It's been a minute friends. I have tried to sit down and write several posts but there were just none I was passionate about enough to finish. I'm a bag of mixed emotions right now, and for good reason. I had two wonderful weeks of no issues. There was the occasional ocular migraine, or upset stomach after eating but I went two whole weeks without a hospital admission, without having to use an epi pen, without being stuck at home. And they were a great two weeks, probably one of the best few weeks I've had in over a year. I want to go back to those two weeks.
Last Sunday I went to church and then went to Subway right after. Subway has always been a safe food for me. I get the same thing every time and never have any issues with it. A few bites in my throat started to feel scratchy and my whole body got hot and itchy. I remember trying to take benadryl but must have slipped into unconsciousness because I came to in the ambulance with the medics trying to start an IV and a needle being stabbed into my arm with more benadryl. They had already given me epi in the shoulder and my oxygen levels came up slowly. It's never a good thing when the fire crew (who has never ran on you) knows who you are because other crews talk about you at the station. They knew not to give me anything else until I woke up and could tell them what I can and cannot have. My body cooperated the rest of the ride. In the ER I had another reaction and another the ER doc said "it's not possible to have that many rebounds" I know better. I've experienced the truth of multiple anaphylactic reactions one right after another. They decided to admit me. The attending physician came downstairs and told me there was nothing else they could do for me.. There is they just refuse to consult my specialist. I decided to be discharged that night because there was nothing beneficial for me there if my doctor wasn't willing to actually help me.
The very next day I started feeling short of breath and it got extremely hard to swallow. I hadn't eaten anything that day so I don't know what could have possibly triggered it, but either way it was happening. I was home alone so I tried to call my mom my phone must not have been working because I tried to call her and my dad and all I got was "Verizon can't complete your call please try again later" so I pushed the "help" button on our GPS app. I don't know what happened after that. I don't know how 911 was called, because it sure wasn't me, but they were. They arrived and I was face first on the floor. Yes, I was at least breathing more than 3 times a minute this time. They loaded me in to the ambulance. A few minutes later the medic looked at me and said "this isn't anxiety is it?" I nodded my head no. He looked at my oxygen level which was now dipping into the 70's. He gave me a round of epi in the shoulder and 50mg of benadryl through my PICC line. I was struggling to breathe my breathing became so labored that I was starting to zone out. He started bagging me, which is basically him breathing for me, and they turned on the lights and sirens. When I got to the ER they immediately decided to admit me.
9 hours later I was still in the ER, they told me it would be 34 hours before they could get me a bed upstairs. I gave up. I had nothing left to give. I was extremely itchy since the first benadryl wore off so I asked for more. My entire body was red and splotchy and there were hives on my chest. The nurse said she'd be right back with some and I didn't see her for another hour and a half. I decided to sign AMA, against medical advice, and have a friend drive me home. My mind was, and still kind of is, in a dark place. There are still people out there who thinks this is just anxiety or that I'm doing this for attention. That there is no way a 21 year old could be this sick. I can tell you every time I go into anaphylaxis I have to make the decision of staying and fighting or closing my eyes and letting the darkness consume me. I honestly think that's why I've been found unconscious so many times this week. Is I've given up the fight. I don't run to my epi anymore, if I get to it I get to it. I don't stay at home where it's safe anymore and I certainly don't wear my mask outside like I should. I've stopped fighting. I hate saying that out loud but it's true.
I had a doctor's appointment yesterday to go over lab work. I came back positive for the gene mutation that has been found to cause MCAS, and one of my prostoglandin reports came back 4x over the normal limit. The specialist my doctor was consulting in New York says it's time to switch treatment options. Neither of which I'm thrilled about but one option has an incredible success rate in decreasing anaphylactic reactions from multiple times a week to once every few months. But it's still a newer treatment option in the medical world and all of my doctors are pretty nervous to start it. My take on it is there's no way this option could make anything any worse. Why not just try it? I want nothing more than to go back to school right now. Not even work, I just want to go back to school. Where I can meet other people my own age but I can't right now. I have a dismal quality of life right now. Wouldn't we want to try everything we can to fix that? To make it so I'm not in the hospital multiple times a week? I'm just so frustrated. Doctors are giving up on me, friends are giving up on me, I'm giving up on me.
So I'm praying for strength and peace. Because no matter how tired I am or frustrated I am God's got it all planned out. He'll put me in the right hands and he'll get this figured out. "
Tell everyone who is discouraged, be strong and don't be afraid! God is coming to your rescue." -Isaiah 35:4
With Love,
Elizabeth <3
The hike itself wasn't difficult. There were a few spots where you have to go up a rock "staircase" or two. But other than that it was mostly flat and led to where there would have been a waterfall (if we actually got precipitation in Las Vegas). It was super fun climbing around and watching kids do the hike as well. At one point, on our way back to the car, three kids came around the corner and gasped "We heard you and thought you were rattlesnakes!" Yes child; I took hear voices and footsteps and think rattlesnakes. It became a joke and it inspired these fantastic pictures!
