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! πŸ˜„

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.

20 thoughts on “Oh It’s Real Yar Shug

  1. Amy you are so strong – you have been through hell and back, and keep on fighting. It’s amazing that through all of this, you still find a way to love your body. I wish that I could take this horrible allergy away from you. Sending all my love xx

    Liked by 1 person

    1. Thank you so much for your support and encouragement! 😊❀ I admit there are many times I don’t love my body because I miss what it used to be before my illnesses. But I am finding ways to accept it. Living with these conditions and changes has taught me a lot of patience, forgiveness, overcoming fear, and a willingness to step out of my comfort zone. I hope by sharing my story it shows others that good things can still come out of difficult situations.

      Liked by 1 person

      1. You are also aloud to be angry, upset and hate. All feeling are completely valid and it’s incredible that you keep on going and see even tiny positives in the darkness xxxx

        Liked by 1 person

        1. I allow myself to feel whatever range of emotions comes to the surface in the moment. That way I can process them and not let them fester into a bigger problem. I have found this also helps me to start accepting things I can’t control or change. Thank you for your support 😊

          Liked by 1 person

  2. Amy, beauty isn’t all about the social standard. Your beauty is in so much more! Your smile, your laugh, your caring nature, etc. I see you as a beautiful gem and it hurt so much to see you in so much pain. I know there’s no cure as yet, but hopefully your hospital stays get further apart and you’re able to enjoy life more πŸ’– Always here for you!

    Liked by 1 person

    1. Thank you Shelly! Often I miss the physical me before I was sick. I look in the mirror and don’t recognize myself. But I am trying to accept all of me (even the appearance changes) because I know that it’s out of my control. I love you for the support and encouragement you provide ❀ You are a beautiful person inside and out and I cherish our connection 😊


  3. It’s so inspiring how even in this waterfall of horrors-you-definitely-dont-deserve you STILL find a positive. Hope you get super-well soon (and get to discard the pirate smirk 🀭).

    Ps. That’s an impressive pincushion indeed. Much strength to you and your poor skin!
    Luckily you still rock the purpleblueblack of the bruises!

    Liked by 1 person

    1. This was a vicious cycle unfortunately. My asthma flared originally after an anaphylactic reaction in early October. After 10 days of not controlling it at home I was admitted back to the hospital. We were getting my asthma flare under control until I was discharged home on too low of a dose of prednisone. Within 24 hours my asthma flared even worse. The sharp changes in weather also tend to worsen ny symptoms. I spent another 2 weeks trying to get it under control at home before I was admitted back to the hospital for a third time. Thankfully after this third hospital admission of 10 days I am home now. My breathing has remained stable at home with nebulizer treatments every 3 hours and high dose prednisone.


  4. Amy, you have been very strong from going through all of these. You have been very inspiring ever since I found your blog. πŸ’• You remain grateful in spite of what you’re going through. You amaze me. πŸ€—

    Liked by 1 person

    1. Thank you Joana for your ongoing support and encouragement! I am so blessed to have a wonderful support community-including you 😊❀ I want to show others that even through the struggles of life, we can find gratitude even in the small things πŸ™‚ Thank you for continuing to read my blog and share your thoughts! It means a lot to me! πŸ’•

      Liked by 1 person

  5. Wow! You are a solider, Amy! Thanks so much for sharing your story and reminding us the type of perspective we should have when things don’t always workout in life the way we would like them to.

    Liked by 1 person

    1. Thank you for reading my post and your encouraging words! Life isn’t always easy for any of us. But I hope to show others that no matter what obstacles we face we can keep pushing forward and find gratitude in the small things πŸ˜€

      Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s