I’ve been dreading today’s trip to the doctor for three days. Well, correction, not a doctor, but my nurse practitioner, who I’ve only met once before. And I have to say, I like the guy; he amazes me, with the exception that as near as I could tell he didn’t call up my specialists as he promised to on my last visit. Ah. And so it goes with my health issue drama.
I had planned to write up all my symptoms this weekend but I didn’t. The very thought of sitting down to do it depressed me. That and I was having an all weekend severe flare up. Hell, when I got up this morning I checked my e-mail and then just laid down. I wasn’t feeling super terrible, but I wasn’t feeling great and I was very depressed. America is the only first world country where you’d be forced to work when you feel like this.
So I worked. And since I was feeling better and able to multitask, I wrote up my symptoms which was easy enough to do as they’ve become like breathing to me. Since you have nothing bette to do besides read them (kidding), here’s what I wrote up and gave to my “Nurse Practitioner” today:
What is a flare?
Any combination of increased symptoms that make it more difficult to function normally and in extreme cases, make it completely impossible to function in a non-disabled fashion.
What constitutes a moderate flare?
A moderate flare makes it difficult to perform normal every day-to-day functions (i.e. bathing, making a meal, doing the dishes, driving, etc.). During a moderate flare I can “force” myself through a work day by taking notes, scheduling meetings strategically, and taking regular breaks including, when needed, laying down for around an hour.
What constitutes a severe or extreme flare?
An extreme flare makes it difficult to impossible to perform cognitively heavy tasks (i.e. tasks necessary for my employment [e.g. reading/writing, programming, solving even simple problems, using a computer in any meaningful fashion), social interactions [e.g. meetings], driving), etc. During an extreme flare I am barely be able to perform simple cognitive functions including but not limited to straight forward written or verbal communication or navigating three dimensional spaces in a meaningful way.
How often did I experience moderate and extreme flares prior to my July ER visit?
Prior to July I experience moderate flares one or more times a week and severe flares once or so a year.
How often do I experience moderate and extreme flares since my July ER visit?
I now experience moderate flares on nearly a daily basis (if they’re not ongoing from day to day) and severe flares about once a week.
What are the triggers and/or influencers of moderate to severe flare ups?
While in general the flare ups and presentation of symptoms seems random, there are some common triggers/influencers that may cause them to worsen:
- Sitting:
- Stomach is at an angle
- Pressure on the GI
- Pressure on the legs
- Standing:
- If locking legs too long
- Standing too fast
- (Sometimes) Exercise/excess physical exertion while I’m having a moderate flare up that’s trending towards a severe one
- Stress (i.e. work)
- Pressure on GI:
- From belt or bending
- Eating meals regularly; regular sized or large portioned meals (especially)
- Certain drinks, notably:
- Coffee
- Sugary drinks
- Certain types of alcohol (esp. fermented, i.e. beer)
- Poor sleep
Has anything helped? Of all of the things I’ve been prescribed in 2023 the only things that have had a noticeable impact are Combivent, Cromolyn, Prednisone. Combivent has helped my cough, phlegm discharge (from lungs), and overall bronchitis. The Cromolyn has, on a systematic level, “made the intolerable barely tolerable.” Of the three Prednisone has had the most notable effect, bringing my symptoms down to a level that I could function and feel (almost) “normal”.
That said and in general, most “tricks” I’ve picked up over the years are prophylactic in nature, that is, they lower the odds of moderate to severe flare ups but do not prevent them from occurring.
Following is a complete list of things that are beneficial or at the least prophylactic:
- Prednisone (~70% improvement overall)
- Cromolyn Sodium (~30% improvement overall, ~60% to headaches, ~70% to sinus discharge)
- Combivent Inhaler (~5% improvement overall, ~30% lungs)
- Fasting; keeping my GI clear and empty
- Regular exercise (helps lower likelihood of cardiovascular and lung symptoms)
- Solid Sleep (or more accurately, poor sleep will exacerbate most symptoms)
- Hard core pain meds (only thing that hits the pain)
- Laying on back with heat pad on my upper back/neck during day
The rest of this has terrible formatting so you’ll just have to fucking forgive the copy/paste to the blogosphere:
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