It is another Friday, and another Friday afternoon run to the hospital. My pseudomonas infection is greatly impeding my health. During my infectious disease appointment, my doctor tells me to go to the emergency department to get IV antibiotics and get admitted to the hospital to have some tests run.
I am praising God that despite many people in the waiting room, a security guard demands I get medical treatment and pushes me back to the triage area. I wait a while for a room in the emergency department to be ready for me, but eventually I am wheeled back to a tiny, shared emergency room. The chaos of several nurses, a respiratory therapist and a physician descends upon me. I am ask too many questions by too people. My head spins. I am grateful when the room clears, and I have space to curl up under the blankets. A respiratory therapist enters the room and gives me two rounds of albuterol through a nebulizer. When the treatments are finished she leaves.
About 30-45 minutes later, a nurse returns and starts an IV. An IV drip slowly infuses my body with an antibiotic. The nurse leaves. The nurse reappears an hour later. My first IV antibiotic is finished. I am then given a second antibiotic. The nurse scurries away to another emergency department bed. Very soon, I feel very unwell. I have this feeling of impending doom. My jaw begins to shake. My hand muscles start having very small spasms. I can't immediately put my finger to it, but something is wrong. A nurse from an adjacent bed walks in the room. I get the nurse's attention and mumble I am not feeling well and am having tremors. (I am shocked at how slurred my speech is.) The nurse tells me I was given an albuterol treatment, and this is just a side effect. I note the time and think, "I was given albuterol two hours ago. I wouldn't just suddenly develop symptoms now." Since my tongue feels thick, it is very difficult to speak. I remain silent and allow the nurse to disappear into the emergency department chaos.
In the next few minutes, my small, slow tremors develop into violent, uncontrollable shaking spells. My mouth is clamping shut. My hand muscles spasm tightly closed. My breathing is becoming labored. My heart is racing into the 140's. My rapid heart rate is causing my heart rate monitor to alarm. I do not have a call button or any other way to signal for a nurse. A half hour goes by. Finally a nurse checks in on me. I attempt to explain I am having a reaction. She shuffles off to find a doctor. More minutes pass. At last, a doctor and some resident doctors round at my bedside. My jaw is spasming so hard, I fight with all my energy to convey I think I am having a reaction to the antibiotic. The doctors talk. They try to discern if I am having an anaphylactic reaction. I try with all my might to convey that it is my muscles and not an anaphylactic reaction. The doctor orders a dose of Benadryl. I have to wait 15 minutes for the drug. The antibiotic is discontinued. Between the Benadryl and stopping the antibiotic, my symptoms lessen to about half the severity.
I endure another hour of uncontrollable shaking before I am able to convince the nurse to ask the doctor for more Benadryl. Another dose is given. My symptoms barely improve. I know the extent to which Benadryl will help my dystonia reaction has been exhausted. I desperately need benzodiazepines. I ask the nurse for more Benadryl, but I am told I have to wait another hour for any more drugs. My body is exhausted. Shaking and shaking and shaking for several hours has used up all my energy. I know if I do not do something soon, my body will go into a bad mitochondrial disease crash--seizures, stroke, heart attack, an anaphylactic reaction are all just a few heart beats away.
I suddenly remember I have a bottle of lorazepam (a benzodiazepine) in my backpack. I wonder, "Can I reach my bag? Do I have enough coordination to open my backpack, retrieve the bottle of pills and dispense one pill without spilling the tablets all over the emergency room floor?" I know I have no choice. I use every last ounce of energy to slide toward the end of my bed. I reach and reach and finally snag a corner of my backpack located on the back of my wheelchair. I am able to grasp a zipper pull and clumsily yank open my bag. My hands are violently shaking, but I manage to find my bottle of lorazepam. I hurriedly open the bottle without taking the bottle out of my bag. I am constantly watching the doorway to my room for any medical personnel. I quickly snatch up a tablet, close my pill bottle and zip up my bag. I pop the pill in my mouth, and instantly it dissolves. I take a small sip of water from a cup on my beside table. I wait for the drug to take effect.
Twenty minutes pass. I am so relieved my tremors are subsiding. A technician from radiology appears at my bedside. He wants to take me down to have a CT scan. I am grateful and praising God I took the pill when I did. Otherwise, there would have been absolutely no way I could have remained still for the CT scan. By the time I get to CT and am transferred to the CT scan table, another ten minutes have passed, and my tremors have all but disappeared. On my way back to my emergency department room, my nurse meets my bed in the hallway and says, "See, you are all better. There's no need for any more medicine." I nearly start crying and again praise God. There is no way I could have waited any longer for symptom relief. No one seems to understand how energy draining it is to have a dystonia attack. No one understands how fast relief from the uncontrollable shaking is essential from preventing any further complications.
When I return to my emergency room, I wish the lorazepam would make me fall asleep. I feel so ashamed of having a reaction. I just want to curl up under the blankets and become invisible. I know this reaction will be noted on my chart. I know for the rest of my emergency department visit and subsequent hospitalization, this reaction will be mentioned. I do not want to relive this experience. I do not want to be reminded of my body's hypersensitivity to drugs and how complicated my medical case is. I push these thoughts aside and thank God I made it through another dystonia episode. I thank God my symptoms have resolved. I thank God I had a bottle of lorazepam in my backpack. This disease can be such a challenge. I am grateful God helps me through each crisis. I rest my head on a pillow and wait for a bed to open up in the medical unit upstairs.
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