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10 HELPFUL HINTS ON THE ROAD TO PAIN RELIEF
By Barby Ingle
- Speak up! You are your best advocate and have a right to timely and effective care.
- Know your limits. By taking on less, you’ll ultimately be able to accomplish more.
- Know your pain. Know options available to you, educate yourself about available treatment options.
- Reach out. Bring a relative or friend to your appointments, accept assistance.
- Seek out information and support. Investigate resources in our community or online.
- Simplify. Work with one provider to manage your pain care as much as possible.
- Take a moment. Listen to your body’s response to stress and anxiety. Make a habit of taking time each day for deep breathing exercises to help ease your pain.
- Take care of yourself. Maintain health habits and stay active to the best of your ability.
- Take stock. Know there will be good days and bad days. Take a moment to focus on the good things in your life.
- Write it down. Use a journal to record your pain levels and questions for your pain care team.
Inspired to take action by speaking out about pain and seeking out the help we need
by BarbyIngle
written by BarbyIngle
How have you been able to get people to realize they should share their story
by Barby Ingle
When I first began to deal with the symptoms of reflex sympathetic dystrophy (RSD) 11 years ago, it was life changing. It took nearly 3 years just to get a proper diagnosis. I felt alone, isolated, and I didn’t have the knowledge to get through the system on my own. Through all of my surgeries and complications I had hope that I would find relief someday.
As I was searching for help, I realized that each time I spoke out about what happened to me I was providing HOPE to others who are going through similar situations. As a cheerleader who could no longer perform physically I redirected my efforts to become a cheerleader of hope. Before that happened I had to become the chief of staff of my medical team and be my own best advocate. I keep a positive mental attitude even on my worst days. I did this by being responsible for the treatments I chose to undergo. I learned to say no, when I needed time to do more research and ask questions. Most of all, I learned that the only way I could be a source of hope for myself and others was to share my story and encourage others to do the same. I began speaking out to anyone who would listen.
Sharing our experiences brings other patients a more timely diagnosis, access to appropriate care, and proper treatment options for many pain conditions. I have had doctors tell me that because of hearing my story, they were able to recognize and diagnose others quicker. This showed me that speaking out has a large impact.
Putting faces to pain is helpful in reducing the societal stigma of chronic pain. The spotlight on chronic pain advances public knowledge and helps society better provide for its pain citizens. With over 100 million Americans in pain we make a difference by sharing our pain stories. We are not alone in the fight against pain; we should not feel that we are with so many others facing issue.
We need to shine the biggest spotlight on pain issues that we can. I have turned my efforts to celebrities that deal with pain or have a family member who deals with pain, and asked them to share their spotlights. Many have joined with me to do just that including Paula Abdul, Ace Young, Diana DeGarmo, Scott MacIntyre, Kirsten Storms, and Jerry Mathers. Through these efforts I have learned that the more people share their story the more others have hope, inspiration, and better access to healthcare. Putting a face to pain makes it easier for those patients and their loved ones who are diagnosed in the future.
I learned a life lesson the hard way… through being a part of one team or another almost my entire life as well as coaching multiple teams and running my own successful businesses.Once again, I speak for me. No one else in the world speaks for me, acts for me, or lives for me and I don’t act, live or speak for anyone else when it comes to their personal business. I don’t say who people can be friends with, or who they can hang out with, I know that I am only responsible for me and the only one in charge of me. There are a ton of sides to every story depending on how your looking at it, what your own goals, morals, values, etc are, what you think happened, what actually happened, what your mental status, physical status, etc is at the time, and so on.
I also know, unless someone has a gun to your head, they cant make you do anything, guilt is not a gun! You have to learn to manage yourself and be responsible for yourself once you turn 18, until you can do that, you are a pretend adult, I think I was a pretend adult until I was in my late 20’s. I had a lot of success early on, but took life for granted and the day I woke up and realized I am the only one who is responsible for me and the one who cares for me the most, and started taking actions like this to protect me, I became a real adult… and a better, stronger person and advocate for myself.
I saw this story circulating on fb this morning, about a girl who decided that she didnt want to spend time with her sister for her own reasons, but then was upset that the sister was mad at her choice. But the deal is… you can only control yourself, so if that person, even family is detrimental to you, make a new family, and if you choose to stay, then own that behavior. Both sisters were upset and both allowed the situation in their own way. Which ever way you choose to be, own it, because you dont own anyone else. Nope not even your spouse.
Wisdom of Ingle –
My daughter Barby and I were driving across New Mexico. As we were driving along, the conversation turned to things, we had learned about life and living. Barby suggested that we put this knowledge into a book called “Wisdom of Ingle” or, as my father would say, “You’re Active as a Cow Fall down and Get up in Half a Day”. On my 60th birthday, Tim said that, I know something that most other people do not know about raising kids or that I was very lucky that my kids turned out as good as they did. My answer was that I had set out to teach them certain principles of life so there was a method to what I did. The stories that I tell might change from time to time because of the point I am trying to make. All of the stories are true, just approached from different angles as needed to make a point. I do acknowledge that God led the way. This book is a combination of the Wisdom of Ingle and the leadership and plan of God that is unfolding for our family.
April 16, 2014
In Time of Pain
O God, give me the strength I need, to bear my pain. Give me patience to endure this time of inactivity. Save me, from every weakness of self-pity and complaint. O God, I thank you for the health of body, for the peace of mind, for the strength of spirit.
Prayer for Healing
Dear God, who has promised never to leave nor forsake us, Grant, that in my weakness I may know myself to be surrounded by your power. When I am restless and Anxious, may I find Peace. Do for me what I cannot do for myself. When my heart condemns me grant me the grace of forgiveness. Fill my heart and mind with your healing and comforting presence.
For Sufferers
O Lord, who feels the world’s pain, and looks upon all sick and suffering persons, enfolding them with your love. Grant that in the midst of pain, they may find your presence. To doctors and nurses, grant tender hearts and healing hands. Give health again in body and soul. Teach me, to think of life as a continuing upward growth in which each trial or hardship can be used to reach a greater height of character. May I, have courage and trust. Amen.
Prayer Before An Operation
O Lord, into your fatherly hands, I commit my life completely with trust and confidence. To you I give my body that it may be healed. May I fall asleep peacefully in You. Guard me through the moments of unconsciousness. Guide the hands of the surgeon that your healing power may restore me.
Prayer After An Operation
O God, You did bear us up in health accept our gratitude. I was thirst and they gave me water, I was feverish and they bathed me. O God, I thank You. I was afraid and they comforted me, I was discouraged and they heartened me. I was lonely and they visited me. O God, I thank You. I was weary but now I am rested, I was weak but now I am strong, I was broken but now I am while. You are my judge; spare me and be merciful to my sins. You are my physician; heal all of my ills. You are my leader and my defender; place me by your side, and then I care not who lifts his hand against me. You are my Redeemer; redeem me form the power of evil and preserve me. You are my God and my All; for what have I in heaven but you, and what do I desire upon earth besides you? Lord Jesus, bless all those who are taking care of me in my illness, and give them the strength of your power in ministering to the needs of the sick. Bless, too, the other sick in this hospital, and give them the gift of patience and fortitude, which, I too, need so much. Father, I thank you.
Prayer In The Time Of Discouragement
Grant, dear Lord the light, that this darkness may pass from me and that I may rest in the light of your unfailing love. Give me, calm assurance that you are my shepherd and even when I walk through the valley of the shadow of death I need fear no evil. You have promised grace sufficient for every need, may I have the courage and hope, to commit myself entirely to you.
As a patient with a chronic care disease I have found some common reason I don’t to take my medications and things that have helped me stay on track that I am going to share in hopes of helping other patients. When a provider ordered a new pill I didn’t ask questions, I just took it. After having complications with multiple medications I had to change my approach. I began to speak with my pharmacist and created a relationship where I could discuss all of my medications, what they do, where they process in my body, and any possible interactions with other medications. Remember to use your pharmacist as an important member of your medical team! Know all about why a medication is important and how to best take it helped me get past the fact that I hate taking medications. I used to forget to take my medications. Mostly this was due to high pain levels and having difficulty concentrating. To fix this, I started using a pill box that had morning afternoon and night boxes for each day of the week. If I couldn’t remember if I took my pill all I had to do was look at my pill box and know if I had missed it or not. It became a routine for me and thus easier to remember to look at the pill box and even easier to know if I did or didn’t take the pill at the correct time. I continue this conversation on my medications and what and why I am taking it with my provider each time I see them. Knowing that new medications come out that work differently and that may be more effective I know to ask… what else is there, what are my choices. I have may reactions/ side effects to medication. My body is very sensitive. I keep track of what I am experiencing and discuss it with both the provider who proscribed it, the pharmacist, and my primary care physician. When I have a med-major reaction, I have my provider fill out med-form 3500A so if my insurance company ever wants me to do step therapy to get the medication that will work best, I can prove I have already tried and failed others prior. I know how important it is to keep my treatment choices between me and my providing physicians. We as a team (me as chief of staff of my medical team) are the ones who know my case and what will work best and why. We don’t want a third party who is trying to save money to try to push their way into my care. I know as a patient that we can stand up for what we need, it may take a little time to get this process started, but effort now to get organized will save you time, money, energy, and health in your future. – Barby Ingle, Best Selling Author, Motivational Speaker, Philanthropist on Chronic Pain Issues | Chairman, Power of Pain Foundation
In Honor of Love By Barby Ingle, Author of Real Love and Good Sex for Pain Patients and their Partners – February is the month of Love but for a pain patient and their significant other intimacy may suffer on a regular basis. We know intimacy is an important aspect in keeping a healthy lifestyle. Often times, chronic pain patients forget that sexuality is an important part in a partnered relationship when their pain levels are high. In spite of chronic pain, you and your significant other can have an active sexual relationship that is quite satisfying. You just have to be creative with getting around the challenges of chronic pain. All people need emotional and physical intimacy. The vital need for human connection helps stimulate our sexuality. Sex is an important aspect of our identity, and when chronic pain comes into the picture, it is often the last thing we are concerned with nurturing.
A normal relationship goes through 5 stages. The five stages are forming, storming, norming, performing, and adjourning-transforming. All relationships go through these steps. Some stages such as storming, norming and performing may occur any number of times in a relationship before adjourning due to a split of the relationship or death of a partner.
Talking with your partner is the first step in reclaiming your sexuality. Try starting the discussion fully clothed, in the living room or in a neutral setting. When speaking, use “I” so that you’re not putting stress, pressure or anxiety on your partner. An example is, “I love when you hold me close; it makes me feel cared for” versus “You must not love me; you never touch me.” Maybe the partner is afraid of causing you pain, and if you let him or her know you are still interested and willing to have intimacy, you can put your partner at ease. Conclusions you may have jumped to as to why your partner has stopped touching you can be cleared up. It is usually not that they lost interest in sex or in you or that they now find you undesirable.
Chronic pain can cause an emotional wedge between you and your partner. Becoming aware that your physical and emotional distance hurts your partner may add to your fear, guilt, resentment and anxiety. Relationship problems can exacerbate stress even in strong relationships. Medical problems like chronic pain lead to unemployment, financial issues, a less kept house and lower self-esteem that can uncover previously hidden conflicts with your partner. If you do not have a plan, you may suffer in the human connection and intimacy area.
If you are feeling unattractive and undesirable, your own actions may be preventing the intimacy you desire. Become aware of your needs and your partner’s needs for sexual contact and passion. There are times when sex seems out of the question. There are times when I am simply hurting too much or feel too tired for sex. However, I will try to remember that my partner needs the love just as much as I do and that for this period of time, I can get my mind off of the pain. When I am planning for intimacy ahead of time, I can take stronger pain control medication so that I can experience the same pleasure my partner is feeling. Also, medications can lower your libido just as a low self-esteem does. Some medications lower sex drive by affecting blood flow and hormones. The want for sex is also diminished by changes in your nervous system. Keeping this in mind will help your plan stay in effect and increase the satisfaction of your partner and your own intimate needs.
Being creative is a way to enhance and amplify your intimacy needs. Things such as holding hands, cuddling, fondling, massaging and kissing increase these intimacy feelings. The bottom line is that intimacy and sexuality can actually make you feel better. The contact you achieve while having sex can help you feel stronger and the intimacy you build with your partner will help you both better cope with your chronic pain. Actions you can take to raise intimacy levels and strengthen your relationship: do to your partner what you want for yourself, keep a healthy lifestyle, lean on your partner first, touch each other, and take preemptive steps to keep a close connection to your partner.
NOTE: If you think that your sex drive is not normal due to a side effect of a medication you are taking, it is important to speak to your doctor about it. Medications can also cause a lack in libido.
To make informed and wise decisions about your treatment plan, doctors, hospitals and taking your life back from the pain in you, become educated. This book series is one step in the education process. Places to look for additional Information that is up-to-date with RSD issues are:
- Clinical trials and Studies
- Disease organizations
- Internet health sites
- Support groups for RSD or Chronic Pain
The important part for you is sorting through all of the information that you do gather so that it can be processed in terms that you, your family and doctors will all understand to make informed decisions. When the need for more advanced information still exists, you need to dig deeper. For instance, knowing the experts and best locations for medical treatment of RSD patients is necessary. Going further, you should follow those experts as they publish new findings. You never know when the miracle is going to happen. Until then, use the tools available to you from many sources. This way you will get the best and most accurate information to deal with your specific issues.
from RSD in ME by Barby Ingle
Another RSD sufferer and sister sharing her pain and story!
By Melanie McDowell
June 1974 – July 2006
He makes me bleed with each caress,
my body and mind he does possess.
Not my spouse, my lover or even my friend,
on his brutal presence I’ve come to depend.
I tell him to leave. Just leave me alone!
Yet he stalks me, hurts me, then laughs while I moan.
He is with me on waking and keeps me from sleep.
He keeps after me until I quietly weep.
He’s not even human, this cruel entity,
He is chronic pain and he tortures me.
This just touched my heart so much as it comes from a 14 yr old girl who suffers with RSD, same as I do.
By Adela Partida
Sometimes I just wanna cry
Sometimes I just want to hide
Anything to run away from the pain
To others I’m fine
But only I know
How I really am
I’m a fighter
I fight everyday of my life
Burning for a cure
For some kind of relief
To put me out of my misery
I just need a breakthrough
I need to be able to live life
Without always having to be approached by with caution
Without feeling constant burning,excruciating ,stabbing pain
I need to run,jump,play sports ,and dance
Like a normal 14 Yr old girl but knowing what I go trough
You would know I’m no
Normal girl and I live
No normal life
I need to feel normal
I need to live life pain free
I need your help to relieve me from my misery