Sorry ahead of time for the length of this post!!! Making up for lost time.
If you are one of the almost 45% of people in our country that has been diagnosed with a chronic illness, then you know that your life will, more than likely, forever include more doctor visits than the average person, daily work put into your health, and setbacks.
Let me be the one to tell you straight….set backs are hard. This past week I had the first set back I’ve had in awhile, breaking a record time without one in my crazy health rollercoaster. They suck. After ten months of progress a bad day hitting you can really catch you off guard. And when it hits, all of the complicated emotions that come with having a chronic illness come slamming back too easily. It feels like a punishment to have a record you worked so hard for have to be started over. You emotionally question the “WHY” all over again, even though you logically understand the reasoning behind your disease. A set back is an instant, often unexpected, always unwelcome reminder that You have a chronic illness.
For me, this past Monday at 5:00am I was woken up in pain. I shot up out of bed immediately realizing what that pain was before I was completely awake. My jaw. Dislocated. Immediate tears. The pain of my jaw being locked open makes me sick to my stomach. It feels like an ice pick is stuck stabbing me in the jaw joint, while my nerve sends a shooting, electric shock like, pain down my jaw line. It can often be worse than the pain of my actual migraine. I knew my week had been a bad one, knew that the pull in my face had gotten progressively worse over the weekend and that the tingling in my right hand was slowly beginning to move up my arm. But I had made it all week and through the weekend, why couldn’t I make it just five more hours to my infusion that would get me back on track? I knew what that meant the day had in store for me. But I stayed hopeful that my infusion would be able to solve my problem, especially since it hadn’t happened in so long. I texted my neurologist at 7:00 that morning and he responded three minutes later with a plan. With my regularly scheduled infusion appointment still a couple hours away, and time not being on my side in these circumstances, my mom called the infusion center to see if we could move my appointment earlier. As usual the infusion nurses, willing to do anything to help, agreed and told my mom to bring me in as soon as she could. While my weekly cocktail did improve my migraine pain and other symptoms it unfortunately didn’t solve my jaw issue. But it was a start.
This is where I brag on the care I get in the infusion center at Ellis Fichel, and this being one of the reasons I wanted to post a blog. The nurses there are amazing. Easily all taking spots in the top ten nurses I’ve had over the last five years. Within ten minutes of getting to the hospital they had me back in a room, with my port accessed and the first round of my medicines administered. That timing doesn’t happen in the slow moving world of the hospital!!! An hour into my infusions I receive a second dose of one of the pushed medications. My doctor had told me to check in with him with an update at that time. I texted him, but my nurse went right to work on getting ahold of him to make sure he got the update.
Dr. Cheesy told me to finish out my infusion and then check back in with him. We were all disappointed because that meant waiting at least three more hours before taking the next step. It was a long three hours. My nurse was doing anything she could to make me more comfortable. As soon as my magnesium drip finished my nurse pushed my last round of medicine and started calling my doctor. My infusion was complete. My jaw was still dislocated. I would have to be admitted. Immediately she did everything in her power to speed up the process to get me upstairs. All I wanted was to get admitted early enough in the day to have my jaw reset before the next day. That’s all everybody wanted. The nurses let me stay in my dark room for the next few hours while we played the waiting game, instead of having to wait in the big admissions area surrounded my tons of people with my mouth stuck open. Even after my nurse was off for the day, one of the others kept in contact with my doctor until they were ready for me upstairs. They even wheeled me up themselves. I’m telling you these ladies are all the best of the best. I’m lucky, and my whole fam is incredibly thankful for such phenomenal care and support every single week. I couldn’t find better care if I tried. If you’re in Missouri, making a trip to the Ellis Fischel Cancer Center Ambulatory Infusion Center at the University of Missouri Hospital is a choice you wouldn’t regret. Their slogan “Where YES finds a way”, is so accurate. I could continue to go on and on about them but I should probably move on or this blog will be entirely too long. 💕
Back to the update! Once I was upstairs the neurology resident on call came in fairly quickly. That consult went about as hilariously ridiculous as normal. Why do they never read a patient’s chart before they see them?! As my dad comuinicated for me he mentioned that I hadn’t eaten anything since dinner the night before. This being an important fact mostly because I couldn’t eat, but also because I wouldn’t have to wait for food to be out of my system before the ENTs could put me under for the necessary procedure. The resident looked extremely confused as he asked, “Why can’t you eat? Is it because your mouth is too dry when you put food in it?” It was our turn for my dad and I to look confused. Sir, please open your mouth and without closing it try to eat.🙄 Let me know how that works out for you!!! The meeting with the on call neuro attending went about just as well, I’m pretty sure after repeating ourselves multiple times we taught him what Dystonia was. But he did finally agree to page the ENTs. Crazy how much reading a patient’s chart beforehand to see the instructions put in by the doctor hours before can help!
Per usual, within 20 minutes of being paged the ENTs arrived for the consult. The doctor put gloves on to exam my jaw as he talked to us about the process and what has worked best in the past. Without wasting any time he left to get things ready for the procedure. Within the hour the team was back in my room having me sign the consent papers for anesthesia before taking me to the OR for the procedure. I repeat, all with in ONE hour. The ENTs are also one of the best teams I’ve worked with.
I was greeted in the OR by a nurse I’ve had before. He said, “Young lady you and I have done this before really late one night.” He quickly celebrated with me that that was ten months ago, and the last time I’d had to have it done. I watched the ENT doc wrap layers of gauze around his thumbs as he got ready to reset the jaw, and remember the anesthesiologist pushing the first medicine to put me out. Next thing I know I’m waking up in recovery with the nurse next to me, ready to help with the pain. It’s a different kind of pain than the unbearable electrocuting pain while being dislocated. They have to wrap ace bandages around my head to stabilize the jaw, making sure it doesn’t slide right back out. However, I immediately noticed the wrap was much tighter and more uncomfortable than normal. It bothered me through the night almost as much as the pain from my jaw itself. At one point the nurse paged the doctors asking if we could loosen the wrap just a little bit. But they turned her down saying while I was still unconscious they had wrapped the bandage too tight, but when they took it off to fix it, my jaw slid right back out and had to be reset all over again. No Bueno.
When I got back upstairs my dad and boyfriend were waiting for me. Sean volunteered to stay with me for the night, because he’s just good like that. 🙂 It was honestly a much more rough night than I was anticipating. Worse than most times before. Although the ENTs had ordered pain medication for me, which has always been necessary afterwards…seeing as I had just had a mini “surgery”, the neurologists had taken the orders off and only let me get one dose of Tylenol the whole night. It was horrible.
Sean is a rockstar. He turned on 50 First Dates in an attempt to distract me. He had to continually pause it doing whatever he could to try to help the pain. I was hurting. I was sick to my stomach, probably because I hadn’t had anything in my system besides medications for the last 24 hours. I was scared I was going to throw up and send my jaw right back out of the socket. After calling my nurse in for help we were both equally as frustrated that the neurologist had taken all rescue medications out of my orders so the best solution my nurse could offer me was trying to eat saltines. And I’m still surprised how uncomfortable and bothersome my wrap was. After I got to take it off 24 hours later my neck was bleeding from how irritated it was. It was such a hard night.
Now, let me take a minute to get sappy…which I’m typically not. Sean is the funniest, kindest and best person. Without hesitation he is always there, willing to hang out in the hospital, stay up all night and sleep in the awful hospital recliners. Everyone deserves a Sean. 😊❤️
At the end of the day, I shouldn’t really complain about the minor bumps in the road. Although it took a minute for the neurologists to come around, the two teams did get the main goal accomplished, getting the jaw reset before the next day, pretty quickly. That was huge for obvious reasons, but also because that meant I only had to spend one night stuck in the hospital. Which is huge!! Back to those infusion nurses being awesome, the nurse I’d had the day before dropped by with a card and bracelets wishing me to feel better quickly.
We’re not exactly sure what brought the attack on this time. The weekend before my jaw had popped and sent that electric shock down my jaw line out of the blue, making my jaw sore for the week. But I had also just gotten my Dystonia Botox a few days before, we wonder if that triggered something for some reason. We won’t ever know for sure. It sucks that I have to start over with what I can eat and that drinking out of a straw is painful again. I’m bummed that I have to start my record of being attack free over. But I’m thankful and amazed that I did make it 10 months without a full blown attack. I’m lucky that we’ve found ways to make my chronic illness much more bearable. Any progress is appreciated and I’m still trying to find a “win” in each day…big or small. I’m still in pain everyday. I continue to fight these invisible illnesses everyday, as I will my whole life. But for right now I’m not just fighting them, I’m beating them.
If you made it to the end of the little book I just wrote, good for you! I appreciate it…and also need to get better at summarizing more. It feels good to post again 🙂
This summer has been good to me! Just some pictures for fun 🙂