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It is important not to let your pain own you or define you but it is equally important to understand limits and not put yourself in a position to aggravate your pain. I would love to be the “fun” grandma (the one who takes them to the Wild life center or to Boston, or even apple picking) but I just can’t. I am the Grandma who is the good cook and also teaches them to love reading; just different.
When I posted this question I did so with the intent of seeing what manner of non-pharmacological interventions people were employing. This interventions should be part of one’s pain plan and rarely, if ever its sole component.
The two issues concerning non-pharma interventions which are greatly troubling are 1) there are hundreds of pain syndromes under the umbrella of pain and not all interventions are appropriate for all pain (exercise increases my pain quite a bit) and not all interventions work for everyone (tried acupuncture-my pain actually got worse). 20 Financial issues are a huge one for many non-pharma interventions; either no insurance, or insurance will not pay at all or pay an insufficient amount. Massage really helps keep the amount of opioids I need down and about the largest gap is two weeks (please note this in addition to meditation, guided imagery, and warmth to the base of my skull These plus two non-opioid pain medications keep my opioid use low-a goal for any medication. My insurance does not pay for any non-pharma interventions and we have gotten into a very tight financial situation so I have had to change from every 4 weeks instead of every other week. This plus the added stress of the financial situation has increased my need for breakthrough medication). MaineCare (our Medicaid) doesn’t allow opioids unless you have “failed their non-pharma interventions and non-opioid medications (and then a board decides. Their choice of non-pharma is PT, osteopathic manipulation, and Cognitive therapy (only research done was on patients using opioids). Now not only do these interventions not work for everyone, the first two are limited to 6 visits a year. There is no provision for transportation either. To see the importance placed on non-pharma interventions by new guidelines is ignorant.
Please sill love to hear what you are using. The warmth at the base of the skull I came across accidently. Unfortunately it only helps while it is being applied but it can avert taking medication for break through. My daughter has found it helpful for headaches as well. -
Enjoying the stories and pictures. Miss Kitty is a doll and I am sure she keeps you in line (I would just remind you and others, fleas are not the only problem with outside cats; be sure and check her for ticks-as well as yourself and others who may have ventured into the grass or woods-I have gotten bitten by the one my hubby brought in after golf). Has she brought you any gifts yet? I am so glad you are living your life to the fullest. It is sometimes easier to think only of our limitations rather than what we want and are capable of. Bon chance.
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Welcome GiGi to our circle of friends. You sound as if your road has been especially strenuous. Please know you will find friends, support, and information here at TPC. I spent 20+ years as a pain management nurse and the last six years living with persistent pain after brain surgery. I am sorry to say so many providers don’t live up to my expectations ; it is disappointing but there are some gems out there.. Knowing as much as we can about our pain and treatment options is so helpful and makes us stronger and feel less a victim. I know that you will find support, friendship, and information he to help you with your journey.
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SirenDestiny,
Welcome to TPC. I know you find help, friendship, and support from those of us living with persistent pain . I spent 20+ years as a pain management nurse and they developed persistent pain after brain surgery 6 years ago. It has been a learning experience to say the very least. My husband has his own pain as does my daughter so they are very supportive but trying to explain things to others-well you know all too well how hard it is. The thing I find hardest is I would like to be the “fun grandma” but I just can’t. Mornings are fairly good for me but afternoons aren’t. That goes for other functions as well so I can empathize with giving up your dreams.
I also used to have a cake decorating business and did all my children’s wedding cakes. That has pretty much gone by the wayside as you know it isn’t very pain friendly. On the other hand you don’t have to give up a love of cooking. A couple of others have mentioned the blog I do on cooking with pain. I try to give a lot of tips on making it easy and coping as well as providing recipes. Check the archives because the last blog was number eleven. I would direct you to the blogs period as there is a lot of information and support. Welcome! -
Just think of “venting” as part of your “pain plan”. Stress is not the friend of someone living with persistent pain no matter the cause. Yet pain in itself causes stress and certainly our activities of daily living contributes as well. Being able to talk about our pain and frustrations surrounding it allows us to “di-stress” a bit. Noki4 mentioned having young children to care for ; I have grandchildren who live with us about 70% of the time (we nearly always have one and some days have all three) and one day my son said the 10 year old would be here on our one Saturday kid free (we have all three every other Saturday). I had a bit of a meltdown-I love her dearly however I look forward to our “kid free” days. I can’t imagine how Noki4 manages being a full time mom; I am in awe. So see I just vented as well and yes it feels better, so please vent away; it is one of the reasons we are here.
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Thank you for thinking to do a survey on this important topic. It was a little difficult for me as I am a pain management nurse and have directed my pain plan pretty much (my doctor had confidence in me prior to developing persistent pain). It was already noted about the absence of non-pharmacological interventions which many of us use and are an important part of our pain plan. The last question was awkward because I have never had my dose decreased so I don’t know what would happen to my activity level-I am sure it would plummet because my constant pain level would fall into my breakthrough level (which can be horrendous). Four questions I would love to have seen on the survey are 1) what is your primary pain syndrome? There are so many; “chronic pain” is not just one 2) Has your provider ever asked you if you can afford a treatment/medication-this is a huge issue for many, 3) Do providers other than the one managing your pain, give you grief/problems with either believing in your pain or its treatment, 4) If you have been hospitalized for any reason, has your pain plan been maintained as best as possible? You may have noticed my use of provider-we need to remember it may not be a physician but an Advanced Practice Nurse or Physician Assistant who is your pain person. Again it is great you are addressing this.
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I’d hoped for some replies, would still like some. The girls haven’t been bothered by Grandma’s “Bad Pain Day” although I still haven’t had “the talk with them (the time just hasn’t been right). My son has been a little bit better about some grown-up time but hasn’t really improved on the planning ahead. Of course right now, the big issue (believe it or not) is him eating a whole avocado for lunch or dinner (when he fixes his own). We all love avocadoes but they are pricey ($1.59 each currently). Many times they take a couple of days to ripen and if they are in the drawer too long can get bad-anyway he takes them all and the rest of us don’t. I have said he could have a half of one a day but he still doesn’t get it. Frustrating. So what do other grandparents have to say about talking with there grandchildren about their persistent pain?
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I would like to get other grandparent’s thoughts on this; as I mentioned before we have grandchildren here fairly regularly since our son is living with us: all day M-F and a grand child or two spending the night on M, T, W, TH, and sometimes S. Dinners on those days and sometimes other days at well. Yesterday I had asked my son how many for dinner (it being Fri.) and he said only himself. I had a stressful day; doctor’s appointment, Walmart, and by the time I got home my head was hurting (I have persistent post craniotomy pain usually controlled by scheduled medication). I tried eating lunch first and unwinding (which can sometimes work) but the pain just worse. I took my breakthrough meds but that didn’t help by this point It took a second dose to get things down to bearable. I have to say I don’t think it has ever hurt so bad (or at least not in a long time. The pain is in the middle suture of the skull and is sharp-like a screwdriver or icepick wiggling around and sometimes also the whole area of the skull that was removed aches- yesterday it was both. It was so bad at one point I wanted to die. When the girls got home from school it was over except for the “after-pain”. The first thing Sora (8) said was could she stay for dinner? I told her “no” my head had been hurting too much. Then Elsa (5) said “I guess that means I can’t spend the night.” I agreed but both girls were upset as Grandma doesn’t say no to those things and of course my son was angry because they are his kids and he should be able to have them whenever he wants. Unfortunately when someone spends the night they always get to watch a kids movie with us and I get up with them in the morning. My husband and I had really looked forward to an “adult” night and I wasn’t cooking since I had felt so bad. My husband did speak with our son, but of course I am feeling terribly guilty. My thoughts are to sit my son and each of the older girls down (not at the same time) and 1) talk to them about my pain, explain how it feels, let them touch the indentation in my skull (it is about 4″x#” and about 1/4″ deep), and how it usually doesn’t hurt as bad as it did yesterday. When I say my head hurts most people think “headache” and while headaches are bad (I had migraines for 40 years) they are totally different from this; 2) Explain while we love being with them so much we do need some grown-up time as well, just one day a week; and 3) when possible we need to plan ahead, Grandma does much better when she knows what is going to happen. Any thoughts or suggestions on this?
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I did want to respond to this. I am also a Grandma with a persistent pain problem. I am in a little different situation as after having our nest actually empty for a short while, because of divorce, the economy, and other issues we now have grandchildren with us much of the time. While my son in theory is watching them, there are days or a time when he works at a part time job or is just with his friends but even when he is here, the situation can be chaotic. We never thought at this stage of our lives we would be doing diapers, making sure there are snacks for school, and mediating fights over the I-Pads. Their other grandparents are older than us so even though they have them sometimes, they tend to be the “fun” grandparents.
Since I don’t want my grandbabies to think of me as the one whose head hurts all the time, I find myself quicker to take breakthrough medication than before (and trying not to mention it). I need quiet time in the afternoons but that doesn’t always work out especially since naps are starting to go by the wayside. Grandpa is some help but he can’t always and he doesn’t have a clue as to how much more is involved doing dinner for six instead of two (although it is a compliment they would rather eat here than at their other grandparents).
So do I have any real tips for grandparenting when you have pain? Don’t feel guilty when you take medication for breakthrough rather than trying the non-pharmacological route first. Your babies don’t need you hurting and emotional (which I get when I have escalating pain). Try to talk about your pain appropriately for their age (Grammie has an owie in her head right now so let’s be quiet and you take care of your babies [or watch the I-Pad] for a while). Know your limitations; as much as would like to take them to the animal preserve afternoons are not great for me and I don’t want to be driving the car in pain). Enjoy them and let other things go if need be. And try not to get the “Hot Dog song” stuck in your mind (from the Disney channel). Both Grandpa and I get stuck on it and “aurgh!” -
Marinesargeant please, please write a letter to the facility addressed to the floor manager, the vice-president of nursing, and the CEO and tell them of your negative pain experience. We (in pain management) KNOW poorly treated post-operative pain can become chronic post operative pain. There is a cascading effect as well; when your pain is too severe you cannot perform in physical therapy as well as if your pain was low. I hope things have improved. Also I will mention just because these nurses aren’t too knowledgeable about pain and pain management, I hope they are doing a bowel program as well; an ounce of prevention.
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One thing that hasn’t been mentioned is delegating. As on oncology nurse we often reminded patient’s that they don’t have to it all by themselves. I know I like to “do it myself” but as a person with persistent pain I don’t. I do cooking, clean up from cooking, shopping, and laundry (at my own pace) and take out is fine if I am not up to cooking. My husband does the rest (although I have to admit I had to lower my standards a bit. My daughter does the dusting when she is over. Of course this is a different story if their is no one or family and friends are unwilling but don’t let pride get in the way of asking. Also if someone says “I want to help” or “what can I do” be specific and give them a task; “Could you get my groceries , it would be a huge help”; “afternoons are hard, can you take the kids for a couple of hours twice a week?”, “Would you be able to vacuum for me today (or maybe weekly)? Because my son moved in with us and we have the grandchildren here a lot, we converted my husband’s office into a bedroom for them and he moved into my office. There was a lot of paring down to do but I started way ahead doing a little each day so it wasn’t overwhelming. As I am retired, I got rid of a lot of books and journals. I am still working on paring down files but a little at a time.
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I am glad Maggie mentioned the importance of supportive devices when needed. So many people would rather risk falling or not be able to do more than use something which makes them (they think) look old or different. I saw this all the time when I worked in the hospital and when my mother (who had severe arthritis)was alive. I still have my cane where I can get to it easily (although I haven’t needed it for a couple of years). I think when people have arthritis (or other issues which can compromise stability) supportive devices should be presented not only as a safety issue but as a fashion statement or improving their “looks”-it might help.
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I would find out why the no on acetaminophen. Was it prescribed in addition to other medication?. I myself am very leery of NSAIDs such as ibuprofen as they have many serious side effects and are considered for short term use only. I do know people with arthritis who do well on low dose opioids and there are several other medications out there which might work for you. If you have not been there, the Arthritis Foundation is a good source of information. http://www.arthritistoday.org/#1. Check our education list on TPC website also. The sciatica may be more responsive to medication more specific for neuropathic pain as well.
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Been a while since I made it here-sorry about that; I am Janice and while I don’t have back pain (and my arthritis is limited to my hands) one thing I have seen to be very effective is water aerobics (or physical therapy). It does go by different names. The water gives support so there is less impact. I have a friend who has severe back pain and once she started low dose opioids and was no longer confined to a wheelchair because of the pain, she was able to partake in the water aerobics which did a world of good. Others have had good result with it also. Prescribed by your physician, insurance should pay for it (as it is a form of physical therapy). Good luck and know there is an answer out there-it just takes a while to find what works for you.
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