Okay, so….Today’s blog post is coming to you late again this week. The tardiness is due to daily stressors, Crohn’s issues and some family drama. Go figure. This week has been time wasted, with nothing but migraines, onesies, wrong appointments, you know, the usual.
Friday after my infusion, I posted Remicade Day #2 right at midnight, and I was struck with the worst migraine of my life.
Now, this migraine was so bad that I was awake and hurting until around 5 am on Saturday. It was so bad that I called the emergency room nurse at the VA around 3 am and so bad that I woke Philip up in the middle of the night a few times, me contemplating going to the emergency room because this migraine would not stop.
I had already taken 2 of my Fioricet, with my nightly Nortriptyline, and I even took 2 Tylenol as a booster to try to will the pain away.
I sat in the dark with my eye mask on, my earplugs in, and I tossed and turned and I cried my eyes out on the couch, as I held and squeezed my skull and thought about cutting my eyes out to relieve some of the pain.
I was restless. I couldn’t sit still to save my life. If I was moving or walking in circles around my living room and kitchen, then there was at least that distraction to take a tiny bit of pain away. I chugged water in case I was dehydrated and I sipped a soda in case my body needed the caffeine. Nothing seemed to help.
For my migraines, I see lights, I see spots like little fireflies in my vision, and I get so disoriented that I am almost blind, in addition to my skull throbbing. It is kind of like the place you go where you are almost blacking out, but you know you’re passing out, fading into that darkness? I stay there during a migraine.
My left side of my head aches with every move, every sound, every light, and thought. My head and left eye pounds with agony to the point I want to scream at the top of my lungs, even though I know it won’t help.
So, I went through the house, removing EVERY light possible, because light makes my migraines so much worse. Coffee pot clock glowing? Unplug it. Scented candle with a light in the kitchen glaring at me? Unplug it. The plethora of night lights throughout my house, the electric candle in the office/bathroom, the PlayStation light, the microwave clock, kill it all. All lights had to be shut off immediately.
When I broke down and finally called the ER, the nurse suggested coming in for another fun visit. Considering I was feverish and having such a bad migraine, I didn’t know if it was Remicade induced or what.
I told her I would think about coming in because I knew it’d be hours of waiting and explaining and talking, I knew the lights would be extremely bright there, and I still had to wake Philip first, it was 3 am at that point and he fast asleep.
We didn’t end up going to the ER, and I sat on the couch crying until I suppose my body was so exhausted it gave up. I finally fell asleep on the couch around 5ish, the last time I remembered seeing on the clock.
I was up again at 10, another beginning to a tired weekend filled with nothing but issues and migraines. The next image is my face on Saturday morning. I was tired. I was irritable. I was trying not to get another migraine and I was mad about my lack of sleep and pain I had endured all evening.
Since the infusion I have taken 2 Fioricet daily, my left eye and auras keep bothering me, so I am trying to keep the pains under control. I do not want a repeat of Friday night. I refilled my pill organizer, how exciting…
Monday, I completed week 2 of 5 of my current Journalism course, in between scheduling doctors and dentist appointments, and rescheduling a few visits after the new year. Homework took up the majority of my day and night, and I didn’t finish that until after midnight.
I was actually scheduled for a Mental Health Therapy session on Monday, but homework took over, and I rescheduled for Tuesday morning Instead.
Tuesday, the Mental Health appointment went as well as expected. I get to vent for an hour, I gain some feedback, we discuss my past and my future, and we planned our treatment course of action for the next few visits. There are no major details to tell, other than the treatment will bring up all of my problems, traumas, and memories, so I am not looking forward to that.
After Mental Health, I had my General Surgery consultation scheduled for my pleurisy/nerve pain in my right side-boob area, since I had the mammogram and ultrasound done the week prior.
Well, get this… I went to the appointment but I did not see anyone other than the receptionist. The Veterans Choice Program had me scheduled for another ultrasound, and they did not send paperwork for me to see the surgeon.
So, in reality, I got to go to this appointment just to meet and greet their front desk lady. I walked away livid because this was not once they had messed up paperwork, but twice. And not just twice, but twice in less than a week that the Veterans Choice Program had scheduled appointments and messed them up, too. You better believe that I immediately started calling them to give them a piece of my mind and to try to fix their miscommunication. What a waste of time.
When I called the Veterans Choice Program, they had no idea what I was talking about. I had to call Triwest and speak to a bunch of idiots who kept trying to get me another ultrasound scheduled, even when I kept telling them I just had one done, and the smashogram.
Once I got things under control with them, I think, they told me they would contact me to reschedule this appointment. This means that I get to live with the breast pain until scheduling calls me to reschedule this consult. Like, really? They schedule the appointment in the first place, so I can’t imagine why they’d be messing this stuff up, the stuff they are in charge of. What a waste of time!
Side note: That night we watched ‘Bad Moms’, FYI: it is WAY funnier than we expected.
Wednesday and Thursday were spent in my new onesie’s, I now have 2 for myself and 2 for Philip, I’m obsessed!
These few days were spent writing and trying not to think too much, and each night was normal for me, up and down with migraines and bowel issues, never feeling rested or any better. Now, instead of calling the issues ‘office visits’, I’ve been referring to them as ‘massacres’. I need not explain why…
But on a positive note, this morning The Mighty site shared one of my previous writings again, by posting ‘But You Don’t Look Sick’. — Ya know, I’m just scrolling through Facebook when all of a sudden, I see my own face! It shocks me every time, like ‘Hey!! I know that person!’ I am beyond grateful for the support.
I have no doctor visits this upcoming week, as everyone prepares for the holiday season, and I get to look forward to making (and eating) tons of sweets! You can see this week was another 7 days wasted, but we are still hopeful for change.
With only 2 weeks left until the New Year, it is bittersweet but also kind of depressing, too. I am nowhere near where I wanted to be for 2017, my illness has almost taken and wasted another week, another month, another year, and I have no certainty that there is any end in sight…I suppose we will see. 2017 Remission sounds more than nice.
Here’s to another week ahead! It Could Be Worse.
Thank you for reading, and for keeping up with My Crohn’s Journey.
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And as always, any information you’d like to offer up about Remicade infusions or any of my struggles and issues, I have open ears and I’ll happily take any tips you have!
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