Come Listen to a Story - Part 3

Part Three of Four

I want to say that it was the morning after connecting with my mom that I woke up and looked around my room and for the first time I thought to myself – I think I’m in the hospital.  And when Jim got there that day, we had a conversation where I was asking him why I was there?  And he would answer with statements like, “I would tell you if I could” or “we don’t know why this is happening”.  Both very appropriate answers for the question I asked.  However, you must understand that I was coming out of this blackness with very little recollection of the past weeks and my world was not how I remembered it.  A better answer from my husband would have been something like, “I came home from work and you weren’t yourself, we came to the hospital to check you out and we have been trying to figure it out for the past weeks.  Do you remember any of that?”

This exchange is one that I will remember forever.  I realize in looking back that Jim was indeed answering the question I asked him, but it did not satisfy what I was really asking and at the time my brain knew what I wanted to know but my mouth could not speak those words. 

I also asked him why I couldn’t leave the hospital.  His response to me was that I would first have to show them that I was capable of brushing my teeth, using the bathroom, getting myself dressed, walk up and down the hall to get my strength back, etc.  My response to that was, “well, I can do all those things”.  And so, began my recovery.  I would put on my shoes by myself and walk the halls multiple times a day.  I was always greeted in the hall by big smiles from the nursing staff telling me how great it was to see me up and out of bed.  It felt as though they were longtime friends.  However, based on my recollection we had never met, of course we had.

I recall one walk that Jim and I were taking with the physical therapist.  I was doing my thing while Jim and therapist carried on a conversation.  At one point the therapist mentioned taxes coming due soon.  See, we were nearing the end of March by now.  I looked at them and said, “I have to sit down, now!” and I sat on the stairs.  This bit of information shattered me.  I realized in that moment that being a solo entrepreneur, no one had been taking care of my business and I certainly didn’t have things ready to file taxes.  Oh, the pressure.  They both reassured me that everything would be okay.  Eventually, I was able to gather myself and walk back to my room.  In retrospect it was such a red flag highlighting the stress I had been dealing with around money for all the previous years.

Another stress at the time was my feeling unsafe in the hospital.  I could share many experiences that caused me to question my safety.  Were they real or were they in my mind?  I need to say here that the doctors and nurses and other staff members were just doing what they had been trained to do.  And I can’t think that any of them were truly out to get me.  But it remained my perception the whole time I was in the hospital. 

Finally, the day came when I was well enough to go home!  I was itching to get out of that place.  I can remember Jim and I waiting for the doctor to come in to release us.  First, the doctor had to take out a central venous line that had been necessary for the five rounds of plasmapheresis.   Once that was taken care of, we were allowed to go home.  It was a fifteen-minute drive to our home in Rochester.  And the minute I walked in the door all my fear fell away.  I was SAFE again.  What a wonderful feeling.

Now it was time to get back to “reality”.  Shortly after I returned home, Jim went back to work.  He had taken family leave while I was in the hospital.  And when he went into work, my father would drive over from Owatonna to stay with me.  Just in case.  It was reassuring to have dad around those days. 

The first thing I wanted to do was get back to my chiropractic patients and start up my practice again.  I gave my first post-hospital adjustment to my husband.  That was a wakeup call.  Lying in bed for five weeks and one day can do a number on a person’s strength.  I knew in that instant that I was not going to be returning to work right away.  I had to regain a lot of strength first.

And then there was the tiredness.  I would be going through my day and then all of a sudden, I would have to close my eyes and take a nap.  It was the craziest thing.  Sometimes my naps would last an hour and sometimes a few minutes, literally.  And then I would be back in action.  As the days went on, the naps got less frequent.

Then there were the side effects of the drugs they had me taking.  I remember while in the hospital they had me on some strong steroids that caused me to hallucinate.  I would see fountains of water shooting up from the floor, and little cockroaches.  They didn’t scare me, I found them entertaining.  One would scurry across my table and I would try to catch it.  I remember one time my dad asked me If I was seeing things.  I quickly replied no because I didn’t want anyone to think that I was crazy?!  There would be greyhound-like dogs that would come up and nuzzle next to me.  And then there were the pictures on the wall that would change throughout the day.  It’s amazing what chemicals can do to the brain.

When I was released from the hospital, they gave me 3-4 medications to take.  One was prednisone.  It wasn’t until a week or so after being home that I read through the information that came with the drug and I was experiencing every side-effect listed.  And some were pretty intense.  So, I got on the phone and talked with the doctor to reduce the dosage.  I got off that stuff as quickly as I could.

Now you are probably wondering why I was given medications.  What was my diagnosis?  That question is still a question.  The only diagnosis they could come up with was that I was suffering from encephalopathy with inflammation of unknow origin.  In English, it means that I had areas of inflammation in my brain and they have no idea as to why?

Next week, I’ll get into some of my thoughts on the possible reasons.  As well as more on my recovery and the lessons I have learned from the whole experience.  But for now, just know that once I got back home and started to take better care of myself, I made a full recovery.


“It takes strength to make your way through grief, to grab hold of life.

and let it pull you forward.”

- Patti Davis

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