What a Pain

Since I've been home, I've been in so much pain. It's been absolutely horrendous. I am in agony all the time. My bones and joints hurt. My lungs hurt. My trach hurts. I just can't win. I am taking pain meds non stop. I take them every 4 hours, as frequently as possible. Often it seems as if I am looking at the clock, waiting for it to be time for me to be able to take pain medication. The lowest my pain has been since coming home is a 7.

Before going to rehab, this was somewhat acceptable. Since I never seemed to get complete relief from the medication, any relief was okay and acceptable. I just figured that for whatever reason, I was a person whose pain couldn't be adequately managed. I had pretty much given up on pain management. As long as my pain wasn't a 10, I was okay. It was when it got above this, that I couldn't deal with it. All of this changed when I went into rehab. In rehab I had adequate pain management. I was getting IV Benadryl around the clock. I was also getting oral Dilaudid as breakthrough medication. Though my typical pain management schedule was for Percocet as breakthrough medication, the Benadryl and Dilaudid combination was more effective. With the Benedryl, I needed less medication to effectively manage my pain. It helped the narcotic pain medication work more effectively. With it, I was able to need less narcotic pain medication. I was only needing 2-3 doses of the Dilaudid per day. Some days I didn't need any. My pain was well managed. This was a miracle to me. I had never had adequate pain management. I had pretty much given up hope that it would exist.

When I was discharged from rehab, they wrote a prescription for me to get the IV Benedryl. Before going to rehab, I had been taking oral Benedryl several times a day to control the itching attacks that I get. On an average day, I was taking 6+ doses of breakthrough narcotics and at least 5-6 doses of oral Benadryl. In the hospital, I was only needing ~2 doses of breakthrough narcotics and 2-3 doses of IV Benadryl. Once home, however, Kathy, my infusion nurse, didn't want me to use the IV Benadryl. She said she was concerned because it carried the risk of possibly developing a dyskenesia, or abnormal muscle movement. She said with the challenges I was already experiencing, this was the last thing I needed. Now while I love Kathy and she is an excellent nurse, she is also very opinionated. When she has an opinion about something, she gets stuck on it. Well this was one of those things and she contacted Dr. Giannini about the fact that she strongly felt that the IV Benadryl was not a good idea. I understand her concern, and if I was a typical patient, it would be valid. Of course, if I was a typical patient we wouldn't be discussing it because traditional methods would be successful, but I am not a typical patient. In my opinion, 2-3 doses of IV Benadryl is much better than 6+ doses of oral. Using IV Benadryl, which seems to make the pain medication more effective and thus make it so I require less narcotic pain medicaiton and help control my allergic reactions, seems better than needing 6+ doses of narcotic pain medicaiton. I also don't understand why IV would have this potential side effect if oral did not. Wouldn't you develop it much faster with the 6+ doses/day than 1-2 doses/day? Isn't it better to use non-narcotic medication vs. narcotic pain medication? I also have a hard time understanding why we should veto using IV Benadryl and its benefits for a potential side effect that could occur in the future. This is not even something that will happen, but something that "may" occur as a "potential" side effect. Let's face facts, I'm not going to live forever. My life expectancy just with the CVID alone is 20 years after diagnosis. I have been diagnosed for 5 years. I will be lucky if I get another 5 years out of this situation. During this time I want to be as comfortable as possible. I have a hard time justifying not using a treatment based on potential side effects in the future. I am more concerned with right here, right now. I want to be comfortable. I don't want to be in agony constantly. Being in this much pain is not fair to me. I can't do the things I should and need to do. I can't do as much physical therapy as I should or need to because I'm in so much pain. Pain makes physical therapy and exercising near impossible. The pain completely takes over my body and my life. It's all I can think about. I can't do the things I enjoy because all I can think about is the pain. It is constant, never letting up or giving me a break. Sometimes the pain is so severe that I can't endure it, and worry that I will go crazy from it. No one should have to live this way. It's not fair. It's not a quality of life. I hurt all over. It's depressing. It dampens your mood, and it makes it hard to concentrate on things. Thoughts of pain consume every aspect of my life. The most frustrating thing is that it doesn't have to be this way. The pain can be managed. I have proof of this because it was well managed the entire time that I was in rehab. There is no reason for me to have to suffer. It wasn't difficult to treat. IV Benedryl is a benign medication. It's not difficult to obtain, nor is it a highly regulated medication like many narcotics. It is a simple antihistamine. In addition, it is easy to administer, something I'm capable of doing without a problem. There is no reason for me to be in so much pain when the solution seems so easy. Of course, since Kathy didn't support it, she called Dr. Giannini, my pcp. My pcp listened to her because she is a nurse and obviously knows what she is talking about. When the VNA later called Dr. Giannini to try to get it set up for me to administer the IV Benadryl at home, Dr. Giannini refused to accept the script in support of it. Therefore, I am not able to get it as a medication. So, though the medication helps manage my pain effectively, and with it, I need less narcotic medicaiton and my pain is managed effectively, I can't get it. Instead, I must suffer in agony. It's horrendous to have something so simple, so available without complication, and yet unable to get it. I wish sometimes that they would live in my shoes and see what it's like. Maybe then they would be more understanding, and stop limiting potential treatments by thinking outside the box to improve my quality of life.