I’m pretty sure this is why Doctors decide to go into the field of Neurology or Neurosurgery, they are legit Puzzle-Junkies. Why else would you dedicate your life’s work to a field filled with so many unknowns? Thank God they did or else I’d really be in a pickle. Changing the dosage of the meds I was already on had no effect on my headaches or vision. In fact, both were becoming worse over the last several days. I had an episode where it felt like someone was stabbing me in the right front part of my head followed by my arms feeling like they were on fire, then going completely numb. This shook me pretty badly, and with all things considered, my doctor had me come straight back up to Denver. I tried to work out a phone-appointment but it wouldn’t work, as he had to run certain tests, check out how my eyes were working, and with the brain, you really never know what you are going to find-he didn’t want to miss a thing. Well since it was incredibly last minute and the busiest week of the summer, I headed up on my own (I know, I know). The drive was great and uneventful for the first half. My vision is blurry, and crazy, but I’d like to put everyone’s worries to rest. As of now, I’ve passed their drivers tests and am cleared to drive. That might change pretty soon but for right now, it’s ok. I avoid driving when I can, and living downtown has been so helpful as I can walk almost everywhere, but I only ever drive when I know it’s safe and I feel completely comfortable, so don’t worry! Right after I passed through FairPlay and into the last mountain pass before the city, my fancy smarter-than-me car let me know my tire was loosing pressure and I needed to fill it up soon. I sighed and thought Of course. I made it to a little mechanic shop in Bailey and by then my tire pressure had dropped to 10psi out of 38 (AHH). The gentleman there patched the tire for me but let me know I needed new ones immediately as the tread was separating from he actual tire (I don’t know what that means). So off to Denver I went, hoping to just make it to my appointment at this point. Right when I got into the city, my car let me know that tire was slowly leaking again… as well as the other front tire. I had about 15 minutes to get to the south side of Denver so I prayed the whole way that I would just make it to the appointment, and I could deal with these tires after.
I made it! The appointment was a hard one. My Doctor could tell this has started to get to me, and I can tell this is equally as frustrating for them. He also could tell things were getting worse with my eyes and with the pressure around my brain. He consulted with my Neurosurgeon who was thankfully in the office that day and they came up with two options. A) Admit me immediately, start me on steroids to stop the swelling in my brain, and I would stay in the hospital under observation until we have figured this out-which could be a while-OR, B) Stop the medication I am on immediately, as it could be aggravating things and causing my brain to swell even more, and start me on a course of steroids to reduce swelling in my brain, followed by a new medication to control ICP. He looked at me and asked, “Do you want to be admitted?” Obvious answer, NO. But as that was about to leave my mouth I realized I really need help. I’m desperate at this point, and I’m wearing down. I looked at him and said, “I want to get better. If you think I need to be admitted to do so, than admit me. If you think its safe to try one or two more things at home, let me try them.” He thought it over and decided on letting me try the at-home route (yay!!) But no more solo trips to Denver (agreed). It was also a hard appointment because I hate the part of me that is feeling completely defeated by this illness. He asked me how life is at home. I almost cried when I said, “It’s gorgeous and I want to live it. My kids need a mom who doesn’t just survive, but who lives.” It’s exasperating to try and act as well as you’re supposed to or as well as you look when everything in your body is going hay-wire. It’s like someone stuck me in one of those crazy mirror mazes, turned all the lights off, then told someone else to guide me through it. Someone who is sitting on the sidelines, can’t see where I’m at, can’t feel what I’m feeling, but is supposed to figure it out… somehow. (Sorry, my metaphors sometimes go down a rabbit hole only I actually understand.) He’s got his work cut out for him, that’s for sure. I’m aware that sometimes this illness has no cure, sometimes people suffer partial or complete blindness, constant headaches and migraines, personality changes, memory loss, forgetfulness, vertigo, and the list goes on. It’s terrifying to think about, but I know we still have time to try and fix this. Going over these feelings with the Doc helped me a bit, helped me understand I’m not the only person who goes through these feelings when dealing with “crazy brain syndrome” (My name not his).
So here we go, diving into a five day course of steroids which will most likely make me a sobbing rage monster (sorry fam) then onto a new medication which could take up to a month or two to take effect. The appointment lasted almost two hours instead of 30 minutes, and I knew I needed tires before I drove home. I found a place pretty close to the hospital and made it there about 6 minutes before they were going to close. Thanks to my new friend Randy at Discount Tires, they stayed late and replaced all my tires! By then it was about 7pm and all I had eaten was coffee (doesn’t count, I know) So I made the call to hop up to Fort Collins and get some sleep before heading home in the morning. I don’t even know how many times I’ve bummed a bed from my friends up there, but they have never, not once, let me down and I am incredibly grateful for it. They always make us feel welcome and wanted and that goes further than you might ever know when you find yourself in these kinds of positions over and over again. (Thank you guys, love you to the moon and back).
Right on cue, headaches woke me up bright and early so I got ready and headed back home. Somewhere on the far side of FairPlay I was in a line of cars cruising at about 75mph making great time when we popped over a hill and traffic was at a complete stop. I slammed on my brakes as did everyone in front of me, and out of habit, looked in my rear-view mirror to see who was following me, and if they would do the same. My stomach sank in 0.4 second as I saw the huge semi barreling over the hill, slam on his breaks, swerve, and shoot off the road, missing me by a few feet. We all pulled off and made sure he was ok, which he was. We saw what stopped traffic: A semi who didn’t pull all the way off the road to do who knows what, even though a pull out was 5 feet in front of him. The truck driver of the semi behind me pulled his truck back on the road, up to the other truck who was taking a hint that this was not the greatest spot to take a break and pulling off, and had a few choice words for him. I left at that point, glad everyone was ok, and glad the driver was learning road etiquette (even if it was the hard way). I looked back to where the Semi went off the road. It was one of the only flat, grassy spots along HWY 285. Almost anywhere else on this entire drive would have proved disastrous for the driver. I’m thankful he was ok, thought fast, and avoided squishing me like a bug. And I’m really thankful I don’t ever have to drive a Semi… I made it back to Pagosa in time to catch the tail end of my parents grand opening of the Beehive Home, grabbed my new meds, (way too many prescriptions to be walking around with honestly) and met Blake for coffee. And now life has resumed it’s “normal” course here in this gorgeous mountain town. I’m heading back up in two weeks to see the Neuro Ophthalmologist and my Neurologist. Hopefully I’ll have good news to report and my brain will finally be through with this endless tantrum it’s throwing!