‘You have a tough road ahead.’ That was an understatement. I had to accept the possibility of dying before I really got to live.’: Chronic illness warrior says ‘I’ve so much to be grateful for’

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“My first memories as a child were of my back and legs hurting and tingling, asthma and allergy attacks, then migraines. I was told at 4 years old, ‘You are too young to have migraines.’ I wanted so badly for someone to live just one day in my body so they knew the brutality of my reality. I missed so much school I inevitably had to be home-schooled.

I was sent to court for missing school and even put on probation… for being a sick child. I was told by school psychologists it was all in my head, but I knew very well all my pain was all too real. I was suffering so much physically and it felt invisible to those around me. At 13, I became depressed, and I attempted suicide a couple of times in my teenage years. I didn’t know how I’d endure the pain forever. Thankfully, I survived or I wouldn’t be here to tell my story! I began exploring my relationship with God, which has helped sustain me in my battles. God has saved me from death countless times.

In December of 2000, I had my first long hospital stay for sepsis, a life-threatening infection. I made friends with nurses who, to me, were literal angels rooting me on and making me feel less alone when no one came to visit me. I missed out on birthday parties, field trips, and graduating with my class. By 2012, I became disabled and debilitated by my symptoms. I was diagnosed with Mycotoxin Disease, chronic Lyme Disease, Postural Orthostatic Tachycardia Syndrome (POTS), Mast Cell Disease, and several other secondary conditions and infections. Thankfully, in 2016, my Lyme was in remission after 4 rough years of IV therapy and strong antibiotics. I still live with the long-term effects of all the antibiotics, such as damage to my GI system, a compromised immune system, and more. Mycotoxin disease is more than an allergy. It’s a degenerative disease in which mold toxins grow in the body of someone who doesn’t produce antibodies to mycotoxins, and attack and damage multiple organs and systems.

Courtesy of Claire Izabel Wilson

My mycotoxin disease is in a progressed stage, since it took years to be diagnosed. When I finally had a diagnosis that explained so much of the pain I experienced, I was relieved to be validated, but I was scared of the future ahead of me. My doctor’s first words after finding high levels of mycotoxins in my urine were, ‘You have a very tough road ahead of you.’ Well, ‘tough’ was an understatement. It turned out to be more like, ‘This fight for your life will take all the resilience and grit imaginable and turn your whole world upside down.’

Because I was living in a house with toxic mold, every single thing was contaminated. My doctor told me, ‘Get rid of all your belongings as if it was a fire,’ including sentimental items from my dad who died a few years before. I still tear up thinking about the books my dad had published for me and how I could’ve given them to someone, but my doctor’s words saying, ‘You could have died’ kept repeating in my head, and with trepidation, I threw my beloved books away. I’d already lost my dad, but at this point, I felt I had lost the little bit of him I had left.

I had lost it all at this point. I was a professional model and photographer starting my own business and had to give it all up. I was too sick to work or finish college. I couldn’t even drive any longer due to my seizures and POTS, which causes me to faint and blackout. Before I became disabled, I was a figure skater and dancer. That was also taken away from me and I still get sad when I think about how much I miss moving my body freely without serious consequences.

Courtesy of Claire Izabel Wilson

I even lost my fiancé after I had a wedding dress purchased, the venue booked, and the whole nine. My ex-fiancé’s reason for breaking off our engagement was, ‘I miss having physical relations.’ I got too sick to maintain a physical relationship and I was dumped for it.

At 31, I was diagnosed with Ehlers Danlos Syndrome (EDS), a genetic connective tissue disorder that has caused degenerative joints and discs, as well as osteoarthritis and many other complications such as subluxations and ruptures. This explained all the pain I had in my back, legs, joints, etc. since I was a child. These illnesses have also affected my brain. I have short-term memory loss and I was put in the dementia range in a cognitive functioning test at the tender age of 27. I live with hundreds of symptoms daily – exhaustion, shortness of breath, chest pain, nausea, vomiting, heart palpitations, dizziness, diarrhea and constipation, extreme blood pressure swings, cold sweats and hot flashes, severe allergies and anaphylaxis, chronic cough, bladder retention and incontinence, severe chronic pain, migraines, headaches and much more.

Courtesy of Claire Izabel Wilson

I struggle with sleeping due to my pain. I don’t have the energy for self-care most days. That being said, I’m so grateful just to be alive! I’ve survived cardiac arrest, blood clots, sepsis twice, and anaphylaxis several times! The damage to my organs makes it harder for my body to fight each battle. I now have heart disease, hypertension, and kidneys that have shrunk from lack of blood flow. I no longer have venous access as my veins are damaged from years of regular sticks for blood draws and IV’s. My home nurse draws blood from my central line, but even so, sometimes I have little to no blood output. Since my body’s so short on blood, it tries to hold onto the little bit it has. I’ve undergone so many rough treatments like chemotherapy over the years, different types of IV therapy, oral and IV antibiotics, oral and IV steroids, immunotherapy, physical therapy, occupational therapy, cold laser therapy, and all the meds imaginable!

Courtesy of Claire Izabel Wilson

As of today, I’m connected to tubes 24/7, since I have a tunneled line permanently implanted in my chest which delivers my 2 liters or more of daily IV fluids and meds straight to my heart. I’m also on supplemental oxygen at home and I’m connected to my oxygen wherever I go now since my lungs are damaged and my oxygen saturation is always low. I do daily breathing treatments and steroids and my rescue inhaler and EpiPen are always right by my side. I’ve had far too many emergencies to not be prepared! I have to regularly check my blood pressure and prick my finger to check my blood sugar. I give myself 2 or more shots a day since I’m on blood thinners for life due to having a couple of dangerous blood clots.

Courtesy of Claire Izabel Wilson

After years of falls/fainting from POTS, I sustained a very painful spinal cord injury. On May 26, 2018, I had emergency spine surgery in order to prevent permanent paralysis. I underwent a complicated 6-hour surgery and had to learn to walk all over again. I woke up from surgery with loss of sensation in my calves and ankles, and extremely painful nerve damage in my feet I still live with to this day. Not even high dose ketamine, which is used as an anesthetic, has helped my neuropathic pain. In addition, my surgery triggered a neurogenic bladder, meaning my bladder is now paralyzed. I had to be taught how to self-catheterize in order to pee when my body isn’t able to urinate on its own. Let me tell you, putting a catheter up your urethra isn’t the most pleasant experience!

Courtesy of Claire Izabel Wilson

In February of 2019, I was put in palliative care after countless ER visits and hospital admissions left me weaker, and I still needed more help. My body hasn’t responded to treatments the way we had hoped. Not even the strongest pain meds can control my pain after years of having to be medicated around the clock. I do my life-sustaining treatments religiously in order to survive with little quality of life. I do it so I can have more time with my mom and my cat, Ann Purkins, who’s my little silver lining and one of my biggest reasons to keep fighting!

Courtesy of Claire Izabel Wilson

When I got into palliative, I had to fill out an advanced directive, which is like a living will. Making end of life decisions at 32 was difficult to come to terms with. I had to decide if I want a DNR (do not resuscitate) and other very tough decisions. I had to do a lot of soul-searching and praying in order to accept the possibility of dying before I ever really got to live. I’ll probably never get married, and due to having genetic conditions as well as reproductive damage, I’ll definitely never be able to have kids. I’m too sick to travel like I’d always dreamed due to my unreliable heart, lungs, and – well everything! I can be stable one minute and unstable and in a crisis the next. However, my journey has taught me to find joy in the little things and has taught me more than most learn in a lifetime. It’s made me a much stronger, more patient, and positive person.

Courtesy of Claire Izabel Wilson

I’ve got to meet some of the most beautiful, brave souls in the chronic illness community who I think of every day! I get sweet and supportive messages all the time saying things like, ‘I don’t know how you can stay so positive while going through so much’ and ‘You’re the most amazing person I’ve ever encountered!’ Comments like these help me to fight!

My loved ones have supported me by being here for me throughout all the complications of my illnesses. Not everyone has been so understanding about what I’m going through and how it’s affected every aspect of my life. I’ve had people lose patience with me or doubt my illnesses’ severity despite the fact I’ve nearly lost my life several times over. So, a little understanding can go a long way. Often times I’m feeling too bad to talk, and sometimes I’ll snap or get moody. My loved ones understand it’s not me, but my illnesses and/or symptoms. When that happens, they give me space or will hear me out about what I’m dealing with.

Courtesy of Claire Izabel Wilson

Often times, I’m pushing through tough symptoms but don’t want to complain about them to my loved ones so as not to concern them or make them feel depressed. I may go online and vent about it to my chronic illness friends, but I try not to overwhelm the people in my life who already help me so much. I need help with just about every little thing most healthy, able-bodied people don’t even think twice about. Like taking me to all my hospital and medical appointments, which there’s never a shortage of. Help with food preparation. I even need help with bathing. As much as I hate to ask for help so much, I’m so grateful for each and every thing my loved ones do for me. Even if it’s just sitting with me and holding my hand while I’m throwing up.

It took a while for my mom to understand what I go through. Over the years though and after seeing me win one battle after another, she has found out just how relentlessly tough I am. She says often, ‘Thank you for being so strong. You’re a heroine.’

Courtesy of Claire Izabel Wilson

My advice to anyone going through a hard journey with your health or facing a tough battle is to find your reasons to keep going and never, ever give up! Mine are my faith, being here for my mom, and loved ones, and spreading awareness on chronic illnesses and the impact they have on people’s lives.

Let your reasons or purpose motivate you to keep fighting on the days you feel the weight of it all is too much to bear. Stay focused on all the good things, and anything that’s going right in your body and in your life. As I always say, ‘You can’t always change your circumstances, but you can always change your attitude. I choose to keep an attitude of gratitude.’ The more I’ve had to fight for my life, the more I’ve realized just how much I have to be grateful for.”

Courtesy of Claire Izabel Wilson
Courtesy of Claire Izabel Wilson

This story was submitted to Love What Matters by Claire Izabel Wilson of Washington, D.C. You can follow her journey on Instagram, Facebook, and YouTube. Submit your own story hereand be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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