Alex's Diagnosis

Asthma- “a chronic lung disease that inflames and narrows the airways. Asthma causes recurring periods of wheezing, chest tightness, shortness of breath, and coughing…asthma has no cure, even when you feel you are fine, you can still have the disease and it can flare up at any time” (NIH).

Deaf- Cannot hear out of right ear since birth

Shingles- “a painful skin rash caused by the varicella zoster virus, the same virus that causes chicken pox” (CDC).

Postherpetic Neuralgia- “a complication of shingles… it affects nerve fibers and skin, causing burning pain that lasts long after the rash and blisters of shingles disappear” (Mayo Clinic).

Melanoma- “the most dangerous form of skin cancer, these cancerous growths develop when unrepaired DNA damage to skin cells… triggers mutations.. that lead the skin cells to multiply rapidly and form malignant tumors” (Skin Cancer Foundation)

Lymphoma- “a type of cancer that affects…the lymph nodes and lymphatic tissues” (LLS)


Alex

"I don't remember being diagnosed with asthma, my lungs were underdeveloped when I was born I was in the ICU at Arnold Palmer Children's Hospital for a few months after I was born and was given a lot of steroids to aid in my lung development. When I finally went home, my parents had a tough time because I had a lot of problems stemming from my lungs and was in and out of the hospital a lot as a child. My parents limited my activity and I had to do breathing every week to maintain my lung health. When I was in elementary school, my asthma didn't bother me as much, it only flared up in times of stress or strenuous activity. I still played multiple sports throughout high school but I was cautious and carried an inhaler everywhere I went, only needing to use it occasionally. When I got to college and hit adulthood, my asthma came back from stress. Throughout college I was again in and out of the hospital because I had a bunch of other health problems."

"One of the most embarrassing stories that I have is I was on a first date with a guy, he picked me up and took me to Carrabas to eat and we had a plan to go to the movies after. We ordered and I wasn't feeling great but I ignored it, not wanting to blow a chance with this guy who I had a crush on, I mean I finally got him to ask me out! So I ordered and our food arrived and we both started eating and I was in really bad shape after 10 minutes so I told him 'I'm really sorry to do this but could you take me home?' Not wanting to tell him I felt like I was drowning and a 500 pound elephant is sitting on my chest. So he kept asking what was wrong so I just told him I will be okay I just need to get home ASAP. So he took me and I felt like I was dying, I couldn't breathe so he kept asking me questions about my medical history, allergies and medical questions so I told him and then we were getting close to my house but at this point I couldn't breathe well and could barely talk, so he took me to the emergency room and I had a massive asthma attack and my airways were swollen shut. They took me back immediately and they had to intubate me. He waited with me until my parents got there and I ended up being discharged from the hospital two days later and he stayed with me until I had my parents there and we ended up dating for a while after that."

I felt like I was drowning and a 500 pound elephant was sitting on my chest...

“I carry an inhaler with me everywhere I go and I’m also on a corticosteroid, as a daily thing. The doctors aren’t too worried about it unless I'm really stressed out or I'm exercising too much. I exercise a lot but I don't run because running is usually what will trigger it. I guess I just know what I'm limited to because I've been living with it my entire life which is different than for some people.”

“It’s not something I regularly mention in passing, if people know me really well, people know I’ve had a really bad medical history… I don’t know if this is everyone or just me, but if I don’t feel well, if I’m in pain or my asthma is flaring up that day, it’s kinda like mental health.. people don’t really see it as an excuse. People think, ‘well you live with this on a daily basis, why can’t you come to work today? Just deal with it’.”

Asthma Explained

Here you can see the body's reaction when Alex's asthma flares up. The bronchial tubes constrict leading to her feeling like a "500 pound elephant is sitting on [her] chest."

“ I have chronic neuropathy that stems from shingles I had while I was in college. I had it on my face which is not normal… it involved my eye and this side of my face, one quadrant was really affected. The neuropathy stems from that, but the shingles stemmed from me getting cancer. I was really sick and I didn’t know I had skin cancer but things kept happening. I got chronic respiratory infections and bronchitis, and I got the flu 6 times in a 6 week period. They ran tests but when I got shingles they were like ‘why is your immune system shot? You basically have no immune system…do you have AIDS?,’ so they ran about 100 tests because they were convinced I had AIDS which was the most embarrassing thing… but I’m a more olive skin tone, I have a lot of freckles and moles, and they checked for abnormal ones and there was this one that was black and huge on my back. I can’t see my back so obviously I didn’t know, and they took a sample of it and they said you have melanoma and it has spread to your lymph nodes. I had lymphoma.”

They said you have melanoma and it has spread to your lymph nodes

“Finally the shingles subsided, they started me on treatment for the melanoma, I had surgery for that and radiation, and I was in and out of the hospital.”

“Now I have chronic nerve pain in my face where the shingles were, and I can still feel it when I get stressed, it’s like a spidey sense. It tingles, but doesn’t really hurt that bad, although it is on the ridge line of my face. I also have scars from the shingles but I cover it up with makeup, they kinda look like acne scars, and I have medication for the neuropathy.”

“I take a nerve blocker, they don’t prescribe it anymore because now it’s a narcotic… so now you can’t just go get it, you have to be referred by someone. I went to a bunch of specialists at UF and I had to go to a neurologist, but luckily I was being treated by the best doctors in the country. The pain is being pretty well managed, if I feel pain I take the medication and I feel better, it’s just one of those things like ‘wow my face hurts today,’ and I’ll be at work scratching it because it itches when it tingles.”

“I’ve had a really weird medical history and people say ‘how are you alive?’ because I actually went deaf when I was a baby, that’s just something I live with. Randomly for no reason, I’ll get ringing in my ears and it’s so loud and it gives me a headache and I don’t know how to describe it. It’s just a high pitched ringing, and for the longest time I was like ‘can anyone else hear that?,’ finally I went and got tested in elementary school and they said ‘you’re actually deaf’.”

webmd_illustration_of_shingles_virus.jpg

Shingles

Even though Alex had shingles on her face instead of her back (which is a more common location,) this shows how the virus impacts the layers of skin.

“I don’t like taking medication in front of other people especially my co-workers because I don’t want to have to say ‘I have to take these pills just to feel like a normal human right now,’ it’s just kinda weird, and not a conversation that I have to have with a lot of people. Especially my boss, I feel like she doesn’t really need to know unless I’m having a problem.”

“My boss knows that I’ve had cancer before and a history with it, so if I get a fever and I’m over 102 degrees, I have to go to the hospital and get checked to make sure nothing is coming back. So that’s happened a couple of times, I’ve gotten sick and my fever has gotten really high so I have to tell my boss ‘can’t come into work today, gotta go to the hospital.’ But her husband had cancer before so she understands. I feel like with more common things like cancer people understand more, but with any other sort of chronic illness, people are like ‘I don’t really know anything about it’.”

“I had one doctor who wanted to do all these tests for fibromyalgia and I was like ‘1 I’m not going to pay for all these tests and 2, it’s just ridiculous, I don’t have nerve pain other than in my face where the shingles were. I had one neurologist say this is what it is and I just have to get a second neurologist confirming it so I can get the prescription’”. 

“When I moved out here since it was a new doctor, I had to go to two neurologists and get a confirmation of the disease for the prescription. Why can’t you just call my old doctor… I have a pill bottle right here that says I’ve been taking it for a while?”

I had to go to two neurologists and get a confirmation of the disease for the prescription

“My mom once threw away a whole pill bottle of mine, and now that they’re classified as narcotics I’m like thanks mom I can’t get any more for a long time. She thought they were expired because they were a year old, but really it’s just because I only take those pills when the pain gets really bad.”