A hang nail. A sprained ankle. An ear infection. Nasal congestion. Influenza A or B. There are literally thousands of different types of health issues that human beings could have. Some people are born with them; while others are acquired. Many health issues short term, while others are lifelong. Some conditions degenerative meaning symptoms get worse over course of one’s life. Others are not degenerative—the condition doesn’t get worse. Some issues have a simple fix; while others are very complex requiring a huge amount of medical interventions. Many conditions are curable; while others are unfortunately terminal. It’s likely that every single person has experienced some sort of health problem in their lifetime. It’s just part of life-people get sick and injuries are going to happen. Often, people who have disabilities experience multiple health related issues. Whether the disability is congenital or acquired, many people experience numerous medical problems during life.

“You sure know your body,” my mom said after leaving Urgent Care recently one Sunday. Admittedly, I feel like a little kid sharing this, but I somehow ended up with an ear infection of all things. In many previous journal entries, I’ve written about the ongoing medical issues I deal with. Theoretically, cerebral palsy is non-degenerative; however, due to the strain it causes on the body, we do age faster than the average person. For reasons we’ll never know, my body has taken a beating the last decade and a half or so. So much so that my parents often get frustrated when I tell them that I have another issue going on. I know that they see me as more of a hypochondriac in recent years, but I don’t blame them–it has been a lot.

When I feel the slightest ailment or change in my body, I always let people know about it right away. There are a couple reasons I do this. First and foremost, the slightest ailment or change in my body usually throws my muscle tone completely off making things take even longer for me to do. Second, if something were to happen where I was no longer able to communicate, I want to make sure people had a heads up about whatever was going on. That sounds very dramatic, but, in my circumstances, it’s about safety. An example being if I feel sick to my stomach before I go to bed, I always tell my mom so that if I text or call her in the middle of the night, she’ll know that I got sick and need help. Admittedly, I have to be careful with this one because it has backfired on me, but another reason why I tell my workers if I’m not feeling well is so that they can choose to glove up and wear a mask. It’s common courtesy to do that.

Another reason why I may seem hyper vigilant is because I have so many people who helping me with personal cares. Often, especially when I have nursing students or CNAs, workers notice a change or ailment on my body that I didn’t even realize. Of course, they make me aware of the issues which I’m grateful for, but then I’m obligated to do something about it. Most people ignore an ailment until it becomes bothersome; however, many times I can’t do that because I have people suggesting I do something about it.

After nine surgeries, multiple ER/Urgent Care visits, and numerous nights in the hospital in the last decade or so, I have a pretty keen sense of when I need to be seen by medical professionals. After five emergency gastrointestinal surgeries, I know the specific pain and when I have that, there is no messing around – I need to get to the emergency room right away. I also have a pretty good sense with other ailments too. I won’t go into specifics, but I’ve had dealt with quite a few other health issues in the last few years as well. For reasons beyond me, I have also been able to gauge the severity of those pretty accurately. I’m able to tell whether or not I need to be seen by a doctor or if I will be able to treat it with assistance from caregivers. If I need to be seen by a doctor, I’m able to differentiate between the need to go to the emergency room as opposed to going to Urgent Care or making an appointment at a regular doctor’s office. It differs from family to family, but I was brought up understanding that the emergency rooms are only meant for life-or-death circumstances. I’ve found myself in those circumstances too many times. Mainly because of gastrointestinal issues, but there have been a couple issues related to cerebral palsy that landed me in the in the emergency room. In most of these cases, doctors sent me there so I could get immediate tests for whatever symptom I was having.  Obviously, the symptoms were greatly impacting my life and couldn’t wait for appointments to open up or insurance pre-approvals.

I really try not to be overly dramatic about my health, but it’s hard not to be. Given I have to balance so many different factors, I’d rather be safe than sorry. My instincts have been right 99% of the time. While I don’t like being seen as overly dramatic sometimes, I’ve learned to trust my gut when it comes to my health. My uncanny instinct has saved my life more than once!

***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.