My Life. My Migraine.

I ordered shitty Chinese food, but the fortune makes me think the Chinese gods are trying to tell me something. Don't know what but something. Anyway, one thing that always is hard for me is this idea that I'm going to have plans or that somethings going to get done during x amount of free time. People are constantly asking "oh got any plans for the rest of the day" or "doing anything fun on your days off?" I've had two days off in a row. God bless. First thing yesterday morning I got up and went to check my car into the dealership to get work done. I didn't have my car back until mid-afternoon. Yet, it was surprising that I didn't then go grocery shopping. Today, I had physical therapy at 8 AM, followed by massage therapy at 10AM, and my groceries were ready to pick up right before noon. I have the whole rest of the day to do whatever my heart desires. But you see, two days in a row, I've gotten up much earlier than I woul...

Let's all take a moment to be very honest with ourselves. If we looked the way we felt 99% of the time none of us would look all too great. This isn't something that is specific to my condition. This is something anyone can deal with. Got arthritis? Got a UTI? Getting over a cold? No one is going to proudly display the dark circles under their eyes, and lots of makeup companies have perfected concealer to hide just that. But I'll put up with your looks. Your confused faces. Your attempted sympathetic "well I hope you feel better" as I rush away from work. Why? Because there's no way you can ever SEE the pain and the symptoms I'm experiencing. Sure my pupil is literally taking over the entire blue part of my eye... but hey I'm probably just stoned or something. I don't know how you'd be able to see that my body is saying hey if you don't get into a dark room right now, lay down, and try and consume some food I'm goin...

One day. One day the pharmaceutical industry will be dead. I do wish that day was today. As much as I'd like to go after each and every individuals job and credentials and licenses, that isn't actually feasible. So what even happened? Sunday June 17th: I put in a refill request to my local Walgreens. I had to physically pick up the phone to do so, as I needed to have the request processed through my new doctor... You know the one I've been waiting over 8 months to see. The pharmacist was very pleasant and said she'd process the request for me. Fast forward to mid-afternoon and I see an email on my phone regarding my refill. But not the refill I asked for. The pharmacist sent in a request for a different medication - one I am no longer using and one that this doctor had explicitly said to only use for emergencies but to stay clear of. So I call the pharmacy again and say hey y'all sent in the request for the wrong script. Same pharmacist. She apologi...

One whole day. I have this entire day, no commitments, no doctor or therapy appointments, I don't even need to go out and grab groceries. I had plans this evening. Canceled. Why? Because my "day off" doesn't get to be a day off. I've already almost punched in 40 hours this week, not including therapy and doctors appointments that stretched the days out longer. So now, I finally have a day where normal people would lay back and relax. Binge watch some Netflix. Grab food with friends. But chronic migraine doesn't allow that. I don't know what it is about this disease, but for some reason I can push through endless work days and appointments and accomplish a ton, but the second I have a day to myself, all the stabbing pain and fatigue crash down onto me. I didn't get home last night until after 10:30 because we had things to finish up at work. By the time I got home, I couldn't just collapse into bed, so I was up much later than nor...

Let me start off by saying and apologizing for pulling politics in to this post. This post is not intended to convey any political viewpoints only to address the way the media is using disabilities to get to further their political views and increase personal views on various stories. So with that said, let me just start with the politics that prompted this post. Here's the issue. Children are being kept in cages, separated from their families. That right there should absolutely be enough to stop you in your tracks and make you questions what the fuck is going on in our world. But no. A few weeks ago the headlines all read: Families Being Separated At The Border I guess that didn't get people as stirred up as the media wanted. So, soon it became Children Being Ripped Away From Families At The Border And shortly thereafter: Families Seeking Asylum Being Ripped Apart At The Border Now... here's the issue I have. This same exact story has been in circula...

Doctors aren't supposed to all have the same consensus when it comes to treatments and what's best and what not, hell, that's why we shop around looking for the perfect doctor... You know, the doctor who listens to the concerns you have, presents solutions that are flexible, spends time analyzing test results and information processed from printouts of apps we use at home. We want the doctor who doesn't just want to treat us but wants us to improve. We want the doctor that shares an end goal of reducing the amount of needed medication. We want the doctor that is open to exploring "alternative" treatment methods. But what happens when we start seeing therapists? Take my massage therapist. She's great. We always debrief prior to the appointment and go over how the week has been, how general life is going, and what areas to focus on during the session. She listens really well. If I'm in for my appointment but I'm in so much pain that a stan...

What if I told you there was no cure for what was plaguing you? Oh wait... if you've ever read any post before, you already have heard me say a million times that migraines have no cure. Now, what if I told you that my "office", although I finally acquired a desk, mostly consists of large piles of books and supplies scattered throughout the room and closet... I've lived here since March. Why is it all still on the floor most likely making permanent dents in the builders grade carpet? Because between paying for random trials of this and that to try and treat my migraines and spending time briefly without a job... bookcases don't come anywhere near the top of my list of things to up and spend money on. But this fact doesn't deter online know-it-alls with their cure all fitness and wellness and healthy this and that product lines from badgering members of the chronically ill community. They message you out of no where and act all polite. They are...

I saw this little notebook and it struck me. I can almost hear Robin Williams whispering "seize the day boys seize the day" I was looking for a notebook. A place to map out my day to day life to try and figure this all out on my own. If my doctors have run out of medication to give me that is approved by insurance, and therapies take a long time to see results, I might as well spend my days documenting everything in depth. Yes, I use Migraine Buddy everyday to track if I've taken medication or the maximum pain I feel and where that pain is located. But, this app doesn't allow me to see what works when. I mean lets be honest, I may have a migraine that lasts 100+ hours that hits a max pain level of an 8. But what's happening during those 100 hours? Did one pain med work, but only for a few hours? Was I almost feeling better but ate something or stayed up too late, and that caused the pain to return? So I've made my own "self help" journal...

All it took was one letter. Just two hours ago I was enjoying a great conversation with my new coworker. We were talking about food and crock pots and crazy roommates and what we planned to do with our lives. Just two hours ago I was describing my hopes and dreams as if they were just natural steps around this so called life I planned to live. I talked about paying off my loans and working a lot and spending time in Cuba and perhaps moving within the company to work on a more global scale. But then a customer walked in and my shift was over and I headed home. I don't really get mail. But today I got a thick envelope from my insurance company. Thicker than normal. My insurance decided that I'm not getting Botox. Cut my life into pieces... this is was. literally. my last resort. Three years ago I was asked if I would consider it. I said no. Then I had a migraine every day and it interrupted my whole life. Still I said no. I moved and in the months it took b...

Everything was fine. I was shocked. I've spent all week hoping and praying and betting that by the time today rolled around, I'd be once again writhing in pain, and I'd have to cancel my lunch plans. But I woke up and wasn't immediately hit with the urge to roll over. The fatigue went down to a manageable level. I wasn't nauseous as I cooked my breakfast and brewed my coffee. I didn't even have the urge to plug in my diffuser to keep symptoms at bay for just a bit longer. I plugged it in anyway, but I actually just got to enjoy the yummy lemon and rosemary aroma that filled my apartment. I wanted to have an early lunch, so that I wouldn't end up stuck in a super busy and loud restaurant during prime lunch time. So, lunch was scheduled for 11AM. I found the cutest little French restaurant in the heart of Tosa. Parking was a nightmare, but everything about this place made me forget about having to awkwardly back my tank into an extra narrow sp...

I spend all night tossing and turning, hoping that I'll find a magical new spot to rest my head where the throbbing pain isn't too bad. I wake up and I'm far from rested. I slept for 10 hours. So why do I feel like I could sleep for 10 more easily? I force myself to get up. Thankfully I have off today and have a very small list of things I want to accomplish, only one of which involves leaving my apartment. I brew my coffee. I mix lemon, rosemary, and peppermint essential oils and start diffusing them. I've found that this helps. I don't know why. This is meant to be an uplifting blend. Maybe uplift is all I need some mornings. Normal people spend their days off running errands, cooking, doing chores, meeting up with friends, spending time outside... gosh the list goes on and on. I shouldn't say normal people. I should say healthy people. Stigma Number 1: Chronically Ill means abnormal. Yes, it is true. Many times we refer to people without disabil...