November 15, 2016
The day started off a bit more difficult than my typical baseline pain day. My right shoulder, and my right scapula (shoulder blade) were subluxated when I woke up. My mom couldn't get them back in due to me being in the halo. Since the halo covers your back it makes it difficult for someone to get a good grasp of the scapula, and manipulate it back to where it should be. Fortunately I had physical therapy before noon so I thought at the very least they'd be able to partially get my scapula back in place, and tape my shoulder with leukotape. Leukotape is stronger than K-tape.
When I went to physical therapy it was confirmed my scapula and shoulder were subluxated. My physical therapist taped my shoulder joint which helped some; however, it was challenging to get my scapula back in place. We didn't do a ton at physical therapy because I was in a lot of pain, my shoulder was being temperamental, and we didn't want my shoulder to shift more out of place. When therapy ended my mom and I went home. The plan was to get my hair washed. I was sitting on the kitchen counter setting up the shampoo and conditioner so my mom could wash my hair in the kitchen sink; again, the halo can't get wet in the shower. While I was sitting a strong cross breeze went through the house, and slammed a door shut loudly. This scared the crap out of me, and startled me big time. No big deal, right? Wrong! Since the slamming of the door blindsided me, and I was completely relaxed, my shoulder and scapula dislocated. With EDS you're always constantly aware of your surroundings. You consciously think of tightening your muscles when out in public, walking around...basically everything, because tightening your muscles helps aid in stability. If you're completely relaxed and something happens our lovely EDS tissue is far too weak to stabilize our joints, therefore they pop out. That's exactly what happened to me. This has happened multiple times in the past but this was the first time with the halo on. Let me tell ya, it was a living nightmare. The halo makes it 100 times harder to deal with.
My mom was sitting in the chair, and saw it all happened. We locked eyes on each other. I started laughing for two reasons 1.) a door slammed and significantly popped my right shoulder and scapula out, and 2.) I was in shock. I sat on the counter with my legs crossed leaning forward with my right elbow sitting on my knee. All I kept doing was chuckling, crying, and saying, "Oh no, this is bad. This is really bad. This is really, really bad. Crap. What am I supposed to do? As soon as I stand up gravity is going to make this shift out even more. Mom? Mom? Mom? What do I do? Maybe I should just sit here all day? If I stand up I'm pretty sure I'm going to end up in the emergency room because I can feel my shoulder blade sticking into the halo, and trying to hook around the outside of it. Mom? Tell me what to do!" My mom calmly said in a comical tone, "Well hon, you can't just sit on a kitchen counter all day. Why don't you slowly stand up, we'll see what things look like, and then determine if we go to ER." I agreed with this plan. I stood up and my R arm just dropped. I was stuck leaning forward due to the scapula positioning. I had my mom undo the Velcro strap over my shoulder so I could assess things better in the mirror. I couldn't see my shoulder well in the mirror due to not being able to turn my head. I had my mom take a picture. I looked at the photo and said, "Time to go to the ER."
The ER doctor decided it was best to call orthopedics to come down and see me because it was a complicated situation due to the varied problems in three locations, and the halo. In the meantime they had started an IV in my elbow after stabbing me a million times (another lovely issue with EDS) and I was given IV Valium which is a muscle relaxer to try to get my muscles to chill out. I was also given pain medication.
|I wasn't kidding when I said my mom tied the gown to the halo bars haha. That's my beautiful clavicle (collar bone) sticking out for your enjoyment. No need to thank me.|
Orthopedics eventually came down. They had never dealt with a patient whose shoulder girdle was out of position, and also in a halo at the same time. Could we make this more complicated? The orthopedic told the nurse to give me a lot more Valium, and pain medication because my muscles weren't relaxing. One of the problems with EDS is that we metabolize medications fast, making them less effective. The goal was to get my arm back in my external rotation shoulder brace. After multiple attempts that failed to get my scapula back in place, the ortho had me lay on my left side. The ortho had another medical personal assist. They pulled my right arm down towards my feet, and then swung my arm forward. An assistant held my arm in this position. The orthopedic then used all his body weight to mobilize my scapula back to where it should be. It was like having chest compression done on my side. Believe it or not I'm usually not screaming or swearing during this process. This time the pain was unreal. I may or may not have said a word that starts with F and ends in K. I said it once, and then apologized. Oops. My bad. The ortho finally got my scapula somewhat back in place, and my arm in my shoulder brace. I cried so much, and was exhausted.
The time had come where I was finally sitting. The pain was intense though. Having the ortho pushing his body weight on my side, my muscles spasming like no other, and the pull of everything on my spine had me feeling miserable. Ideally the doctor and nurse wanted to admit me for pain control but I didn't want to be in the hospital. At this point it was nighttime. The nurse talked to my mom and I. We decided I would go home but if the pain is too much then we'll turn around and bring me back to the ER. Going to an ER for pain control is always nerve wracking. I don't want them to think I'm drug seeking. The nurse made a point of writing in my chart there was possibility of me coming back, and she was going to speak with the ER doctor. This meant the world to me. Fortunately with medication regimen at home I was able to avoid the need to go back to the emergency room! Score!!
So that was the day from hell. Little did I know the quote above would be foreshadowing what was to come. I had 15 days left in the halo, and life would take me to a place I never was before.
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