I'm sure you know how it goes, similar to car problems. The issue persists until you take it to the mechanic, and then for some reason the problem seems to disappear, at least while it is with the diagnostician, only to reappear soon afterwards. I think our bodies work that way at times as well, at least mine does.
Next week, I have an appointment with my current gastroenterologist. There have been numerous times that a January appointment seemed like a lifetime away. My health has been through quite a bit the past few months. My body has been out of whack, symptoms have been unpredictable and crazy, multiple ER visits have occurred (and believe me, I avoid the ER like it's a plague), and a hospitalization for central line and bloodstream infection (bacteremia) was required. I had to have my PORT removed and currently have a PICC line placed in order to continue my IV hydration at home. Just yesterday, my Home Health nurse had me return to the ER once again, this time for an occlusion in my PICC line. In short, I have had plenty of situations where seeing or talking with my current GI about my condition may have been beneficial.
So what's the problem, right? I mean, now the appointment is just a few days away. I will have an opportunity to talk to her about everything that's been going on and get her insight.
Well, unfortunately, it's not that easy. Some of those issues are behind me now, so what's the point of continuing the conversation regarding them now? There is no "cure" for the continuous symptoms. My doctor did not observe or witness the strife that I was experiencing, has never witnessed one of my challenging times, and words just do not do justice at all. There's no way that I can possibly make her adequately understand what I have been through recently, or in the past 4 years, for that matter.
Realizing this, additional worries can arise, because how can I expect her to help me if I can't effectively convey to her the challenges that I face? During my appointments, I often "appear" stable or okay. In ways, I may be at the moment. The reason being, I hate taking chances at feeling too poorly away from the house. I take it easy days in advance and decrease my symptomatic risks by strictly avoiding drinking or tasting anything, as it may elicit an increase in symptoms. I mean, honestly, who wants to be extremely nauseated, heaving, or in pain at any time, but especially when on the highway or stuck in medical waiting rooms? I know that I don't want to.
The bad part is, being extra careful and avoiding symptoms, as much as I can possibly can control them, limits what my doctor actually sees, which in return can make it harder for her to understand and provide treatment. It can be counterproductive, for sure. However, if I allowed myself to have a more typical day, along with "normal" daily symptoms, I'd feel absolutely miserable and lend myself to vulnerabilities of being misunderstood as well.
So here I am, concerned about how my appointment next week will go. Will I be able to accurately communicate my health needs and concerns this time or will my concerns be misinterpreted? Fact is, unless you live it, there's no way you can completely empathize or comprehend the impact that being sick day after day has on one's quality of life.
The goal for me is to attempt to explain my chronic symptoms in a way that might help. Maybe we create a plan on what to do about my home hydration: whether to keep the PICC for awhile or try another PORT. Hopefully, this appointment will be productive and worthwhile.