Happy September 4th, 2016,
Today I am posting Trish’s (my wife’s) Questionnaire for my U.S. Pain Foundations, Pain Awareness Month project in hopes that someone new to their chronic pain journey will know that they are no alone and that there are places and people out there to reach out to. I am one of those people and my email can be found at the end of today’s post.
Trish had a different perspective on chronic pain as my accident was 23-3/4 years ago and we will be having our 19th anniversary here on September 6th, so as long as she has known me I have been in constant chronic pain. She has held on through the good times as well as the bad times, the medication changes, days when I’ve woke up and hunched over like an 85-year-old man. In fact, the doctors have compared me with an 85-year old.
Trish likes to write so she completed 10 of the 25 questions. With no more hold ups, todays questionnaire survey starts on the following page:
Name: Trish Hughes Kreis Date: September 3, 2016
How long have you cared for someone with chronic pain? A1. Richard and I were married 19 years ago and Richard has had chronic pain throughout our marriage. The level of his pain has fluctuated through the years but he has always had pain.
What do you understand is the cause of Richard’s pain? A2. Richard was hit by a drunk driver before we met. This has caused all sorts of back, neck and leg pain since that time.
Describe your typical day. How is it impacted when Richard’s pain is mild? Moderate? Severe? A3. My day is not nearly as impacted by Richard’s pain as his is. We have had to make adjustments through the years depending on what was going on. When his pain was at its worst and he was on some terrible medications, he couldn’t drive and could barely function. I shuttled our three kids to school and activities and did most of the household duties. As his treatment plan changed, it eventually gave him the ability to function (while still coping with pain). This allowed him to drive again and handle things around the house. Richard has certain times of day that are worse than others so we have to accommodate our schedule and activities around the times he has increased pain. This has been going on for so many years that it doesn’t feel as if it is an “impact” because it is just our normal. Which, of course, changes all the time. :^ )
What do you do to manage Richard’s pain (e.g. medications, complementary therapies, etc.)? A4. Richard is able to care for his own pain although I help when he is in severe pain. I get him ice packs, the heating pad or a pain patch or massage the area that is flaring up – whatever he thinks will help with the pain.
How did you figure out what approaches to take to get Richard’s pain under control? A5. Richard and I discuss the various treatment options the doctor proposes and work as a team to decide on the right approach. We have had disagreements about various treatments but we do work together. However, the treatment plan is ultimately Richard’s decision since he is the one in pain. I have been adamant about discontinuing some treatments as there are certain medications he has been on that severely altered his personality in a very negative way. (In Richard’s case, it was Neurontin and Oxycodone.) It was not something I could live with nor did I want the kids to be around him when he was on those medications. We worked with his pain psychologist and doctor to find alternatives that were more palatable for all of us. It is a work in progress, however, and we are always looking at better pain management options.
Is Richard’s pain management adequate? Can it be improved? If so, how? A6. I don’t think Richard’s pain management plan is adequate. He is still in a great deal of pain and I would like to see him in less pain – period. He uses an intrathecal pump which was a miracle at first but now scares me to death every time he goes in for a pump refill. During a pump refill three years ago, Richard’s doctor injected the Fentanyl into his abdomen instead of the pump device which almost killed him. I do not say that dramatically but factually. He was in ICU on the antidote, Narcan, for several days. To compound the problem, not all pain management doctors use the pump device and Richard’s pain treatment is managed through Worker’s Comp. He has yet to be able to change doctors even though this clinic almost killed him!
Has your attitude changed regarding pain as a result of your experience with chronic pain? how? A7. I have a great deal of sympathy and empathy for those dealing with chronic pain. I had not really dealt with anyone in pain before Richard so this has certainly been a learning experience.
In your opinion, what is holding back Richard’s pain from improving or becoming stable? A8. How do we break through those doors? I think part of the problem is the Worker’s Comp system but part of it is fear of change. I don’t know that Richard is ready to change doctors yet. My hope is that eventually he changes doctors and they are able to treat his pain more successfully than his current doctor. It might be an unrealistic hope, however, since the pain pump has been described as the best option on the market. I would like to see Richard on less medication but also think this is wishful thinking. He takes as little as possible in order to maintain a balance of functioning and pain-relief. Even after 19 years, I have “wishful” thinking that Richard’s pain will somehow disappear or be so negligible that it doesn’t really affect him. I know this is unrealistic thinking but that is the “Pollyanna” in me coming out.
What does your healthcare provider do to help you with your chronic pain? What do they do that’s holding you back? A9. The Worker’s Comp system delays medication approvals, surgery approvals, pain management changes – they delay pretty much anything and everything. It is always a fight with them which is draining and frustrating. The last thing a person in pain needs to deal with is a difficult healthcare system!
How has chronic pain impacted your family life? Your social life? Your work life? A10. Richard’s pain has not only affected his life but the lives of me and the kids. Oddly, I don’t think this is always a negative impact. I believe this has brought us closer in that we had to learn to work as a team. I think growing up with a dad who lives with Chronic Pain actually was good in a way for the kids. Life is not always rosy and happy and without obstacles and they learned that early on. I think having the kids see Richard’s determination to continue to try to be a good dad and do activities with them, even while in pain, showed them that people can persevere through very tough circumstances The pain and medications and resulting mood swings caused a lot of hurt feelings through the years but family is about love and support, forgiveness and acceptance. It’s about sticking together through thick and thin and that’s what we are doing. Some days it is easier to do than others but we always get there.
We have each other and we have love!
Thank you Trish for taking the time to complete the interview questionnaire.
If you are interested in completing a questionnaire and being part of helping others on their pain journey or if you know of someone who would be willing to share their pain story, please feel free to send me your email or have them forward me theirs and I will send a copy of the questionnaire and the date that it will be posted. Thank you all in advance for reading these amazing stories of People in Pain and here’s hoping that if your new to chronic pain or even a chronic pain veteran that you can take something from these stories and use it to help with your pain.