Changing Our Country One Addict at a Time

By Mary Maston, Guest Columnist

It’s obvious that our current ways of dealing with addiction aren’t working. They have never worked. The entire process of making drugs illegal and incarcerating those who use, possess, and sell them has been an epic fail in every way imaginable.

The “War on Drugs” – a phrase coined by President Nixon -- has been raging for almost 45 years, longer than I have been alive. How many trillions of our tax dollars have been spent in that time and where has it gotten us?

According to the officials, the problem of addiction is worse now than it’s ever been, despite throwing people in jail left and right. Making things even worse, legitimate chronic pain patients are being lumped together with addicts and drug abusers -- making opioid pain medication harder and harder to get.

We haven’t solved anything, and we never will if this is the path we continue to take.

"Insanity: doing the same thing over and over again and expecting different results.” -- Albert Einstein

It’s time that we start thinking outside the box. We need a different approach and the police chief of Gloucester, Massachusetts may have found one.

Chief Leonard Campanello has worked in law enforcement for 25 years. In that time, I’m sure he’s seen just about every scenario imaginable and then some. Perhaps he’s grown tired of seeing the same people in and out of his jail repeatedly. Or perhaps he just has a bigger heart than most, and the desire to contribute to a real solution. That’s what I choose to believe.

After dealing with addicts repeatedly over the years, Campanello has decided to change the way he does things and tackle the issue from a totally different angle.

Campanello recently announced that anyone who walks into his police station and asks for help with addiction, and surrenders any drugs and paraphernalia they have, will not be arrested. Instead he/she will be put into a detox and rehab program, funded by the money the police department has collected from drug raids.

You read that correctly: Anyone who asks for help will receive it without judgement, persecution, fines, or jail time. It’s called the Gloucester Initiative.

It’s a bold move. It’s never been attempted before. Many may say it’s crazy, that it will never work. It goes against everything we’ve heard about addiction.

Get this though: it is working.

It’s an absolutely brilliant concept and it’s already changing lives in the short time since it’s been started. It’s also gaining national attention. There are many organizations that are starting to come on board, and because of that, the Police Assisted Addiction and Recovery Initiative  was born.

police chief leonard campanello

police chief leonard campanello

So far over two dozen people have entered the program. While that doesn’t seem like many in the grand scheme of things, it’s a start. The drugs those people had are off the streets, and they are getting help when they would otherwise be using and selling. What if 28 drug addicts were no longer on YOUR streets and in YOUR community? Would you feel a little bit safer, maybe a little less cynical? Everyone has to start somewhere.

This proves that there are people who are addicted and who truly want help, but haven’t been able to get it for any number of reasons. Maybe they can’t afford it – rehab facilities aren’t cheap. Maybe they don’t have insurance or if they do, it doesn’t cover extended treatment.

If they are using illegal drugs but haven’t been caught yet, maybe they are afraid of going to jail for the first time. Maybe they enjoyed being an addict for a long time, but don’t want to be one anymore and don’t know how to stop.

Think about it for a moment. This could be a huge game changer for chronic pain patients, especially if this initiative takes off nationally like I’m hoping it will.

Right now, everyone is so quick to label anyone that uses pain medication for any reason as an addict. What if addicts weren’t abusing anymore? Perhaps that would equate to better treatment for us, without the stigma of being judged so harshly because we actually need medications to function; not because we want to get high, but because we want to live somewhat productive lives and medication is the only thing that helps us.

Think about how much better your life would be if medical professionals got back to actually treating patients with debilitating diseases and conditions – respectfully – instead of focusing on policing everyone that walks through their doors and denying medical care.

I’m not naïve enough to think that this is going to completely solve everything. Not everyone wants help and there are some genuinely bad people in this world, but I’m holding onto hope that this can potentially make a positive difference in the lives of millions – the ones that do want help.

Putting people in jail doesn’t accomplish that, and there are people out there that would stop using drugs if given the opportunity to do it in the right environment.

Just ask those that have come forward. Out of all of the things I’ve read over the years on the subject of the war on drugs, this is the only thing I’ve come across that has the potential to actually change things for the better and make an impact.

That’s why I fully support this cause. I would be insane not to.
 

Mary Maston suffers from a rare congenital kidney disease called Medullary Sponge Kidney (MSK), along with Renal Tubular Acidosis (RTA) and chronic cystitis. She is an advocate for MSK and other chronic pain patients, and helps administer a Facebook support group for MSK patients.

Mary has contributed articles to various online media, including Kidney Stoners, and is an affiliate member of PROMPT (Professionals for Rational Opioid Monitoring & Pharmaco-Therapy).

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

How Pain Clinics Fail Patients

By Jennifer Kain Kilgore, Guest Columnist

“You have exhausted all of your options.”

That is what I was told when I was denied as a new patient at Massachusetts General Hospital. Western medicine has officially given me the heave-ho.

Because I have a “long-standing relationship with another pain management clinic,” unless I am being referred for a specific procedure that my current doctors do not have, I am not allowed to become a patient elsewhere.

It’s so strange to reach the end of the road. It’s one thing to be told that the doctors are running out of ideas; it’s another thing entirely to have someone tell you that there is literally no other procedure in existence. All the treatments they are willing to try have been attempted. Science and research have not caught up yet. This is as good as it’s going to get.

What they’re willing to try. That’s the operative phrase here. Despite my decade of experience in the medical system, despite never exhibiting pill-seeking behavior, my pain management doctors refused to prescribe any kind of opioid safety net. If the pain gets really bad? “Go to the ER.”

Really? That’s the best you can offer? “Go to the ER”?

“I don’t think you understand,” I told my doctor. “I’ll have to quit my job. I can’t function like this.”

Shrug.

That’s the thing about pain management clinics. They do not cure. Most of the time they do not even have the power to manage. They try to dull the pain, to numb it, just long enough to get you out of their office. The problem is that pain is subjective. A finger slammed in a door can hurt worse than a fracture, and everyone thinks their pain is intolerable.

So if you keep coming back and complaining, then the problem must be in your head. Even though I told my pain doctor that I am already seeing a pain psychologist, she insisted that I meet with one in-house in order to come to terms with the “new” me. Like I’m not letting some kid sit at the lunch table with me. Play nice, you two!

I actually told her that when she said “you have to learn how to live with the ‘new you,'” not only did she make me want to murder everyone in my immediate vicinity, but she was also entirely patronizing. I’m sure I got some black mark in my medical file for that comment (“aggressive,” “argumentative,” “abusive,” etc.), but don’t tell me how to react to my issues when you have no experience dealing with them. I hope to God she never says those words to another patient.

Pain management doctors do not work well with patients who need more than the usual series of steroid injections. I’ve had the steroid injections, the ablations, the Botox in my muscles, the pills, the trigger point injections, the surgery, the infusion. There are no other procedures.

“We’ve done everything. So why are you still hurting? It must be in your head.

Of course it’s in my head. That’s where pain is processed: IN YOUR BRAIN. My brain has learned these pain pathways, and my nervous system is constantly hyper-stimulated. It doesn’t take a Philadelphia lawyer to figure that one out.

 “Give her antidepressants. Give her nerve meds. Just don’t give her opioids.” That’s the reasoning my pain doctor kept parroting: “It’s been clinically proven that opioid medication doesn’t help chronic pain.”

I know that it doesn’t — not in the long run. Not if you take it every day, multiple times a day. All I need is a safety net for the really bad days. I was prescribed 14 Vicodin in March. Guess what? Still one left. Whole bottle of Tramadol? Untouched. I take them when I need them.

Doctors are more interested in protecting their own medical licenses than handing out medication to those who need it — which I can understand. If it were between my law license and some person I only see once a month, I’d go for the law license. For years, however, doctors over-prescribed until the government cracked down; now they under-prescribe and hope that none of their patients will notice. The pendulum has swung so far in the other direction that it’s only a matter of time before something breaks.

Pain management doctors must be frustrated with patients like me. It’s not like they’re huddled in a conference room, rubbing their hands together and muttering under their collective breath the names of patients they’re going to disappoint. I hate when I fail at my job. I’m sure they feel the same. But they are the gatekeepers, and they are in my way.

Everything that has helped recently has been found by my father, by my husband, and by me. I exercise as much as I can when the pain allows. I use a BodyBlade in order to strengthen my core muscles. I practice mindfulness and meditation. I stretch and do yoga on a daily basis. I walk at lunch. I get pain relief massages. I go to the chiropractor. I found the Quell pain relief device, which I adore and wrote about on my blog.

These are alternative forms of care, and they have been all found — wait for it — by people other than my pain management team.

We chronic pain patients truly have to be our own advocates. It is our responsibility to find the interventions that will help us. These treatments might seem strange or like some sort of hippie nonsense, but I am done being told by doctors that the pain is all in my head and that they can do nothing to help me. I will help myself. This is not the best it is going to be.

J. W. Kain is an attorney in the Greater Boston area who also works as a writer and editor in her spare time.  She has chronic back and neck pain after two car accidents.

This column is republished with permission from her blog, Wear, Tear, & Care.  

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Power of Pain: Avoiding Summer Travel Pain Storms

By Barby Ingle, Columnist

If you’re flying somewhere this summer, chances are you’ll have to contend with overcrowded terminals, flight delays, and security checkpoints. There are ways to make traveling easier and less stressful for chronic pain patients.

My first suggestion is to pack your medications in a carry-on bag. If your luggage gets lost, you won’t have to worry about where or how to get your medications.

Airport terminals are hectic and people are at a frantic pace, so by arriving early you can go at a slower, more relaxed pace and make the hassles of dealing with disabilities more manageable. Your goal is to make it to your destination on time, in a low pain level, and in a good mood.

When you decide to make a trip, it is best to plan ahead. I use the Internet to get destination information. I check out the floor plans of the airports I am coming and going from, and what types of foods are available in the terminals. I also request handicapped services from the airline, bus depot, car rental company, and hotel ahead of time.

If you are on oxygen, let the airline know 30 days prior to travel or as soon as you know that you will be flying. In-flight oxygen needs to be prearranged, and there is typically a charge. Then call 24 to 48 hours before your flight to confirm the oxygen arrangements.

At the airport, if traveling alone, bring tip money. I try to bring one-dollar bills and tip a dollar for each bag that I am assisted with, both when I am departing and at my destination. I also pay the person pushing my wheelchair one to two dollars for their assistance. I also have a scooter, so I do not always have to pay for the wheelchair assistance.

It is not mandatory to pay for help; however, the person pushing you often works for tips only or tips with a low wage.

Be sure to let them know if you want to make any stops to use the restroom or purchase food while they are assisting you. When they bring you to your gate, ask to be “parked” at the door or the start of the line. Make sure that the airline person sees you. If you sit off to the side, they may miss you, and you will not be able to take advantage of pre-boarding.

If you need extra time and assistance, you may have a problem. Typically, the flight attendant or ground crew comes over to me and moves me up in the plane if I have a seat towards the back, and they ask me if I need any assistance walking, or if I need an aisle chair to get to my seat.

Sometimes I board with the first group, when they call for people who need assistance. I do not tip the attendant who brings me down the jet way.

When I pre-board, once on the plane, if I need to take medication or I am nauseated, I ask for a small glass of water. If they do give you a glass of water, they must take it back before the plane takes off, so make sure you drink what you need when they give it to you.

Let them know while in flight if you need assistance in using the restroom or need blankets and pillows for comfort.

When you arrive at your destination, stay in your seat until your wheelchair assistance has arrived. They typically ask you to wait until the other passengers unload so that you do not hold them up or so that they do not bump against you and cause you further injury.

At baggage claim, if you are alone, ask the assistant to get your luggage and to bring you outside to meet your party. Once you are in a place you do not need assistance, give them their tip and thank them, so they may go help other travelers needing assistance.

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the Power of Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

198 Thoughts I Had While Watching ‘Cake’

By Crystal Lindell, Columnist

I finally got around to watching Cake, the movie about chronic pain starring Jennifer Aniston.

Aniston plays Claire Bennett, who suffers from chronic pain and has visions of Nina Collins, played by Anna Kendrick. Nina also had chronic pain, but in the opening scene we are told she killed herself by jumping off a highway overpass.

I would definitely recommend you see this movie. It’s currently playing on Netflix, and if I know anything about people with chronic pain, it’s that they all have Netflix. So get on that, and then read this.

Basically everyone in my life has recommended this movie to me.

Lots of spoilers ahead, obviously.

1. Well, I guess, since it’s on Netflix, I’ll give it a go. It’s basically free.

2. I swear if they show Jennifer Aniston “getting better” in any way I’m going to scream.

3. And I really hope she doesn’t magically “get off opioids” because that crap is not realistic at all.

4. Of course it opens on a support group.

5. Seriously, where is this support group? Because I have yet to find one for people with chronic pain anywhere near me.

6. Hey, that’s Lynette Scavo from Desperate Housewives!

7. I’m glad she’s found some work since that show ended.

8. Yay! It’s Anna Kendrick!!! I hope she sings something from Pitch Perfect in this movie.

9. Oh. Anna Kendrick killed herself.

10. That’s sad.

11. Why is this group so mad at Anna Kendrick?.

12.  If you have chronic pain, and you can’t at least understand why someone would kill themselves in that situation, then you don’t actually have chronic pain.

13. #SorryNotSorry

14. Look! It’s Rachel from Friends.

15.  I wonder if Ross is going to be in this too.

16. Nevermind, he’s probably on a break.

17. Ha! I crack myself up. 

18. Someone should tell Claire about dry shampoo.

19.  I get it, showers suck when you have chronic pain. But that’s why God invented Batiste.

20. The fact that Anna Kendrick ended up in Mexico after her suicide is actually kind of hilarious. In a dark humor kind of way.

21. Man, everything gets stuck in customs. Even Nina.

22. So Claire’s laying down in the back of the cab?

23. I’m assuming because sitting up hurts?

24. Whenever I try that I get super car sick because of all my meds.

25  I wish I had a really nice Hispanic woman to take care of me and make me quesadillas.

26. That would probably make it a lot easier to cope with my chronic pain.

27.  What? The freaking support group kicked Claire out? Is that a thing? That support group sucks.

28.  Lynette, I’m so disappointed in you.

29. Ug. Claire and her husband are separated. Chronic pain man. It effs up your love life.

30.  I always wonder how/why people try to keep a secret stash of meds. I never have anything extra to put in a bottle behind a painting. I use all of my meds, every month.

31. Yep, trying to sleep with chronic pain is a bitch.

32  And I cry throughout the night a lot too.

33. This movie got that part right.

34. I wish I had a pool like Claire.

35. Maybe if I had a personal pool in my backyard, I could go in it and feel better.

36. Why is the pool green though. Just the evening light? It makes it look like a scummy lake.

37. And the opossum isn’t helping the vibe.

38. Seriously, I need to move to California though, where you can apparently take a dip in the middle of the night, and it’s so nice outside that you can fall asleep in a lawn chair like it’s nbd.

39. I feel like this movie is trying to make Claire seem like a bitch, but honestly, when you’re in pain and you’re riding in a car, every bump really does make you want to die.

40. I try to be nice and witty with my doctors too, just to make sure that they don’t think I’m just a drug seeker.

41. Ahh. Wine and meds. The best meal ever.

42. Also, true story, the doctor I saw at the Mayo Clinic once told me that drinking alcohol could help with my pain. So it’s not as crazy as it sounds.

43. Even chronic pain, greasy hair and a massive scars isn’t enough to repel men when it’s Jennifer freaking Aniston.

44. Congrats Claire! You get it girl!

45. Yep, having sex with chronic pain sucks.

46. How can you be physically intimate when it hurts every time someone touches you?

47. So based on Claire’s housekeeper’s reaction here, I’m going to guess that Claire’s kid died and those toys belonged to that kid.

48. Yep, this movie really is trying to make Claire look like a bitch.

49. I mean, what is up with this scene between the housekeeper and her daughter?

50. Claire’s not a bitch though. She’s just in pain.

51. And apparently, her freaking kid died.

52.Those two things would drive anyone to crazy town.

53. Yay! Anna Kendrick is back!!! I hope she sings Cups.

54. So Claire is kind of trying to kill herself with help from Anna Kendrick?

55. I can see that.

56. I think drowning would be a particularly awful way to die though.

57. Oh look! It’s that chick from the Good Wife!

58. Who was she on that show? Like an incompetent lawyer or something? 

59. I wish I could get aqua therapy. There’s nothing like that where I live.

60. Yeah. I’m on Claire’s side here. I don’t think the super healthy chick in the water really understands how much it hurts.

61. Oh? Really? Someone with chronic pain hasn’t magically gotten better in six months?

62. SHOCKING!

63. Like I said, the healthy chick in the pool doesn’t get it.

64. Another drowning attempt.

65. See, drowning isn’t a fun way to go Claire.

66.  I knew she would quit mid-way through.

67. And by “quit” I mean, “decide to live.”

68. Again with the laying down while they drive stuff.

69. Seriously, I would be throwing up all over the place if I tried that.

70. Maybe I should try that.

71. I mean, long car rides are one of my biggest issues. Would lying down in full recline position maybe help?

72. Oh, Claire’s going to go see where Anna Kendrick tried to kill herself. Interesting.

73.  I really don’t think Claire is going to jump, seeing as how we’re only 23 minutes into this movie.

74.  It was dream.

75. Maybe.

76. Either way, Claire lives!

77. Go Claire! You totally should sue the support group!

78. Oooo! Anna Kendrick’s husband is Australian!

79. I LOVE Australian accents!!!

80. This movie has suddenly become an episode of House Hunters. “Look what we’ve done with the kitchen!” Fun.

81. The Australian guy looks strikingly like Chris Pratt.

82. Is Chris Pratt from Australia?

83. Man, I wish I was Jennifer Aniston with chronic pain. Even Australian Chris Pratt look-a-like is into her.

84. Claire and her housekeeper are going to Tijuana!

85.  I want to go Tijuana! 

86.  Is this real? Can you really get opioids without a prescription in Mexico?

87.  Now I REALLY want to go to Tijuana.

88.  I wonder how much opioids cost in Mexico.

Cake-Movie.jpg

89. The pharmacist in Tijuana just called Claire a rich, white woman. But that’s where this movie get chronic pain wrong. If all you do is sit around all day, drink wine, and pop pills, there is no way you are rich.

90. Oh, maybe Claire got some kind of insurance money when her kid died. I guess that makes sense.

91. Now I want Mexican food.

92. I really wish the only Mexican restaurant in my town hadn’t give me and my family food poisoning.

93. Crap. They got stuck in customs.

94. Just like Nina.

95. Oh. Hello there, Danny from the Mindy Project!

96. So Claire’s ex-husband was able to get them out of customs?

97.  I need to find an ex-husband who can get me out of customs.

98. “Tell me a story where everything works out in the end for the evil witch.” Ok Claire.

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99.  Now Claire’s back at the Australian guy’s house.

100. Apparently Australian guy is cool with her randomly showing up in the middle of the night?

101.  He seems weird.

102. Anna Kendrick was 31 when she died in this movie?

103.  Crap. I’m 31.

104.  And she already had a 5-year-old?

105.   I’m so behind in life.

106.  Wow, Australian guy is really mad at Anna Kendrick.

107.   I feel like if Anna Kendrick was in so much physical pain that she jumped off an overpass, then you know, maybe she was in a lot of physical pain. Something her husband doesn’t seem to be taking into account.

108.  But, also I get it: Grief, it sucks.

109. Billy Joel. Interesting choice Claire.

110. Ahh. More wine. Better choice Claire.

111.  Now Claire is back at the Australian guy’s house AGAIN?

112. Do you think they’re ever going to have sex?

113. Or no?

114. Really? Anna Kendrick had a bunch of pain meds in the house, and they’re still just sitting there in the medicine cabinet?

115. I call B.S.

116. Oh. Hey. Anna Kendrick is back again.

117. She’s sassy in this movie.

118. Are we ever going to get Anna Kendrick’s back story?

119. Like, did she have a bad back? Or MS? Or intercostal neuralgia? Or what? Why was she in so much pain that she killed herself?

120. Hello Australian guy’s son.

121. “I like any animal that bites.” Ok again Claire.

122. And we’re back at the cemetery.

123. Now we’re in a diner. With Anna Kendrick. Seriously? If we don’t get to hear Cups in about five seconds, I’m gonna be so mad.

124.  I’m so mad.

125. Claire, I hate to tell you this, but you’re officially losing your shit.

126. You’re yelling at a ghost in a diner? This does not look good for you.

127. And don’t try to blame the meds, because I take tons of meds, and I don’t see Anna Kendrick anywhere.

128. Amazing Hispanic housekeeper invited Australian guy and his son to lunch.

129. AND she’s going to make mango tamales.

130. Now I want Mexican food again.

131. And we’re back with the healthy lady in the pool who has no clue.

132. “Sometimes I suspect you think I’m just this uncooperative, old bitch who’s making all of this up.” Preach Claire. 

133. Did she just ask Claire if she wants to get better?

134. Pretty sure everyone, everywhere with chronic pain WANTS to get better.

135. It’s Lynette again.

136. Really? Claire made you look unprofessional Lynette? Pretty sure you kicking her out of group was what made you look unprofessional.

137. Vodka from Costco solves everything.

138. What the heck was the point of that scene?

139. Are they just advertising Costco?

140. Woah! Claire curled her hair!!

141. You look nice Claire.

142. Oh no. Claire is going to try to lend her dead kid’s swimsuit to Australian guy’s kid.

143. This is not going to go well.

144. Nope. Didn’t go well.

145. Thank God for the nice Hispanic housekeeper.

146. She fixes everything.

147. Even Claire.

148. Australian guy, “How can you still live here?”

149. Umm, well, it’s a gorgeous house in California, with a freaking pool, that’s how.

150. This lunch is going so well.

151. Nevermind.

152. Hey, that’s Lynette’s real-life husband at the door.

153. Yep, that’s pretty much how I would react in that situation if I was Claire.

154. TBH, that guy was dumb for even showing up at Claire’s house.

155. Jerk.

156. So wait, did Claire try to kill herself with the pills?

157. Or was she just trying to take a lot of pills so she would feel better?

158. And there’s the nice Hispanic Housekeeper again.

159. Seriously, I wish she was my housekeeper.

160. Hello again, Anna Kendrick.

161. I would totally want to have sex with the entire Madrid soccer team too.

162. Soccer players are hot.

Cake_612x380_0.jpg

163. Baking a cake is cool too, I guess.

164. Oh. A cake. I get it now.

165. “Saints don’t jump off bridges.” Don’t they?

166. Ok. Sure, Claire. You’re just going to go off your meds cold turkey. Uh huh.

167. Why would they put up a drive-in theater right next to train tracks?

168. Wouldn’t that make it hard to hear the movie?

169. Claire is totally going to try to kill herself on those tracks.

170.  Anna Kendrick, “What would Saint Jude do?”

171. Claire, “I bet that son of a bitch would lay down on those tracks and just let Union Pacific put him out of his misery.”

172.  Agreed.

173. Mmmmm. McDonald’s French Fries.

174. Those things are so delicious.

175. You WERE a good mother Claire.

176. Maybe.

177.  We actually don’t really know.

178. And, once again the Hispanic Housekeeper to the rescue.

179. I can totally understand the housekeeper’s Spanish.

180. Well some of it.

181. I could totally get by in Argentina.

182.  Really? Someone stole their car? Because their lives don’t suck enough.

183. Why does every single movie and TV show ever set in California feature a runaway?

184. Everyone must run away to LA.

185. I should run away to LA.

186. Runaway: “Gross. I won’t do porn.” Famous last words.

187. “A homemade, yellow cake with fudge frosting.” That does sound good.

188.  Why can’t the housekeeper make the cake for Claire though? Because it’s American food?

189. I feel like the housekeeper could handle it. She makes mango tamales for goodness sake.

190. That is a gorgeous picture of Claire’s son.

191. Seriously, if I had a kid die AND I had chronic pain, I’d be a way worse shape than Claire.

192. Aww. Look. She got Anna Kendrick’s kid the cake that Anna Kendrick wished she could make him AND a huge shark kite.

193. Claire sat up. In the car

194. And that’s it. That’s the end.

195. Effing independent movies. They always just stop in like the middle of scene.

196. But also, chronic pain. It never ends either.

197. So maybe the best you can hope for if you have chronic pain is learning to sit upright in the car?

198. And cake.

Crystal Lindell is a journalist who lives in Illinois. She loves Taco Bell, watching "Burn Notice" episodes on Netflix and Snicker's Bites. She has had intercostal neuralgia since February 2013.

Crystal writes about it on her blog, “The Only Certainty is Bad Grammar.”

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Why Choosing a Doctor Is Like a Job Interview

By Pat Akerberg, Columnist

There’s an online answer for just about everything.  If you use a search engine, you are soon inundated with links, marketing products and services to match your needs.  There are even dating services that connect you with possible romantic partners.

Choosing the right doctor isn’t quite as simple as shopping for a new pair of shoes or making a love connection. Shoes that don’t fit can be returned. First dates that don’t work out can be cut short.  But our medical needs carry significant costs, benefits and risks. The right -- or wrong -- doctor can be life changing.

Like any important decision, it’s best to begin with an approach in mind. Doctors carefully scrutinize us as would-be patients.  Isn’t it in our best interest to make the same effort? 

After all, we both have important needs to fill.  So what if we approach our decision just like a job interview, with us doing the hiring?

When I worked in business, the three key points of a solid job interview were focused on:

1. Does the person have the competence to be effective in this role?

2. Are they a “good fit” for the job requirements?

3. Does the person pose any risks or concerns?

If any of those questions turned up a negative answer, that candidate was eliminated. We can borrow from this formula as we search for the kind of doctor that we need.

Competence

This includes expertise, years of experience, a solid track record, and the transparency to share it.  Without transparency, there’s very little objective information available, like a surgeon’s complication rates, for instance.  

There are some ways to get a feel for this prior to your appointment.  The internet can be helpful with this part of your research.  You can conduct a search for support groups for your particular chronic pain condition. (Example: “support groups for trigeminal neuralgia”).

In my case, I rely upon one that I consider to be my most valuable resource for facial pain – it’s the TNA Facial Pain Association.  Once I joined, through discussion groups I could get candid feedback from other members about their experiences with different doctors or treatments -- and learn who the leading experts are in the field. Support and friendship with people who truly understand what you’re going through are extra benefits

An informative website from the Agency for Health Care Resources and Quality can also help with several quality of care topics, including pertinent questions to ask your doctor.

The leading experts may not be in your geographic area.  Will you allow that to keep you from consulting with them?  Some doctors offer Skype consultations if you ask.  Local may not always equal the best chances for success.

A Good Fit

From a doctor’s perspective, a good fit requires you to share factual information about yourself so that they can effectively treat you. 

A good fit from a patient’s perspective begins with a list of the traits and characteristics that meet your unique needs.  These are your “must have’s.”  Here are a few of mine for doctors:

  • Listens and makes eye contact with me
  • Seeks to understand, invites my input
  • Seems engaged and interested in addressing my situation
  • Takes time to explain things to me
  • Comfortable with questions (isn’t defensive or dismissive)
  • Flexible, operates well in a partnership
  • Transparent about treatment outcomes
  • Offers a clear plan

There is no substitute for the experience gained from tuning up your radar and conducting your own interview.  It can be helpful to have a spouse or family member accompany you to appointments to compare notes. 

You may want to make a “nice to have” list too. People in pain often want some empathy from healthcare providers, yet may not always get it.  Is empathy a “nice to have” or “must have” for you? 

Risks and Concerns

Caution is also a part of doing your due diligence to find the best possible doctor.

Unless there’s an extreme need for aggressive treatment, a good rule of thumb to minimize risk is to start with the least invasive, lowest risk treatments. These are often done by practitioners who offer complementary, alternative approaches (acupuncture, physical therapy, chiropractic, homeopathic, etc.)

There is no substitute for doing your homework and becoming knowledgeable about several important things:

  • The costs involved for services and treatments, and how they relate to your insurance coverage and out of pocket expenses. Healthcare Bluebook uses a nationwide database to estimate a “fair price” for everything from drugs to surgery to x-rays.
  • Patient reviews and experiences with a physician.  There are a number of websites where you can read what people are saying about a particular doctor, including RateMDs, Vitals and Healthgrades.
  • Red flags like sanctions, malpractice claims, or medical board actions against a physician can usually be found through your state medical board or licensing agency.  
  • The latest research studies related to your condition.  It will serve you well to be aware of the most effective treatments, the odds for success and potential risks. You can see published research studies at PubMed and the National Institutes of Health.

In terms of knowing the risks upfront about treatments, later is too late if the unthinkable should happen.  You don’t want to be left on your own to scramble for help. 

In the end, it never hurts to have more than one choice available or more than one opinion before you decide. 

Becoming informed will empower you to be your own best advocate when entrusting your medical care to someone. Just like any good hiring decision, choosing the best doctor can prove to be an investment well worth your active involvement.

Pat Akerberg suffers from trigeminal neuralgia. Pat is a member of the TNA Facial Pain Association and serves as a moderator for their online support forum. She is also a supporter of the Trigeminal Neuralgia Research Foundation.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Power of Pain: The Benefits of a Positive Attitude

By Barby Ingle, Columnist

Mental health can be disrupted when living with a chronic illness -- even more so when it involves chronic pain. Anxiety, depression, isolation, and feelings of hopelessness and helplessness can increase to dangerous levels -- particularly for people who have been suffering with a pain condition for a long period of time.

There are going to be good and bad days, and if this is a bad day for you, remember to focus on the good times, good feelings, and positive past and future experiences. It is very important for you and your family to recognize the symptoms of diminished emotional well-being and take action.

Depression and thoughts of suicide are common among chronic pain patients – so it is helpful to create a strategy to get through the rough times. Chronic pain patients learn over time that they can better cope and adjust to both physical and psychological problems with the help and support of spiritual guidance, family and therapists. Creating an arsenal of tools, such as spirituality, physical modalities and meditation, are all ways to better your situation. 

Chronic pain is not understood very well, and there are physicians and psychiatrists who believe that it is all in our heads or that people just complain for the sake of workmen’s compensation or personal injury cases. If we are seen as malingering patients who just won’t go away, doctors who don’t understand chronic pain may find it difficult to look for any other diagnosis other than psychological.

With the loss of independence and function, it is hard for many patients to accept their changing life. Be sure to surround yourself with a team who is on your side, or you will be in a fight with long-term health consequences that you will have trouble winning.

It is important to maintain a healthy lifestyle, including getting enough sleep, exercise, and eating healthy foods.

Patients with chronic pain typically lead a more sedentary lifestyle, making them at greater risk for developing other medical problems, such as cardiovascular disease, diabetes and osteoporosis. The risk for these conditions is heightened with inactivity. 

Creating a positive attitude starts with being inspired. Begin by finding an interest or hobby you can become involved with and will enjoy. A few suggestions are joining a non-profit cause, solving puzzles, writing a journal, joining or starting a support group, or even starting a blog.

Creating a purpose can assist with your self-esteem and confidence. Just because you are disabled does not mean you are not worth anything. I have learned that every person has value. Believing in yourself and your abilities, choosing happiness and thinking creatively is good motivation when it comes to accomplishing your goals.

Learn to expect success when you are going through your daily activities. It might take you longer or you may need to use more constructive thinking to achieve success, but it is possible.

Negative situations are bound to appear, but when you are looking for solutions and displaying self-esteem and confidence, you will also attract other people to participate in helping you accomplish your needs and goals. Try looking at failure and problems as blessings in disguise. Doing so will help solutions find you. Seize the opportunities in everyday life. Using your outings to inform others about your condition and finding pleasure in minor accomplishments are ways to increase your power of positive thinking.

There are great benefits to having a positive attitude. Staying optimistic will give you more energy, happiness and lower your pain levels. Achieving goals is a great motivator for positive thinking. Success is achieved faster and more easily through positive thinking, and it will inspire and motivate you and others. I have found that when I am letting the pain get the better of me, it comes across to others as disrespect and brings those around me down. 

Staying calm and positive creates an atmosphere for greater inner strength and power. You can also create better communication with a calm positive attitude, which will assist you in working with your doctors and caretakers. When you take life one task at a time and approach each challenge with optimism, it leads to fewer difficulties encountered along the way and increases your ability to overcome problems.  As my father always says when I am having a bad day, “Tomorrow will be a better day.”

No matter the challenges of today, they will pass, and in retrospect they will not seem as bad as time moves on. The challenges may just turn out to be a bump that looked like a mountain at the time. Try displaying a positive attitude, and the moods of others and the challenges of life will become easier to deal with.

Choosing to be happy starts with you. No person or thing can make you happy and positive. It is a skill you have to practice and develop when living with chronic pain. When you are able to live in a happy, positive and optimistic light, your life will become a life worth the ups and downs that come with it.

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the Power of Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

How Chronic Pain Ruins You Financially

By Crystal Lindell, Columnist

I was already living paycheck to paycheck before I got sick. I mean, rent in the Chicago suburbs doesn’t pay itself and journalism isn’t the lucrative job I think it used to be back when Clark Kent got into the business.

But then, I woke up one day with horrible pain in my ribs and my bank account somehow got even worse. Is there a number below zero? Because that’s about where I like to keep my balance.

I’m not telling you this in an attempt to solicit any type of personal donations. I just want the world to know what those dealing with chronic pain are actually dealing with financially. I want to give a voice to all of those people out there who are too sick to take a shower and, as a result, are too broke to upgrade their tacos to supreme.

I can still remember the first time I went to pick up a name-brand prescription at the local Walgreens, and being completely horrified by the fact that they wanted a freaking $50 co-pay. That’s a tank of gas. Or a cell phone bill. Or like three dresses at Kohl’s during a good sale.

Now, I’d kill to get all my drugs for $50.

I’m an American. I have insurance. I have a job. You wouldn’t think getting some random pain in my ribs would completely ruin me financially.

It has.

There are the co-pays for the doctor visits and the drugs; the money I owe before my deductible each year for the MRIs and the ER visits; and the vain attempt to find cures from snake oil salesmen offering alternative medicine that’s never covered by medical insurance.

I have so many medical bills that I can’t even keep track of how much I owe which doctor anymore.  Let’s just say, it’s “a lot.”

But it’s not just the medical bills that have to me too broke to buy fresh fruit on the regular.

It’s kind of hard to keep a job, when you literally don’t know from day to day if you’re going to be able to get out bed.

I’ve been very lucky in that my full-time job has been extremely accommodating, allowing me to mostly work from home and even take breaks during the day as needed. I know that if I had any other job, I would have had to file for disability a while ago.

That doesn’t mean I haven’t lost anything though. Back when I was healthy, I was able to maintain a side job as a part-time youth leader. I had to walk away from that when it became obvious that I couldn’t be sure I’d be able to get out of bed and make it to church most Sunday mornings. And when I resigned, I also gave up $10,000 a year.

Now, I’m barely making enough to make ends meet.

I spent the entire second week of June with $0.00 in my bank account.

And I can’t exactly go looking for a new job to make up for that $10,000 pay cut. I mean, where else am I going to work that allows me to make my own hours and write feature stories in my pajamas on the couch?

So, I’m stuck. I’m stuck in job I can barely hold onto that only pays me barely enough to eat on a daily basis.

When you’re well, it seems like you’re constantly hearing about fundraisers for sick people. Someone, somewhere always seems to be walking for cancer, or hosting a fancy ball for MS, or doing an ice bucket challenge for ALS.

But there are no fundraisers for people like me. Nobody does a 5K for chronic pain — maybe because most people with chronic pain are too sick to walk 3.1 miles.

I think there’s also still a lot of stigma associated with chronic pain. A sort of, “Well if you would just give up gluten and go to a chiropractor, you’d get better, so it’s kind of your fault.”

I get it, I mean watching someone lay on the couch all day with an illness nobody can see doesn’t exactly scream, “I’m super sick.” It’s easy for people to assume you’re just too lazy to get better. After all, if it’s just a matter of will power, then they don’t have to worry about the same fate becoming them.

And, I’ve noticed that people never like to use the word “sick” to describe chronic pain. They much prefer, “I’m in pain,” to “I’m sick.” It’s a way of separating those suffering with daily pain from the “truly sick.”

The thing is, having chronic pain does make you sick. It’s an all-encompassing chronic illness just like any other all-encompassing chronic illness. And it steals little pieces of your life in exactly the same way.

Sometimes, when I’m in really bad pain, when I’m literally so sick that I can’t even get to the bathroom, I think about a world where I would be forced to apply for disability. But then, I’d be even more broke than I am now.

I’m not sure what you’ve heard, but Social Security isn’t exactly paying people with bags of gold. Everyone I know who’s living on disability payments is barely living. It’s not exactly the kind of life I thought I’d end up with back when I got my freaking master’s in journalism.

But I guess that’s the thing about chronic pain. It completely destroys everything about your life that you thought you’d end up with. It wipes out all your hopes and dreams, and makes you start all over with nothing. And then, it sends you a hurricane just to make sure you got the message.

Being broke all the time only makes it that much worse.

Crystal Lindell is a journalist who lives in Illinois. She loves Taco Bell, watching "Burn Notice" episodes on Netflix and Snicker's Bites. She has had intercostal neuralgia since February 2013.

Crystal writes about it on her blog, “The Only Certainty is Bad Grammar.”

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

A Pained Life: When Habits Hurt

By Carol Levy, Columnist

I am a creature of habits, some of them bad. Not the “I can't stop eating chocolate”  kind of bad,  but bad in that I don’t always follow my own advice.

For example, I have a bad neck and as a result lifting something heavy often leaves me with worse neck pain. Every time I lift something heavy, I hesitate and think, “You need to put on the neck brace first. You really need to do that.”

Then I get annoyed and tell myself putting on the neck brace would be too much trouble.

The fact that I leave the brace out on the dresser and it is easily accessible makes no difference. My neck is held together with clamps and screws. How can a neck held together with a bunch of metal not be able to pick up anything, no matter what it is?

The fallacy of that thought is proven each time I move something heavy. But I don't heed myself and I pick it up anyway. Bad habit #1.

Then comes bad habit #2. The neck brace is supposed to help hold up my neck. But even when I wear it, I fight it. A good example is what happens when I take out the trash

The containers are a little ways away from my apartment. I do not want to have to make a number of trips (there is always a minimum of 2 large bags and more often 3). At least one is filled with cat box litter and is always heavy. The extra weight turns me into a turtle. I automatically scrunch up my shoulders and lower my neck as I lift the bags, feeling that somehow makes me stronger.

It doesn't, of course. And once I am finished my neck hurts horribly and the pain exhausts me.

So why don't I learn my lesson? Why do I fight doing a really simple thing that will help me?

One reason is denial and the other is looking at the short term rather than the long. I have to make the decision to accept what I can and cannot do -- sometimes just out of sheer stubbornness -- if I want help myself and reduce the pain when and where I can.

It is a lesson so hard to learn because it comes out of an acceptance of our limitations. At the end of the day, it is not the physical things that I do or refuse to do that cause the pain. It is my refusal to accept. Then I’m not a turtle but an ostrich, keeping my head in the sand.

I wish they had a neck brace for that.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.” 

Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Power of Pain: Take Charge of Your Pain Care

By Barby Ingle, Columnist 

When it comes to living the best life you can, everyone has choices. There are even more choices for those who face a chronic illness. The patient can either let the disease run them or they can sort through the system and take control of their disease.

Coping with a chronic condition takes hope and self-awareness. You can make it through the toughest of situations. I know because if I can do it, anyone can.

Your first goal should be getting a correct diagnosis. If you need to go to multiple providers, take the time to do it to help prevent your health from deteriorating. Each provider has their specialty as well as treatment options with which they are comfortable. But that does not always mean they have the right plan for you or that another option won’t work. If you are not comfortable with the ones offered by your current provider, find a doctor who you trust to try different treatment options.

Getting organized is very important. It will take work in the beginning, but it gets easier as you go. You will save yourself from more pain by being organized in your approach to treating your chronic medical issue.

It can be very aggravating to deal with a kidney stone or torn ligament, but at least there is an end in sight. You can get back to a “normal life” once the stone passes or the bone break heals. Other conditions such as heart failure, diabetes, Lyme disease, multiple sclerosis, Reflex Sympathetic Dystrophy (RSD), arthritis, osteoporosis, and neuropathy can be more of a challenge and usually last a lifetime.

Take charge of your disease instead of letting it rule you. Some doctors, friends, and even family may say, “Just live with it” or “Get used to it.” But you are the one who lives with this chronic condition. You can learn to manage life around the symptoms and problems, without losing yourself.

For the person in pain there is usually a loss in quality of life. This can be due to financial burdens, loss of social support and  depression. Being depressed can result in isolation, loss of self-esteem, and self-worth.

It is important to recognize that we need support as patients. We need positive attitudes and must recognize there will be life changes. Some will be easier, such as changing your diet or beginning a physical therapy routine. Others will be more difficult, such as having to sever ties to a family member or friend who is hindering your recovery. We also need support from our healthcare providers.

Most of all, we need to recognize that we are responsible for ourselves and that successful treatment may result in necessary lifestyle changes that only we can provide to ourselves.

We all deserve to have our pain taken seriously. To have the pain managed instead of under-treated, untreated, or over-treated is an important aspect of successful outcomes. Pain must be managed effectively and in a timely manner. The underlying condition needs to be addressed while the pain is being managed.

Remember, every patient is different and doctors only know what they have been exposed to in their schooling and continuing education classes. For example, if they are a regular attendee at a pain education conference they may skip the class on multiple sclerosis or Lyme disease because they have a greater interest in migraines. As a patient it is up to you to become the chief of staff of your medical team.  Develop a strong team willing to help, learn, and treat you.

Chronic pain is a disease in itself. Our medical system needs to recognize this and change its practices to prevention, instead of just treating the person after they’ve become ill. For example, we should teach children about good posture and body alignment, and have them practice it. This can help them keep the habit throughout adulthood, cutting down on back issues and conditions that lead to the need for chronic care.

We must be mindful to get the proper healthcare professionals on our team. The goal is to receive effective relief, and be able to organize and manage all aspects of life. Finding good healthcare and support systems will lower the number of hospital visits, the amount of time spent in the hospital, unnecessary trips to the emergency room, repeated tests, and inadequate treatments. All of which contribute to the high costs of healthcare. 

Barby Ingle suffers from RSD and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the Power of Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at www.barbyingle.com and at www.powerofpain.org.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

There is No 'Epidemic' of Painkiller Overdoses

By Ken McKim

There is no "epidemic" of opioid overdoses. If 16,000 deaths in a year is an epidemic, then we really need to focus on the pandemic that is the over 100 million people in the U.S. who suffer from chronic pain.

For example, car crash fatalities in 2013 claimed more lives than opioid overdoses (there were 30,057 fatal motor vehicle crashes in the United States in 2013 in which 32,719 deaths occurred according to IIHS). As this qualifies as an epidemic by some people's twisted logic, I suggest we handle reducing car crash fatalities in the same manner that we regulate the prescribing of painkillers.

Effective immediately, you will have to own your car for two months before you can get a license to drive it. To obtain a driver's license, you must first establish a history with the DMV by visiting them at least two times per month for two months, paying $40 per visit during the two-month period you are waiting to get approved for your license.

Once you have your driver's license, you will only be able to purchase gasoline at particular gas station with a signed fuel-certificate from the DMV, which will allow you to purchase what the DMV thinks is an adequate supply of gas for a 30-day period.

For each new 30-day supply of gasoline you must obtain a new fuel certificate from the DMV, which will require another $40/five-hour appointment at the DMV.

If you try to take your DMV fuel-certificate to a different gas station than you normally use, your fuel-certificate may be refused and your name entered into a national database as someone guilty of "fuel seeking behavior."

Additionally, you will not be able to refill your gas supply after 3PM on Fridays, weekends or holidays. Your gas allotment must last for the full 30-day time-frame specified by the DMV. If you run out of gas before that 30-day period is up, you will not be able to get another fuel-certificate until the 30-day calendar period has ended. So remember, you should not be driving anywhere except to and from work, with possibly a once a week trip to the grocery store.

NOTE: Asking for more than your allotted fuel allowance will also constitute "fuel seeking behavior" and the DMV may choose to no longer see you.

The DMV also reserves the right to randomly smog check your vehicle at any time. If your vehicle fails the smog inspection, your driver's license will immediately be revoked.

NOTE: You must pay the cost of the smog inspection yourself.

I'm sure this will result in an immediate drop in automobile deaths. You're welcome.

This column is republished with permission from Ken McKim’s website, “Don’t Punish Pain.”

Ken began advocating for pain patients when his wife was diagnosed with Crohn’s disease – and he came to realize that the chronically ill were often stigmatized by society. That realization led him to make a 32-minute video called "The Slow Death of Compassion for the Chronically Ill"

Ken has a series of other informative videos on You Tube.

 

Five Ways TIME Gets Pain Pills So Wrong

By Crystal Lindell, Columnist

Access to pain pills is not a cause I chose. I didn’t wake up one day and think, “Gee, more people need opioids.”

No, access to pain pills is a cause that chose me. Because I really did wake up one day two and half years ago, and say, “What is wrong with me? Why do I suddenly have insane pain in my ribs?”

It’s a pain that never went away. And for months, the doctors didn’t take me seriously. They gave me prescription-strength Advil, Lidoderm patches, and told me to wear looser bras.

None of that worked.

So, for weeks on end, the pain got worse and worse, while I tried multiple doctors, trying to find someone who could help.

I was in so much pain that I would often lay down on the ground mid-sentence because I didn’t have it in me to keep standing. The pain was just that overwhelming.

And at night, after trying to survive the day, I would lay in bed and plan ways to commit suicide. I wish I was exaggerating.

Finally, I found a pain specialist who put me on hydrocodone. At the time I had no idea that opioids were controversial. I was just happy to finally have found something that gave me relief.

The problem with hydrocodone though is that it comes with these crazy spikes. So you take a pill, it relieves the pain and then it completely wears off within a couple hours — and you to wait six hours for your next dose. It’s a horrible way to live.

I’m also on a time-released morphine that lasts about 8 hours. I take it three times a day — so I am always on an opioid, 24 hours a day. And then, on top of that, I also take hydrocodone as needed.

I pretty much always need it.

The pain still gets bad. But now, because of the pain pills, I have times when I am nearly pain free. Times when I can catch my breath and remember that life is worth living.

Opioids have literally saved my life.

Which is why I’m so upset about TIME magazine’s cover story about the “worst addiction crisis America has ever seen.” 

I realized when I read the article that I am spoiled by my Facebook news feed. I tend to follow chronic pain groups, so most of the information I see is about how chronic pain patients need access to these drugs. As a result, I’ve been lulled into thinking that the chronic pain community is actually making progress on this issue.

Apparently, we aren’t.

And it is articles like this that make it that much harder for pain patients like me to get the relief they need.

Let’s break down what it gets so wrong, with some quotes from the report:

1.    It implies time-released morphine is basically heroin.

“The longer patients stay on the drugs, which are chemically related to heroin and trigger a similar biological response, including euphoria, the higher the chances users will become addicted.”

Aside from the excessive number of commas, there are so many infuriating things about this sentence. 

While the drugs can give you a “high” feeling when you first start taking them, I can promise you — after being on morphine all day, every day for over a year — that the “high” is only a short-term side effect.

Also, comparing the drugs I take to heroin is like saying that both TIME and US Weekly are similar because they both require reading. Yes, that’s true. But that’s about all they have in common.

2. The article focuses on how much the drug companies are supposedly making on these meds.

“The total annual sales for opioids in the U.S. has grown over 20 years to more than $8 billion.”

While there have been some new meds on the market, like Zohydro, the pills that I take and the pills most of the people I know take, are generic. Morphine isn’t exactly a brand name.

Giving people relief from horrific, daily pain is not part of some drug company conspiracy. It’s called compassion.

3. It devalues how horrible pain can be.

“The standard-setting Joint Commission on Accreditation of Health Care Organizations in 1999 required doctors to measure pain as part of their basic assessment of a patient’s health, which had the effect of elevating pain the same level of importance as objective measurements like temperature and heart rate.”

The author writes that like it’s a bad thing. I’m here to tell you, it’s not. Pain is such a huge part of your health. And managing it is just as important as managing your blood pressure or your insulin level.

Having too much pain will ruin your life and your body just like any other health issue.

Living with chronic pain is like living every day of your life with the same amount of pain you would wake up with after an extensive surgery, or a horrific car accident, or a stabbing.

Anyone in those situations would be given adequate pain relief. And, just because people with chronic pain have that same pain every day, all day, doesn’t mean they don’t deserve the same relief.

4. It implies that anyone on long-term pain medications is an “addict.”

“With America awash in opioids for the foreseeable future, health care providers and public officials are searching for ways to help addicts get clean.”

I don’t need to “get clean.” I need a cure, but there isn’t one for what I have. The next best thing is daily pain relief. Going off all my meds would be catastrophic for me, not because I’m addicted, but because I would end up stuck on the couch for the rest of my life in too much pain to shower.

Also, we need to take a second to talk about the word “addicted.” It is very different from what’s actually happening for most people, which is “dependence.”

Dependence is what happens when you take lots of different types of drugs long-term. Your body becomes dependent, so going off them cold turkey would be hell. However, if you taper off it, you’re good. Just like anti-depressants. And nobody ever says people are “addicted to anti-depressants.”

Addiction is when you start to crave that high feeling you get the first few times you take the drug, so you start taking higher and higher doses seeking it out. Sort of like how all of us are dependent on food, while a select few are addicted.

5. The authors don’t mention any alternatives.

For those enduring chronic pain, the real-life alternative to not having adequate pain pills is suicide.

Articles like this just make it that much harder for people with chronic pain to get the medications they need. If you want to see the suicide rate jump, just take away the medications that so many people rely on to do even simple things, like make dinner or do a load of laundry.

Look, I’m not saying everyone with a cold should get a prescription for morphine. I’m just saying that there are millions of people out there who need these drugs. And more regulation just gets in the way of decisions that doctors and patients should make together to help those who are suffering cope with their pain. The government should never be in anyone’s doctor’s appointment.

At the end of the day, I guess I just wish that TIME had talked to even one chronic pain patient for the article. There are millions of us out here, responsibly using opioids long-term, and we would have loved to chat with TIME.

If only they had asked.

Crystal Lindell is a journalist who lives in Illinois. She loves Taco Bell, watching "Burn Notice" episodes on Netflix and Snicker's Bites. She has had intercostal neuralgia since February 2013.

Crystal writes about it on her blog, “The Only Certainty is Bad Grammar.”

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Invisible Illness: A Blessing or Burden?

(Editor’s note: Pain News Network is pleased to welcome Pat Akerberg as a columnist. Pat is an executive coach and business consultant who suffers from trigeminal neuralgia, a rare facial pain disorder. She shared her story recently in a column.)

By Pat Akerberg, Columnist

Even though we can’t see some things, they still exist nonetheless.  Take imperceptible things like belief, faith, hope, or even the air that we breathe.  Our indirect experience of those things comes from a hidden world.  I suppose we could view their invisibility as either a blessing or a burden.

Sometimes invisibility is a deliberate strategy intended to hide or protect.  I readily count make-up as a blessing designed to hide or conceal.  Military clothing is a tactic borrowed from nature that camouflages for protection. 

The question that I ask is posed in the context of living with invisible chronic illness and/or pain, certainly not felt indirectly or deliberately designed. 

So ask yourself: Is the invisible illness and pain that you live with a blessing or a burden?

I’d have to answer “yes” to both blessing and burden.  It’s not either one or the other for me; it’s  both -- a burden that also offers some blessings.

In the burden category, explaining my neurological disorder to raise awareness and educate others can require energy that I don’t always have.  This is especially true if you have a rare illness like mine that triggers unseen pain when you speak. 

A SCENE FROM THE 1933 MOVIE "THE INVISIBLE MAN"

A SCENE FROM THE 1933 MOVIE "THE INVISIBLE MAN"

It’s a real Catch-22, because emotionally I desire the understanding. However, there’s a high price physically in trying to get some level of it.

Then there are the not always successful attempts to find an effective way of answering the oft dreaded questions, like:

 How are you?

 Are you feeling better now (or yet)?

 You don’t seem to be getting better. Have you thought of trying (fill in the blank)? 

Six years later and my continual test drives of better ways to answer those questions -- that don’t shut down a conversation or open it up to redundant, ill-fitting advice -- still take lots of practice, just like a workout routine. 

High on my burden list would be all the small, insidious ways in which I extend myself to fit in or help others be more comfortable around someone who doesn’t look sick or in pain -- yet won’t get “back to normal” again. 

Sometimes I say yes to invites so as not to disappoint someone close.  I minimize the level or graphic description of pain that I’m in; contort my facial expression into a smile or semi-laugh to keep rapport; or attempt to eat something someone brought, even though it physically pains me to do those things.

Longing for Connections

You’re probably asking, “Why, Pat, do you do them if they can be a burden? “

It’s a fair question. 

The short answer is because they relate to the blessing part of my burden.  Living with invisible chronic pain is a great social isolator; one that prescriptions don’t treat. 

To the contrary, human connection for me serves as a much needed lubricant that primes my psychological and emotional gears to work better.  So I’m motivated to interact in spite of the price.  And, realistically, when I can, I do. And when I can’t, I don’t.   

In talking with my trigeminal neuralgia (TN) friends, we have remarked how it would be easier if our plight and handicaps were visible.  Maybe then, we fantasize, the understanding and compassion that we seek and need would be more forthcoming. 

We have also wondered if our experience of being misunderstood would be different if we had an illness or disease that had a medical label more widely recognized, publicized, or even scary. 

We witness that even the terrifying descriptions used for TN, like “the worst pain known to medical practice” or “the suicide disease” seem to diminish in stature in comparison to those. 

It’s maddening and confounding how something so torturous going on inside of us rarely registers to that extent in our external world. 

Yet, at the same time, these longings of ours do contain the special favor of not attracting the kind of unfavorable attention that we don’t want.  Those who don’t know us aren’t as likely to stare at us, give us those judgmental looks, or jump to conclusions about our health or wellness based solely on what they see. 

So in that sense, I have come to view the invisibility of TN as a mixed blessing that protects me from those hurtful, unwarranted glances.

Having the luxury of being able to control how much information that I want to share about my particular affliction is another blessing I receive from the invisibility of it.  That includes my personal struggles with the burden of it all. 

That’s a freedom of choice that many with visible illnesses, handicaps, and disabilities have to a much lesser degree. 

Thankfully, I am learning to accept the trade-offs involved with this odd paradoxical mix and view them as blessings in disguise.  They are unseen and sincerely felt.

I offer a few of my answers, but in no way profess to have yours.  Sometimes asking a question can serve as a catalyst to search beneath the surface of our particular medical labels. 

One of my favorite professors always challenged his students to “mine for the gold.”    Maybe this question will uncover some important nuggets for you. 

We are still offered the potential to learn from each other and grow in different ways, despite our incapacities and similar challenges.  That’s another blessing in my book. 

Pat Akerberg lives in Florida. Pat is a member of the TNA Facial Pain Association and serves as a moderator for their online support forum. She is also a supporter of the Trigeminal Neuralgia Research Foundation.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

How to Use Medical Marijuana Without Smoking

By Ellen Lenox Smith, Columnist

It can be overwhelming to try anything new, especially something like medical marijuana. Many people are afraid to try it – not only because of the stigma associated with cannabis – but the smell that comes from smoking it.  

There are many different ways besides smoking that I have learned to administer medical marijuana. But remember, I am not an expert, just a woman who was desperately trying to find a solution as to how to address her pain. I have been learning this slowly, through reading, help from others, and trial and error.  

Due to having sarcoidosis in my chest, smoking anything could be fatal. I had to find an alternative method that I could use to safely administer medical marijuana. Acting on the advice of a friend, I started my journey utilizing this medicine in an oil form. 

Oils             

ELLEN LENOX SMITH

ELLEN LENOX SMITH

I start by grinding up dried marijuana buds in a simple coffee grinder, always being careful to use only an indica strain of cannabis. Indica plants give you pain relief and allow you to rest. I take my oil at night to help me to sleep. If I ever took this same oil during the day, I would be sleepy and groggy.

Next, I heat up oil (I use extra virgin olive oil, but you can use other types you prefer) and when it gets hot, but not to a boil, I sprinkle the ground product over the oil. When you get it just right, there is a sound similar to putting an Alka Seltzer tablet in water, and you can hear the THC and CBD being released into the oil. 

You then allow the oil to cool, strain it, and store it away from the sun. It lasts for a long time.

At night, one hour before I want to go to sleep, I take my medication. I presently use one teaspoon of the oil mixed with some applesauce or something I enjoy eating. You do not want to take this on an empty stomach. 

You should start slowly with a small amount, and gradually introduce the medication to your body. If you need to increase the dose, you can add a quarter of a teaspoon until you have reached an appropriate level. When you can sleep through the night, and awake relatively clear headed and not groggy --then you know your dose is appropriate.  

Keep in mind that by utilizing this method the medication takes time to kick in because it is being ingested. Plan your evening carefully and be sure to be ready for bed once you have medicated. It usually takes 30-60 minutes. We all react differently, so be safe.

If you want to make this oil even easier, then purchase a machine called Magical Butter, and it will do all the work for you after you grind, measure and plug it in. It costs about $175.

Vaporizers

Most days, I do not need any medication after having had a good night’s sleep. But on the days I need something else for help, I find vaporizing simple and easy. 

I have found two portable vaporizers that I love. One is called the Vape-or-Smoke and the other is named PAX. They require a small amount of marijuana, are small enough to fit in a purse, and are simple to use. 

Many people use the Volcano, which is a larger, table top model seen in the picture to the right. There are so many types; you just have to decide what you are willing to spend. Some vaporizers cost several hundred dollars.

Now be careful, for you want to vaporize the correct type of cannabis. I could list all fifteen strains we grow, but I can tell you that there would be no guarantee they would be your magic.

The main thing to remember is if you are going to vaporize during the day, then you need to use a sativa strain of cannabis. This type of plant allows you to gain pain relief and also helps to stimulate you and keep you awake, not sleep like the indica plant does. If I vaporized an indica during the day, I would want to sleep. So be careful you have selected the correct type of plant.

Use a grinder to prepare the marijuana and follow the directions on the vaporizer. You will notice when you first use a vaporizer that it looks like you are blowing out smoke. However, what you are observing is actually a vapor. 

I have permission from my pulmonologist to vaporize because it is safe to use. Take a simple hit, see how you feel in a few minutes, and if you need more to help with the pain, just use it one puff at a time to find your needed dose. This method should provide you with short, yet quick relief, unlike the oil that takes awhile to kick in, but last so much longer.

Tinctures

Sometimes I also use a tincture during the day.  As with vaporizing, it is fast acting and also fast to leave the system. We have recipes for a few types. One is made with alcohol, such as lemon schnapps and it takes two months to cure. The other is made with glycerin and can be made in less than an hour in a crock pot or using the Magical Butter machine. 

When making a tincture, you again have to be careful you are using the correct strain. I make day tincture, so I only use a sativa plant. Alcohol based tinctures require the product to be put into a jar, the alcohol of choice poured over it, and then covered tightly. 

Twice a day, take a moment to shake the jar. After two months, the THC and CBD are released, and you should strain and store the liquid away from the sun.

The tincture can be taken one teaspoon at a time or with an eye-dropper, putting a few drops under the tongue or in the side of the cheek. You hold it there for about 20 seconds and then swallow. Feel free to repeat this every half hour. Remember, this is made with the plant that stimulates, so do not take at night!

The glycerin recipe is easy and can be made in an hour using a crock pot. You administer it the same way as above. The difference with this method is it has no alcohol and tastes sweet -- even though a diabetic can use it for it is not sugar based. 

It’s just a matter of preference of which type you prefer and how long you want to wait for the finished product to use.

Topical Ointments

We have had good success using topical ointments. The recipes are simple and the results are amazing. I know people with Complex Regional Pain Syndrome who have turned their lives around with topicals. 

All it requires is the tincture (not the oil), some bees wax, and then we add essential oils to mask any marijuana odor. Peppermint extract seems to be the favorite additive -- it provides a tingling sensation as it absorbs into the skin along with the cannabis.

Recipes for topicals, tinctures, and oils can all be found on our website at the end of this article.

As stated in the beginning, I am not an expert on all the various way to administer medical marijuana. Many people love using edibles, such as brownies and cookies, but I live with so many food allergies that I have no interest in even trying them. 

It also concerns me, being so drug reactive, how much I should eat or not eat because I don’t feel the effects immediately. Like the oil, edibles are slow to activate and sometimes people eat more than they should -- and suddenly they’re shocked at how strange they feel. 

Go slowly and give it time to kick in before deciding you need to eat more!

We try to steer people away from smoking to keep the lungs as safe as possible. However, if that is the only way that works for you and the smell is not an issue for you, then smoking is one of the faster ways to get pain relief from marijuana.

Ellen Lenox Smith suffers from Ehlers Danlos syndrome and sarcoidosis. Ellen and her husband Stuart are co-directors for medical marijuana advocacy for the U.S. Pain Foundation and serve as board members for the Rhode Island Patient Advocacy Coalition. For more information about medical marijuana, visit their website. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Power of Pain: There is Great Reason for Hope

(Editor’s note: Pain News Network is pleased to welcome Barby Ingle as our newest columnist. Some of you may already know Barby from her work with the Power of Pain Foundation, but you may not know the story behind her activism on behalf of pain sufferers. You can read all about it here.)

By Barby Ingle, Columnist

The good news is I have taken control of my chronic pain diseases. It has been a long tough road -- 18 years of living in the healthcare system have taught me to stand up for myself and learn to be my own best advocate.

It all began when I developed endometriosis in 1997 and worsened when I developed Reflex Sympathetic Dystrophy (RSD) after a minor car accident in 2002. I thought endometriosis was bad until I got it RSD.

Prior to the accident, I was a business owner and head coach at Washington State University for the cheer and dance program. I was living a great life and was successful in managing the endometriosis through medication and surgery. After the accident I had shoulder pain. Even though there were no signs of an injury on x-rays or MRI images, doctors suggested I have shoulder surgery. This surgery did not fix the pain and only made things worse.

Doctors were stumped and sent me a TOS specialist. After more tests the doctor realized I needed surgery again because bone spurs from the first TOS surgery were going into my lung and nerve bundles in my right shoulder.

BARBY INGLE

BARBY INGLE

In 2005, I was finally diagnosed with RSD and learned that TOS was a symptom of RSD. By the time of that diagnosis, I had been treated by 42 other healthcare providers and been told many random strange things, from “It’s all in your head” to “Your boobs are too big. You should get a breast reduction.”

My RSD symptoms were called “bizarre” by one prominent neurovascular surgeon. Some of those symptoms included severe pain, sweating, skin discoloration, sensitivity to touch and light breezes, dizziness, vomiting, syncope, and gastrointestinal issues.

Every procedure was a new trauma that increased my pain and other symptoms.

Learning about RSD

The 43rd provider finally looked at my records in their entirety before coming into the exam room. He was the one to figure out I had RSD and give me some of my first answers. I remember being so excited because I finally had a name for what I was dealing with.                                                     

But once I started to research RSD on the internet, that excitement turned to fear. I took the time to find out who the best providers were and found ways to get to see them. I have now been treated by over 100 providers since 1997.

Having experienced painful injuries many times in my life, I thought all pain was the same. Now, I know there is a difference. I learned that you can have more than one type of pain at the same time (burning, stabbing, cutting, electric, etc.). I feel bad for the people I knew with chronic pain before my experience began. I thought they were constant complainers. I was wrong.

I was humbled as I needed help with ordinary activities of daily living, like dressing, bathing, traveling, cooking, shopping, and walking. What I was going through was traumatic and depressing. The burning pain was never ending.

Living with pain is a big life challenge. It has been hard. Through this challenge I have learned we all have a right to proper care and treatment to ease our pain. Don't stop until you get the help you need.

Remission

As of 2009, I have been in and out of remission. What I found that worked best for me is the use of an oral orthotic (a mouth device that lowers brain stem inflammation), IV infusion therapy, aqua therapy, heat, traction, better posture, improved eating habits, and stretching exercises. There was not a one size fits all cure for me or any of the thousands of patients I have met in my pain journey.

I have come in and out of remission since then. In the beginning I would be so afraid that this time the doctor would not be able to help me. Now I know that if one doctor can’t help there are others that can. Not all providers offer the same knowledge or access to treatments that may be right for me. I have to research for myself to find out what I am comfortable going through.

We all have to learn to be the chief of staff of our medical team. Be empowered patients and live life to the fullest each moment. Don’t feel guilt if you can’t do something right now -- make it a goal to accomplish once you are able.

When you think it can’t get any worse, it can. And when you think is can never get better, it can. Take life moment by moment and know that we all have ups and downs. Never give up and never give in!

My drive to turn pain into power comes from my motivation to find a cure for RSD. No one should have to go through my experience. 

Barby Ingle is a chronic pain educator, patient advocate, and president of the Power of Pain Foundation.

Barby is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found by clicking here and at the Power of Pain Foundation.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

The Importance of Awareness

By Jennifer Martin, Columnist

The other day I was made aware of a malicious Facebook post that was written about an acquaintance who was making others aware that it was World IBD Day.  She was simply educating others about inflammatory bowel disease and the difficulties that arise from having such a condition. 

The Facebook poster declared how tired he was of people posting about their diseases and trying to gain pity from others. 

The day before, another poster with a J-pouch due to ulcerative colitis mentioned that while she was leaving the bathroom a woman told her that she should use a private bathroom because what she was doing was disgusting. 

Not long before this, a chronic pain patient of mine told me she received a dirty look from someone in a grocery store parking lot because she parked in a handicap parking space, even though her handicap placard was hanging clearly from her rear-view mirror.

The same day, another patient told me that he doesn’t feel like his doctor hears him when he tells him how much pain he is in.

Unfortunately, this kind of misunderstanding and ignorance happens all of the time. People with invisible chronic pain or chronic illnesses are often the recipients of hurtful words or spiteful looks from people with have no clue what they are going through on the inside.

This is why awareness is so important. About half of all American adults -- 117 million people --have one or more chronic health conditions, yet many of us are still largely misunderstood.  We may be feeling awful, but typically we look fine from the outside. 

Many people think chronic pain patients are addicts who just want drugs.  Some who don’t understand Complex Regional Pain Syndrome (CRPS/RSD) think it’s a psychological problem.  And others believe that fibromyalgia isn’t real and that patients only want sympathy.

It is important for people to have a better understanding of what we’re going through so that the stigmas, hurtful words, and malevolent looks begin to fade.  That cannot happen if we remain silent.

May is a big awareness month for chronic pain and chronic illness:

Fibromyalgia and Chronic Pain Awareness Day was May 12.

World IBD day was May 19.

World MS day is May 27.

May is also Arthritis Awareness month.

So keep wearing those awareness t-shirts -- and keep blogging, educating, and posting.  Will it help?  I am hopeful.

Jennifer Martin, PsyD, is a licensed psychologist in Newport Beach, California who suffers from rheumatoid arthritis and ulcerative colitis. In her blog “Your Color Looks Good” Jennifer writes about the psychological aspects of dealing with chronic pain and illness. 

Jennifer is a professional member of the Crohn’s and Colitis Foundation of America and has a Facebook page dedicated to providing support and information to people with Crohn’s, Colitis and Digestive Diseases, as well as other types of chronic pain.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.