No one ever wants to hear bad news. But after you’ve been sick for a long time, hearing the words “we found the issue” sure is reassuring. But what about all the other times when your results come back as “normal” or “base line” or “standard”?
For me, I know my body well enough after 13 years of living with the same illness, and I know when my “valves,” as I like to call them, shut on and off and when things are starting to block up. But I’ve had to go to the ER several times in the last few years after I’ve successfully passed partial blockages at home because the pain afterward concerned me greatly and could not be controlled.
So how do you handle times when you’ve felt ill for a while, and you know something is “off,” but test results come back only in safe range?
Sometimes, it’s best to get out your reading glasses and have your printer ink ready and in some cases, be ready to call all of the hospitals you’ve been admitted to so you can ask for your records, so you can do some research and be proactive.
For me, over the years, I’ve had to have my records printed out at several hospitals and have put the work in myself in order to help determine the cause of what might be going on. The trouble with my labs is that when I’m in crisis, they don’t show much, so it takes a caring, understanding and very determined doctor to run the correct labs to see whats actually going on that they can’t see.
If you feel like you’re being brushed off, hold a conversation with the Nurse or PA.
It might not feel like much, but it’s another person that can empathize with you and most times, they can physically tell what’s going on with you, because they see you more. I was admitted one time because one of my infusion nurses could tell something had drastically changed in my but my rapid blood panel came back “okay.” Soon after, she talked to the doctor and I was admitted for a week and needed surgery.
Surround yourself with people who will listen to you and if they don’t, find someone else! Don’t be afraid to explore the plenty of doctor fish in the sea! Asking for a second or third opinion brings a different set of eyes and most likely a different approach. Don’t ever be afraid to explore. Be afraid to settle.
It can be SO frustrating and heartbreaking not being able to figure out answers.
Anyone whose diagnosis took years to figure out can attest to that. You know your body best. No one ever wants to hear bad results when they are in the middle of testing – whether it’s just simple labs or an exploratory procedure or imaging studies.. but no one wants to hear “everything looks normal!” when things are clearly… not normal.