I forgot to edit in a clip I took yesterday (editing is harder when you have brain fog) so I will recap what I wanted to say: There was a time where I was not prescribed narcotics for my pain because the cons outweighed the pros. But now that my pain has become more debilitating, the pros outweigh the cons. I use my pain meds sparingly and on an as needed basis, which has really improved my quality of life. Though it took some time for me to accept I needed this medicine, with mixed feelings of guilt and resentment. Now, I see how much it helps so I am at peace with using it while we try to find a better pain management plan! P.S. Thank you so much for all the input y'all gave me about Medical MJ in yesterday's video. I have gotten new ideas from y'all on what to try next!
Chronically Jaquie I know its discouraging having to take chemicals can be. I would love to go natural but my body is so broken...brain specifically😕 I hope that it didn’t come across as advocating for the meds.❤️
I like how well you explain things to us. I too go to a pain management doctor. Medical Marijuana with high THC isn't legal in TX for my condition. CBD is with less than 0.3%THC. I take it in organic raw hemp style that's in a syringe. Sometimes in the oil type. I'm 60 yrs old, just started adding CBD last year. When in chronic pain, I have researched everything. Turmeric with Ginger. Frankincense oil. Hemp seeds, pumpkin seeds. Any food that's anti inflammatory. I totally understand your explanation. Pain seems to control my life. Exe: making family plans and having to cancel them. Missing out on fun activities makes me cry therefore getting depressed. And it take one pill to help the other. I hate that part. I hate having to take pain meds. So you won't get the guilt text from this old lady. I'm living it too. I'm so sorry you have to endure all this so very young. I'm praying for you. 🙏🏼 I want to go on trips, cruises, shopping, enjoy retirement,, but I can't. 😫 Does your pain get worse during bad weather like mine???
Chronically Jaquie I am concerned at the reaction to addiction and regulation of pain medications for people who have chronic pain. Many doctors even pain doctors are scared to prescribe, and many legitimate people suffer. I am a clinical therapist and I have seen many people abuse pain medications, but I am not someone who thinks all people who take pain medications are abusing them. I have watched people with chronic pain have their pain medications taken away or lowered so much that they are contemplating suicide. It’s a difficult situation and solutions are not easy, but over-reaction by our government is not the solution. I love that your an advocate. I was diagnosed with MS and so far I have not had to take any narcotics, however I know one day I may need to make that decision. Some days are very tough, my energy is low and pain is great, it’s hard to function. My greatest fear is not being able to work, as I love what I do. Continue to show the responsibility of dealing with chronic pain.
I really hate that narcotic pain killers get such a bad reputation these days because people have abused them. It makes doctors hesitant to prescribe them to patients who really need them. And when you go to the pharmacy to pick up ,they sometimes give you "that look". If you have a chronic illness you should be able to use every tool available, and not be made to feel guilty or that you're an addict. This has really gotten out of hand lately..
So true! As a migraine patient this is especially true. As soon as you tell them the migraine medications don't work for you you're labeled a drug seeker and ignored. I don't go to the ER no matter how bad the pain is, I know they won't do anything to help.
YES I AGREE WITH I HAVE CHRONIC PAINS ALL MY DOCTORS DON'T GIVE THEM TO ME WHY??? I USE TO BE ON PAIN MANAGEMENT FOR YRS.BUT WHEN I HAD THEM IT WAS AS NEEDED BASIS NOT TO MESS UP NEVER DID I BROKE MY KNEE CAP NOTHING AT ALL NO MEDS ON SITE OR HOME I HURT & I HAVE OTHER CHRONIC PAINS NO MEDS PERIOD DOCTORS ARE STRICT NOW OH!!!! MY
When I saw this it made me be a little happier bc it’s a bad day today with pain, nausea, and fatigue. You make these days easier because I know I’m not alone❤️
Thank you Jaquie for making this video. I’ve been struggling with this for SO long. I’ve needed narcotics for pain PRN and battle myself and feelings of guilt and resentment every time I need to use them. This video has given me a sense of strength and also a different perspective that will help me when I need to take my pain meds. I often feel like a failure or as if I’m doing something wrong because of the stigma surrounding narcotics, but my doctor has always told me it’s about my quality of life. Thank you for being willing to be open about this topic as I know it is going to help so many of us spoonies who need pain meds. ❤️
This video came at the perfect time for me! I’m relatively new to chronic illness (in the last year) and sometimes I get frustrated that I can’t do as much as everyone else. This helped remind me that it ISN’T everyone else. I’m not the only one fighting to find a balance between living my life and my health. Love you, Jaquie❤️
I've been on some sort of pain meds for most of my life. My chronic pain started when I was 14. I'm 59 now. I have a great dr. Who I trust and he trusts me. I've never abused them, always took as prescribed. Now hes retiring. I'm scared because no one will prescribe them anymore..all the doctors that i would like to see aren't allowed to take on any new patients. They want to to see either a PA or NP. Great for regular illnesses. But besides my chronic pain I have autoimmune diseases on top of leukemia. I need to see a doctor who knows. I have two months to find somebody that will treat my disabilities. I was with my last doctor for over 20 years so we know each other. How do you get that with the new doctor. Now that I ranted about that.....Jaquie never ever be ashamed of what you need to do or take to have the best quality of life that you can. You go girl
I can completely relate. My doctor I've had for years took a promotion out of state and it is IMPOSSIBLE to find an MD willing to take on patients. Nothing against PA's or NPs but as someone with more extensive health issues I'd prefer to have an actual doctor. At this point, it's looking like I'm going to have to settle for an NP at least for now and hope shes willing to do some investigative testing. My eye doctor recommended her so fingers crossed!
Don't give up! It took me 5-6 months to find a doctor to treat me (they wouldn't because I'm "so young" as if that has anything to do with it). There are many good doctors out there it just takes persistence & drive to find them. Help from family or friends is a major plus! Good luck!
You do what's best for you. Only you can judge what will work for you. I find that a lot of meds people use for things that I also have don't work for me and I need stronger or different. People outside you and your care team will have opinions but I feel you manage your life better than most. You inspire me by showing your reality, not a social media reality. Thank you, Jaquie for being authentically you! :-)
Good for you Jaquie there should be no stigma involved with taking the medication you need to be comfortable or pain free. Many of us who follow you have similar issues and I’m proud of you for talking about it.
I’ve been having a lot of high pain, high depression, low energy days, weeks, and months... Today wasn’t one of those. I actually woke up and felt reasonably well, and got out of bed by ten in the morning. That’s two or three hours earlier than usual. It is nice having a longer than normal day. I hope you feel better after using that medication. If it helps you to be happier and more productive, and you know you’re not abusing it, then it’s all fine.
You should NEVER feel ashamed of taking your medication. You and your doctors know you need it. It’s 2018, NO ONE should be in pain. Your amazing, Darling.
Thanks for the video, Jacqui! I’m part of a group called DPP (don’t punish pain) and we are having a nationwide rally on January 29th. It will be our third. Lots of people in many states are being cut cold turkey, or forcibly tapered, and even cancer patients are only being allowed NSAIDs in certain areas. Also, please check out ATIP (alliance for the treatment of intractable pain) as they are on the forefront of trying to undo some of the draconian measures that are affecting the chronically and (in some cases) terminally ill. I encourage everyone to do their research. Anyone that thinks this doesn’t affect them is sorely mistaken. One day, you WILL get very sick or injured and need these meds. If you are one of the lucky few that do not and you make it to an old age where you peacefully die in your sleep, that’s great, but you will absolutely have other family members and friends suffer. I don’t just fight for myself or the sick, I fight for everyone else that may need these meds one day. Think about the person you love most getting into a disastrous accident, or developing a painful disease...would you be ok with them only receiving Tylenol or ibuprofen? Of course not. Medical marijuana is great. It helps many people. But a lot of the country is lagging behind and has no access. On top of that, it isn’t enough for everyone, is another out of pocket cost for the disabled, and is no good when it comes to severe acute pain.
Feeling your pain.... I've been taking opiods for almost 20 years...and this Monday, yet again, I have to have another conversation with my Dr about the level of meds she prescribes as though I about, which I do not. It's frustrating and embarrassing. We deserve respect rather than suspicion. Be gentle to yourself and I wish you all the spoons you need!!
Debbie Scarborough Pain specialist appointment day is every month and so stressful my body has needed meds for years and with all of the new rules I feel threatened every time. That said it always seems to work out, but people like me that need these meds to function are the ones getting hurt when “The opioid crisis” gets discussed and doctors get punished for prescriptions
You should never feel ashamed for taking your medication because you and your doctor know what is best. I feel like chronic pain also falls under the invisible illness side of things because people think if we are laughing or go out of the house that we aren't in pain, but we are. Like you said sometimes we can push through it, sometimes we need our heating pad and rest and sometimes we need to take medication. We do what we do to live our best life. Praying for pain relief Jaquie.
Thank you for making this video and making me feel a little less alone as someone who has to be on pain meds as well. It can be so hard nowadays with the stigma of being on them! Family members, pharmacists, even doctors can give us such a hard time like we don’t give ourselves hard enough times already. Just because on the outside we may make ourselves up and look ok, doesn’t mean we are “faking our pain”, it may just mean we are having an easier day or hiding it like you said. It is so good watching this video and hearing someone else say aloud these things even though our stories are different.
Jacquie I can relate to your feelings with regard to use pains meds. My doctor prescribed me hydromorophone for pain related to MS and I felt so much guilt and shame taking them. My doctor has told me it's OK to use something for pain because suffering or trying to fight through it isn't worth being in pain. That's helped me a lot. I also have standing orders at my hospital for IV hydromorophone when my pain is really bad. You know your body and pain levels better than anyone so please remember it's never a bad thing to want to get pain relief when needed. Take care Jaquie.
Please don't feel guilty sweetheart, you are in a situation that is so tough to be in. I deal with chronic pain daily too and I do my best as well to use my pain meds sparingly. Your right, some days are just too much and your body needs that extra help. I am starting a chemo drug tomorrow to help my inflammatory arthritis and I am terrified. I appreciate your posts, they help me fight through. I am no spring chicken ha ha but I am going to do my best. Harlow is a great friend 🐾🐾🐶
Oh my gosh. I cannot thank you enough for this Jaquie!! I have severe RA and take a narcotic quite often. I too am wanting to go the medical marijuana route but it just now is getting going here in Arkansas. Thank you for your openness, honesty, and vulnerability. You’re a sweet miracle. ❤️
Never feel ashamed you are a fighter as well as brave!! All of us have our low days and sometimes I have weeks of pain and unable to go out. You are in my prayers and thoughts💗
Thank you for this video. It's right where I'm at. Just seeking pain management because some days the pain is so bad I can hardly function. That's no life. I don't like asking for help but I have recognized that I need it. You have shown me it's important to listen to my body.
I am literally right there with you today. Excruciating pain that is debilitating and has forced me to stay in bed. I couldn’t even eat much due to feeling ill from the pain. This is the video I needed to see to remind me that it is a day at a time with chronic illness. Thank you for being so transparent.
Please don’t be ashamed of needing pain meds. It’s nice tool to have in your kit. I didn’t know hippo was a trained therapist. Virtual hugs from the uk 🇬🇧
Nobody should judge anyone else. Nobody knows what anyone else is going through. You know what's best for you. You are a sensible, intelligent woman and you should never have to apologize for how you care for yourself. I have only the greatest respect for you. You manage your chronic illnesses very impressively. I hope you feel better soon.
I feel you so much on the pain right now. Pain meds are so hard. I'm a chronic and invisible illness warrior. Trying to balance narcotics are so hard. I'm try to push through with all of the things you try. I'm having neck surgery in a month and and a bit scared for surgery and pain manager. I hate feeling like a druggie sometimes but I think there should be no shame in sharing your life. You are helping countless people!!!
It eventually will go away, right? Not completely away, just that, this is a bad day and a good day is coming soon. As long as we give ourselves time to recover. I appreciate your optimism and perspective each day. Going thru pain and stressful life events are not helping. Sometimes it all catches up on you. Hoping for our adventuring bodies to come back to us soon. 💜
Hi Jaquie! My name is Alexandra and I have scoliosis... I have to wear a brace to school and to bed! It hurts everyday and every night but you, Harlow, and Judd are so great and inspirational! Thank you for changing my life! Xoxo Alex 🥰
I feel ya Jaquie. My chronic pain is really flaring up today too. I've got extreme arthritis in my hips, shoulders, & in my left ankle. I had to start taking pain meds 5yrs. ago. It royally sucks. Keep up the good fight jaquie & we'll both make it.
When harlow was laying with you in the beginning part of the video I could really feel her love for you. I'm so glad harlow can provide that comfort for you in times of pain. ❤ dogs are just amazing.
Just recently found your vlog and find it sooo inspiring!! I have a chronic pain syndrome and can relate to some of the things you talk about. In order for me to get up and go do my job everyday I need to take pain meds regularly or I cannot function. Some days I still cannot function especially in extremely cold weather (I am Canadian, so that can be an issue). I even go to work some days in lots of pain, because you gotta do what you gotta do, sometimes! I also tend to sprain my ankles quite easily or can get muscle injuries from work, going into a hospital because I am in pain and having to explain that this pain and the pain I take medication for is different, gets me a lot of funny looks. Also I have had a lot of experiences with doctors either trying to just give me over the counter pain meds (which don’t work) or tell me I should be fine with just taking my regular medication (even though I am in extreme pain). It’s amazing to have someone else out there who knows what I am going through and can explain it and show it to people. So thank you for being such an amazing person and showing the world what it means to be a person with an “invisible disability” and to try to help people understand exactly what chronic pain is and how bad it can get, even when we always seem to be smiling. Peace and God Bless!!
I'm not ashamed of taking pain meds either. They help to some degree but I'm still in constant debilitating pain 24/7. What I have had to learn is to pace myself and allow myself lots and lots of rest and quiet. Hugs Jaquie, 🙏🏻
Girl, you do what your body NEEDS. When it needs pain relief, you give it that!!! No fear of shame; you deserve to have your pain as well managed as well medical science can do. I’ve been on various narcotic pain medication since 2003; my first serious flare, and in ‘04, the introduction of Inflammatory Peripheral Arthritis. I’ve been on tramadol for 15 years, Darvocet at the same time, long before it was taken off the market. After a related surgery, the dropped the Darvocet in favor of Vicodin. Vicodin worked great until I got a month long migraine (turned out to be aseptic viral meningitis, and 8 days in hospital after a month of fever and migraine); Vicodin crapped out on me four days into the month of hell. My doctor at the time started me on Percocet, (this was in 2007) and while I got serious IV pain meds in hospital, (with Tylenol for my 103+ fever...not being able to take NSAID’s SUCKS), since then, I’ve been on the same dose of Percocet (10/650) for 12 years. It doesn’t help the way it used to, but it helps. When it’s really bad, I keep a chart so I know when I took it, and also to show doctors, why I had an uptick in my pain medication. I’ve since also been diagnosed with RA, and my insurance is fighting giving me the drug that controls both my UC and RA. So I end up needing more pain meds than usual. Which are harder to get and I don’t want to take anyway!!! It’s such a vicious circle. Plus, my pain meds keep me from sleeping, which does not help. Everyone deserves to live as pain-free as possible. No matter what. 💚💖💚
The issue of having good days and bad days is something I find the most frustrating about chronic illness. Although I'm thankful for the good days, when they happen, it's way hard to try to make plans for anything! Thanks for sharing with us and keeping it real.
Sorry, you are not feeling well. but it's good that you are taking care of your self. Because if you're in too much pain, not only is it hard for you to get through your day. But it's harder for your body to heal.
Thanks for the video. You are very informative. I have had chronic illness since 2000. I have been in pain management since 2008. There is a lot of stigma attached to PM. I have always been responsible and followed Doctors orders. I went off of narcotics for over 2 years and my quality of life went in the toilet. I had a meeting with my Doctor and went back into PM. PM and PT combined has given me a quality of life back. I have no guilt at all. Also, the trigger point injections you were talking about are pretty effective for me. I get them every 6 weeks like clock work. I feel that the medication combined with the injections and PT have given me my life back.
Hi Jaquie, so sorry you were not having a good day. I have really bad back pain and sometimes I just don't want to go anywhere but I'm still in high school so I don't really have a choice. I also found out my hips rotate which also causes some pain. I hope you feel better I am playing for you. Keep fighting and being amazing. Love from Ohio. 💙💙💙💙💙💙💙💙💙
Hope tomorrow is a better day✨ I had a random fever (and body pains) last night and hardly slept at all. Low energy today too. Hope you at least got to enjoy the Hippo snuggles!🐶
Pain meds may be difficult to be accepted by the people that know you take it, but YOU know that you are responsible and take it carefully, and that you really need them, so I am really proud that you are not ashamed of taking them! Also, there is a story that I want to tell you, and I hope that it can help you to get a good laugh in a hard day (but only if laughing isn't going to make the pain worse) I was coming back from the beach after watching the fireworks (too loud and too much light, but I like then) and I spotted about 30 people in someone's garage's gate. Me and my group (about 15 people) went there to see what was happening and what a suprise!! There was a senior golden retriever stealing food from the table! I remembered Harlow at that moment, stealing her Christmas gift. It was really funny!
I know exactly how you feel, I was in the same situation a few months ago. But, compared to your hospital stays and previous painful experiences, your stomach looks much less distended and better!!!!
Watching this was hard for me, especially as someone with a really low pain tolerance, because I could just tell the amount of immense pain you were in and I wanted to cry because I just feel so bad because I know how hard that would be for me.
I love to snuggle with my dogs when it gets tough. Never be ashamed to take care of yourself. I punished myself for years convincing myself that all forms of pain management was evil, and that some how I wasn’t disabled enough or that I was going to turn into some junkie. My family has addiction issues. Long story short I am now so bad off that I am nearly bed bound every day, even with pain management. I waited to long, didn’t listen to my body, or my doctors advice. I do now though, but I can’t turn back time and reverse the damage. I’m like you. I just take things day by day. I try not to think about tomorrow. If I do, that could become crippling. Also lots of puppy snuggles.
I truly hope you were able to get some relief from the pain. I completely understand the stigma about narcotic pain meds. I too have chronic pain. Give Harlow HUGS from Texas!!!
Thank you for this video and all that you do to educate people! Being a pain warrior myself, I KNOW your struggle. Sending prayers for much better days for you and all of us! ❤️
As someone who absolutely hates taking medication in genuine fear that I would become reliant on it. I rarely take pain killers and when I do I feel crappy for taking it, and I just deal with the pain until I just have to take something because it’s so high. Currently, I’m waking up every morning with severe muscle pain where I got the shingles, and doctors are too lazy to find out why, they show no interest in helping me. If someone needs medication, then it should be perfectly okay to take it, and I’m glad that you can take it without feeling guilty now. I guess the thing about it is also what other people say, people who aren’t chronically ill, don’t understand those who are. I get called lazy constantly when I have to make my body relax. Even the smallest things can drain all my energy some days, and they just don’t get it
As long as you take it as needed or as prescribed and as small dose as you can that works for you,you will be perfectly ok!!! Dont worry and if those drs dont help you GO FIND ANOTHER! You have drs to help you not ignore you and all that! If he/she dont help it dont help to find someobe else!!! Good luck and ill pray you get help and also find a medicine that helps!
Miranda Stephens I genuinely wish I could find another, but I live in a small town, and there’s only one GP who will take me, no other GP’s will take new patients (I guess they already have too many or something) And thank you!
@@RebeccaBeckery is there a way you can look for one in next town over but still fairly close? Can you find transportation through an insurance or something?
A lot of doctors (especially in smaller towns) will not even take a patient if any type of pain issue is mentioned because they refuse to write pain meds for fear of losing their license. It's a bit ridiculous.
Miranda Stephens Nope :/ closest town is about 10 minute drive and I can’t drive, my mam sold her car last year. Unless I get to move to the city, there’s nowhere I could go, sadly
Please don't feel that you need to be apologetic or feel the need to minimize the use of narcotics. So many of us here are in the same boat and we understand, the judgemental haters can just suck it. I am struggling with mmj not helping with the pain as well. One thing I can say is that I really hated the high thc at first but I was surprised how quickly my body adjusted and I no longer had the bad side effects. Give it a fair chance and hopefully you will find some relief. Since I got on mmj my doctor took away the narcotics (he implied that due to recent law changes that I wouldn't be able to get it anyway) so my next appointment is probably going to be stressful. I look forward to future videos on the subject. Good luck!
I’m glad you have something that helps. I also have hEDS, POTS and MCAS and honestly I just tough out the pain as much as possible. Narcotics just don’t work for me. All the side effects, and I wind up extremely dizzy and sleepy....still in pain but too disoriented to care and to sleepy to stay awake. NSAIDs either do nothing or cause MCAS reactions. I have a heating pad, TENS unit and home ultrasound and make do as best as I can. I hope you’re feeling better today.
It was over a year of constant debilitating pain before I gave in and used a narcotic pain reliever. So sad that they have such a bad reputation. My life is so much better now, not perfect of course, but better.
Thank you for sharing this. I started on narcotics in 2011 to supplement my nonnnarcotic pain medication. A bottle of 60 Percocet would last 4 months. In 2012 I ended up in kidney failure from too many NSAIDS and an SSRI that is used to treat chronic pain. My doctors changed my dosage from one or two percocets a day to 4. I still didn’t take that many a day. I’d only take them when I was in tears. I do take them now everyday 3 or 4 times a day along with a narcotic pain patch. Most people are completely shocked when they find out I wear a narcotic pain patch because I seem normal. They expect me to be high all the time. My family has come around and have realized that I need it to have a good quality of life. I have a few friends who still don’t understand and say to take Advil. Advil is what caused my kidney failure, so Advil and all other NSAIDS are off limits for me so I can keep my kidneys for as long as possible. I want to try medical marijuana and I finally qualify with the new rules in my state. However, it’s over $1500 a month to get about 2 oz of MMJ. And there are only 6 dispensaries, the closest one two hours away. That’s difficult because I can’t drive for that amount of time. I could drive one way but driving exhausts me and I would t be able to drive back home. I pay less than $20 a month for my narcotics. I’m hoping NJ makes it legal for everyone like other states have so the price will come down and it will be easier to get. The more chronic pain patients share their stories about how narcotics have improved their quality of life, the better. Hopefully we can change the stigma and make the government and even some doctors realize that it’s ok to take them if you truly do need them and nothing else has worked and or you are allergic to other meds.
I also hear you on the chronic daily pain. I feel like people expect me not to talk about it, it would go away. But the pain is still there. I'm just silent about it-because I don't want to be a burden. And I feel like I have a weak pain tolerance-until I learned one day, I was walking on my leg with three broken bones, so I guess i'm just really, really used to pain? I honestly can't remember the last time I was totally pain free. Even now I have a lot of stiffness as I'm typing this
I love your channel I watch it a lot I’ve never missed a video your dog is so cute I Kinda makes me happy when you’re with your friend Jeanae and her dog they’ll be best friends for life
I have systematic Lupus with kidney involvement, fibromyalgia, connective tissue disorder, and a rare kidney defect called MSK. I am on constant pain I receive narcotic pain meds to help when my pain is severe. But often times I will not take it and just suffer because I don't want to be judged by others. This video helped me so much. I been following you for a while now and I think you are so strong. It would be great to chat with you. My rheumatologist believes I may have EDS hypermobility type and is sending me to physical therapy. I would love to talk to you as you are so knowledgeable in this area.
It's called invisible illness for a reason and there are tools available to help. Some people abuse it and others judge but it's your body and your life. People are likely to not understand or empathize until theyre in a similar position or struggle. I know I've personally cut out relationships with people who dont understand or respect it from my life and i don't regret that. I am open about a lot because I want to break stigmas and for people to know it's okay and they're not alone. There can be multiple uses for the same thing. In the beginning I was nervous about taking meds in front of others but they exist for a reason and I have stopped caring. It gets a bad rap when people abuse it but it is always nice when you can better educate someone.
Girl I'm coming to the reality that I'd like to go and see the world and I can't do that with my energy level because of my chronic disabilities so I now welcome in the idea of being a part-time wheelchair user in order to allow me to have the freedom I so desperately want
Unless someone lives with chronic, severe pain they just can't understand our lives. Even when we're out and about we hurt, we're just trying to be normal. We may be smiling, but so often that smile is there to make my family feel better. I resent every pain pill I have to take.
I too have chronic pain, however because of CDC's guidlines my doctores have taken me from up to 7 oxycontin a day to 5 mgs vicodin 4 times a day. Is it any wonder why pain sufferes are committing suicide because thier pain medicine is being reduced or taken away completely. Even though I was not misusing my medication I am now considered opiate dependent because I use pain med to have a minimal quality of life. I have undergone 15 surgeries in the last 7 years and will under go my next one in April. Arthritis does not have a cure and is a constant process of deterioration in my my bones. I wish you well Jacquie and am glad that you are at least using it when you need to.
Hi Jaquie. I completely relate to what you were talking about today. And I'm glad you have come to the place where you feel that it's okay to use narcotics when the pain is so severe. It's kind of sad that we need to explain it to people but there is a stigma of taking opioids or narcotics for pain management in fact a lot of pain management doctors will not even prescribe opioids or narcotics anymore. You know with this whole opioid epidemic that they talk about it's made it very hard for people with genuine severe pain to get help. So I'm glad you've got doctors that are willing to give you the medication you need to help your pain. As far as medical marijuana is concerned I have found the only way that it helps with pain is to smoke it or to vaporize it. I have taken many different kinds of CBD oil CBD and THC oil and none of them really work. the only thing that worked was when I smoked it. Which I don't like to do I would much rather take the oil. But I Vape it so I'm not getting a harsh smoke in me at all. Anyways that's just a thought. I'm so glad you made this video this is one of my favorite videos that you've made and I've been watching you for a long long time. It was just so real and so transparent of you.
Sorry today was a bad day, I’ve been watching you for a while now I was wondering if you still use that weighted blanket for your pain you recommended a while back. Ever since you made it I have been considering ordering one for my anxiety. I was just wondering if you still found it useful?
I don't know if you or anyone you know sews, but I saw a tutorial on Pinterest to make one and it's about half the price to make it yourself. I made one and it works great. mine is only 6 pounds but it still helps comfort me when I'm having a panic attack. if you're interested, I can try to send you the link to the video. it's actually surprisingly simple.
My pain management m.d. calls it "break through pain". Everyone has a different threshold for pain. If you use the medicine as needed, as prescribed, and do your follow up appt. The risk for addiction or damage to the body is low from what the doctors tell me. The choice is between you and your m.d. No one can judge because everyones experience is different. Hugs
Katie Johnson the choice is now in the governments hands the doctor get punished for prescriptions and the rules change all the time so most just refuse to treat chronic pain patients, what can we do?
you should NEVER EVER feel ashamed about taking something that will help your pain you do whatever you need to do to get yourself through the day! stay strong Jaquie
Your absolutely right Jacquie you have no reason to be ashamed your a beautiful person you take the meds you need and if people judge you for that they are not worth a second of your time your awesome Jacquie and if those closed mined people can't see that it's their loss you keep being the awesome fighter your are love you Jacquie
My Doctor has only now got me to realize that I should manage the pain Not let the pain manage me .... been a long lesson but one I now feel more comfortable with and also it is fine to lie down and rest through the day if I need it .... I thought my family would see it as being lazy .... but they are ok with it .... funny how we sometimes have trouble having to adapt to forced life change .... sending you hugs Jaquie
Your amazingly strong keep going and do never forget that you’ve come so far and your fighting so much and you are my role model for the reason that you remind me to never give up!! 😁😁😁
I take pain meds too due to arthritis in my shoulder and hand. I had to cut back on the amount to meet Kaisers standards, but the smaller dosage still helps, especially when it gets cold and rainy and my arthritis really flares up badly. I’m even taking less than the prescribed amount so I am thankful for that, because I can increase a little when the pain is really bad. I was using THC drops (CBD does nothing for me) until my Kaiser doc told me I was breaking their rules and couldn’t take both as I would have to give up one for the other. After waiting several months to finally see a pain management doctor, he met with me for a long time and told me it’s okay as long as I abstain for 30 days prior to the 6 month urine test to allow the THC to leave my system. I hate that Kaiser rules make me feel like a criminal. I HATE the feeling of being high so I only used the THC at bedtime and rarely during the day, and never if I have to drive somewhere. I have my Smart Drive to help me with pushing my wheelchair because the arthritis prevents range of motion allowing me to push my chair efficiently. Heating pads, reaching tools, special braces and rest also help manage my pain. But nothing works 100% of the time. I wish I had a dog to snuggle with. I have my cat, but cats only snuggle when they want to. I’m glad you have ways to manage your pain, and you should NOT feel guilty for doing what you need to do to manage it.
It's great that you don't feel ashamed and are helping break stigma. I have ehlers danlos syndrome too. Sorry but I have a genuine question (perhaps I need educating).. if you're in so much pain that you need to use intravenous opiates how can you actually plan to film at the same time and have the capacity to do it? Like, intravenous opiates are usually reserved for people at the high end of the scale eg in labour pain, in traumatic injury etc (mind boggling pain). Or have you just built a higher tolerance?
In this video Jaquie isn't using intravenous pain medication - she is using liquid formulations that she's pushing through her feeding tube. I agree that I personally couldn't handle filming on a day when I need to take my extra breakthrough pain medication, but I guess we all cope with pain differently?
I have had lupus and fibromyalgia as well as spinal osteoporosis for 25 years and on a massive combination of different pain meds for the chronic pain all of that time. You name a medication and I’m sure I’m either on it or have been in the past. At the moment I take steroids, fentanyl, morphine and anti depressants, as well as various other meds to combat the side effects of the big ones. No one wants to be taking that much but if I didn’t I would hardly be able to get out of bed most days.
The stigma and prejudice society now feels about narcotics use is brutal! It is very sad and frustrating to know, see and hear all the stories of abuse, dependency and overdoses. I never share with anyone, except family and my medical team that I take medication. Even if you have to go to an ER or clinic in a new place (where there not familiar with your medical history or you) due to an emergency you are treated awkwardly or with prejudice when you list your medications and they see a narcotic. Usually they state right away “we don’t prescribe narcotics here”, or something to that effect, even before you explain why the visit was necessary. My doctors make sure I always have the medication I need so the last thing I would Do is visit an ER or unfamiliar clinic, and wait hours for narcotics. But because of all the abuse and addiction being shared with society a lot of people are sceptical and down right rude to chronic pain warriors when it comes to narcotics. So my attitude now is to keep it to myself. I have an amazing medical team (same doctors and other medical specialists) who know me, have operated or worked on me for over 17 years now. I take my medication and get through each day in what ever way I need to to get the most out of each day. Life is to short and we could leave this life at any time, so I want to live and enjoy my life with family and friends every day. Never again will I allow anyone to criticize or make me feel uncomfortable about the need for narcotics in my treatment routine. Jaquie you do what ever you need to do to get the most out of each day. We know that sometimes resting, heat or even sleeping wouldn’t be possible on some of our worse days. Some days we might not even be able to barely function if we did not get the benefits of our medication. I hope your Medical Cannabis journey progresses and begins to give you some relief. You’ve always been one to try any treatment and give it every chance! Just like your negative experiences with IVIG and Zolaire - eventually you pushed through and are now seeing and feeling the benefits. Best wishes.
Hi Jaquie, If pain meds help you, then pain meds are right for you. I have had occasions when i have needed pain meds and I took them because it was right. God bless you Jaquie.
Thanks for this! I get so tired of people (a lot of relatives) who don't like the fact I use pain meds. I can't function without them. When you can't get out of bed to pee without crying, you need pain meds. They have never seen me stoned or acting goofy. My memory isn't always the best but it never really was. I'm not falling all over the place (One fall and it was a slippery rug situation!) So thanks again to remind ME it is okay!
There is never any problem using pain meds. If you hurt, its better to be more comfortable than not. I know I myself am guilty of putting off pain meds because of a big stigma against meds around me but if nothing else has worked.
I know what you say, still living it. Herniated disc surgery. 11 years on pain meds (first Hydrocodone. Currently Suboxone).🥺😒 So close to being OFF for GOOD. 🙏🏼
Jacquie can I ask what narcotic pain medication you are taking? I only ask as I'm on fentanyl patch 37mcg and I change this patch every 72hrs. I am finding that the fentanyl patch works for everyday joint pain, funny pain etc. But with my severe acute attacks that I have with my pain, I require morphine that I administer myself as a subcutaneous injection 5mg (I save my morphine sub-cut injections for severe bad days when my pain is excruciatingly painful) I feel it would be helpful to learn from each other what pain medication opiates we are prescribed as not everyone is aware of the choices of different pain medication that are available to people like us that have a lot of chronic illnesses and suffer with daily pain. I hope the pain medication helped ease your pain levels to a manageable level. Harlow is just awesome. Take it easy Jaquie and please never feel bad for taking narcotics, only people like us that deal with high levels of severe pain everyday will truly understand and be able to comprehend what pain in this scale is really like. You are doing awesome Jacquie 👍
I have morphine for chronique kidney pain. The majority of specialists think and treat me as if i'm a junky, only my gp knows the truth because she gives me a new prescription when i show her that i have only used a few of the last batch and they are past there use before date. Some of my symptoms have even been accepted as side effects of morphine being in my bag,without having taken any for over 3 months. I do not want to have them and i do not want to take them but the rare times that i need them i am very thankfull to have them. When used for their correct purpose there is no reason to be ashamed.
Reading everyone’s comments, am crying for you all. All I can say is 🙏🏼🙏🏼, prayers! God said to pray in His son’s name. Pray for yourself, ask Prayer Angels and Prayer Warriors to pray. Don’t hesitate.
Ari De neros You are so very welcome! I’ve had years of pain. What helped was knowing others were loving me and praying for me. I wish for the best for you 🤝😇🙏🏼
If you use pain meds to control pain there is no shame. If you use it to get "high" then there is a problem. It's up to the doctors to decide with you what works, not up to others to judge. Same with MJ if you use it to help with a medical issue, there is no shame, again you and your doctor decide. It isn't up to others to judge you.
I forgot to edit in a clip I took yesterday (editing is harder when you have brain fog) so I will recap what I wanted to say: There was a time where I was not prescribed narcotics for my pain because the cons outweighed the pros. But now that my pain has become more debilitating, the pros outweigh the cons. I use my pain meds sparingly and on an as needed basis, which has really improved my quality of life. Though it took some time for me to accept I needed this medicine, with mixed feelings of guilt and resentment. Now, I see how much it helps so I am at peace with using it while we try to find a better pain management plan!
P.S. Thank you so much for all the input y'all gave me about Medical MJ in yesterday's video. I have gotten new ideas from y'all on what to try next!
Chronically Jaquie I know its discouraging having to take chemicals can be. I would love to go natural but my body is so broken...brain specifically😕 I hope that it didn’t come across as advocating for the meds.❤️
maybe i missed it but what pain med do u take?
Melanie McAulay She doesn’t normally say.
I like how well you explain things to us.
I too go to a pain management doctor. Medical Marijuana with high THC isn't legal in TX for my condition. CBD is with less than 0.3%THC. I take it in organic raw hemp style that's in a syringe. Sometimes in the oil type. I'm 60 yrs old, just started adding CBD last year.
When in chronic pain, I have researched everything. Turmeric with Ginger. Frankincense oil. Hemp seeds, pumpkin seeds. Any food that's anti inflammatory.
I totally understand your explanation.
Pain seems to control my life. Exe: making family plans and having to cancel them. Missing out on fun activities makes me cry therefore getting depressed. And it take one pill to help the other. I hate that part. I hate having to take pain meds.
So you won't get the guilt text from this old lady. I'm living it too.
I'm so sorry you have to endure all this so very young. I'm praying for you. 🙏🏼
I want to go on trips, cruises, shopping, enjoy retirement,, but I can't. 😫
Does your pain get worse during bad weather like mine???
Chronically Jaquie I am concerned at the reaction to addiction and regulation of pain medications for people who have chronic pain. Many doctors even pain doctors are scared to prescribe, and many legitimate people suffer. I am a clinical therapist and I have seen many people abuse pain medications, but I am not someone who thinks all people who take pain medications are abusing them. I have watched people with chronic pain have their pain medications taken away or lowered so much that they are contemplating suicide. It’s a difficult situation and solutions are not easy, but over-reaction by our government is not the solution. I love that your an advocate. I was diagnosed with MS and so far I have not had to take any narcotics, however I know one day I may need to make that decision. Some days are very tough, my energy is low and pain is great, it’s hard to function. My greatest fear is not being able to work, as I love what I do. Continue to show the responsibility of dealing with chronic pain.
I really hate that narcotic pain killers get such a bad reputation these days because people have abused them. It makes doctors hesitant to prescribe them to patients who really need them. And when you go to the pharmacy to pick up ,they sometimes give you "that look". If you have a chronic illness you should be able to use every tool available, and not be made to feel guilty or that you're an addict. This has really gotten out of hand lately..
I totally agree.
Amen!
So true! As a migraine patient this is especially true. As soon as you tell them the migraine medications don't work for you you're labeled a drug seeker and ignored. I don't go to the ER no matter how bad the pain is, I know they won't do anything to help.
YES I AGREE WITH I HAVE CHRONIC PAINS ALL MY DOCTORS DON'T GIVE THEM TO ME WHY??? I USE TO BE ON PAIN MANAGEMENT FOR YRS.BUT WHEN I HAD THEM IT WAS AS NEEDED BASIS NOT TO MESS UP NEVER DID I BROKE MY KNEE CAP NOTHING AT ALL NO MEDS ON SITE OR HOME I HURT & I HAVE OTHER CHRONIC PAINS NO MEDS PERIOD DOCTORS ARE STRICT NOW OH!!!! MY
Yep agree!
When I saw this it made me be a little happier bc it’s a bad day today with pain, nausea, and fatigue. You make these days easier because I know I’m not alone❤️
Thank you Jaquie for making this video. I’ve been struggling with this for SO long. I’ve needed narcotics for pain PRN and battle myself and feelings of guilt and resentment every time I need to use them. This video has given me a sense of strength and also a different perspective that will help me when I need to take my pain meds. I often feel like a failure or as if I’m doing something wrong because of the stigma surrounding narcotics, but my doctor has always told me it’s about my quality of life. Thank you for being willing to be open about this topic as I know it is going to help so many of us spoonies who need pain meds. ❤️
Mallory Thill,,,Ditto here
This video came at the perfect time for me! I’m relatively new to chronic illness (in the last year) and sometimes I get frustrated that I can’t do as much as everyone else. This helped remind me that it ISN’T everyone else. I’m not the only one fighting to find a balance between living my life and my health. Love you, Jaquie❤️
I've been on some sort of pain meds for most of my life. My chronic pain started when I was 14. I'm 59 now. I have a great dr. Who I trust and he trusts me. I've never abused them, always took as prescribed. Now hes retiring. I'm scared because no one will prescribe them anymore..all the doctors that i would like to see aren't allowed to take on any new patients. They want to to see either a PA or NP. Great for regular illnesses. But besides my chronic pain I have autoimmune diseases on top of leukemia. I need to see a doctor who knows. I have two months to find somebody that will treat my disabilities. I was with my last doctor for over 20 years so we know each other. How do you get that with the new doctor. Now that I ranted about that.....Jaquie never ever be ashamed of what you need to do or take to have the best quality of life that you can. You go girl
I can completely relate. My doctor I've had for years took a promotion out of state and it is IMPOSSIBLE to find an MD willing to take on patients. Nothing against PA's or NPs but as someone with more extensive health issues I'd prefer to have an actual doctor. At this point, it's looking like I'm going to have to settle for an NP at least for now and hope shes willing to do some investigative testing. My eye doctor recommended her so fingers crossed!
Don't give up! It took me 5-6 months to find a doctor to treat me (they wouldn't because I'm "so young" as if that has anything to do with it). There are many good doctors out there it just takes persistence & drive to find them. Help from family or friends is a major plus! Good luck!
You do what's best for you. Only you can judge what will work for you. I find that a lot of meds people use for things that I also have don't work for me and I need stronger or different. People outside you and your care team will have opinions but I feel you manage your life better than most. You inspire me by showing your reality, not a social media reality. Thank you, Jaquie for being authentically you! :-)
Good for you Jaquie there should be no stigma involved with taking the medication you need to be comfortable or pain free. Many of us who follow you have similar issues and I’m proud of you for talking about it.
I’ve been having a lot of high pain, high depression, low energy days, weeks, and months... Today wasn’t one of those. I actually woke up and felt reasonably well, and got out of bed by ten in the morning. That’s two or three hours earlier than usual. It is nice having a longer than normal day. I hope you feel better after using that medication. If it helps you to be happier and more productive, and you know you’re not abusing it, then it’s all fine.
You should NEVER feel ashamed of taking your medication. You and your doctors know you need it. It’s 2018, NO ONE should be in pain. Your amazing, Darling.
Sorry had to but it’s 2019😂
10Taylor28 Dude, it’s 2019
Secret 3263 Fair point. I’ll remember it’s 2019 right around the time it turns 2020, lol.
10Taylor28 okay?¿😂
Thanks for the video, Jacqui! I’m part of a group called DPP (don’t punish pain) and we are having a nationwide rally on January 29th. It will be our third. Lots of people in many states are being cut cold turkey, or forcibly tapered, and even cancer patients are only being allowed NSAIDs in certain areas. Also, please check out ATIP (alliance for the treatment of intractable pain) as they are on the forefront of trying to undo some of the draconian measures that are affecting the chronically and (in some cases) terminally ill. I encourage everyone to do their research. Anyone that thinks this doesn’t affect them is sorely mistaken. One day, you WILL get very sick or injured and need these meds. If you are one of the lucky few that do not and you make it to an old age where you peacefully die in your sleep, that’s great, but you will absolutely have other family members and friends suffer. I don’t just fight for myself or the sick, I fight for everyone else that may need these meds one day. Think about the person you love most getting into a disastrous accident, or developing a painful disease...would you be ok with them only receiving Tylenol or ibuprofen? Of course not. Medical marijuana is great. It helps many people. But a lot of the country is lagging behind and has no access. On top of that, it isn’t enough for everyone, is another out of pocket cost for the disabled, and is no good when it comes to severe acute pain.
Feeling your pain.... I've been taking opiods for almost 20 years...and this Monday, yet again, I have to have another conversation with my Dr about the level of meds she prescribes as though I about, which I do not. It's frustrating and embarrassing. We deserve respect rather than suspicion. Be gentle to yourself and I wish you all the spoons you need!!
Debbie Scarborough Pain specialist appointment day is every month and so stressful my body has needed meds for years and with all of the new rules I feel threatened every time. That said it always seems to work out, but people like me that need these meds to function are the ones getting hurt when “The opioid crisis” gets discussed and doctors get punished for prescriptions
You should never feel ashamed for taking your medication because you and your doctor know what is best. I feel like chronic pain also falls under the invisible illness side of things because people think if we are laughing or go out of the house that we aren't in pain, but we are. Like you said sometimes we can push through it, sometimes we need our heating pad and rest and sometimes we need to take medication. We do what we do to live our best life. Praying for pain relief Jaquie.
Thank you for making this video and making me feel a little less alone as someone who has to be on pain meds as well. It can be so hard nowadays with the stigma of being on them! Family members, pharmacists, even doctors can give us such a hard time like we don’t give ourselves hard enough times already. Just because on the outside we may make ourselves up and look ok, doesn’t mean we are “faking our pain”, it may just mean we are having an easier day or hiding it like you said. It is so good watching this video and hearing someone else say aloud these things even though our stories are different.
Jacquie I can relate to your feelings with regard to use pains meds. My doctor prescribed me hydromorophone for pain related to MS and I felt so much guilt and shame taking them. My doctor has told me it's OK to use something for pain because suffering or trying to fight through it isn't worth being in pain. That's helped me a lot. I also have standing orders at my hospital for IV hydromorophone when my pain is really bad. You know your body and pain levels better than anyone so please remember it's never a bad thing to want to get pain relief when needed. Take care Jaquie.
Please don't feel guilty sweetheart, you are in a situation that is so tough to be in. I deal with chronic pain daily too and I do my best as well to use my pain meds sparingly. Your right, some days are just too much and your body needs that extra help. I am starting a chemo drug tomorrow to help my inflammatory arthritis and I am terrified. I appreciate your posts, they help me fight through.
I am no spring chicken ha ha but I am going to do my best.
Harlow is a great friend 🐾🐾🐶
Oh my gosh. I cannot thank you enough for this Jaquie!! I have severe RA and take a narcotic quite often. I too am wanting to go the medical marijuana route but it just now is getting going here in Arkansas. Thank you for your openness, honesty, and vulnerability. You’re a sweet miracle. ❤️
Never feel ashamed you are a fighter as well as brave!! All of us have our low days and sometimes I have weeks of pain and unable to go out. You are in my prayers and thoughts💗
THANK YOU SO MUCH! THANK YOU SO MUCH FOR NOT GIVING INTO THE STIGMA AND FOR NOT FEELING ASHAMED!
Thank you for this video. It's right where I'm at. Just seeking pain management because some days the pain is so bad I can hardly function. That's no life. I don't like asking for help but I have recognized that I need it. You have shown me it's important to listen to my body.
I am literally right there with you today. Excruciating pain that is debilitating and has forced me to stay in bed. I couldn’t even eat much due to feeling ill from the pain. This is the video I needed to see to remind me that it is a day at a time with chronic illness. Thank you for being so transparent.
I love Harlow the way she takes good care of you Ms. Jaquie. You're such a good team.
You do what u have to do to get thru the pain. You r so good at explaining things. I envy ur relationship with Harlow. Hope u feel better
Please don’t be ashamed of needing pain meds. It’s nice tool to have in your kit.
I didn’t know hippo was a trained therapist.
Virtual hugs from the uk 🇬🇧
Nobody should judge anyone else. Nobody knows what anyone else is going through. You know what's best for you. You are a sensible, intelligent woman and you should never have to apologize for how you care for yourself. I have only the greatest respect for you. You manage your chronic illnesses very impressively. I hope you feel better soon.
I feel you so much on the pain right now. Pain meds are so hard. I'm a chronic and invisible illness warrior. Trying to balance narcotics are so hard. I'm try to push through with all of the things you try. I'm having neck surgery in a month and and a bit scared for surgery and pain manager. I hate feeling like a druggie sometimes but I think there should be no shame in sharing your life. You are helping countless people!!!
I recently found your channel and it's amazing! I was diagnosed with eDS and epilepsy after my twins were born last year. You are an inspiration!
sorry today wasn't the best! hopefully tomorrow's better.
It eventually will go away, right? Not completely away, just that, this is a bad day and a good day is coming soon. As long as we give ourselves time to recover. I appreciate your optimism and perspective each day. Going thru pain and stressful life events are not helping. Sometimes it all catches up on you. Hoping for our adventuring bodies to come back to us soon. 💜
Hi Jaquie! My name is Alexandra and I have scoliosis... I have to wear a brace to school and to bed! It hurts everyday and every night but you, Harlow, and Judd are so great and inspirational! Thank you for changing my life! Xoxo Alex 🥰
I feel ya Jaquie. My chronic pain is really flaring up today too. I've got extreme arthritis in my hips, shoulders, & in my left ankle. I had to start taking pain meds 5yrs. ago. It royally sucks. Keep up the good fight jaquie & we'll both make it.
When harlow was laying with you in the beginning part of the video I could really feel her love for you. I'm so glad harlow can provide that comfort for you in times of pain. ❤ dogs are just amazing.
You should never be ashamed of taking pain meds Jaquie you have to do what’s right for you
Just recently found your vlog and find it sooo inspiring!! I have a chronic pain syndrome and can relate to some of the things you talk about.
In order for me to get up and go do my job everyday I need to take pain meds regularly or I cannot function. Some days I still cannot function especially in extremely cold weather (I am Canadian, so that can be an issue). I even go to work some days in lots of pain, because you gotta do what you gotta do, sometimes! I also tend to sprain my ankles quite easily or can get muscle injuries from work, going into a hospital because I am in pain and having to explain that this pain and the pain I take medication for is different, gets me a lot of funny looks. Also I have had a lot of experiences with doctors either trying to just give me over the counter pain meds (which don’t work) or tell me I should be fine with just taking my regular medication (even though I am in extreme pain).
It’s amazing to have someone else out there who knows what I am going through and can explain it and show it to people. So thank you for being such an amazing person and showing the world what it means to be a person with an “invisible disability” and to try to help people understand exactly what chronic pain is and how bad it can get, even when we always seem to be smiling.
Peace and God Bless!!
I'm not ashamed of taking pain meds either. They help to some degree but I'm still in constant debilitating pain 24/7. What I have had to learn is to pace myself and allow myself lots and lots of rest and quiet. Hugs Jaquie, 🙏🏻
second! Harlow looks like such a good snuggler:) you rock miss jaquie!
Girl, you do what your body NEEDS. When it needs pain relief, you give it that!!! No fear of shame; you deserve to have your pain as well managed as well medical science can do.
I’ve been on various narcotic pain medication since 2003; my first serious flare, and in ‘04, the introduction of Inflammatory Peripheral Arthritis.
I’ve been on tramadol for 15 years, Darvocet at the same time, long before it was taken off the market.
After a related surgery, the dropped the Darvocet in favor of Vicodin.
Vicodin worked great until I got a month long migraine (turned out to be aseptic viral meningitis, and 8 days in hospital after a month of fever and migraine); Vicodin crapped out on me four days into the month of hell.
My doctor at the time started me on Percocet, (this was in 2007) and while I got serious IV pain meds in hospital, (with Tylenol for my 103+ fever...not being able to take NSAID’s SUCKS), since then, I’ve been on the same dose of Percocet (10/650) for 12 years.
It doesn’t help the way it used to, but it helps.
When it’s really bad, I keep a chart so I know when I took it, and also to show doctors, why I had an uptick in my pain medication.
I’ve since also been diagnosed with RA, and my insurance is fighting giving me the drug that controls both my UC and RA.
So I end up needing more pain meds than usual. Which are harder to get and I don’t want to take anyway!!!
It’s such a vicious circle.
Plus, my pain meds keep me from sleeping, which does not help.
Everyone deserves to live as pain-free as possible.
No matter what.
💚💖💚
I feel ya. Hang in there. 🙌🏽✊🏼💪🏽 Life is too short to suffer. If you need something that helps, then you do.
The issue of having good days and bad days is something I find the most frustrating about chronic illness. Although I'm thankful for the good days, when they happen, it's way hard to try to make plans for anything! Thanks for sharing with us and keeping it real.
Sorry, you are not feeling well. but it's good that you are taking care of your self. Because if you're in too much pain, not only is it hard for you to get through your day. But it's harder for your body to heal.
We support you whatever you do
Thanks for the video. You are very informative. I have had chronic illness since 2000. I have been in pain management since 2008. There is a lot of stigma attached to PM. I have always been responsible and followed Doctors orders. I went off of narcotics for over 2 years and my quality of life went in the toilet. I had a meeting with my Doctor and went back into PM. PM and PT combined has given me a quality of life back. I have no guilt at all. Also, the trigger point injections you were talking about are pretty effective for me. I get them every 6 weeks like clock work. I feel that the medication combined with the injections and PT have given me my life back.
Thumbs up for pushing through and uploading this video. Thumbs down to pain!
Hi Jaquie, so sorry you were not having a good day. I have really bad back pain and sometimes I just don't want to go anywhere but I'm still in high school so I don't really have a choice. I also found out my hips rotate which also causes some pain. I hope you feel better I am playing for you. Keep fighting and being amazing. Love from Ohio. 💙💙💙💙💙💙💙💙💙
Hope tomorrow is a better day✨
I had a random fever (and body pains) last night and hardly slept at all. Low energy today too. Hope you at least got to enjoy the Hippo snuggles!🐶
Pain meds may be difficult to be accepted by the people that know you take it, but YOU know that you are responsible and take it carefully, and that you really need them, so I am really proud that you are not ashamed of taking them! Also, there is a story that I want to tell you, and I hope that it can help you to get a good laugh in a hard day (but only if laughing isn't going to make the pain worse)
I was coming back from the beach after watching the fireworks (too loud and too much light, but I like then) and I spotted about 30 people in someone's garage's gate. Me and my group (about 15 people) went there to see what was happening and what a suprise!! There was a senior golden retriever stealing food from the table! I remembered Harlow at that moment, stealing her Christmas gift. It was really funny!
I know exactly how you feel, I was in the same situation a few months ago. But, compared to your hospital stays and previous painful experiences, your stomach looks much less distended and better!!!!
Watching this was hard for me, especially as someone with a really low pain tolerance, because I could just tell the amount of immense pain you were in and I wanted to cry because I just feel so bad because I know how hard that would be for me.
I love to snuggle with my dogs when it gets tough. Never be ashamed to take care of yourself. I punished myself for years convincing myself that all forms of pain management was evil, and that some how I wasn’t disabled enough or that I was going to turn into some junkie. My family has addiction issues. Long story short I am now so bad off that I am nearly bed bound every day, even with pain management. I waited to long, didn’t listen to my body, or my doctors advice. I do now though, but I can’t turn back time and reverse the damage. I’m like you. I just take things day by day. I try not to think about tomorrow. If I do, that could become crippling. Also lots of puppy snuggles.
I truly hope you were able to get some relief from the pain. I completely understand the stigma about narcotic pain meds. I too have chronic pain. Give Harlow HUGS from Texas!!!
Elizabeth Bryant From me too in Texas!
Me too in Texas. And this very cold rainy weather makes it worse for me.
Thank you for this video and all that you do to educate people! Being a pain warrior myself, I KNOW your struggle. Sending prayers for much better days for you and all of us! ❤️
It’s a tough day here too Jaquie. Feel better soon darling xxxxxxxxxx
As someone who absolutely hates taking medication in genuine fear that I would become reliant on it. I rarely take pain killers and when I do I feel crappy for taking it, and I just deal with the pain until I just have to take something because it’s so high. Currently, I’m waking up every morning with severe muscle pain where I got the shingles, and doctors are too lazy to find out why, they show no interest in helping me. If someone needs medication, then it should be perfectly okay to take it, and I’m glad that you can take it without feeling guilty now. I guess the thing about it is also what other people say, people who aren’t chronically ill, don’t understand those who are. I get called lazy constantly when I have to make my body relax. Even the smallest things can drain all my energy some days, and they just don’t get it
As long as you take it as needed or as prescribed and as small dose as you can that works for you,you will be perfectly ok!!! Dont worry and if those drs dont help you GO FIND ANOTHER! You have drs to help you not ignore you and all that! If he/she dont help it dont help to find someobe else!!! Good luck and ill pray you get help and also find a medicine that helps!
Miranda Stephens I genuinely wish I could find another, but I live in a small town, and there’s only one GP who will take me, no other GP’s will take new patients (I guess they already have too many or something)
And thank you!
@@RebeccaBeckery is there a way you can look for one in next town over but still fairly close? Can you find transportation through an insurance or something?
A lot of doctors (especially in smaller towns) will not even take a patient if any type of pain issue is mentioned because they refuse to write pain meds for fear of losing their license. It's a bit ridiculous.
Miranda Stephens Nope :/ closest town is about 10 minute drive and I can’t drive, my mam sold her car last year. Unless I get to move to the city, there’s nowhere I could go, sadly
Please don't feel that you need to be apologetic or feel the need to minimize the use of narcotics. So many of us here are in the same boat and we understand, the judgemental haters can just suck it. I am struggling with mmj not helping with the pain as well. One thing I can say is that I really hated the high thc at first but I was surprised how quickly my body adjusted and I no longer had the bad side effects. Give it a fair chance and hopefully you will find some relief. Since I got on mmj my doctor took away the narcotics (he implied that due to recent law changes that I wouldn't be able to get it anyway) so my next appointment is probably going to be stressful. I look forward to future videos on the subject. Good luck!
Nothing wrong with needing pain medication it's your body, do what you need to do, don't worry about what others think xx
I’m glad you have something that helps. I also have hEDS, POTS and MCAS and honestly I just tough out the pain as much as possible. Narcotics just don’t work for me. All the side effects, and I wind up extremely dizzy and sleepy....still in pain but too disoriented to care and to sleepy to stay awake. NSAIDs either do nothing or cause MCAS reactions. I have a heating pad, TENS unit and home ultrasound and make do as best as I can.
I hope you’re feeling better today.
It was over a year of constant debilitating pain before I gave in and used a narcotic pain reliever. So sad that they have such a bad reputation. My life is so much better now, not perfect of course, but better.
This makes my heart melt you and hippo ❤️❤️
I hope you feel better today. ♥️
Thank you for sharing this. I started on narcotics in 2011 to supplement my nonnnarcotic pain medication. A bottle of 60 Percocet would last 4 months. In 2012 I ended up in kidney failure from too many NSAIDS and an SSRI that is used to treat chronic pain. My doctors changed my dosage from one or two percocets a day to 4. I still didn’t take that many a day. I’d only take them when I was in tears. I do take them now everyday 3 or 4 times a day along with a narcotic pain patch. Most people are completely shocked when they find out I wear a narcotic pain patch because I seem normal. They expect me to be high all the time. My family has come around and have realized that I need it to have a good quality of life. I have a few friends who still don’t understand and say to take Advil. Advil is what caused my kidney failure, so Advil and all other NSAIDS are off limits for me so I can keep my kidneys for as long as possible. I want to try medical marijuana and I finally qualify with the new rules in my state. However, it’s over $1500 a month to get about 2 oz of MMJ. And there are only 6 dispensaries, the closest one two hours away. That’s difficult because I can’t drive for that amount of time. I could drive one way but driving exhausts me and I would t be able to drive back home. I pay less than $20 a month for my narcotics. I’m hoping NJ makes it legal for everyone like other states have so the price will come down and it will be easier to get.
The more chronic pain patients share their stories about how narcotics have improved their quality of life, the better. Hopefully we can change the stigma and make the government and even some doctors realize that it’s ok to take them if you truly do need them and nothing else has worked and or you are allergic to other meds.
I also hear you on the chronic daily pain. I feel like people expect me not to talk about it, it would go away. But the pain is still there. I'm just silent about it-because I don't want to be a burden. And I feel like I have a weak pain tolerance-until I learned one day, I was walking on my leg with three broken bones, so I guess i'm just really, really used to pain? I honestly can't remember the last time I was totally pain free. Even now I have a lot of stiffness as I'm typing this
I love your channel I watch it a lot I’ve never missed a video your dog is so cute I Kinda makes me happy when you’re with your friend Jeanae and her dog they’ll be best friends for life
I have systematic Lupus with kidney involvement, fibromyalgia, connective tissue disorder, and a rare kidney defect called MSK. I am on constant pain I receive narcotic pain meds to help when my pain is severe. But often times I will not take it and just suffer because I don't want to be judged by others. This video helped me so much. I been following you for a while now and I think you are so strong. It would be great to chat with you. My rheumatologist believes I may have EDS hypermobility type and is sending me to physical therapy. I would love to talk to you as you are so knowledgeable in this area.
It's called invisible illness for a reason and there are tools available to help. Some people abuse it and others judge but it's your body and your life. People are likely to not understand or empathize until theyre in a similar position or struggle. I know I've personally cut out relationships with people who dont understand or respect it from my life and i don't regret that. I am open about a lot because I want to break stigmas and for people to know it's okay and they're not alone. There can be multiple uses for the same thing. In the beginning I was nervous about taking meds in front of others but they exist for a reason and I have stopped caring. It gets a bad rap when people abuse it but it is always nice when you can better educate someone.
Thanks. I believe that no one should be guilty about having pain.
Wonderful sensitive understanding dog.
Girl I'm coming to the reality that I'd like to go and see the world and I can't do that with my energy level because of my chronic disabilities so I now welcome in the idea of being a part-time wheelchair user in order to allow me to have the freedom I so desperately want
Unless someone lives with chronic, severe pain they just can't understand our lives. Even when we're out and about we hurt, we're just trying to be normal. We may be smiling, but so often that smile is there to make my family feel better.
I resent every pain pill I have to take.
I too have chronic pain, however because of CDC's guidlines my doctores have taken me from up to 7 oxycontin a day to 5 mgs vicodin 4 times a day. Is it any wonder why pain sufferes are committing suicide because thier pain medicine is being reduced or taken away completely. Even though I was not misusing my medication I am now considered opiate dependent because I use pain med to have a minimal quality of life. I have undergone 15 surgeries in the last 7 years and will under go my next one in April. Arthritis does not have a cure and is a constant process of deterioration in my my bones. I wish you well Jacquie and am glad that you are at least using it when you need to.
Hi Jaquie. I completely relate to what you were talking about today. And I'm glad you have come to the place where you feel that it's okay to use narcotics when the pain is so severe. It's kind of sad that we need to explain it to people but there is a stigma of taking opioids or narcotics for pain management in fact a lot of pain management doctors will not even prescribe opioids or narcotics anymore. You know with this whole opioid epidemic that they talk about it's made it very hard for people with genuine severe pain to get help. So I'm glad you've got doctors that are willing to give you the medication you need to help your pain. As far as medical marijuana is concerned I have found the only way that it helps with pain is to smoke it or to vaporize it. I have taken many different kinds of CBD oil CBD and THC oil and none of them really work. the only thing that worked was when I smoked it. Which I don't like to do I would much rather take the oil. But I Vape it so I'm not getting a harsh smoke in me at all. Anyways that's just a thought. I'm so glad you made this video this is one of my favorite videos that you've made and I've been watching you for a long long time. It was just so real and so transparent of you.
Sorry today was a bad day, I’ve been watching you for a while now I was wondering if you still use that weighted blanket for your pain you recommended a while back. Ever since you made it I have been considering ordering one for my anxiety. I was just wondering if you still found it useful?
I don't know if you or anyone you know sews, but I saw a tutorial on Pinterest to make one and it's about half the price to make it yourself. I made one and it works great. mine is only 6 pounds but it still helps comfort me when I'm having a panic attack. if you're interested, I can try to send you the link to the video. it's actually surprisingly simple.
Nor should you feel ashamed about it girl!
My pain management m.d. calls it "break through pain". Everyone has a different threshold for pain. If you use the medicine as needed, as prescribed, and do your follow up appt. The risk for addiction or damage to the body is low from what the doctors tell me. The choice is between you and your m.d. No one can judge because everyones experience is different. Hugs
Katie Johnson the choice is now in the governments hands the doctor get punished for prescriptions and the rules change all the time so most just refuse to treat chronic pain patients, what can we do?
Thank God for Harlow
you should NEVER EVER feel ashamed about taking something that will help your pain you do whatever you need to do to get yourself through the day! stay strong Jaquie
I love the bag you showed at the beginning, I have one in the same pattern
Your absolutely right Jacquie you have no reason to be ashamed your a beautiful person you take the meds you need and if people judge you for that they are not worth a second of your time your awesome Jacquie and if those closed mined people can't see that it's their loss you keep being the awesome fighter your are love you Jacquie
My Doctor has only now got me to realize that I should manage the pain Not let the pain manage me .... been a long lesson but one I now feel more comfortable with and also it is fine to lie down and rest through the day if I need it .... I thought my family would see it as being lazy .... but they are ok with it .... funny how we sometimes have trouble having to adapt to forced life change .... sending you hugs Jaquie
We are #chronicillnesswarriors! Thank you for tackling this subject,get some rest!!
Your amazingly strong keep going and do never forget that you’ve come so far and your fighting so much and you are my role model for the reason that you remind me to never give up!! 😁😁😁
Hope pain gets better for u soon hope u find some kind of treatment so get better for u soon 👧
Never feel guilty for using pain meds. No one should be in pain.God be with you.
I’m not a dog person but if I was going to have a dog I want one like Harlow.
Please bring back the old vlogging style and Harlow and yours instagram!! Love you guys :)
I also use pain meds and am not ashamed. I couldn’t work without them. Even with them some days are rough making it through a work day.
I take pain meds too due to arthritis in my shoulder and hand. I had to cut back on the amount to meet Kaisers standards, but the smaller dosage still helps, especially when it gets cold and rainy and my arthritis really flares up badly. I’m even taking less than the prescribed amount so I am thankful for that, because I can increase a little when the pain is really bad.
I was using THC drops (CBD does nothing for me) until my Kaiser doc told me I was breaking their rules and couldn’t take both as I would have to give up one for the other. After waiting several months to finally see a pain management doctor, he met with me for a long time and told me it’s okay as long as I abstain for 30 days prior to the 6 month urine test to allow the THC to leave my system. I hate that Kaiser rules make me feel like a criminal. I HATE the feeling of being high so I only used the THC at bedtime and rarely during the day, and never if I have to drive somewhere.
I have my Smart Drive to help me with pushing my wheelchair because the arthritis prevents range of motion allowing me to push my chair efficiently. Heating pads, reaching tools, special braces and rest also help manage my pain. But nothing works 100% of the time.
I wish I had a dog to snuggle with. I have my cat, but cats only snuggle when they want to. I’m glad you have ways to manage your pain, and you should NOT feel guilty for doing what you need to do to manage it.
Oh o was sick this morning. Bloated, nausea and pain. Blessed to have had a wonderful day today though. Goo
It's great that you don't feel ashamed and are helping break stigma. I have ehlers danlos syndrome too. Sorry but I have a genuine question (perhaps I need educating).. if you're in so much pain that you need to use intravenous opiates how can you actually plan to film at the same time and have the capacity to do it? Like, intravenous opiates are usually reserved for people at the high end of the scale eg in labour pain, in traumatic injury etc (mind boggling pain). Or have you just built a higher tolerance?
In this video Jaquie isn't using intravenous pain medication - she is using liquid formulations that she's pushing through her feeding tube. I agree that I personally couldn't handle filming on a day when I need to take my extra breakthrough pain medication, but I guess we all cope with pain differently?
I have had lupus and fibromyalgia as well as spinal osteoporosis for 25 years and on a massive combination of different pain meds for the chronic pain all of that time. You name a medication and I’m sure I’m either on it or have been in the past. At the moment I take steroids, fentanyl, morphine and anti depressants, as well as various other meds to combat the side effects of the big ones. No one wants to be taking that much but if I didn’t I would hardly be able to get out of bed most days.
The stigma and prejudice society now feels about narcotics use is brutal! It is very sad and frustrating to know, see and hear all the stories of abuse, dependency and overdoses. I never share with anyone, except family and my medical team that I take medication. Even if you have to go to an ER or clinic in a new place (where there not familiar with your medical history or you) due to an emergency you are treated awkwardly or with prejudice when you list your medications and they see a narcotic. Usually they state right away “we don’t prescribe narcotics here”, or something to that effect, even before you explain why the visit was necessary. My doctors make sure I always have the medication I need so the last thing I would Do is visit an ER or unfamiliar clinic, and wait hours for narcotics. But because of all the abuse and addiction being shared with society a lot of people are sceptical and down right rude to chronic pain warriors when it comes to narcotics.
So my attitude now is to keep it to myself. I have an amazing medical team (same doctors and other medical specialists) who know me, have operated or worked on me for over 17 years now. I take my medication and get through each day in what ever way I need to to get the most out of each day. Life is to short and we could leave this life at any time, so I want to live and enjoy my life with family and friends every day.
Never again will I allow anyone to criticize or make me feel uncomfortable about the need for narcotics in my treatment routine.
Jaquie you do what ever you need to do to get the most out of each day. We know that sometimes resting, heat or even sleeping wouldn’t be possible on some of our worse days. Some days we might not even be able to barely function if we did not get the benefits of our medication. I hope your Medical Cannabis journey progresses and begins to give you some relief. You’ve always been one to try any treatment and give it every chance! Just like your negative experiences with IVIG and Zolaire - eventually you pushed through and are now seeing and feeling the benefits. Best wishes.
Bonni-sue Huntley agreed
Hi Jaquie, If pain meds help you, then pain meds are right for you. I have had occasions when i have needed pain meds and I took them because it was right. God bless you Jaquie.
Thanks for this! I get so tired of people (a lot of relatives) who don't like the fact I use pain meds. I can't function without them. When you can't get out of bed to pee without crying, you need pain meds. They have never seen me stoned or acting goofy. My memory isn't always the best but it never really was. I'm not falling all over the place (One fall and it was a slippery rug situation!) So thanks again to remind ME it is okay!
There is never any problem using pain meds. If you hurt, its better to be more comfortable than not. I know I myself am guilty of putting off pain meds because of a big stigma against meds around me but if nothing else has worked.
I know what you say, still living it.
Herniated disc surgery. 11 years on pain meds (first Hydrocodone. Currently Suboxone).🥺😒 So close to being OFF for GOOD. 🙏🏼
Bless u I have days I just cry all day
Jacquie can I ask what narcotic pain medication you are taking? I only ask as I'm on fentanyl patch 37mcg and I change this patch every 72hrs. I am finding that the fentanyl patch works for everyday joint pain, funny pain etc. But with my severe acute attacks that I have with my pain, I require morphine that I administer myself as a subcutaneous injection 5mg (I save my morphine sub-cut injections for severe bad days when my pain is excruciatingly painful) I feel it would be helpful to learn from each other what pain medication opiates we are prescribed as not everyone is aware of the choices of different pain medication that are available to people like us that have a lot of chronic illnesses and suffer with daily pain. I hope the pain medication helped ease your pain levels to a manageable level. Harlow is just awesome. Take it easy Jaquie and please never feel bad for taking narcotics, only people like us that deal with high levels of severe pain everyday will truly understand and be able to comprehend what pain in this scale is really like. You are doing awesome Jacquie 👍
I have morphine for chronique kidney pain. The majority of specialists think and treat me as if i'm a junky, only my gp knows the truth because she gives me a new prescription when i show her that i have only used a few of the last batch and they are past there use before date. Some of my symptoms have even been accepted as side effects of morphine being in my bag,without having taken any for over 3 months. I do not want to have them and i do not want to take them but the rare times that i need them i am very thankfull to have them. When used for their correct purpose there is no reason to be ashamed.
Reading everyone’s comments, am crying for you all. All I can say is 🙏🏼🙏🏼, prayers! God said to pray in His son’s name. Pray for yourself, ask Prayer Angels and Prayer Warriors to pray. Don’t hesitate.
CShire60 Thank you 💓God bless you!!!
Ari De neros You are so very welcome! I’ve had years of pain. What helped was knowing others were loving me and praying for me. I wish for the best for you 🤝😇🙏🏼
If you use pain meds to control pain there is no shame. If you use it to get "high" then there is a problem. It's up to the doctors to decide with you what works, not up to others to judge. Same with MJ if you use it to help with a medical issue, there is no shame, again you and your doctor decide. It isn't up to others to judge you.
Hey, I understand because I have chronic pain, also