than a good night's sleep where I could be unconscious. Patience is something I've struggled with my entire life, and I know I need to practice patience now more than ever if I wanted to see the most healthy and at peace version of myself come to life.

So I kept up with my routines of going to therapy, eating healthy, exercising 1-2 times a day, and staying social. I wasn't going to let my pain or anxiety stop me from living my life, and I've always lived this way. I always tell myself, "I am going to be anxious whether I'm laying in bed or out with my friends, so I'd rather be anxious out with my friends." I actually found the courage to travel to Detroit and Nashville with my boyfriend during this time, and I was so proud of myself. I proved to myself that even though the pain and anxiety is horrible, I can still do wonderful things like travel with Ghost Soda to different states with my wonderful boyfriend there to support me. And slowly but surely, I started to feel better. It was so slow I barely even noticed it was happening, but I compared myself now to how I felt a month ago, and the difference was amazing.

Today on April 16, 2023, my healing process is still happening. It's slow as ever, but I can feel myself healing. The weather is warmer so I spend a lot of time outside because I find sitting in the grass and the sun to be very healing and grounding. My diet currently only consists of fresh fruit, vegetables, and nuts. My nerve pain is still here but it has decreased, and I am able to enjoy things in life again.  I have no control over what has happened to me, but I do have control over what's going to happen. I know that if I continue this clean diet, exercise daily, continue meditating, and finally release some music I've been sitting on for years, I will finally be able to live to be the best version of myself. I'm never going to let my pain stop me from doing what I was meant to do on this Earth: spend my days loving and creating. I can't wait to see what the future holds, and I'm excited to meet you there.

Thank you for listening to my story, and if you have any questions or would like to contact me, please message me on instagram to talk! @shopghostsoda

Keep it creamy.

- Hannah Valentine


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