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Imagine for a moment being a Registered Nurse one day, then the next you think you have influenza, then, poof! You’re so ill that three and a half years later you still haven’t been back to work. It probably isn’t in your cards. Now come back to reality and look around. Keep looking in the back. Yes, that blonde girl waving, it’s me! I’m 32 years old and have been suffering from what we thought was autonomic neuropathy. But now have determined very recently that things are more complicated and serious than originally thought. It now has been determined that I have a central autonomic disorder and have perhaps taken a mitochondrial hit to the brainstem. There has been a lot of sympathetic and parasympathetic damage since 2014. There are many details that we don’t know and are starting the ‘hurry up & wait’ process again.

My quick, easy explanation for this is that the ‘fight or flight’ and ‘rest and digest’ portions of the nervous system are, basically, divorced. They don’t like speaking to each other anymore. When they do, well, let’s just say that communication isn’t their best quality. All of this ‘bickering’ back and forth automatically affects everything my body does.

In 2014, my blood pressures suddenly were over 200 systolic, with heart rates 130-150. Who could forget the beautiful flushing that would appear and make me look and feel like I had a horrible sunburn? This triggered a ten-month endocrinology workup. A referral was finally made to a larger regional facility. The doctor there immediately said, “this isn’t endocrine [related].” Ten months of waiting and wondering only to find out that this was neurological. As a Registered Nurse, I knew that I was past the precious, acute phase of illness and had transitioned to chronic.

We ended up seeing a neurologist at this regional facility twice. You could say that people skills weren’t a strong suit at the first visit. The second wasn’t far behind. At my initial consult, my husband wasn’t allowed in the room until we were done and going over recommendations. A physical exam was never done. I wasn’t allowed to go over my concerns, and then I got told, “there isn’t anything to do and I don’t know why you’re on my schedule.” When I asked for my husband to join me in the room, I was informed, “I’m not sure what the point is. I already told you everything. I don’t have anything different to say to him.” Hmm, I was always under the impression that was the EXACT time when you needed them. Our lives were already turned upside down.

I was at a point that I was nauseated so frequently that weight was falling off. The neurologist came up with a different medication to try and said, “good luck.” Me, on the other hand, already had done my research. Due to the onset after an illness, I really believed that it was an autoimmune process going on, despite negative antibody testing.

I brought up immunotherapies before the end of our first, cozy visit. An angry glare came my way. Apparently, it was taboo that the patient may know something about a disease.  I knew intravenous immunoglobulin (IVIG), plasmapheresis, and immunosuppression were treatments used with other patients with variable responses. The doctor gave in and said that if the medication failed to help the nausea, then high dose pulse IV steroids would be something we could try (because they were ‘cheaper’ than the other alternatives).  Although there were risks, honestly, I was at a point of desperation.

The status quo is a joke. Healthcare MUST be personalized for each patient. In this situation, doing my research gave us other options. We ended up having to do the steroids for a total of fourteen weeks as a bridge to oral immunosuppressants. Ultimately, we were forced to stop the oral medication because of side effects, but at least someone listened…a little.

Patients need to be informed of all the options that are available and may pertain to them. There needs to be a care coordinator at all medical facilities that can be doing disease counseling in person or over the phone. How are we supposed to create a climate of change? How are we supposed to empower patients so they are the leader of their own care? Patient involvement, period.

That day I didn’t make a huge difference, but I stood up to a doctor who was dead set against listening to anything I had to say. I took over the conversation and forced a discussion about options. Change starts with opportunities like these.

Small building blocks morph into larger ones. Self-advocacy shouldn’t have to happen like this. The culture of caring needs to be addressed at so many facilities. It is patients that are the reason why healthcare facilities exist. When it comes down to it, we are all the same, we are all human, and we breathe the same air.

I know the other side of this. All the documentation required for one patient in a 12-hour shift. Making sure physician orders had been carried out. Nurse to patient ratios that don’t take acuity into account. When I was working still, as much time was spent documenting to cover my hind end for liability, as it was to take care of my own patient laying in bed, terrified. My patient needed reassurance and the element of human touch, which goes farther than many medications. That element is disappearing. Patients need to be treated as more than, ‘pneumonia in 210.’ She’s a real person.

My experience in general with almost all medical facilities has demonstrated, time and time again, a need for more advocacy for patients. Telling the patient what to do, but never following up is a large portion of noncompliance and readmissions.

Two words: HUMANITY and CARING. Those words go a long way in healthcare. It won’t fix our problems. It makes the patient feel like they matter, because THEY DO!