This is my first time responding to any type of blog, forum, etc. This story hit home (Surprise! We’re Chronic & Intractable Pain Patients NOT Addicts)!
You explained my life to a “T”. I can feel my body dying. I dont know where to get help. The harder I try to find a good doctor, the worse it looks. As I am writing this, tears are rolling down my face. The suffering is not only affecting me, but also my children and wonderful husband. I am crying also because there are so many of us.
Please if anyone knows how I can get help let me know. I am at the end…only enough strength left in me to try ONE more time to get help,and this is only because I love my husband and children too much to give up. I dont know what to do, and I am so frightened. — Shannon (Original Post here)
Getting Help While In Chronic Pain Crisis
Answered by Heather Grace
Shannon: First & foremost, I’m so sorry for all you’ve been through, and all you continue to go through. And, I’m so glad you took a chance & reached out! That tells me you know you deserve better than what you’ve been given. And somewhere inside you, I think you believe it is possible for things to turn around for you, too. Because *it is* – truly!
I can feel the pain & desperation in your message, because sadly, I know where you’ve been. Yes, it feels like a crushing nightmare that you cannot awake from…
Not only are you suffering physically–all the people who are supposed to help you are NOT doing so. Not doctors, perhaps not even some loved ones. Pain is a cruel, cruel illness–it is so misunderstood. The toll it takes on one’s health is serious enough. Add to that the torment of being judged, doubted and mistreated… It DOES feel like it’s more than anyone can or should be able to bear. And, for some, this suffering IS too much to take.
Intense pain caused by injury or illness does lead many to thoughts of suicide. It’s the lack of treatment when a person gets to that point that I believe pushes people over the edge. Pain KILLS.
I know, because I have been on that ledge, Shannon, right where you now stand. I tried twice to step off it. Twice a voice somewhere inside me said “NO! You can’t. It’s *not* over.” Like you, I told myself, ‘FINE. Just one more try. If this doesn’t help, I can still end my pain on my terms.’
And when I decided to try once more, a strange set of circumstances lead me to the perfect doctor *and* the perfect support system. Ironically, it was a stranger who helped me, too. He gave me the phone number of the doctor who saved his wife’s life. What a gift that was! And here I am.
As hard as it is to do, you have reached out your hand to ask for help. Don’t you see how perfect it is that you asked ME to help you find your way out of this darkness? I was you, Shannon, in 2007. Though it was just five years ago, I am now a completely different person.
I now see the power of what ONE PERSON can do. Pain Advocacy has become my life. I do what I can every day, hoping to repay the kindness that was shown to me when I needed it most. Your letter really touched me, and I want to give you all the help I can, so you can be well again.
Though you have every doubt in the world, though is the hardest fight you’ve ever faced… Even if you don’t see if yet, YOU ARE A SURVIVOR. You ARE strong enough, you CAN do this. I know from personal experience! It can and will get better for you with the right help. A doctor who “gets you” makes all the difference. I will help you find the right treatment to save your life.
Two things to get you started:
(1) All patients without effective care may benefit from the advice given in the article, Tips & Secrets: How to Find a Good Pain Management Doctor online at http://thepainstore.blogspot.com/2010/10/how-to-find-good-pain-doctor-tips.html. This is based on information I have used, myself–as well as tools I’ve used to help others.
(2) It becomes especially important to ensure physicians see that you are suffering with severely pain. How do you do this? Provide current and prospective physicians information on the OBJECTIVE signs of severe pain: http://pain-topics.org/pdf/Tennant-PainSigns.pdf. Medical professionals often refer to pain as the 5th vital sign, but how many actually look for it in their patients? So many doctors believe pain is a subjective complaint. In fact, there are many signs!
Going forward… Know that effective pain care does exist. And, I will help you find it.
All I ask of you, Shannon: Promise me you will trust me enough to hang on. Not just for your family, but because YOU deserve a chance at life again. To really live. You will get there! And one day, you will be so well, you may find yourself in my shoes… helping someone else to survive this terribly difficult disease.
If at any point you feel like you are in need of immediate attention, please call 9-1-1. There is also the National Suicide Prevention Lifeline: 1-800-273-8255. I sincerely hope you don’t get to this point, because I believe you want help as much as you truly deserve it. Hang in there, ok?
I’ve emailed you my contact info. Feel free to write back or contact me via Twitter @IntractablePain, anytime, as well.
Take care Shannon, and I’m so glad you reached out! I’m hoping to hear from you very soon. Hopefully today… I’m here for you.
Hugs, Heather G.
UPDATE December 2012: I am happy to report than Shannon is doing much better, under the care of a specialist who is working to resolve her intractable pain and related conditions. I’m so pleased–everyone deserves appropriate access to care for their chronic & intractable pain!
© 2012 Intractable Pain Journal & Heather Grace. All rights reserved.