You know how they say “when it rains it pours”? Well, I hate that saying. Mostly because of how much truth it can hold. It’s amazing just how much can change in a year in your body. Each day, a mystery in a bad way. So much so that honestly, you dread going to sleep because you have no clue what the next day holds for you. One day to the next, completely exhausting. And all you truly want is to enjoy the happiness you finally have in your life.
You might remember in the last entry of this series all of my diagnosises up to this point. Fibromyalgia, Lupus, Arthritis, Dystonia, and the latest up that point, COPD.
It has been a whirlwind even since that last post. My vitamins have been out of whack, my fatigue has been in overload, my breathing has seen some very bad days, and some good days.
I want to go back for a moment to 2019. Towards the end of November 2019, I woke up one morning feeling as though I had a large grape sitting in my throat. After a couple hours went by, that grape began to feel more like I had a golf ball sitting in my throat. I decided at that point that I should go to the emergency room. The ER doctor did xrays, and some swabs for strep and told me I had tonsilitis. I was completely baffled considering I haven’t had tonsils since I was 11 years old. He gave me a steroid shot and sent me on my way. The steroid shot did seem to help the swelling in my throat go down. However, a couple of days later, I felt just absolutely horrible. I couldn’t breathe and just felt like complete crap. Two days after that, the hospital called me and said my strep culture had came back positive. A week from then, I was even worse so I went to a walk in clinic. I was so short of breath that by this point, I could barely even get up out of the recliner I had been sleeping in. I found out at this point that I had pneumonia. I stayed deathly sick for the next month.
Over the next year, I had a couple of problems here and there with my breathing and while at one walk in clinic visit, I mentioned how from time to time, my throat swells up and feel like a golf ball in sitting in it. That particular doctor told me that if it continued, I needed to get my thyroid checked.
By November of 2020, I was exhausted. I had since been diagnosed with Lupus along with all of my other things and was feeling beat down. And just like a repeat of the year before, I began to get so sick again. Next came a slew of doctor’s visits, and even a couple of ambulance calls. By January of 2021, I had had enough. I had my doctor refer me to a pulmonary specialist and of course, as stated before, after breathing tests, and a catscan of my lungs, was diagnosed with COPD (stage 3).
Over the past year, I have had problems with the thing (golf ball) swelling up in my throat and began to notice that certain foods triggered it. So, one by one, I began cancelling foods out. I can’t eat pizza, can’t eat spaghetti, can’t eat sloppy joes, can’t eat blah blah blah. But over the past 2 months, it began to swell and not go down. So, my primary doctor set me up for an ultrasound on my thyroid.
Fast forward to last week. My primary doctor’s office called me to set up a slew of appointments discussed in our last appointment. Before she let me go, I had to press her to remind her of my ultrasound and she looked in my file and realized that they were in there. I was immediatley scared as she told me they found multiple nodules on my thyroid.
Now, I wait. I wait with this golf ball in my throat. The thyroid specialist couldn’t get me in until July 28th. And I am also waiting on a GI specialist appointment because I am having so much trouble swallowing.
I’m overwhelmed with so much frustration. My primary doctor for years moved to the beach and didn’t tell any of his patients and I got stuck with a doctor that is very old and only works 2 days a week, which I am quickly realizing is not available enough for me with all of my health problems. He also seems very absent minded and confused which frustrates me greatly. I have decided that as soon as all of my referrals are set up, I am finding another primary doctor immediately.
It’s heartbreaking and so frustrating to be surrounded by doctors whom you feel don’t care about you. The only one I can say cares a great deal about me is my pulmonary doctor. He is incredible.
I daydream all of the time. I dream of what life could be like without all of these health problems. I have an incredible daughter who has a whole future ahead of her, and a man whom I am so in love with that sometimes I want to pinch myself. I want to spend my entire life with him. I want that to be a long life.
I embrace and cherish every moment in my life now. The sun’s brightness feels different on my skin. When my significant other and I are working with our plants and garden in our yard, it is the greatest times I cherish. Cooking meals for him and my daughter are moments that I don’t take for granted. Making them muffins so they have a great breakfast snack. Making his lunches every night before work the next day means everything to me. To be providing for others while I can, and praying that I can do it for many years to come.
I don’t dwell on these appointments coming up. I can’t. I would lose my mind entirely with obsession if I am not careful. Life is too important to focus on things you can’t change. I want to love. With my whole heart. And even if the only adventures I go on right now are the ones in the garden with him, or in the car going down the road with my daughter, they are the greatest adventures in the whole wide world.
The Truth and the Lies of the Journey 