I cannot take the credit for it, since I thought it was a ridiculous idea when it was first suggested to me to keep one.
My mother, on the other hand and ever the teacher, thought it imperative that notes be kept.
After a while I saw the value in it. The enormous value.
I have two appointments coming up in which I need to reflect on specific episodes from my last appointment with each specialist - which is usually a year's time.
Part of the problem with me is that I try to live day by day. When I wake up, I allow myself time to assess exactly how my body is functioning - I essentially scan every one of my systems. I mentally note headaches, nausea, swelling, digestion, sleepiness, heart palpitations, energy, alertness, joint pain, intestinal pain, muscle weakness, dizziness/lightheadedness, concentration, and probably twenty more daily symptoms.
I am, more or less, figuring out how much battery life I have for the day and for any appointments/events coming up in the following days.
Then I make a plan for what I can accomplish.
If I have a super low battery, my plan would likely be to rest and read or lie in bed for the most part of the day, perhaps cooking dinner or trying to fold some laundry. If my batter is fully charged (which is basically at 30% when compared to healthy individuals), then I can maybe go for a walk with the dogs or run one or two errands with my cane. OR I could do something big like go shopping in my wheelchair or go for a dinner date with my husband.
So, for these appointments, since I live day to day, I cannot remember an entire year's worth of episodes and bad days. I specifically avoid tallying them up - it can become quite depressing. So I go through my notebook; my medical log.
The unfortunate part about re-reading what has happened over the last year is that most of what I write in this notebook is all medical. Every single day. Bad episodes and crash days, migraines and swelling episodes, trips to emergency, surgeries, terrifying laryngeal swells that make it difficult to breathe, medications, reactions, side effects, etc... It is a frank and concise record of all the bad. I try to include the good stuff too, but they are usually written because the 'good stuff' is often what triggers the bad stuff.
Frankly, it is bonkers.
Here is a small tidbit (summarized, of course) of what my notebook looks like during one random week:
June 9, 2019
• Decent sleep. Nightmares. One auditory hallucination. Wide awake after that, listened to podcast.
• Went to a friend's. Could not drive. Lasted two hours, sitting, before I was sobbing from pain and had to leave. Exhaustion and lots of hip pain. Zero energy.
• Low appetite.
• Got home and took [medication]. Decreased the pain but also mental function - feeling frustrated.
June 10, 2019
• Woke up with a brutal migraine. Light and sound sensitivity.
• Body exhausted.
• Shooting pains in lower back and out to my hips.
• Can't seem to fully wake up.
• Crashed in the afternoon from 4pm until 7pm.
June 11, 2019
• Actually slept really well!
• Felt more like myself today.
• Received a call from neurology for an appointment this week.
• HAE Injection
June 12, 2019
• Throat swelling - personal stress
• Migraine
• Nausea and two vomiting fits
• Loopy, rocking back and forth, could not kick the nausea.
• Felt sleepy all day but stayed awake and then insomnia kicked in in the evening.
June 13, 2019
• Woke up nauseated.
• Frustrated with new medication regimen, body is having trouble adjusting and I am having adverse reactions to one med.
• Appointment with Neurologist
- wants to try me on a new prophylactic medication to help with the migraines.
- should not do cortisone injections anymore for AS since it triggers constant migraines. Try to avoid oral prednisone when possible as well. Might not be dangerous, but isn't positive.
- sleep deprivation is a huge trigger.
- will see me in 6 months.
June 14, 2019
• Busy day. Did some singing - Rj had to help. Pain is really high and I did NOT sleep well.
• Managed a SHOWER today! Really nauseated afterwards and some dry heaving but no solid vomit. :)
• Had to make a long drive today. By the time I reached my destination (2 hours), I was having severe intestinal bleeding. Bright red blood, couple tbsp every half an hour or so.
• HAE Injection
June 15, 2019
• Okay sleep. Trouble falling asleep. Lots of bathroom breaks. Lots of blood.
• Headache in the am.
• Throat tightness. Bad body swelling. Took additional HAE injection.
• Shoulder blades feel like they are grinding. Can barely stand up straight. Nauseated. Difficult to twist or move. Used muscle creams to numb my muscles.
• A little less intestinal bleeding today.
• Headache turned into a full-blown migraine.
• Have hives on my face and neck. New medication from neurologist?
June 16, 2019
• Had an okay sleep. Too painful to find a comfortable position until 5am, then was so tired I finally passed out.
• Everything is sore today. Zero energy. Feel a major crash coming - likely tomorrow or Tuesday.
June 17, 2019
• Super sore today. Muscles, joints, stomach cramping, headaches, nausea, fatigued.
• Spent 90% of my day in bed, resting. Had to stretch and reposition often, but could barely leave the bedroom to eat.
• Painfully swollen - body swelling.
So there is a bit over a week in the life, etc... etc...
The week above is a normal week. I would never even remember that I had any specific migraines, swelling episodes, or a Crohn's flare-up because it was not anything out of the ordinary. The episodes I do remember usually involve ambulance trips, trips to the ER, hospital stays, or huge life events. So I need this log to remind me of how often certain episodes are occurring so I can give that clear picture to my physicians. Otherwise I would gloss over the year with estimated (and incorrect) guesses.
You would not believe what is in these notebooks. Honestly. It looks absolutely absurd. Even when I read these books, if I look at it as objectively as I can, it makes me wonder how anyone can have even a fraction of a normal life with everything else going on. It looks irrevocably sad.
And yet, I wake up happy nearly every single day....
I am one of the lucky ones.
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