I am afraid of pain. The worst pain I ever experienced was when I was 17 years old and burnt my finger while making the popcorn balls that I was sending to my brother at tennis camp. Burns are the worst. So, I think I can say I have never been in excruciating pain. Even my #9 pain in the hospital, on a scale of 1 to 10, was not earth shattering. I must have inherited some, maybe even a tiny bit, of my dad's unbelievably high tolerance for pain. So, why am I so afraid of pain?
The worst part of this whole cancer inconvenience has been the lack of education regarding pain management. No one at the hospital explains the pain meds, how quickly they work, at what level of pain do you need to take them, and at what level should you stop taking the meds. (Pain is measured on a scale of 1-10. Level 5 seems to be considered the threshold where you say ouch. The pediatrician has the same scale but with a smiley face at one end, and face with big tears at #10.)
I mentioned before that I never felt any pain in the hospital, other than the one night. I just kept pushing that morphine button because I was afraid of pain, even though I was not in pain. If someone would have explained how fast the morphine will cut pain once it starts to increase, I might have not been watching the clock for every ten minute mark where I could push the magic button. I still do not know how fast morphine works, only that it works very well! Did I push the button more than needed? I don't know. Does it really matter? I don't know. What I do know it that I took too much pain medicine, when I got home.
I was sent home with seven prescriptions. I had so many meds that I kept a clipboard by my bed where I wrote down, on a daily basis, and as I took the meds, the time I took every pill, the type, my pain level, and sometimes my temperature. On a separate sheet I wrote down every medication with a description of how many, how often, and what for. I wrote the name of the med with a big black sharpie on each bottle cap and side of the bottle. (The eyes are going, and I didn't want to make a mistake.) Poor Chubba, the lights were on and off all night as I was logging my drugs.
Dilaudid, a narcotic, was my pain medicine. The bottle reads 1-2 tablets by mouth every four hours. One of the nurses told me that I could take one every hour. Another nurse told me to take 1-2 tablets every two hours. I was confused, and so afraid of pain, that I took two Dilaudid every two hours - double the dose on the bottle. One morning I woke up and noticed that I went 5 hours without a pain pill, so I took three pills; pain level was a 5/6. I got so wrapped up in not missing the two hour slot for taking medicine, that I got a timer to wake me every two hours to take this darn Dilaudid. As I'm reading over my drug log right this moment, I noticed my pain was rarely above level 2/3 - no wonder. I told my home nurse after a couple of visits that I thought I was taking too much pain medicine. (My insurance pays for a nurse to visit me 3 times a week to check drains, vitals, etc.) When she read my log, she said that I took enough Dilaudid to sedate a horse! By this time I already began weaning myself off of Dilaudid and onto Extra Strength Tylenol.
So, I went through detox, my own little mini rehab. I had to get the morphine and Dilaudid out of my system. One side affect of detox was that I had incredible restless leg syndrome at night. I didn't sleep more than one hour, three nights in a row. I had conversations on the phone that I don't remember. I was hot. I was cold. I was hot and cold at the same time. I had the most bizarre dreams, but none that I can remember. Fortunately, this detox wasn't that bad, I just felt strange and uncomfortable. The girls never even knew that I was having issues - just same ol' whacky mom.
The most frustrating part about this pain management/detox experience is that it was completely avoidable if someone at the hospital had explained to Justin, my mom, or me how the pain meds work. I understand that everyone has a different toleration level, but there must be some standards regarding how quickly they work, and when you can back off or ramp up. The lack of education explains why so many people have problems with pain medication. I don't think there is a medical specialty for pain management other than anesthesiology. Not enough attention is paid to pain management by hospitals, and I think this needs to change!
I only take Extra Strength Tylenol a couple of times a day now. I have a constant level of pain around 2 or 3. It's minor and livable.
Today I went on a little outing to a nursery and Henry's Market with my mom. (I am going to miss her so much when she is gone.) About a hour after we got home, I hit the wall and was wiped out. My energy level has a ways to go.
Whacky thought for the day...
Toes are so handy and underutilized. Toes can pick up a pencil. You can pick up clothes off the floor with your toes. A dropped washcloth in the shower can be retrieved with your toes. But, a bar of soap is impossible.
Yesterday, June 2nd
Happy Birthday Bridget!
Happy Birthday Vincent!
Isn't it strange that I have a sister and Chubba has a brother with the same birthday? Bridget would be quick to point out that she is 5 years younger than Vincent!