I have not contributed a posting in several weeks due to a set back with my health, but I am feeling better now and plan to post more regularly. Since September is Pain Awareness Month, I will be posting a series of pieces relating to the critical need for enhanced understanding about and action on behalf of the millions of people who live with pain. More specifically, I will be writing about the individuals, whether it is you or someone you know and/or love, that lives at least a part of each day with intractable pain that is often so bad it becomes an effort for the person to breathe, to speak, and most definitely, to live a life may people might consider ‘normal’. These articles will include topics, such as:
- Why it is important to increase public awareness about the physical, emotional, financial, and social impact chronic pain can have on a person’s life;
- Why medical professionals of all specialties should be better educated about these aspects of pain and why we need more pain management specialists;
- The importance of federal funding for research into the causes of and effective treatments for pain, and how to advance communications between the research efforts and the practicing professionals;
- Increased awareness and improved public perceptions about the impact of pain and the importance of access to effective treatment for everyone living in pain;
- Why each of us can and should play a critical role in advocating for all people living with pain to have access to the most effective pain treatment available; while at the same time,
- Fighting against federal, state and local legislation or policies that place obstacles in the way of efforts to receive the most effective medical, complimentary, psychiatric, or integrative medical treatment a person might require.
September has always been a month that held a lot of promise and excitement for me; as a child it was the start of a new school year and I set out with great expectations and big aspirations. Then, as an adult I enjoyed over 20-years in a career in higher education administration and I always anticipated with joy the return of the students and faculty who, for the most part, held those same expectations and aspirations. For my staff and me it was when the yearlong strategy of programs and projects that we spent the summer planning would become reality, and I looked forward to an active and productive year.
Of course, as with most people, things didn’t always work out as I planned. Health issues that I lived with most of my life continued to place obstacles in my way and become progressively worse as I grew older, until finally, in 1998, I had to leave a career I loved and go on disability. This was the most difficult and disappointing life choice I ever had to make in relation to my health, and now, 12 years later, while I have made the necessary adjustments and am living a relatively happy and productive life, I still miss my career and the people that were so much a part of my life during all those years.
Dear Ms. Coleman,
I could of written this script. Bless you.
Although, unlike you, I am still mobile for the moment. I have had several times when I have not been. Chronic illness does take its toll in its waves of severity. For those of us who have several chronic diseases to deal with, even more so.
I have a great team of 14 doctors. I try to keep my sense of humor in tack and try not to be attached to my pain. Which as you know can be quite an effort most of the time. Especially, when I feel like a dying animal at the water hole on my worse days. However, as you have written, I too am a staunch advocate for quality of life. The dream of longevity in quantity of years vanished many years ago when what I wanted most was to be the best I could be for myself and my love ones in quality of living.
Pain and intractable daily pain erodes this quality. Maintaining with proper meds, physical therapy and aides (when needed) is essential. Affording household help and care takers for my children when they were young was difficult financially. Today, I still need help around the house. Even though, my husband does all the grocery shopping and cooking.
You spoke of isolation and emotional loosing connection with others. Yes, this too needs to be addressed for quality living as much as the perception of others have of pain.
These days I keep myself in tack by doing a minimum of physical activity. 3 spinal surgeries with instrumentation, a dual pacemaker, a liver that has been compromised by allergies to drugs; migraine headaches, rheumatoid and osteoarthritis and 4th stage breast cancer, leads me to the computer to keep me connected to others in work and advocacy plus friendship. I do miss (like you have written), the activities i did when i was younger. However, today, I revel in my lunch dates with friends and being a friend to those in need. I communicate globally with clients and family connections are so very important to. I am still able to drive and currently am walking on my own. And, I can stand at a podium (which I can use for support while standing for any length of time) while addressing others. I am determined to get around and I have found ways to do that too. As you have found, my mind is willing and ability to communicate is my plus whereas my body is incapable of cooperating at times.
Yes, we rides the waves of chronic illness, their treatments and medication side effects, as we also ride the waves of emotional coping. The need to continue to advocate and speak out to others about pain and its many levels of difficulties in life, needs to continue. Advocating for proper pain relief and balance is essential as any one treatment often opens pandoras box of other complicating side effects. I am also a strong advocate for opiate use for intractable pain. I myself was put on small amounts of methadone from nerve inflammation due to my last spinal surgery. It gave my body a rest while my nerve endings were healing and i was able to take myself off the drug within 18months.
Thank you for your spirit, writing and advocacy.
All the best to you in your endeavors.
Thank you for your informative and interesting comments. There are so many of us out there with multiple chronic illnesses and I don't think many others realize the number of doctors and therapists it takes to keep us going. Sometimes I feel like the only time I leave my apartment is to go to a doctor's. I salute your spirit and commitment to keeping your life as active and productive as possible. It sounds like you must be a valuable support to many people who live with pain and/or other chronic conditions.
Have you ever looked into the American Pain Foundation (www.painfoundation.com) as a source of involvement. I am a volunteer advocate and I admire everyone that works or volunteers for this wonderful organization. We need more voices advocating for access to the most effective treatments for everyone living with pain, perhaps your voice could join ours?
I wish you the best with all you are living with. I hope you have some pain free days and get some rest from the other illnesses and their symptoms once in a while. That is so important, isn't it?
Best,
Denise