Young, Sick and Invisible

My illness has shaped me,
But it does not define me.

Guest Post: 'Michelle's Story.'


Bee

Hello my name is Michelle and I’m 23 years old, I am single and have no children. I live in a small Canadian town. I have a healthy twin sister and a beautiful 2-year-old niece.

Before birth I was diagnosed with Esophageal Atresia Ultra-long gap. Esophageal Atresia is when your esophagus and stomach don’t connect, in my rare case I didn’t even have the esophagus from my collar bone down so they had to make it out of my stomach and back muscles. Ive had 9 major surgeries between the ages of 1hr old and 5 years old, I had #10 last year. I’m also at a count of 100+ surgical procedures as I am at an increased risk of getting esophagus cancer, I go under anaesthesia every 3-6 months for a scopy and biopsy, due to allergies I have to be put right under I can’t take Ativan or anything like that.

Chest scar

At the aged of 2 years old I was diagnosed with asthma, I never grew out of it, it only got worse. My airways and lungs are “fixed” at a lung function of between 46 and 50% lung function due to pneumonia every winter, constant reflux aggravating my lungs, and allergies. I go in every 2-weeks for an injection to help my lungs called Xolair, until recently I had to travel 3hrs away to get this but now my family doctors give it to me in hospital.

At the age of 10years old I went into anaphylactic shock from chewing gum, it turns out I developed an anaphylactic allergy to latex from being exposed so much.

At the age of 12 years old I was diagnosed with an “S” curve of scoliosis at 19 ( when I finally stopped growing at a height of 5ft) I had surgery on this from C6 to L4. I know have to go back in to get L4 to S5 done.

Back scar

I also suffer from Chronic pain (in my entire back, hips and knees), anxiety, GERD, IBS, anemia, hearing loss, and a learning disability.

I was born with my diagnoses so I don’t know what life is like without them. I was homeschooled and I have worked on and off as an early childhood educator but if I work more than 4hrs/week I get very sick, so I’m also on disability and live at home with my mom.

The diagnosis was done through ultrasound and was discovered when they noticed I was swallowing in the womb, they did many tests and new what I had before I was born. The scoliosis itself wasn’t a hard itself but I do have a new issue of constant pain at a constant 8 and we don’t know why yet, it could be from scoliosis it might not be. I am always researching on the internet what could be wrong.

Back scar

I get flares in my esophagus it feels like there is literally fire in my upper throat and my esophagus swells and food gets stuck. I get flares in my lungs that causes asthma attacks that go on for days, it feels like my ribcage is crushing my lungs. My other flare is in my back, in my upper back it feels like my muscles are paralysed and can’t move, my mid back feels like knife keeps on stabbing me between my ribs, my lower back feels like bad menstrual cramps even when that’s not what it is, it gets so bad I cant walk. My hip and knees feel like I am being stabbed in the joints.

When I have flares in my esophagus I drink lots of water to get food down, I manually push it down and drink a mix of 3% milk and 18% cream to help with the burning this normally lasts about a week, with my asthma flares I up my medications and rest. With my back/hip/knee flares I take Tylenol, muscle relaxers, and gabapentin for the pain and I live on a heating pad. I have been in a flare for 8 months now, I know that sounds like a long time but its true and my doctor doesn’t believe me its this bad so hasn’t prescribed me anything but the gabapentin but that doesn’t work. My triggers are dry foods such as bread and meats, and fatty foods, asthma triggers are my allergens and exercise, and my back/hip/knee triggers are walking, sitting, standing, reading, typing, driving, lifting, and more that I can’t remember. Lately I tend to sleep more than I’m awake.

Stomach scar

My biggest tip to someone with any of these illness is to not be afraid to say No if you can’t do something, and conserve your energy, its taken me my entire life to learn this.

This has greatly impacted my life, I don’t have the energy to date so I haven’t met anyone, I can’t have children, I can’t go out and do whatever I want when I want, I can’t work, and I’m in constant pain. It has given me the ability to understand people and have patience. I am very isolated my only friend is my twin sister, I watch a lot of youtube videos to feel more apart of the world. My dogs (hypoallergenic poodle and yorki) are my best friends and we have a lot of conversations. I do find staying positive is difficult on some days but when I feel that way I think about things I can do and I want to start to spread awareness. The thing is my diseases separate lots of people have and have normal lives, but all together its just a clustered mess that is debilitating on some days. I don’t plan my future I go day by day

- Medicines described in this blog are prescribed to this individual by their Doctor. Always consult your Doctor about what is best for your needs before taking any medication -

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