Oh It’s Real Yar Shug

I am not always graceful or dignified. Especially when it comes to handling my body or my medical conditions. Despite being grateful for many things over the last few years, I have never actually thanked my body. In fact I blame it. I have had to grow accustomed to living through pain and discomfort daily or I would never get out of bed each morning.

The last 6 weeks have been a rough time for me medically. After two inpatient hospital admissions my asthma continued to flare at home. I was taking crazy high doses of prednisone and doing breathing treatments at home every 2-3 hours hoping to keep me out of the hospital for a third time. During this time my blood sugars spiked to the point where we had to start me on daily 24 hour insulin. That sucks balls but breathing is more important than sticking myself with a needle daily. Besides, I’m already used to self-administering my IV treatment for my hereditary angioedema so an insulin needle is nothing!

Despite the mega prednisone dose and frequent nebulizer treatments, my breathing kept worsening to the point where I would get so out of breath just walking upstairs or going to the bathroom. I would have to sit down afterwards for several minutes and catch my breath. I couldn’t talk in complete sentences. I started coughing up thick grey and green shit too.

Finding the balance of when it’s time to go to the hospital versus continuing home treatment is not a clear cut decision for me. We have to weigh the risks of exposure to mercaptobenzothiazole, catching some nasty infection from being immunocompromised, or exposure to coronavirus over the potential benefits of treatment the hospital can provide me that I don’t have access to at home like IV magnesium and nebulized epinephrine to open up my airways.

We finally made the decision to go to the hospital for treatment after my doctors told me “You’re playing with fire Amy!” Due to coronavirus restrictions, NO ONE (not even your spouse or family members) is allowed inside the emergency room or hospital with you. I waited 3.5 hours in the emergency room waiting room for a treatment bed despite my breathing status because the hospitals are that overloaded. And I was the priority patient in the waiting room due for the next bed! By the time I was called for a room, the nurse had to assist me and call for help because I had so little air movement in my lungs. I was immediately given nebulized epinephrine, multiple albuterol treatments, IV magnesium, and IV steroids to open my airways. They continued double albuterol treatments every 2 hours and told me I was being admitted to the intermediate care unit just below ICU.

Due to the higher level care room I required, I remained boarded in the emergency room for the next 30 hours because so few of those rooms are available compared to a regular room. I got virtually no sleep and was receiving nebulizer treatments every 2 hours plus IV steroids every 6 hours. I don’t know how anyone could sleep on a stretcher with no pillow anyway.

Over the next few days my breathing began to make slow steady progress. But the high doses of IV steroids made my blood sugars even higher. Now we had to start administering insulin after every meal in addition to the 24 hour insulin I was given each night after dinner. My arm looked like a pin cushion! 😄

As a patient in the hospital they also give you daily shots in the belly to help prevent blood clots. These fuckers sting like hell and often bruise me. The first shot left such a nasty bruise that it looks like a birth mark! The following day it ended up bleeding through my gown so we had to bandage it up for a little while.

Bleeding bruise after shot for preventing blood clots

My doctors originally told me to plan on being in the hospital for one week which I wasn’t thrilled about. But since this was my third admission in 6 weeks I also didn’t want to be discharged too early again only to end up back a fourth time. The hospitals are overloaded with patients and COVID pop up units are occurring all over the hospitals due to the rising numbers of positive patients. This is spreading all of the healthcare workers thin and negatively impacting patient care. My hospital stay was extended by a few additional days because healthcare workers missed scheduled breathing treatments for me multiple times. This caused huge setbacks in my breathing so we had to spend three days in a row rapidly increasing medications and nebulizer treatments to get my respiratory symptoms stable. After a 10 day hospital admission we finally got my breathing stable enough for me to safely come home.

There is no cure or treatment end date I am working towards. My conditions are a permanent part of me. As much as I hate to admit it, they control so much, including my appearance. The pregnant looking belly, swollen distorted face, buffalo humps on my neck and shoulders, the sideburns, my hair thinning and falling out, and bruises everywhere. I certainly do not meet society’s conventional standard of beauty. There’s sort of a pirate quality to my appearance. Oh it’s real “Yar” shug!

Swollen from high dose prednisone

While I know that I don’t always appreciate my body, I am realizing how much I actually ask of it. I push it every day in spite of my diseases and it still continues to recover. So far, no matter what obstacles it faces or appearance changes it goes through, my body continues to allow me to see another day. So today, I am grateful for this new perspective, for the deep breaths I can now take, and for the reminder of what a blessing it is to be alive.