Nurses: The Real Superheroes
I’d always wanted to be a nurse. Most of my life had been spent in hospital since the age of ten. Because I am such a frequent flier, I knew that what really made the difference in the care you receive at the hospital is the nurses. When my symptoms flared up in the hospital, it was the nurse who came in with the pain meds and the heating pad, and the soothing words.
I’m Cut Out to Be A Nurse
School has been important to me my whole life, and I’d thrown myself into my studying full force. I earned a 4.0 GPA at the community college. My perfect GPA had secured me a $40,000 scholarship to Elms College. l’d gotten A’s in all of the classes and clinicals that I’d been able to attend at Elms. Academically, emotionally, and clinically I was totally cut out to be a nurse.
Although I was trying as hard as possible to sail easily through nursing school, the waters were turbulent. My multiple hospitalizations and increased symptoms of unwellness alone was enough to make nursing school difficult to stay on top of.
My Diseases and Symptoms are in the Way Again
Add to that frequent doctor’s appointments with multiple specialists, then you have a problem. It prevented me from moving from sophomore to junior year without repeating multiple classes and clinicals that I was absent from. Luckily for me, the disability department made it possible for me to do those classes over and my graduation would only be planned to be delayed a year and a half.
The problem was, that new symptoms were developing every day. Now I had a laundry list of medical issues I was dealing with:
- Gastroparesis
- Type Two diabetes (that eventually disappeared as the brain tumor surgery lowerd my cortisol levels and I weaned off the prednisone taper
- low blood pressure
- rapid heart rate
- multiple arryhtmias
- fainting spells
- hypothyroid
- diabetes insipidus
- repeat episodes of abnormal electrolyte levels
- allergic reactions to everything
- asthma
- neurogenic bladder
- anemia
- New symptoms
Even More New Symptoms
I slowly developed more and more symptoms of chronic pain, in addition to my abdominal pain. My hands, feet, and lower legs developed numbness and tingling. Nobody could explain why that was happening. My new adult primary care doctor, Dr. Beaker, did an EMG and nerve conduction test. It came back with some abnormalities but didn’t really fit any specific diagnosis.
I was also developing other symptoms like worsening headaches and shortness of breath, those symptoms were only partially relieved with my asthma inhalers.
Dr. Beaker prescribed a nebulizer. It also only partially relieved my breathing difficulties and low oxygen. No one could explain that either.
They did a chest x-ray and it showed low lung volumes and something called atelectasis (where the little air sacs at the bottom of the lung responsible for exchanging air, are collapsed) in my left lung. The x-ray also showed a raised left diaphragm. Dr. Beaker figured I must have pneumonia because of the atelectasis. She put me on antibiotics, but never re-did the chest x-ray after I finished the ten-day course of Azithromycin. So that was the end of that.
Having All My Symptoms Ignored
My white blood cell count was now chronically low in addition to my red blood cell count. They thought it was due to one of my medications. Even after switching the medication, my blood counts remained very low. They weren’t that concerned about it because it wasn’t causing any physical symptoms.
My pupils were constantly dilated. I could be out on the sunniest brightest day and my pupils would be huge instead of constricted. Bright lights would hurt my eyes. My heart rate was was constantly over the speed limit. However when I stood up it was often as fast as 160 beats per minute. All the doctors were initially alarmed by my rapid heart beat. They ordered multiple EKGs. What was weird was that they came back as my baseline arrhythmias, just with more tachycardia.
These Symptoms Are Far From My Baseline
“It’s your baseline,” they told me.
I was always too hot or too cold, but I noticed that I never sweated anymore. This again was attributed as my normal. It seemed weird to me, but no further explanation was explored.
My constipation got so bad that I was only going to the bathroom once a week. The only reason I ever went was because I was on three different powerful laxatives. On top of the laxatives I had to occasionally use bowel preps meant for colonoscopies as well. Because I had gastroparesis, they said it was nothing to worry about.
“There’s nothing else we can do anyway,” the doctors would tell me. The NJ tube feedings were making me vomit profuse amounts of bile, and leaving me constantly nauseated. We had to lower my tube feeding rate from 50 ml per hour to 40 ml per hour.
Getting Even More Horrifying Symptoms Dismissed
In the two years after my diagnosis with neurogenic bladder, a horrifying new symptom emerged. I had started having seizures where I would smell blood and then have part of my body convulsing while I watched in horror, unable to do anything. My mom insisted I was looking for attention and brought her judgment up to the doctors who agreed it was probably just that.
A few months after those seizures started, I had an episode where I smelled blood, the shapes in the room took on fuzzy borders, and then I blacked out. When I woke up, my mom was beside me, I ached all over, and I was fighting to stay conscious.
This time my mom called 911, as she was quite alarmed by the violent convulsions I had experienced while unconscious and knew I couldn’t have faked this. The ER did multiple tests as I lay there so exhausted and weak I could barely stay conscious.
Not Just Psychogenic Seizures
One of the blood tests indicated that I had high levels of prolactin consistent with someone who had just had a grand mal seizure. I was admitted for several days. They performed multiple tests that came back normal. On the last day I was there they performed an EEG which didn’t show any seizures.
Despite the fact that I simply hadn’t been having seizures at the moment the test had been performed, and that there were still abnormalities in the EEG, they decided I didn’t have anything wrong with me. Instead, they told me how healthy I looked, and diagnosed me with psychogenic pseudoseizures that were caused by mental illness.
These are All Symptoms of Dysautonomia
All of these worsening symptoms were ignored by my doctors because they couldn’t find explanations for them. Now that they thought the seizures were psychosomatic, they thought everything else was as well.
Dr. Metta tried to advocate for me as he knew they were symptoms of worsening dysautonomia, and he wanted my dysautonomia identified so that I could be appropriately treated, but as my new adult primary care doctor put it, “he’s only a urologist’.
The dysautonomia diagnosis got put on the back burner as my depression and anxiety worsened which only served to further prove to the doctors that everything was all in my head.
Mental Illness is Not a Vaccine for Physiological Illness
Anybody who has suffered from both mental illness and physical illness simultaneously can tell you that getting your physical concerns validated when you’re mentally ill is near impossible. As was happening in my case, everyone wants to pin any physical concerns on anxiety, depression, or attention-seeking. Even when you have been diagnosed with a physical illness, everyone wants to chalk up any new concerns as well as validated medical conditions, to the mental illness.
The more I ran into this, the more disturbed I became. Why was no one able to see that people with mental illness can get sick too? We’re not immune somehow by reason of our psychological disorders
Getting my NJ Tube Pulled Because “You Don’t Need it”
Things got even worse In the spring of 2014 I was 23 years old, and almost done with my junior year of nursing school. My NJ tube got clogged and when I went to the ER they couldn’t; unclog it so they decided to pull it and not place a new one.
Because I was constantly complaining about physical health problems that could not be explained they had stopped believing me about everything.
It didn’t matter that I’d had; a gastric emptying study and endoscopy showing gastroparesis, a brain tumor physically removed from my head resulting in lower cortisol levels immediately, bloodwork showing diabetes insipidus and other electrolyte imbalances beyond just high sodium, vital signs consistently showing low blood pressure, low oxygen, and high heart rate, EKGs showing arrhythmias and abnormalities, witnessed profuse vomiting and dry heaving, X-rays showing severe constipation, and documented difficulty maintaining my weight.
Can’t Find the Source of the Symptoms? You have a Conversion Disorder
Once again I found myself diagnosed with an eating disorder and a conversion disorder. No doctor would do anything major for me. Despite the disappointing reactions, I continued going to my regular doctors, hoping they would eventually wake up to the fact that something was wrong with me, and treat me accordingly.
As spring of 2014 continued on, I continued to watch my weight plummet. Exhaustion seeped through every pore of me. My body felt drained all of the time with a really high heart rate and low blood pressure that dropped even lower when I sat or stood up. My other symptoms were worsening as well.
Dr. Beaker went as far as prescribing me low-dose oxycodone tablets, but when those weren’t enough to alleviate the pain she decided that the pain was all in my head anyway. My only saving grace was that she had just barely enough concern to not withdraw the prescription pain pills. I probably would have committed suicide due to the intense chronic pain otherwise. The searing pains in my abdomen and the burning in my feet were just too much to handle on my own.