Immunocompromised

One day I was living life–at the peak of my career, sweating it off at my orange theory classes, loving my independence while I traveled and enjoyed the company of friends and family. I was in the light and suddenly the switch was flipped. I was not prepared for the darkness that surrounded me. I fell to my knees while I gasped for air as this unknown entity tried to take over my body.

That’s how I can explain the initial stages of my rare disease. I was in the emergency room so many times that I lost count. I had never been admitted until the day I was admitted to ICU. It’s hard when you have no family or close friends around. I am very grateful to my work family for their support during that time.

Funny enough, I didn’t even know I was in the ICU. I understood that I was having a severe allergic reaction. To what? Who knew. I discovered I was allergic to milk. MILK of all things. I just had mac and cheese and ice cream a few weeks ago. How could that even be? My throat was closing up. No, I had nothing to eat or drink with milk that day. I was given so many shots of epi and other drugs and just when they thought I was okay, it happened again.

I remember the doctor saying I would be admitted, but I don't remember her saying anything about the ICU. I only found out after requesting my records. This was prior to my diagnosis so I made it a point to have all my medical records in my possession.

The healthcare system sucks at times. You need to see a specialist. You call. Oh Dr. so and so is booked out until the end of the month. Things don’t happen as quickly as you want them to when you’re suffering. You know what else sucks–not being listened to.

I first had hives which wouldn’t go away. Benadryl didn’t help. In fact, none of the antihistamines helped. Steroids helped for a period of time. I was getting the run around from my primary care doctor’s office.

Nurse: "Just don’t drink milk. You’ll be fine.”

Me: “I am not drinking milk and I still have hives. I am not fine because my entire skin is on fire.”

Nurse: “What do you want to do?”

Me: “I want a referral to an allergist.”

Once I determined from my insurance company that I didn’t need a referral to see a specialist, I began referring myself to different specialties. I knew something was wrong and I was determined to find out. It was time to be my own advocate.

I remember my allergist mentioning the diagnosis in passing–saying that he hoped it wasn’t the case with me because it is so difficult to treat. Did he test me for it? NO. We could have saved me months of suffering when all I needed was a biopsy.

Months after that, I was diagnosed. I cried not because of what was said but because I was so relieved. Whatever was attacking my body, had a name. I was diagnosed with hypocomplement urticarial vasculitis (HUV).

HUV is an autoimmune disease with an unknown etiology that causes small blood vessels within the body to be inflamed. It is usually caused by low levels of complement proteins in the blood. It causes hives and lesions on the skin that usually itch and burn. It can lead to systemic and multiorgan involvement attacking the eyes, kidneys, lungs etc. There is no cure.

Currently, I am on immunosuppressants to treat my HUV and they are not without their side effects. Sometimes I don’t respond very well to different treatments. I carry an epi pen with me always–I never know when my throat will close up. Living like this is difficult, especially when I have other organ system symptoms. However, I am still determined to keep that light on. I refuse to live in the dark.

This year I became a finalist in a rare artist competition. This contest is designed for individuals of all ages who have been diagnosed or who represent someone diagnosed with a rare disease. If I win, this will give me an opportunity to bring awareness to my disease. You can vote for my painting “Intensity” by clicking on the link to vote. You will first need to register and can only vote once. Your vote is kindly appreciated. Please help me raise awareness.

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Thank you for reading and if you voted I can't thank you enough for your support!