Health Issues and Mental Health

Having a brain aneurysm burst in your head does have a way of prioritizing your life. Whatever serious health issue you may have, if you are still alive and reading this, you have at least one good outcome.

I will try to describe my experience and maybe it will help you with any decisions you need to make. If you are not interested in hearing about my experience, skip to the bottom because I will have a “lessons learned” section at the end.

My health problem was rather dramatic. One minute I was a normal healthy individual and the next at death’s door. Amazingly, before surgery I was rather calm once the paramedics injected meds to ease the pain in my head. I knew there were only two outcomes.

First, I might die. This was not a terrible option in my opinion. Because if I end up severely impaired, I would rather die. This type of death – on the table, in surgery – would be an easy death. I knew I already had an extraordinary life with no regrets. However, I felt badly for the friends and family I would leave behind. Therefore, my one regret at this time was leaving loved ones so suddenly with no time to say goodbye.

Second, I will recover. Being a stubborn person, I had to recover fully. The timeframe to recover fully did not matter to me.

When I woke up from the aneurysm surgery, I “checked” out my brain internally and discovered no deficits. I also moved all my limbs and the extremities worked. I was pleased with the outcome. Now all I have to do is heal.

I was wrong about the “all I have to do is heal” part. Because the medical professionals taking care of me did about anything they could to discourage my healing in regards to my mental health. Let me explain.

The first hospital I was admitted to was where the paramedics took me. It was the best trauma hospital near my home, and not my insurer. The neurosurgeon there saved my life and I am forever grateful. I stayed for four days before I transferred to another hospital.

It was the worst four days of my life, ever. Not because I had surgery and was healing. Because they would not let me out of the bed **at all**. Even though I was begging to be let out of the bed even for minute, or a few seconds.

What I found out later was the nurses were afraid to let me out of the bed because of the amount of blood in my brain (in the wrong place). They worried I would pass out or fall over. But that is not what they told me. They talked to me like I was a child…..ohhhhhh you just had a serious surgery – we cannot let you out of the bed!!! Well that is a stupid reason, and I knew it was stupid. Because many surgical patients are coaxed out of bed right away. Not me. They tied me to the bed.

The first two days I tolerated it, but not well. By the third day I was livid. I would ask constantly to let me sit in the chair next to my bed for 30 seconds. I would plead, beg, cajole, and cry. On the fourth day, I was screaming at the top of my lungs to be let out of the bed. I was inconsolable, and STILL they left me tied to the bed.

If someone had handed me a gun at that time, I would have shot myself dead. That is how much torture the hospital put me through for the first four days after my surgery.

What??!! You ask. You would KILL yourself just because of four days stuck in a bed. YES, I answer. No one was telling me anything. For all I knew, I was stuck in that bed for the rest of my life, with other people constantly telling me I had no rights and too bad I had to stay in the bed. I got NO INFORMATION. The nurses would just do the “baby-talk” of “oooooh you had a very serious operation, just lay still and sleep”. Ugh – I was trapped.

To make matters worse, there was a trauma that caused my angst even more….. I had a childhood that was very restrictive (an undiagnosed bipolar mother and also with a control freak gene, who also happened to be dying from cancer). I was not allowed activities outside the home after school, and I had to be home exactly at 3:15 – ten minutes after school let out (God forbid that I talk to someone at school and have a friend). I promised myself when I became an adult this situation – of having no control over your life – would never happen again. And I was true to my word, until these four days happened.

I was so happy when I was transferred to another hospital that my employer preferred. But here is the funny story that happened because of my 4-day trauma….

I don’t remember this “incident” because I was in a morphine haze. The morphine would be given to me for pain every 4 to 6 hours. Until I got switched over to a less powerful opioid, I only had a hour or less between every morphine injection to know what was truly going on, or to be “awake”. In a lot of cases, the nurses did not recognize the difference. Another one of the sad facts while recovering. Here is the story, as related to me by several individuals (one was my primary care physician, who read the notes on “the incident”).

It began with a medical transport from the emergency hospital to the hospital my employer preferred. The incident started when the non-emergency medical transport personnel left me in the hallway outside of the new hospital’s neurology ICU department. They had to “check me in” before wheeling me into the area. While they left me in the hallway, I figured out, in my morphine haze, how to lower the metal railings on my gurney. I then found an emergency stairwell, and in my hospital gown (plus the bandages on my head and I had bare feet), went down two flights of stairs to the obstetrics department one floor below.

When the medical personnel came out into the hallway, an empty bed was winking at them. Panic set in. The hospital went on full lock-down until they find me.

Someone noticed a lady with a bandage on her head, and a hospital gown on, sitting on a bench in the obstetrics department. They realized I was the missing woman.

Security came to take me back upstairs. I resisted dramatically, screaming “Don’t lock me up, I have already been locked up!”.

See how much trauma four days locked in a bed caused my poor subconscious.

My primary care physician says they changed the policy at the hospital for medical transports because of me. I do not how true this is, but she says they gave me a special name “the most mobile brain surgery patient”. LOL

The sad and good part is at the new hospital, they assigned a person to watch me, 24/7. Depending on the person assigned, it was either a good or bad thing. I will explain later.

The good news is I convinced people in this new hospital neurology ICU to let me get out of the bed. And after a talk about how good my coordination and balance is (I used to be a dancer), they allowed me to take a walk around the ICU whenever I asked. Which would happen at least three times a day. No more prison!!

The watchers were assigned to me to make sure I did not “escape”. I was not trying to escape anymore, but no one believed me. Also, when the neuro doctors talked to me, they always told me I was brain damaged. WHAT??!! I kept telling them I was NOT brain damaged (they did not really believe me until a year later).

The head of neurology actually had the nerve to tell me I was brain damaged because I was arguing with him. It happened a co-worker came in my ICU room shortly after that conversation with the doctor. I sent him after the doctor to tell him I could not be brain damaged because “it is my personality to question everything and try to get the best out of people”. He caught up with the doctor and told him that. The doctor was not pleased!!!

There was only one person “watching” me that actually encouraged my behavior instead of deriding me for it. She used to say that I was strong, stubborn, and she could see that I was whole and trying hard to heal 100%. She was on the day shift. All the others talked to me like I was a baby and that I was brain damaged. I cannot tell you how many medical staff told me I was brain damaged (it was dozens). HMPF. That is not encouraging for you to hear. Luckily, I am stubborn and refused to listen. That one nurse – that saw me as ME, and encouraged me – was one person and one person only.

I was the only person in the Neurology ICU that walked around it every day several times. How sad more could not do it. Maybe the others were discouraged and told to stay in bed. That was the attitude in that department.

When I was moved over to a regular hospital room, I got a new “watcher”. And I was told I could not walk around the hospital any more. Apparently, there was a communication problem between ICU and the regular wing of the hospital. My privilege was revoked, even though I was much better! That only happened for one night, but it was very traumatic. The “watcher” would not even let me out of my room threshold!! I asked for a sedative to sleep, because this guy made me miserable. I cried myself to sleep because I could not advocate for myself and take a walk around the hospital. I told this bad “watcher” that he could come with me on my walks, but because of my level of energy, I HAVE to take them. He still refused to let me out of my hospital room.

Considering all the negativity received from the hospital staff and doctors, they still gave my body excellent care. BUT they DID NOT feed my mind. And even when I told them what would make me feel better (walking around), they would not listen to me.

The last insult was the hospital has an atrium. I had not breathed fresh air in three weeks, or felt the sun on my face. The hospital staff refused to let me out there in the atrium!!! It took three days and “special permission” before I got outside in that atrium. Success, but little to celebrate because I was released from the hospital the next day. UGH.

After I left the hospital, I asked the doctors if I could come back to the neurology ICU to provide encouragement to the patients. I was told NO and that it was a HIPAA violation. This is not the right attitude, the most you can do to lift people’s spirits is very important. I am a part of this organization. I don’t want other people to be treated the way I was treated. Someday in the future I hope to provide the right support for patient mental health. You need it when your body is sick!!!

Lessons Learned

1. It is important to write down all of your wishes. Now I have in a document that I do not want to be tied down in a bed ever. And also, if it has to be done for my safety, then I want to be put “out” because the trauma for me to be immobilized is severe.

2. I also have back-up advocates for my health identified in my list of people who can make decisions on my health. I discovered in this harrowing event that my husband has white-coat syndrome. He just goes along with what the doctors say and believe they know best for my treatment. The doctors did not coincide their treatment with my wishes. And even though my husband knows my trauma about being tied up and locked up – he ignored my wishes in favor of what the doctors were telling him. We almost divorced later because of this problem because I was so angry with him. To counter this issue, I added other people – friends – that know me well also. They will help my husband question the doctors and ensure the best care according to my wishes. Please always pick at least three people to judge what is best for your health care.

3. Talk to your health advocates from #2 above and make sure they know your most important opinions for your health care. Even if you have it written down, it is best to hear it directly from you.

4. No matter how many loved ones around you advocating for your care, you are the person that must advocate the most for your treatment. Ensure the doctor sees the person and your preferences. Do not give up on what is important to you. Believe in yourself, and keep your strength of character and your beliefs.

#physicalhealthandmentalhealthgohandinhand

#encouragepatient

#powerofpositivity

#bestubborn

#beresilient