Life With Chronic Pain

The last week has been the week from hell. Last time I wrote I was waiting to get on a plane in D.C. Now I am lying in a hospital bed back in my hometown.  As soon as I landed my aunt picked me up from the airport and took me straight to the ER. They quickly admitted me and got me hooked up to some IV drugs.

You would think with all of my spare time I would be able to write more, but being NPO (nothing by mouth) has drained my energy.  Constantly being in pain and subsequently on narcotics doesn’t help either.  I have been on 2mgs of IV Dilaudid every two hours as well as 10mgs of Norco every four hours.  The first few days in the hospital I was taking the Dilaudid every 2 hours, but now I am trying to only use it when I am in extreme pain.

The doctors are at a bit of a loss for what is going on with me.  I have elevated pancreatic enzymes, which would indicate pancreatitis, but imaging of my pancreas has been normal.  It has been a frustrating and painful week.

This week I have been on a road trip with my parents to Pennsylvania and the Mid Atlantic region.  They were going to go for a 5 day back packing trip while I met up with a friend from college to head to New York.   Yesterday we arrived in Washington D.C. and dropped my friend off at the airport.  I was not feeling well so I decided to stay at the hotel while my folks toured the mall.  I began to feel worse and worse as the day progressed.   I tried everything in my bag of tricks including Compazine, Percocet, and a few hits of marijuana.  Nothing seemed to work and the pain just kept building.

I then decided that it was time to go to the Emergency Room.  I call my folks and they grabbed a cab back to the hotel.  I met them in the lobby and we went straight to the closest hospital, Washington Hospital Center.

When we arrived, the ER was a mess.  There were people all over the place.  I went to the triage nurse and checked in.  About 20 minutes later they had called me and were taking me to my room.  This was not a bad wait compared to other times I have been in the ER.

Then all hell broke loose.  As I was wheeled to my room one of the other patients crashed.   The nurse quickly took me to my room and ran to the crashing patients’ bed.

It took another hour before the doctor was able to see me and another 30 minutes after that until they gave me medication for the pain and to stop the intense nausea.  They also took some blood for labs.

When the doctor finally came back with my labs she told me that my Lipase and Amylase were very highly elevated.  She diagnosed me with Pancreatitis.  She then told me that she wanted to admit me to the hospital.  That was a tough choice.  Both of my parents had to be at work in two days and I would most likely be stuck in the hospital for at least a week.  I decided that I would leave the ER and fly home for treatment.  The Doc gave me several scripts for pain meds and Zofran for the nausea.

As I am writing this I am sitting in the airport waiting for my flight.  It is a good distraction from the pain.  I will check back in a few days.

One of the key symptoms of my illness is that I am nauseated all of the time.  When the nausea first started I tried simple over the counter antiemetics such as Tums and Dramamine.

Tums seemed to help a little at first, but quickly became ineffective. So I switched to the bigger guns, Dramamine.  Dramamine is an antihistamine and can be very effective for controlling nausea, but it can also be very sedating.

The first time I took it I was unaware of how sedated it would make me.  I was running errands with a friend of mine when the nausea started to hit me.  I needed gas so I pulled into a gas station.  After fueling up I went inside to see what kind of over the counter meds they had.  They had Benadryl and Dramamine.  I had unsuccessfully used Benadryl in the past so I went for the Dramamine.  I popped two pills and started driving to my friend’s house.  This was at about 4:30 in the afternoon.  As I reached my friend’s house I started to feel a little better, but I was getting very tired.

His house is about twenty minutes from mine and I didn’t think I would have any problems getting home.  Boy was I wrong…  About 10 minutes after I left his house I could barely keep my eyes open.  When I finally got home I was so disoriented that I couldn’t find my bedroom.   It was very scary. When I finally laid down I slept for the rest of the afternoon and all of the night.  I woke up at 9:00am the next morning and realized that I was late for work, as I had not set my alarm.

This taught me that you should always try new medications in a safe environment even if they are over the counter.  It is hard to judge how different meds will affect different people.

Last week at a routine doctors appointment.  I had blood drawn for routine tests.  A few days later I got a very worried call from my doctors nurse.  She asked me how my pain and nausea was.  I had been feeling pretty bad, but not much different than normal.  She then told me that my pancreatic enzymes, Lipase and Amylase, were very highly elevated.  My doctor quickly scheduled me to have an MRCP done.  A MRCP is an MRI that specifically looks at the biliary ducts, pancrease, and liver.  They wanted to check if my pancreas was enflamed or if one of the biliary ducts was blocked.

I went in for the MRCP at 7:30 this morning.  I have had several MRI’s in the past so I thought I knew what to expect.   As the nurse was checking me in she asked me the standard questions.  Do you have any metal objects in your body…no.  Have you ever had metal removed from your eye…no.  Finally, she asked if I was claustrophobic.  I had never had a problem with claustrophobia in the past, but I was about to have a rude awakening.

After the nurse was done checking me in a tech told me that I had been scheduled in the mobile MRI machine.  This is basically a big trailer with an MRI machine, generator, and computers.  When I walked into the trailer and looked at the MRI machine my heart stopped.  The tube was tiny.  I asked the tech and she told me that this was the last of the hospitals original MRI machines.   She then told me that I had probably been in open MRI’s in the past.

I changed into the gown and laid on the table.  As they slid me into the tube my heart began to race.  I am a pretty small person, but it was very tight inside the machine.  I closed my eyes and took deep breaths.  About 30 minutes into the test the tech came into the room and told me there had been an error with the computer and they were going to have to start over.  That is when I freaked out.  I told her “Get me out of here now!”  I jumped off the table and went outside to try and quell my nerves.  After about 15 minutes I went back inside the trailer and was able to finish the test.

This morning, I arrived with my mother at the pain clinic.  They had asked me to bring a driver because they were not sure how the drugs would affect me.

I left my mom in the waiting room and followed the nurse into the procedure room.  I undressed and downed a gown.  The nurse asked me a few questions and then the doctor came in.  I showed him where I have pain in my lower left abdomen.  He pushed my gut and I almost screamed.  He said” That’s the spot.”

He was shooting for the ileal inguinal nerve.  It runs across the lower abdomen, down the inside of the leg, and down to the pelvis and genitals.  I was very interested in what they planned to numb and how long it was going to be numb.

He stared the procedure my injecting the site with local anesthetic.  Then he took an 8-inch long needle and began to dig into my abdomen.  “Holly crap” I screamed.  I could not believe the pain.  The doctor then decided to tell me that this was the first time to perform this particular procedure.  That was reassuring.  After about ten minutes of digging around in my gut he was finished.  The nurse bandaged me up and asked if I wanted a wheelchair. “No” I said, “I should be fine”.  As the words left my mouth I stood up.  As soon as I put weight on my left foot I fell to the ground.  It was pretty funny.  The nurse grabbed a wheel chair and helped me in it.

While I was laying in the recovery room a nurse that I had never seen before walked into my cubical and sat down.  She asked if she could ask me a few questions.  “Sure” I said.  Then in a wispier she said, “I have heard that you use medicinal marijuana.  I just wanted to let you know that a lot of us hear support you.”  I was kind of shocked.  Once again it seemed like my private information was open knowledge in this office, but at the same time her words were reassuring.

“Thanks I appreciate that,” I said.  Just then my mother walked in and the rouge nurse quickly walked out.  “What was that about?” my mm asked.  “Nothing really” I responded.

The rest of the day was pretty interesting as I could not walk, but it was a great excuse to not mow the lawn.

My heart pounded as I walked down the hallway towards the doctor’s office.  As I opened the door my hands slipped on the doorknob…sweaty hands.  I walked to the front desk and asked for Jill.   I took a seat and waited for Jill to call me.

The office I was sitting in was the pain clinic.  I have suffered chronic abdominal pain for the last 3 years and in the last 10 months it has become excruciating.  In the last 10 months I have taken a lot of strong narcotics primarily oxycontin and I was hoping the pain clinic could help me to get off of them. Jill was a therapist who was going to give me a psych eval. If you are taking large amounts of narcotics and they cant figure out what is wrong with you, they tend to treat you with great suspicion.  I cant remember how many times I have been told that it must be all in my head.

Finally, they called my name and Jill met me at the door.  She said hello and led me back to her office.  I sat down in the plush chair, took a few deep breaths, and tried to relax.  I have nothing to hide, but I could tell the interrogation was about to begin.

“So”, she said. “The word around the office is that we have a medical marijuana patient.”

“Yes”, I responded shocked that my private medical records were being openly discussed around the office. “ My pain management doctor in LA prescribed it to me to help me relax and to slow my habituation to narcotics.”

“Well that’s great, but you aren’t in LA any more…” she smirked.  I explained to her how much it helped me, but she didn’t seam to care.

For the next hour she berated me for my marijuana use.  I left her office fuming.  I had gone to the pain clinic to get off of narcotics and this woman had the nerve to judge me.  At that point I was ready to forget the pain clinic and try to work with my general practitioner to get off of painkillers.

My motivation to go to the pain clinic in the first place was to have a nerve block.  When I went for my initial evaluation they recommended that I see Dr. McDufus to see if he had any ideas on how to better manage my pain with meds.  Seeing Jill was a prerequisite to an appointment with him.