Chronic Pain Patient In Crisis: Lifesaving Care Needed

4 Oct

READER QUESTION:

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.

4 Responses to “Chronic Pain Patient In Crisis: Lifesaving Care Needed”

  1. Jessica October 10, 2012 at 10:42 pm #

    One of my problems is that doctors often refuse to read anything written by patients. I’ve been in pain for 35 years. I should have had scoliosis surgery as a kid, but didn’t get it. I searched for a better MD for almost five years. I found one, out of seven. He fired me from the entire 5-MD clinic within a month because “he didn’t understand my pain”. List of MDs are no good because they must be chosen from within the list provided by one’s health ins. co. or physician’s group. The good ones – and by that I mean attitude, not necessarily opiates – are extremely rare and their practices are always overloaded and closed. The “objective proof” of chronic pain may not fit. My blood pressure is always extremely low, though my hands & feet are always cold. So I don’t fit. Those “objective” symptoms are the theory of one person. He’s a great person, but just one. I had a wonderful MD for 12-1/2 years, but he died. Actually bring in an entire article? My current PCP would just trash it. And some pain is opiate-resistant. Plus, once you’ve used opiates, you’re a “drug abuser.” If you physically hurt so much you wish you were dead, you’re “depressed” (mentally ill) and need drugs for mental illness that make you act crazy. Pain makes you act crazy too, but that’s not considered. Anything rather than simply admit that they don’t know what to do – or nothing can be done. Suicide prevention lines just want to talk, then refer you to places to to more talking. Talking has no effect on physical pain. Please don’t tell people they WILL be well. If this were true, no one would ever die. Some will get better, and others will not. We have to be realistic, because the medical industry is so unwilling to. I want to be seen the way so many people see pets they assume are suffering unbearably. So many obsess over that, but a person who objects to the same situation is scorned and treated with contempt.

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  2. Inka October 11, 2013 at 11:04 pm #

    Yep, mine have been too lazy to read the pain journal, or even to review my file to see if my claim that my injury/extreme pain and elevated vitals started at the same time.

    Like

  3. Inka October 11, 2013 at 11:11 pm #

    Oh, and the most important point I can make is: By the time a chronic or intractable pain patient is googling “pain and suicide”, they’ve already done everything you’ve suggested. At some point, which I think I, myself, have passed, one loses the reserves of strength one had to continue struggling. If a person doesn’t have a spouse or kid who is invested in their continuing welfare, then they don’t have an effective advocate, period. Once we are too weak and disheartened to advocate for ourselves, we stop, like a top slowing down and toppling over. What is needed is hands-on advocacy or an honest, “Too bad, we don’t want to be bothered helping you, other than giving you advice you’re too weak to follow; so, you’re on your own and …. Yes, we will drop the taboo against suicide, since we realize we’re not leaving you any choice, other than to curl up under a bush in the wilderness like an animal, and wait for death. Don’t worry, that “going to Hell” thing was nonsense. God loves you and we’ll see you on the other side….And of course we’ll see to it that your loved ones are taken care of.” Now, THAT would be helpful.

    Like

    • thepainjournal March 15, 2014 at 1:22 am #

      I agree with what you’re saying, to a point. I was at and over the line twice. And 100% alone. I had NOOOO ONE to speak of. Just me. And instead of letting my car fly off the side of the freeway like I knew it could, crashing into the cement embankment below and possibly a few other people/cars as well, I kept searching, through the pain. I literally sat in my sporty little car on the side of the road one night, after I tried the second time to finally do it… To do what I knew would end my life. I couldn’t. There were too many cars, even at 3:47am. After screaming/crying out every last tear, pounding my fists into the steering wheel as I did so, a silence filled that car. It was deafeningly resolute. In that moment I said, “One more. Just one more doctor.” I decided if he couldn’t help me, then I’d have to “crash” anyway, to end my suffering. And, I’d just have to hope that no one else would be hurt. But you see, he did help me. And he still is. It’s not easy… I’m not going to lie, it requires changing every damn thing your life once was if you’re going to survive. But, that was ok with me, especially when I thought about those dark and scary moments. Now, I’m no longer suicidal AND my pain is controlled. My body’s in constant flux with health issues, but I LIVE as well as I can. And I’m so very thankful for every happy moment.

      Do I know how I survived the worst of it? No. I still can’t believe I did. But I feel like my job is to help others, because I MADE IT. I owe it to everyone who stands on that thin ledge between life and death where I once stood. I will help them if I can–all they need to do is ask.

      Like

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