Health :: Shades of Pain

Health :: Shades of Pain

Shades of pain…. That phrase is running through my mind as I think about the pain I am in right now, today. I was trying to describe it to my friend so that she understands. I always think that my pain can’t get any worse, but it does. How can I begin to explain to her what I am feeling? Maybe other people with chronic pain will understand.

shades of pain poem about chronic pain

I changed doctors a few months ago and my new ones are really not grasping my medical history. I don’t think they have completely read through my records and they dismiss so many things I tell them. Last week at the pain doctor, she told me that it is against the law for her to prescribe opioids for me because I do not have cancer and am not at the end of my life. She explained that I am taking almost 5 times the legal limit. She cut my pain medication by 30% and next week I am supposed to go back and she will cut it down to the legal limit for a cancer patient. She hasn’t said what the next step after that will be. Is she going to take everything away?

In spite of the fact that I have been dealing with chronic pain for 8 years, I have a heart condition, 2 failed back fusions, I am in so much pain already that I can rarely get out of bed, plus I have several diagnoses that are up in the air at this point (they disagree with the Mayo Clinic) she is taking away my pain medication. She told me that the federal government has passed this law and she has to follow it.

The problem is, besides the fact that I am in tremendous pain, I can’t find any information on the laws that have been passed. I know there has been discussion and that the CDC has made recommendations. A recommendation is not a law, though. I have even asked other chronic pain patients on Twitter if they have heard of these new laws. No one has.

My husband is trying to get me in to see his pain doctor, I don’t think I can take much more of this. I have to find a new doctor asap. The pain is horrible, it wasn’t even controlled in the first place. Now on top of it, I am dealing with withdrawal symptoms. I am trying to read and to keep busy, I try not to let myself focus on the pain. This post has taken me hours to write, I just can’t get it together. Tomorrow has to be better! 

9 Responses »

    • I’m so sorry that you only know pain, Rose. It is hard, and I know that your journey is even harder than mine. I really appreciate how you share your thoughts on your blog with such grace and eloquence.

  1. You definitely need to find another doctor. I get so angry when I hear about doctors, who are supposed to help us, dismissing us. I read something the other day, I can’t remember where but it went something like, if I wanted to fake an illness I’d pick one that everyone has heard of. We are valid. We need to be respected too. Go somewhere else. Don’t suffer any longer that you need to. Heaps of gentle hugs.

    • Hi Alysha, I do have an appt with another doctor but it isn’t until the 14th. I guess I will be looking for a new pain doctor and a new primary doctor now. They work closely and I got a weird message from my primary so I can tell it is time to move on. I don’t think I am a difficult person, I think my health is an involved case and even though when I interviewed these two doctors and explained my background, they were all for the challenge. I guess it is more than they thought and I know my primary does not like me asking questions. I need an open and honest working relationship where I can feel that I can go to my doctor with any health problem. If I disagree with him, I should be able to say so.

      I left my last doctor about 4 months ago because I felt like he wasn’t listening to me anymore. I will find someone, but I will have to go outside of the current system that I use right now for everything.

      Thanks for understanding and following along this crazy journey!

  2. What a beautiful way to explain the pain a person goes through each day, when dealing with chronic pain. Lynn Marie, I also live with chronic pain each day. I take 2 high powered pain meds, that don’t touch it either. I don’t really think that people understand how living with barely being able to waddle across the room to get to the bathroom that isn’t even 4ft from where you’re sitting, just how hard it really is to get there. In the poem, where it mentions the grey & black matter in your brain,, that reminds me so much of the Multiple Sclerosis that I fight each day & that along with a few meds has already tried to take me from this world, they were just a few short hours of succeeding when my daughter rushed me too the hospital. I had 5.7% renal function & 17% O2. Drs. told my girls & husband that had I been a few more hours later or even overnight waiting to go to the hospital, they would have been burying me. I spent 4 or 5 days in icu, not knowing who I, my girls, husband, drs, nurses, anyone was. My family thinks that I’m supposed to be able to just get up & run when they call like I could 5-7 years ago and I can’t. Do they understand that? No. I’m hardly ever spoken to on facebook, hardly ever included in activities that my mother, myself and my sisters used to do together. My girls, well we really don’t even have a relationship.
    I have 1bright light that shines brighter than the northern star in my life. She is my #1 bestest(lol that how we say it) friend, my sunshine on every day, not just cloudy days. Her name is B.b.(Brooklyn), my very 1st granddaughter & grandchild. She was born @29 weeks, weighed 2lbs 7oz & was the healthiest baby born that early the pediatrician had ever seen, he said. I told him she was a miracle baby. Today she is still healthy and just this past June turned a big 5 years old and my other Savior, because if not for her I wouldn’t be here today. The pain I felt each day, walking hunched over every day for 5 years, having to quit working, not being able to enjoy life, this kind of life is not,, is not a life anyone should have to live through & I was close to making sure that I wasn’t going to live like I do now & then her mommy handed me a positive pregnancy test she had taken & my world changed. My prayers and thoughts are with everyone that lives with even the tiniest hint of a pain. May God bless and heal us all. I’m awaiting for that day to come.

    • Hello Lisa, Thank you for such a heartfelt and open and honest reply to my poem. I am sorry it has taken me so long to reply. My husband did read it to me though and I have been praying for you. Until you have experienced chronic or debilitating pain, I don’t think there is a way to understand it.
      When I was at the Mayo Clinic about 8 years ago, my neurologist told me that she did not believe in pain. A doctor, much less a neurologist, saying she didn’t believe in pain? She said she had never even had a headache in her life. Well I am sure she must not have given birth either, but I didn’t ask! She probably has a disorder wherein she can’t feel pain, who knows.
      I am so sorry that you are having not only to deal with MS, but with the incredible amount of emotional baggage that goes along with any chronic or life-threatening illness. Every single one of your relationships changes, most fade away. It can be horribly lonely.
      It is amazing what grandchildren do to us isn’t it! It is like they bring new hope. New grandchildren don’t know the old us, so they accept us just the way we are aren’t don’t have unrealistic expectations that other family members sometimes can. I feel like my grandchildren give me unconditional love. They don’t care that if they want to spend time with me they have to come to my room. They love it in fact! They argue over who gets to lay where on the bed and who gets the most time with me. In truth, I now have the time to focus on my youngest son and my grandchildren in a way that I was never able to do with my grown children. When they were young I worked all the time and when I wasn’t working, it was go go go! Now, my attention is all for them!
      My priorities in life have certainly changed, and that has been my serendipity in chronic illness. Even though I deal with constant pain and senseless bureaucracy from some entities, I have found myself.
      I am so glad that your granddaughter came along at just the right time for you and that she was born so healthy and continues to thrive.
      Thank you for leaving this comment. It gives me such encouragement to know that people actually read my blog, and that they can relate. We all have stories to share and they are all important. With so many changes ahead when it comes to pain management and for people with chronic illness, we have to stand together and advocate for each other.
      Miracles do happen, never give up. I will continue to keep you in my prayers.

  3. Pain is a terrible thing. With the new federal laws, doctors are now hiding behind being afraid to prescribe. What’s next, hacking off a limb while biting a stick? I’m convinced this “crackdown” or whatever you want to call it, is ruining lives. Lawmakers scratch their heads as to why there is now a heroin crisis. Really? They need to wake up. Help the people who truly need it. Don’t make everyone suffer now I suffer from chronic pain and anymore I feel I’m being judged by everyone I’m in contact with regarding my monthly prescription.

    • Hello Dana, Thank you for sharing your thoughts on this! In October, a doctor told me these were new laws. At that time, they were just CDC Guidelines, so she was actually lying to me. But I know there has been a huge push since that time and I need to research exactly where we are at right now as to what the law says about pain medication.

      I actually have a post coming up soon about what I ended up having to do about my pain medicine, and it is not an easy story to tell. Your comments about chronic pain hit home with me too, I made 2 trips to the ER this month and how I was treated and what I was told was shocking.

      Pain patients and anyone else dealing with any type of chronic illness have some tough decisions to face, decisions being forced upon them not by the government, but by hospital administrators and doctors.

      I appreciate you sharing your thoughts on this and for reading the poem I wrote. I will look forward to your thoughts on my upcoming posts about pain medication and chronic pain.

      I apologize for the late reply, it was a tough winter and I wasn’t following up on things like I should. I truly appreciate the time you took to post a comment and appreciate the fact that you read my blog!

      • Lynn I can assure you, the government has more to do with our medical than you seem to believe. I have a rare terminal illness. Before finally being diagnosed after being misdiagnosed for who knows how long, I had just been through 9 procedures and numerous treatments in a little under a year n a half. While going through these operations and being diagnosed soon after with a disease giving me a life expectancy if 5min, the president at that time decided to pick up his pen and ignore our process as usual causing cut backs on all medical areas for the disabled, elderly, n those on Medicaid. I live in pain and everyday brings a something new to deal with. I have been cut back so far I wasn’t getting relief at all so I am not getting any pain meds. My other meds were cut as well n it’s very difficult. I have to pretend to be ok for my family. I am the one who takes care of things and despite being told I don’t have to anymore, I don’t know anything else and I love them so much I want to be the person I was before getting sick. I try n I push myself too much but I don’t let them see it when I can hide it. When my chest pain is horrible and shooting pain down my left side and up my neck, I lose feeling in my extremedies, I pass out without warning, I am fighting for air, I turn colors from lack of proper circulation,.. things no one can hide, that’s when they are aware of the difficulty. Complaints, crying, telling anyone how I feel or what’s happening, being negative, or upsetting my daughter by allowing her to see me in a way she’s not use to won’t help me get better or live longer. I’m sorry for what you’re going through and I will pray for you but please don’t say the government has nothing to do with the meds again. You are an intelligent lady and that comment coming from you was would have surprised me if anything still surprised me. Looking well on the outside while your own body is killing you on the inside is hard because people can’t seem to grasp a person looking great yet being terribly sick. They often treat you as though you just scraped your knee compared to someone who has the flu because they fit the sick profile, lol. You are an inspiration to so many. All the people I’ve read the posts and each of them are so strong and have beautiful hearts that shine even through this page. I didn’t know there were so many people that were so kind, strong, willing to be a listener even in their time of need, n I love everyones positivity. Bringing people together isn’t easy n bringing really good people together is even more difficult but it’s being done here. I will pray for everyone! God Bless

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