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 their pain journey can learn from us and not have to wait days, weeks, months or even years to find the 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.
Today’s, Pain Awareness Month Interview is with Jane, who is Nicole’s, our September 2nd’s Interviews, mother. I meet Jane 4-5 years ago on a caregiving site and since then we have been involved in annual caregiving groups, co-hosted several chat rooms pertaining to caregiving, been involved in weekly chats and have watched all of out families grow and come together as long distance friends, well not just friends but long distance family. Jane is not just Nicole’s mother but her advocate, friend and biggest supporter in Nicole’s artistic growth. Jane host, “Let’s Get Organized” a chat that shows how one can be a caregiver and be organized at the same time. Her favorite organizational tool has to be the binder. To follow Jane and her chat, go to, Let’s Get Organized on Facebook. I have asked Jane to answer the questionnaire from her point of view in regards to Nicole and her pain. Her interview starts on the following page.
How long have you lived with chronic pain?
1A. Four years since she has been on the infused medication Remodulin to treat her pulmonary hypertension, however, she also has (which wasn’t diagnosed till after her pulmonary hypertension) benign hyper-mobility joint syndrome which is essentially loose joints… this has caused her knee pain for the most part ever since I can remember for which we were told it was growing pains (even though it was one sided for the most part). This does include other joints but the knees seem to be the major joint for her. One of the side effects of Remodulin is joint pain also so she gets a double whammy.
What do you understand is the cause of your pain?
2A. The majority of her pain is from her infused medication during a site change as the medication (which is equated with cancer drugs) works through her skin.
Describe your typical day. How is it impacted when your pain is mild? Moderate? Severe?
3A. On mild days she may wake up with joint pain, mostly in the knee, and sometimes it will be on the side where her site is or she will have low grade pain from her infusion site especially if it is getting old or didn’t “go to sleep”. On moderate days I would say this would be from maybe day 6 of a site change to day 12. She can function pretty well without limping and can do most of her chores. She will take prescription ibuprofen for pain which will be the worst in the evening. On severe days which is the day of the site change through day 6 when she can’t walk well, has extreme fatigue and taking both ibuprofen and Percocet by the time she can take more (especially if they aren’t staggered) she will be in quite a bit of pain. Lays down a lot and has a hard time doing chores… try to not schedule doctor’s appointments etc. If she has to go to appointment she may need to be pushed in a wheelchair.
What do you do to manage your pain (e.g. medications, complementary therapies, etc.)?
4A. Ice, heat for the old site for 24 hours, prescription ibuprofen, Percocet. There are topical ointments but she tends to stay away from them for one she says they don’t help enough to warrant them but I think she doesn’t like to put them on.
How did you figure out what approaches you needed to take to get your pain under control?
5A. Trial and error…. started with the hydrocodone (spelled wrong) and that didn’t take enough edge off the pain and it seemed to create dizziness and stomach issues. Asked the doctor for stronger narcotic so went with Percocet.
Is your pain management adequate? Can it be improved? If so, how?
6A. I think short of a stronger narcotic it is managed adequately…. the doctor has told her that no narcotic will take the pain away completely so this seems to work for her.
Has your attitude changed regarding pain as a result of your experience with chronic pain? how?
7A. In my opinion and observance, I don’t think Nicole really thought about it too much prior to the infused medication.
In your opinion, what is holding back your pain from improving or becoming stable? How do we break through those doors?
8A. The only thing holding Nicole back from improving the pain is stepping up to a stronger narcotic which she really doesn’t want to do because of side effects and how she feels. I don’t like seeing her in pain and it breaks my heart and I wish there was something that would take the pain away completely.
What does your healthcare provider do to help you with your chronic pain? What do they do that’s holding you back?
9A. The doctor and specialty pharmacy have worked together to help Nicole with her pain management and I am glad for this.
How has chronic pain impacted your family life? Your social life? Your work life?
10A. I think for me as a caregiver I see how it effects Nicole personally…. everything has to be planned in advance… holiday get together etc. are best at our house. Sometimes site changes can’t always be planned. Nicole can’t do stuff like she could without the pain… because of her oxygen use she has to plan everything in advance anyway and it is ruled by her battery life/access to electricity etc. but the pain throws a monkey wrench in it.
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?
11A. Nicole does talk to me about her pain but when I asked her to do this questionnaire she said “I don’t have chronic pain” so she doesn’t see herself with chronic pain I guess because she doesn’t have it every day. I think it is just one more thing that keeps her from having a normal life.
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.
12A. Nicole does talk to me about her pain but when I asked her to do this questionnaire she said “I don’t have chronic pain” so she doesn’t see herself with chronic pain I guess because she doesn’t have it every day. I think it is just one more thing that keeps her from having a normal life.
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?
13A. I would agree with Nicole’s answer on this… unless you are a caregiver for someone who has chronic pain and you see it from that aspect or you are the person with chronic pain you don’t really know/understand what this is like.
Where do you go? Who do you talk to? What sites do you go on, when you have just had to much?
14A. I am in a couple of FB groups for those on infusion medication for Remodulin and this helps with ideas etc.
Do you think your family, spouse or friends truly understand what and how your chronic pain is affecting you both physically and mentally?
15A. No, unless you actually spend time with Nicole during her pain period you do not know and while I can describe it they still won’t know. I only see what she goes through and for Nicole I know it must be extremely painful and I wish I could make it all better.
How much is, too much?
16A. I don’t know how to answer this question… I guess in Nicole’s case when the pain gets so bad it can’t be controlled and that outweighs the risk of having a port with a catheter into her heart to receive medicine that will be too much.
What type of treatments have you tried to rid you of your pain? Which works best?
17A. I have made cayenne salve which she said she liked but I can only make small amounts because it doesn’t last long and she doesn’t use that much; we have tried essential oils on the area, there is a gel that the specialty pharmacy sends us… she has also tried Voltaren which she gets from her rheumatologist for her benign hyper-mobility joint syndrome. Nicole isn’t thrilled with any of this. It is also difficult because you have to take into account the dressing/bandage that is over the infusion site and what effect the gel/salve will have on it.
Have you found anyone or anything that actually helps with your pain relief?
18A. At this point she is probably doing all she can do without getting into alternative therapies like acupuncture etc.
What’s treatments are in your pain relief toolbox? (massage, medication, ice/heat, physical therapy)?
19A. Pain medication, ice, rest
What is your best piece of advice on how to best communicate when you’re in extreme pain?
20A. I can usually tell when Nicole is in pain but she usually tells me also. I can tell when she has taken her narcotics by her eyes and her tiredness.
What is the best piece of advice you can give someone new to chronic pain?
21A. Talk to your doctor and figure out what works best for you as what works well for one may not be best for you.
How do you stay in a good place with all of the physical issues you go through in a day?
22A. As Nicole’s mom it is hard watching her be in so much pain and I really do believe she downplays the intensity of that pain. I just try to keep a positive attitude in knowing that each day it is going to get better.
How do you stay in a good place with all of the mental issues that go along with controlling chronic pain?
23A. Same as 22
How much of your day do you devote to your pain and trying to keep it in check?
24A. I have to do more for Nicole when she is in pain…. I try to take over the chores she does when she doesn’t have pain as well as get her ice, water etc. so she doesn’t have to get up.
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?
25A. I don’t think that Nicole asks me enough for help because she doesn’t want to burden me or she doesn’t think she should need help. I know about day 10 or so and she is still taking narcotic she gets upset because she shouldn’t have to be and I tell her that each site change is different and we can’t judge what it will be like.
Have a blessed day!
A special thank you to Jane for completing the questionnaire and for agreeing to share her side of Nicole’s pain journey. I hope all of you reading this better understand what it is that a parent of a child goes through when there is nothing we can do to help them to relieve their chronic pain. Hope to have you all back for tomorrows interview.