New Policy Threatens Fate of Pain Management

Blue Cross Blue Shield of Massachusetts (BCBSMA) will make sweeping changes to patients’ pain medication access beginning July 1. Because they are being treated for chronic or intractable pain, approximately 30,000 BCBSMA patients or just 1% of their members will not be impacted. Thankfully, people receiving treatment for serious medical conditions or are terminally ill will be permitted to continue to receive prescription pain medication.

This policy impacts the rest of the company’s nearly 3 million members–anyone who isn’t already receiving pain treatment. By limiting access to these medications, the insurer hopes to reduce the risk of addiction and also to keep medication out of the hands of people for whom the drugs weren’t prescribed. BCBS of Massachusetts is believed to be the first insurer in the nation to adopt this dramatic approach, taking the decision-making out of the hands of doctors who treat patients for pain.

This new policy will prevent Massachusetts’ pain management physicians from deciding what is best for their BCBSMA patients. Initially, patients can receive up to a 15-day supply of pain medication. They are also eligible for one refill of the 15-day treatment, for a total of 30 days worth of medication for pain. Beyond that, doctors must go back to the insurer for “mandatory review.”

From July 1 onward, whether patients receive care beyond the 30-day period will be in the hands of an advisory panel. Doctors must officially request the ability to extend pain treatment via the BCBS panel. I contacted the company and spoke to a Customer Service Supervisor who said the panel would take an estimated 24 to 72 hours to make a decision. Once a determination is made, the patient and his/her provider will be notified of the decision in writing. How long it will take for a ruling in reality is anyone’s guess.

I was also told that physicians were free to request the panel’s assistance on behalf of a patient during the initial 30-day treatment period. While BCBS may feel this will assist patients, ensuring there is no delay in their access to much-needed pain management, I have experienced pain treatment in the real world. It is doubtful that many physicians will go to bat for their patients until they have gone through the entire 30-day supply allowable under BCBS.

As every patient with chronic pain knows, each request for continued pain treatment requires a return trip to the physician. Doctors simply do not grant pain medicine refills to new patients unless they are seen face-to-face. Just how many additional trips to the physician will this new protocol require? It would appear, up to two more visits in the first 30 days. This could dramatically impact physicians as well as patients–further damaging an ineffective overburdened system.

Though only BCBSMA will adopt this policy July 1, it will likely have much broader implications. Each new restriction to pain management spreads like wildfire. (Ex. Washington State’s new pain medication prescribing limit of 120 mg per day impacted patients nationwide.) This 30-day policy may be used unofficially by other insurers. Some companies are probably considering adopting such a policy change officially. The truth is, this represents an alarming trend for the future of pain management.

As someone who’s been through the ringer, permanently disabled by a broken system, one thing is clear to me: those who are destined to need future pain care are in for a rude awakening. If you are concerned that changes like this one are endangering the future of pain management in Massachusetts and nationwide, MAKE YOUR VOICE HEARD! The time to act is now.

Concerned? Tell BCBS What YOU Think!

The problem with changes like this one? If successful, others will follow suit. The incidences of chronic pain are growing each year. Worse yet, so are the incidences of intractable pain, for which there is no known cure. Please, tell Blue Cross Blue Shield of Massachusetts what you think of these changes. Tell them what faulty health care has done to YOUR LIFE and YOUR FUTURE. Please contact them now in one or more of the following ways:

OPTION # 1 – Air Your Grievance Via The Appropriate Department

BCBS Appeals & Grievances Dept
1 Enterprise Dr
Quincy, MA 02171-2126
grievances@bcbsma.com
P: 800-472-2689
F: 617-246-3612

Please provide your name & phone number, as well as a member ID if you have one and contact the department via the method of your choice, above. NOTE: If you are a BCBSMA member, listing your member ID will help. They resolve member concerns within 30 days.

OPTION # 2 – Tweet Your Concern, Allowing For Public Discussion

Tell Blue Cross Blue Shield of Massachusetts what you think via @BCBSMAservice. Visit them on Twitter now: https://twitter.com/#!/BCBSMAservice. Discuss the future of #ChronicPain and #PainManagement!

OPTION #3 – Tell the CEO How The Policy Will Impact People

Call the local Blue Cross Blue Shield of Massachusetts office, Monday through Friday 8am-6pm Eastern at (617) 246-5000 and ask for Andrew Dreyfus. Calls for the CEO are put directly through to his assistant. Enough phone calls may prompt a second look at the policy Mr. Drefus instituted.

Please Take a Few Minutes–Share Your Story

Those of us who have been lucky enough to find access to effective pain management have been to hell and back in the process. It’s hard to find a pain doctor we trust, and more importantly, a doctor who trusts us! Tell BCBSMA what you went through/what you are going through because of policies like this one. Tell them why this change will hurt more people like you. It doesn’t take long. My story: It took me seven years, and in that time, I know many people with pain couldn’t take it any longer and chose to end their suffering through suicide. Believe me, I stood upon that ledge, and I wouldn’t wish that choice upon anyone. That’s how bad pain is–it’s a disease like any other. The problem is, very few people seem to understand that simple fact.

Please help BCBSMA understand what it is like to be suffering with intense chronic pain without effective pain management. It’s time everyone understood, so they would stop playing Russian Roulette with people’s lives. Denying treatment for a serious medical condition endangers patients on so many levels. There’s got to be another way to cut costs & maximize profits, doesn’t there?

Additional Resources: http://www.thepainstore.com/articles.html
http://thepainstore.blog·spot.com · http://www.ippu.info

© 2010-2012 Intractable Pain Journal & Heather Grace. All rights reserved.

CRUSHING BLOWS

It’s been a trying month, overall… My 84-year-old grandfather died unexpectedly. The chaos has woven through my life since… It’s times like this when you soldier through a large degree of chronic pain/chronic illness. You push yourself. You just… do. And pay the price later.

Sadly, just 3 days later, the American Pain Foundation announced it had finally succumbed to the financial crisis that had plagued it for several years. The nonprofit abruptly closed shop, effective immediately. 

Apparently, the decision was made by APF’s board on the 3rd. However, this decision was announced to the majority of staff, advocates & the public all at once, on May 8th, with no warning. All resources were pulled from the web, including the Facebook advocacy pages run by volunteer advocates. It was a very jarring, unexpected hit to the advocates, and to the world of pain advocacy–in one fell swoop.

SICKER AND SICKER

These incidents were a huge shock to my already weary system. I’ve been dealing with a health backslide for seven months now. In October, without warning I began to get sicker. It started with a seemingly innocuous sinus infection, and I have yet to rebound from whatever this is. Still. 

I now know that in addition to Central Pain Syndrome I’ve lived with for many years, something else is going on, and has been for some time. My doctor once mentioned that I had some symptoms that were autoimmune in nature. But until I was knocked on my butt, I didn’t pursue it further.

CPS is already a decently cruel illness, characterized severe CONSTANT pain, and nerves that freak out left and right, at random… A leg feels like its on fire one moment. An arm has bees stinging inside it the next. Zaps of lightning spark down my spine. I can’t feel the ambient temperature or even the temp of water on bad days. Sometimes the mere touch of scratchy material against my skin causes immense pain. Those symptoms were chaotic enough.

Who would ever expect someone with Central Pain to have another illness, as well?! Well, I do. It may be Lupus, or maybe not. I’m still in the testing phase and should probably see a rheumatologist next. But these 7 months have already cost me immeasurably: in ability to do things for myself, in a sense of well-being that one gets from having a status quo… even if that status quo sucks compares to “normal” people. Most of all, being more sick than usual has cost me financially. The cushion I once had has been eaten up by this unexpected increase in illness, plus my total inability to work.

A NEW BEGINNING

Through all of this, I find myself reaching that “sick of being sick” feeling so much quicker this time around. I am on the verge of a new beginning. It’s overdue, really. My life shouldn’t consist of fear, anger and a holding pattern… waiting and hoping to feel better. For a long time to come, I will deeply miss my grandfather & The American Pain Foundation as well. *Both* were family, to me. But, people find a way to carry on–they just do. Loss is a part of life. 

For me, starting fresh means adjusting to the hand I’ve been dealt for the moment, and making the best of the cards that are in front of me. Not trying to peek at the next card in the deck, not guessing what that card may be. Just living in the present, with these cards. Now. Today.

I already know my future is uncertain. That is what CPS is like. I am also one of the few with this degree of illness that lives alone. It’s a tough life I lead, to be sure. But do I have to focus on how tough it is with so much intensity? Even though there’s nothing I can do about my uncertain future, there is one thing I can change… ME. 

My first inclination has often been to panic. I worried, even when things were good. Somehow, they never seemed good enough for me to relax. But now, I need to improve my reaction toward change. If I don’t, it’ll cost me dearly. 

And the reality is, I’ve HAD IT with the stages of grief over this recent health curve ball. First, there was denial–I told myself it was “just a difficult-to-treat sinus infection.” I kept saying that for 3+ months, even when unrelated symptoms appeared. Then, there was anger–oh yeah–and lots of it. That’s one thing I do very well. And yes, there was even bargaining: “I will eat better, rest more…” 

None of it helped. It rarely if ever does. So finally, I got to acceptance. And I realized, I don’t have to LIKE IT to accept it. I will accept what is, but I will also do something healthy about it, from now on. I’ve found my way through the 4 stages of grief, but now I choose to move on to a 5th step that seems appropriate, especially due to recent events…

ADVOCACY

Since the loss of the APF, I admit I’ve been a little lost. To me, it was not just any nonprofit, it was mentors and vital information, as well as a caring group of people who ensured important information reached people all over the country. We, as advocates, combated bad information with the most powerful weapon of all: truth. 

Even though I am not sure exactly what my advocacy work will look like down the road, I will just keep sharing. I will tell my story til my dying breath. It is who I am and who I want to be, even if my definition of advocacy means giving a few minutes of myself here and there. I will do what I can, when I can. Because it matters deeply to me.

When you’re up to your elbows in grief and sadness, it’s easy to forget the things that matter most. Though I may not have a lot to work with in the hand I’ve been dealt, I know that advocacy is my trump card. It helps me make sense of the game, even when the rules seem to change midstream.

That’s a reality of life with chronic pain and chronic illness. The rules are always changing. That’s why each good day is precious, as are good moments on the worst days. I could continue to cry, scream, worry or even pout. All that does is stack the deck against me. Don’t convince yourself you are too sick to… Or you can’t…

Because guess what? Whatever you believe you are capable of is *exactly* what will be. If you believe you can make small strides, you can keep going in spite of illness, you will. 

When I realized that life carried on, sick or not, it woke me up. I finally saw reality, and it wasn’t pretty… You don’t have to live life-time ticks by whether you do, or you don’t. 

So the choice is yours… You can sit there & wait for a better hand. But, it may never come. If you don’t find a way to be ok with today, and start living life now, you are the one who misses out on a better tomorrow.

Additional Resources: http://www.thepainstore.com/articles.html
http://thepainstore.blog·spot.com · http://www.ippu.info

© 2010-2012 Intractable Pain Journal & Heather Grace. All rights reserved.

by Heather Grace, IPJ Staff Writer

While I by no means speak for the American Pain Foundation nor the Action Network Leaders, as a Leader myself, I *do* realize what a shock the loss of APF is to people with pain across America, and worldwide. (See APF notice regarding the closing, released May 9.) I think it’s important to note that in addition to the work that is being done to re-home the vast APF database of articles and information as was noted on the APF web site, the advocacy efforts will also continue.

Please know that there are very capable individuals working toward solutions that will ensure the vibrant pain community that existed on APF’s web site(s) is rebuilt. We, as Action Network Leaders are doing all we can to support the rebuilding efforts, as well as our ongoing advocacy projects. Behind the scenes since Tuesday the Action Network, APF’s grassroots advocacy team, have been discussing future plans. The volume of people who have stood up and asked “What can I do to help?” are a testament to the dedication of this wonderful group of advocates.

Even more importantly, we have continued speaking out for the rights of people with pain, and we will continue to do so in every possible medium. We have come together like never before and are determined to continue our work as advocates via Facebook, Twitter, blog/article and interview, to bring a promote a message that represents all people with pain. Each of the Leaders strongly believes that all people have the right to timely, appropriate and effective pain care.

While the loss of APF will be felt for some time, it does not change the dire situation for all people with pain in America nor the need for pain advocacy. Pain is a national health care crisis, a hidden epidemic, and the problem continues to worsen. This is why the Action Network was formed, and continues to grow. We are a dedicated network of volunteer advocates from over 35 U.S. states and Puerto Rico. We are people living with pain, caregivers and health care providers who work collaboratively with other advocates, professionals and organizations to transform pain care in America through grassroots advocacy.

Yes, this is a difficult time for everyone, but I hope all people impacted by pain will see this as an alarm being sounded. If you have the passion to make a difference—please do so. Join this fight. It’s time to stop believing someone else will do it–it’s your cause just as it is my cause. Please show your support via the Action Network California Facebook page. If you feel strongly about the pain advocacy movement, LEAVE A COMMENT ON THIS PAGE letting the Action Network know you are interested in advocacy. We need your help now more than ever!

With all the passion of an advocates heart,
Heather Grace
California Action Network Leader
http://www.facebook.com/APFCalifornia
Twitter: @IntractablePain

Additional Resources: http://www.thepainstore.com/articles.html
http://thepainstore.blog·spot.com · http://www.ippu.info

© 2010-2012 Intractable Pain Journal & Heather Grace. All rights reserved.

With deep regret and heavy hearts, we sadly inform you that due to irreparable economic circumstances, APF must cease to exist, effective immediately. On May 3, 2012, the Board of Directors formally voted to dissolve the organization.

The Board and staff have worked tirelessly over many months to address a significant gap between available financial resources and funds needed to remain operational. Unfortunately, the economic situation has not changed in any meaningful way, despite our best efforts.

APF hopes to be able to transfer content from various information, education, and support programs to other organizations so that you may continue to benefit from the value these programs have provided to thousands of individuals and families across the country.

Your personal experiences in living with pain and seeking compassion, empathy and medical care – often against the odds — have driven our efforts over these many years. This includes enactment of key provisions of the National Pain Care Policy Act in the Health Reform Bill that led to a landmark report issued in 2011 by the Institutes of Medicine. This report documents the shocking numbers of US citizens that live with pain and calls for immediate changes to address gaps in care. Despite this, the current climate towards improving the plight of people with pain in the US continues to be precarious and hostile.

As you unfortunately know, the need for public outcry around the needs of Americans struggling with pain conditions is greater today than ever before in light of the multi-front assault occurring daily on our right to dignified care. Misguided state and federal policies are impeding access to appropriate and reasonable medical care for people struggling with pain, and deterring even the most compassionate medical providers from treating anyone with pain conditions.

It is therefore critical that each of you raise your voices singularly and together to demand the care you deserve. It is only by continuing to demand attention to the ever-worsening barriers and unacceptable suffering that change will occur.

Elected officials, policy makers, and the media need to keep hearing from each and every one of you so they are not allowed to walk away from the consequences of this over-looked public health and medical problem. Please know that although APF will cease to exist, the resolve and commitment among individuals on the Board and staff remain strong.

In honor of National Invisible Illness Week…

While few people really understand chronic pain, even fewer understand intractable pain. First let me start with a simple explanation of the categories of pain. There are three basic types of pain:

(1) Acute – you hurt yourself and are in pain, right now. This is a common event and happens to people several times throughout their lifetime.

(2) Chronic – often occurring when an acute injury does not heal well, chronic pain is intermittent and/or persistent. It can also be severe, and last for long periods of time.

(3) Intractable – the place no one wants to ever get to, when pain is both constant and severe. Meaning, all the time, every minute, every day.

For people with IP, it can be hard to sleep, to eat, to take care of daily activities, to do much of anything for yourself. Many people are bed-bound, hospitalized and overall, very critically ill. Even with pain management, once you get to the ‘intractable’ stage, pain is almost always irreversible. A common cause of this level of pain is nerve damage, created when an acute or chronic injury is not treated promptly and effectively. A mistake many medical professionals make? Denying pain medication, leaving a patient suffering in excruciating pain. If the patient manages to survive, he/she will often live with intractable pain the rest of their life.

Now, here are my 30 things you may not know about my invisible illness…

1. The illnesses I live with are: Reflex Sympathetic Dystrophy and Central Pain Syndrome, which are in the category of intractable pain.

2. I was diagnosed in: 2007

3. But I had symptoms since: 1999

4. The biggest adjustment: Trying to cope with the fact that my head and heart want to do things that my body cannot do. It can be very upsetting.

5. Most people assume: that people who say they are in pain are really just fakers or drug addicts. Talk about pain! Having family and friends listen to media reports and not understand that the general public, and even many health professionals have no idea how to diagnose or treat my condition–that’s rough. Stigma sucks… I’m just a seriously ill person, no different than anyone else with a severe, life-threatening systemic illness. Btw, if I could find a treatment that didn’t involve any pain meds, that is the treatment I’d use. I hate to be under a microscope because of the type of illness I have. Seems really unfair, and also in violation of HIPAA!

6. The hardest part about mornings: Just being able to fall asleep and get enough rest is hard. My body typically won’t let me sleep until the early morning hours, and by that point, I am exhausted. Even so, I can only sleep comfortably for four hours, on a good day, without getting up out of bed. I sometimes dream enjoying a lazy day in bed… it’s an impossibility for someone like me!

7. My favorite medical TV show: I’ll probably get some nasty-grams for saying this, but it’s House. I enjoy a good diagnostic puzzle. When I can solve the puzzle, when I know what the illness is, I really love it. I realize that House is often unkind to people with pain and believe me, I’ve written letters. Many letters! My dream is that IP and/or Lupus (which seems to be a running issue with the show), are spotlighted, for once!

8. A gadget I couldn’t live without is: my Blackberry. Yesssss! Love my baby so.

9. The hardest part about nights: getting to bed, ever, during nighttime. If I do sleep at night, it’s typically an hour or so, around 11pm and then, I’m wide awake for hours afterward. Nerve pain is a big ol be-otch!

10. Each day I take: you would be shocked how many vitamins, minerals, supplements! Let’s just say it’s enough pills that I could pour them in a bowl and eat them with a spoon! (Not that I would, gross!) Over 50, every day. We’re talking sublingual Pregnenolone, Vitamins B, D, C, Folic Acid, then DHEA, GABA, Taurine, 2 multivitamins, 3 hair vitamins, MSM, glucosamine/chrondrotin and oh so much more! Yes, a small number of my intake is prescription, and out of those, a portion are pain medication, but most of my regimen is about controlling nerve symptoms and ensuring appropriate amino acids and hormones to fight my pain naturally. And, of course to prevent a heart attack or stroke, a condition I also have called Cardiac Adrenal Pain Syndrome.

11. Regarding alternative treatments: I have mixed feelings. I’ve tried plenty that are a bunch of hooey! Any product that uses the word “pain” and the word “cure” together? Please don’t believe the hype. But, I do all I can to minimize intake of prescription medication and manage my pain naturally. Massage can be nice but for me, it’s too much because of my nerve damage. As stated above, I love supplements, and try and and all recommended by my doctor, so long as I have the resources to do so! I also use pain sprays and balms, to loosen tight muscles and prevent severe headache and body pain. Exercise is also important for all people with pain, because if you don’t use it, you lose it. Just walking some days is enough, but if I am up to it, I like to swim a little and of course, stretch. Nothing fancy because my body responds poorly when I overdo it–could be useless for days! As for trying new options? I go with advice from the doctors I trust, and/or knowledgeable pain patients I know/trust, to find appropriate treatments. Otherwise, it’s all a shot in the dark and often, a ton of cash down the drain!

12. If I had to choose between an invisible illness or visible: I’d choose NO THANK YOU! Are you kidding?! I mean, ok, visible would be easier in a lot of ways. However, “visible” for people with pain often means you’re wheelchair-bound or at least require a stabilizing product to walk, such as walking stick or cane. When I am well enough, I don’t need these stabilizers, and I am so thankful. Neither visible or invisible is exactly fun!

13. Regarding working and career: I’m an Advocate, first and foremost, these days. I also blog, use social media and sometimes do more, when I am physically able. It’s a struggle, and I cannot work a full 40-hour work week, but I know I am blessed to be able to do the things that I do!

14. People would be surprised: that I am in pain 24/7. Can you even imagine that? No joke! Try falling asleep when your arms are burning or you have a pounding headache and your muscles are in knots. It’s my everyday, people. Every darn minute. Yeah, it’s surprising–until I lived it, I had no idea it was even possible!

15. The hardest thing to accept: everything is challenging in ways most people don’t understand. Some days, people cut you slack, but before long, they ‘forget’ and are getting upset if you aren’t as capable as someone who is not in pain 24/7. I realize at times I over-promise. I know that in my heart I want and intend to do everything I say I will. But at times, it just doesn’t work out that way. It sucks to disappoint others, especially because I am super hard on myself. I cannot stand it when I disappoint someone. I was so Type A before, it isn’t in my nature to give anything less than 110%. And, how realistic is that, when I can only give 65% on a good day? I’m trying to find balance, and help others understand my limitations, too. Not the easiest thing in the world to do!

16. Something I never thought I could do with my illness: oh, so many things! Laugh til my stomach hurts. Use a computer again for more than 2 seconds. I find that my abilities change all the time. On one day, I may not be able to do anything, because my whole body hurts. The next day, I feel like Super Girl, cleaning the house like a whirlwind. The next day, I pay for it. And the day after, and the day after that. A few days later, I am blogging, shopping with family. Doing more advocacy work. It’s ever-changing, dealing with intractable pain.

17. The commercials about my illness are: Hmm. Well, I know of one. For Grace did a PSA with Jack Coleman on RSD/women in pain. It was great. But to my knowledge, there have never been any about Central Pain Syndrome. Or, for that matter, intractable pain. Maybe in the UK, but certainly not here! APF has done a lot of online stuff, but nothing on tv, that I am aware of. If there are more out there about chronic/intractable pain, someone please let me know!

18. Something I really miss doing: being young and doing crazy things on a whim… like a road trip, or a theme park, or hiking. Those things are just way too hard for me these days. I had so many things I wanted to do, but my pain started when I was in my mid-20s! I miss rollerblading all the time, that’s for sure. Even did some with my dogs. It was a blast!

19. It was really hard to have to give up: having a family. It sucks to have your illness make up your mind for you, rip the choice right out of your hands. I mentioned this at a family get-together earlier this year, and two people there looked at me, shocked. They were women in their late 40s, both who had nearly grown children. They said, “You still have time! Plenty of time!” I didn’t go into detail about the WHY, because if they didn’t get it, I wasn’t going to bring it up… this wound is so deep that I often just put it out of my head. If I talk about it too much, the tears inevitably come…

20. A new hobby I have taken up: blogging, social media! I love it, and it feels like I can reach so many more people, even if I am home, feeling sick and not able to go anywhere. It’s great as a tool to help others, as well as to get support myself…

21. If I could have one day of feeling normal again: I HATE THIS QUESTION AND REFUSE TO ANSWER IT. “What ifs” make me way too emotional. They are detrimental, honestly. It’s not fair to ask someone who is seriously ill to answer a question like this, because it’s very painful. Try being young and looking fairly healthy, and inside, you feel like you’re older than your grandmother. It sucks.

22. My illness has taught me: to be better to myself. To accept the things I cannot do and love myself anyway. At least, on a good day, I can do that!

23. Want to know a secret? Having intractable pain is really hard. It just is! I know I’ve become a stronger person, and I know that I can handle way more torment than the average person, as a result. But when it’s gone on for so long that you have no idea what it is like to be pain-free? It’s devastating. I find myself crying more easily, allowing people to see more glimpses of the cracks in my armor, the longer I have dealt with constant, severe pain. Especially on a tough day. So, if you see me crying? Know I am having a really hard time and just need a break–please!

24. But I love it when people: care enough to ask how I am and really want to hear the answer, not just the standard reply, “fine.” I am so thankful for the people close to me, who are there for me through good times and bad. Because let’s face it, the bad times can be pretty darn awful!

25. My favorite quote that gets me through tough stuff: I’ll go with the classic poster of a kitten hanging from a tree with the phrase: “Hang in there!” Kidding! Honestly, there’s no one thing that gets me through every single rough patch, but I do appreciate kind words from loved ones, soothing music, gentle hugs, a really silly comedy on tv, puppy kisses, occasional junk food, and yes, even a motivational quote or two. But right now, I just don’t feel like going all Deepak Chopra. So sue me

26. When someone is diagnosed: I am an open book. I share whatever I can, to help them. I remember being alone and afraid and not knowing what I was going to do. Losing everything, little by little. I would tell them to take advantage of the resources that are out there, by experts. I have 4 great ones at the top of http://www.thepainstore.com/articles.html.

27. Something that has surprised me about living with this illness: honestly, that I am still here. I’ve been mid-suicide more than once. The pain has been so severe, I was going to end it, right then. After surviving the worst, I found out that the many heart palpitations I’d had and the times I was nearly passing out? Those were my body nearly shutting down. People who are not treated quickly and effectively for intractable pain typically die within a few weeks. I am lucky–really lucky–to be alive. I managed to escape the clutches of Cardiac Adrenal Pain Syndrome (CAPS) throughout the worst of my uncontrolled pain. Most people with IP end up dying from a heart attack or stroke, when their heart and adrenals can no longer deal with the constant pain signal. This is CAPS. I’m living with a rare category of illness that I was supposed to have already died from. I know that it’s a miracle that I am here, and as a result, I owe it to everyone else with IP to share what I know, to help when I can… to be there for people who are seriously ill, like I was, hanging all alone at the end of my rope!

28. The nicest thing someone did for me: I’ve gotten a whole new family of support! Really! They gave me the greatest gift, by being there when no one else was… When the chips were down and I’d lost all hope, all faith in humanity, and even in God, I decided to go to just one last doctor. I told myself, even before that visit, “If he can’t help me, that’s it. I will find a way to end it, once and for all.” I was tired of the suffering–seven years worth! The kicker? This doctor didn’t just help me with my medical issues, he gave me the greatest gift by introducing me to the sweet, supportive wonderful advocate who would become my new sister! She’s truly helped me get back on my feet, after the pain had wore me down to nothingness… I am so grateful, to the doctor and to my sister for saving my life!

29. I’m involved with Invisible Illness Week: It’s part of Pain Awareness Month and anyone who is healthy enough should really be out here, fighting for all the people who are too sick to fight. It’s important to be doing this advocacy work, right now. Until everyone has timely and appropriate access to pain care, our work is not done!

30. The fact that you read this list: is so SO WONDERFUL! Thanks for reading it, but I hope, even more, that you will take the time to write your own! Or, if you aren’t a person with pain, know that it is precious gift that you read this! Whoever you have in your life with pain, they are very, very lucky. Reach out to them, and support them, do all you can… so that every person with pain is well enough to enjoy life again. Help him/her rebuild his/her broken body and spirit, and be joyful again!

One more thing… I hope you enjoy National Invisible Illness Week and Pain Awareness Month, one and all! *Please* keep the advocacy work going, all year long! -HG