Advocating for and connecting those new to their pain journey and all the veterans of pain who have been on their journey for sometime. Testing new products and existing products for the caregiver and their loved one. Offering a safe place to tell your story with no judgement, because we've been there.
September is National Pain Awareness Month and U.S. Pain Foundation has asked what are we as “People in Pain” going to do to give back? My project is to post a questionnaire interview with a new “Person in Pain or a Person Caring for or Affected By Pain.” daily, throughout September. I am still in need of 23 volunteers that would like to give back by sharing their story in the hope that someone just starting out on our little island can learn for us and not have to wait days, weeks, months or even years to find a tip that can help them now. If you would like to share your story, please send me an email (iCareConsulting@att.net) and I will forward the questionnaire to you, or if you would like to write your story in your words and send it, that will also be accepted. Now onto today’s interview.
I meet Nicole through her Mom, Jane who I connected with and built a wonderful friendship and who has joined my Long Distance Caregiving Family. We have known each other for 4-5 years through various internet sites, have hosted several chat rooms together and more. Through that time we have seen Nicole grow up, turn into an amazing artist and have seen that nothing holds her back. On that note, here is our September 2nd Pain Awareness Month questionnaire interview.
Interview Begins on Next Page
How long have you lived with chronic pain? I’ve lived with it for about four years
What do you understand is the cause of your pain? The pain is caused by the subcutaneous medication I take for my chronic illness, pulmonary hypertension (high blood pressure in the lungs). It is localized around the infusion site.
Describe your typical day. How is it impacted when your pain is mild? Moderate? Severe? When my pain is moderate, it will impact my day somewhat. I usually just rest a bit more than I normally do and I don’t do anything strenuous. I usually have to take ibuprofen and use ice. Sometimes I have to take Percocet too. When my pain is severe, I usually have to stay in bed for a good part of the day. I have to take both ibuprofen and Percocet and use ice.
What do you do to manage your pain (e.g. medications, complementary therapies, etc.)? The medications I take ibuprofen and Percocet. I use ice quite a bit when my pain is moderate to severe. Sometimes I will use a heating pad, but I find that ice usually works better.
How did you figure out what approaches you needed to take to get your pain under control?I talked to my doctor and the specialty pharmacy that sends the subcutaneous medication. They both gave me some things that I could try to help with the pain. I also got advice from other people taking the same medication.
Is your pain management adequate? Can it be improved? If so, how? It’s ok now. The only way I can think of that would improve it would be to go on a stronger narcotic medication.
Has your attitude changed regarding pain as a result of your experience with chronic pain? how? .I don’t really think my attitude about it has changed. It just became somewhat normal for me.
In your opinion, what is holding back your pain from improving or becoming stable? How do we break through those doors? I think my pain is pretty stable now.
What does your healthcare provider do to help you with your chronic pain? What do they do that’s holding you back? My doctor prescribes my pain medications and offers some suggestions about how to make the pain better. I don’t think he’s holding me back in any way.
How has chronic pain impacted your family life? Your social life? Your work life? My parents feel bad for me and wish that they could take the pain away. They’ll help me in whatever way they can. When I’m in pain, sometimes I don’t feel like hanging out with my friends because I’m either too tired or in too much pain.
Does the experience of living with chronic pain carry personal meaning or significance for you? Have you discussed this significance with your family? Your health providers? The experience doesn’t really carry any personal meaning for me. I just think of it as one of the trade-offs for improving my pulmonary hypertension.
What are your feelings when it comes to the thinking that the governments emphasis on opioids and the addictive qualities has taken away from the ability to manage patients pain and the inappropriate use which leads to addiction? Which in turn is actually hurting pain sufferers. It’s annoying hoops to go through in order to get their medication. Even with the hoops, people who are determined enough to get the medication will find a way to get it, legally or not.
There is a stereotype out there that all those in “Pain” or on “opioids” are nothing more than addicts. Or, it’s all just in our heads? When you hear someone say one of these or something else similar, what’s your first thought? They don’t know what it’s like to be in so much pain, and that their opinion probably would change if they had to endure that (though, of course, I don’t wish that on anyone).
Where do you go? Who do you talk to? What sites do you go on, when you have just had to much? I have joined a couple of groups on Facebook that are about the same medication that I’m on. People will ask questions, offer advice, and vent about their pain there.
Do you think your family, spouse or friends truly understand what and how your chronic pain is affecting you both physically and mentally? I think my parents (especially my mom) understand how it affects me. I think my boyfriend understands it somewhat from my venting, but he probably doesn’t truly understand because he’s only seen me in pain once. I don’t really talk about it with my friends, though they do know about it.
How much is, too much? When I am bedridden because it’s too painful for me to get up and walk around.
What type of treatments have you tried to rid you of your pain? Which works best? I’ve been using ibuprofen and ice since I started the medication. I used hydrocodone for the first couple of years. I had to raise the dose once, and when that wasn’t satisfactory, my doctor and I decided that switching to Percocet was a good idea. I’ve been on that for a couple of years now, and it gets the pain down to a manageable level. I’ve also tried different gels for pain. Some of them didn’t seem to work, and others worked a bit, but I mostly stopped using them because I can get more relief from medication and ice.
Have you found anyone or anything that actually helps with your pain relief? Other than everything mentioned above, not really.
What’s treatments are in your pain relief toolbox? (massage, medication, ice/heat, physical therapy)? Ibuprofen, Percocet, and ice are the must-haves. Sometimes I’ll use heat or pain-relief gels if I feel I need them.
What is your best piece of advice on how to best communicate when you’re in extreme pain?Just tell your caregiver what you need them to do to help you while you’re in pain. They’ll probably be more than happy to help 🙂
What is the best piece of advice you can give someone new to chronic pain? It’s OK to ask for help.
How do you stay in a good place with all of the physical issues you go through in a day? I remind myself that tomorrow is a new day and that my pain and tiredness will probably be better then. I also look forward to when I can take pain meds or lay down.
How do you stay in a good place with all of the mental issues that go along with controlling chronic pain? I just try to take things day by day, and I try to keep busy so I don’t dwell on any negative feelings.
How much of your day do you devote to your pain and trying to keep it in check? When I’m in pain, I have to remember when to take my pain meds and remember that I need to keep applying ice. I also usually have to lay down and take a nap when I’m in pain, and that takes up about an hour.
Do you tell people near you when you need help or when you’re in so much pain you need a break, at home? At work?I try to let my parents help me with things when I’m in pain, but sometimes it’s difficult to ask for help 🙂