It’s a Major Award!

The postage for this will be ridiculous!


Last night, Mike’s company, LMI, held their annual trivia competition, LMIQ.  The teams who take 1st, 2nd, and 3rd place are awarded a donation from LMI to the charity of their choice. 
This year, I asked Mike and his team, 404- Team Name Not Found, to play for the National Fibromyalgia and Chronic Pain Association.  Led by president, Jan Chambers, (who is a lovely woman I’ve been very fortunate to meet) this organization provides information, resources, and community to people who live with fibromyalgia and other chronic pain health problems.  Beyond that, President Chambers confronts pain on a public policy level, in both state and national legislatures. She lobbies for money and attention to be paid toward fibromyalgia and chronic pain research. When the CDC allowed 100 days for public comment on the new opioid medication guidelines, the NFMCPA made sure our voices were heard. They are also working hard to make sure that we aren’t lost in the shuffle and negatively affected as Congress attempts to fix the heroin epidemic.  NFMCPA is petitioning the White House to have the Department of Health & Human Services implement a National Pain Strategy. And now that I’m checking on it, we only have 9 days left to get 80,000 signatures for the White House to respond to the petition. GET ON IT, PEOPLE!  Ahem. I mean, please sign it, won’t you?  

So, I’m quite pleased to announce that Mike’s team was able to secure 3rd place and win $1,000 for the NFMCPA!  Many thanks to LMI for their generosity!  

Thanks to Mike for storing random Latin language and history in his brain so that he was able to pull “Punic Wars” out of thin air!  Thanks to Holly for owning a clowder of cats!

My Friend is Fighting for Her Life


My friend, Megan, is fighting against MS for her life.  She has an opportunity to receive HSCT, but because the treatment is still in the trial stage in the US, she has to pay for the entire treatment out of pocket. A whopping $70,000 for treatment and aftercare for herself and her family is what she needs to raise by November. Will you please help her fight and live?

Meg’s HSCT Journey

HelpHopeLive organization helping Megan raise money

Pain Mismanagement

Anyone who has listened to the news lately has heard there is a heroin epidemic, which has lead to many deaths. Heroin is a drug in the opioid family. As a result, there has been a massive crackdown on opioid prescription medication, especially for those of us who live with chronic pain. It was difficult to have chronic pain managed correctly before the crackdown, generally because many doctors don’t have proper training in managing chronic pain, including pain management doctors. Diseases like fibromyalgia were viewed with skepticism by the medical community, leading to under or non-medication of the pain.  Anyone who advocated for themselves and asked for proper pain management was treated like a drug seeker. And now, because lawmakers are panicking over heroin overdoses, proper pain management will become even more difficult to achieve, especially if states follow through with laws curtailing legal prescription opioid use.

A few statistics
The CDC states that there were over 8,200 heroin-related deaths in 2013.  Compare that with an estimated 100 million Americans who live with chronic pain, 10 millions of those with fibromyalgia alone.  For the sake of argument, let’s assume that every one of those heroin-related deaths came about because of an opioid pill addiction that let to heroin use.  That would mean that lawmakers would severely limit access to prescription opioids for chronic pain patients because 0.0082% formed an addiction and died.  Let’s compare that with an estimated 33,636 firearm-related deaths in 2014, 88,000 alcohol-related deaths each year from 2006-2010, (1 in 10 deaths each year) and more than 480,000 tobacco-related deaths each year.  Measuring for a period from 2005 – 2009, 163,700 cancer deaths were attributable to cigarette smoking.  These Merchants of Death continually get a free pass, even though they are responsible, directly or indirectly, for well over a half a million deaths each year.  Meanwhile, the chronic pain community is made to worry whether or not they will be able to walk this month because a doctor and/or a lawmaker decided that 2-3 Tramadol for the month was more than enough.

David versus Goliath

Advocacy
It doesn’t require too much critical thinking to understand why the Merchants of Death are able to peddle their wares without much governmental interference, while advocacy groups like the National Fibromyalgia and Chronic Pain Association barely get any notice.  It all comes down to money and power.  A negative rating for a congressman from the NFMCPA means nothing.  Anything less than an A rating from the NRA, however, is political suicide for a Republican.  While President Jan Chambers of the NFMCPA lobbies tirelessly for the rights and needs of the chronic pain community, advocacy lies primarily with us, the patients.

Government
We are a nation of laws and beauracracy.  So what on earth are we supposed to do when lawmakers and governmental agencies institute policies designed to curb drug abuse, but lead to nothing but harm for those in the chronic pain community?  The DEA, CDC, and FDA are all trying to attack the problem of drug abuse by limiting the quantity of pills prescribed and increasing the frequency of office visits in order to obtain a new paper prescription.  No longer are doctors allowed to call in refills for drugs like Tramadol and hydrocodone.  For people like me, this is a minor annoyance.  But for people who live far from their doctor, rely on others for transportation or have no transportation, or cannot afford to pay the copay or co-insurance for an appointment just to get a prescription, this is a hardship.  The NFMCPA conducted a survey, (one in which I took part) to assess the impact of the new opioid prescribing regulations.  It only took 100 days before unintended consequences took hold for law-abiding chronic pain patients.

“People also cited higher expenses from more frequent doctor’s visits, changes to other prescription medications, higher medication co-pays, greater transportation expenses for extra doctor visit and lost work revenue related to unrelenting pain.”

And these aren’t even the worst problems caused by the new regulations.

“Shockingly, 27% (n=931) reported suicidal thoughts due to being denied their hydrocodone prescriptions.”

You see, if regulators had taken a half a second to pull themselves out of opioid hysteria, (it kind of reminds me of when there was panic in the 90s over marijuana) and think, they would have realized that less access to medications that allow chronic pain patients to function would lead to an increase in suicide and illegal drug-seeking.  And it’s not because we’re addicted.  It’s because, when you hurt because you simply exist, you’re going to become depressed.  It’s likely the reason depression is often comorbid with chronic pain.  When you can’t stay in bed because it hurts, but you can’t get out of bed to go to the bathroom because touching your feet to the floor hurts more; when you can’t play with your children and are constantly having to tell them no because it hurts too much to walk down the street to the playground and sit on horrible park benches; when you’re unable to stand and cook dinner for yourself and your family; when your house is so dirty and cluttered because it hurts too much to vacuum or pick things up off the floor; when you can’t spend time with friends the way you used to because it causes too much pain and fatigue to leave the house; when having stress in your life means that your body will respond with increased pain….that’s pretty goddamn depressing!  And now, on top of that, you’re going to deprive us of the medication that allows us the ability to do the few things we can do?  I will admit, even now, my thoughts have turned to suicide.  The idea of spending the next 40-50 years in debilitating pain, which is likely to get worse as I age, is pretty overwhelming. I don’t want to think about how I’ll feel if I can’t have my pain managed properly.

State and federal lawmakers have also joined the heroin abuse hysteria.  Some, like Vermont Governor Peter Shumlin, have ignorant beliefs like, “You can’t convince me that we’ve got 250 million Americans in chronic pain.”   Once again, we see another instance of lawmakers taking medical decisions out of the hands of the doctors and patients, creating laws and policies from a myopic point of view.  I believe Dr. Steven Stack, President of the American Medical Association, explained it best when he said, “The complexity of the problem makes it difficult to create a successful one-size-fits-all approach.”

Fortunately, President Obama, Senator Mitch McConnell, and some state lawmakers and governors  are on our side when it comes to not limiting doctors and patients in their opioid prescriptions.  Not only did President Obama acknowledge the reality of our pain, he understood that simply taking away an avenue to pain relief is unrealistic.

“If we go to doctors right now and say ‘Don’t overprescribe’ without providing some mechanisms for people in these communities to deal with the pain that they have or the issues that they have, then we’re not going to solve the problem, because the pain is real…”

Alternatives
The American healthcare system has set us up to fail.  Insurance companies and pharmaceutical companies as bedfellows have created a corrupt system where medication is the only available option for treating chronic pain.  Functional medicine doctors, who employ an integrative approach of traditional and complementary medicine, often don’t accept insurance.  Physical therapy is often touted as a treatment option.  If it helps, insurance may not cover sessions or ration the number of sessions you’re allowed.  Aqua therapy is a wonderful method for building strength and getting the exercise that doctors are always badgering you to get.  I was lucky that my sessions were a part of physical therapy and were covered by insurance.  If you’re not that fortunate, good luck finding a class that’s at a reasonable time, location, and price…or at all.  Chiropractic care, if covered, isn’t always in network. Unless you have a Cadillac insurance plan, acupuncture, (which is very beneficial to chronic pain sufferers) isn’t covered. When I went to sessions, we were spending $320 per month.   The list goes on.  For many of us, our hands are tied.  Unless you’re well-to-do, your treatment options are severely limited to what insurance will pay for.  And what insurance will cover is medication.
Millions in our country are suffering silently because of chronic pain.  If state and local government has its way, they will suffer even more.  To interfere with the doctor-patient relationship, which determines the best treatment options for the patient, will create unintended consequences, many like the ones they’re trying to curtail now.  Desperate patients may turn to the black market, illegal drugs like heroin, or make the most desperate and hopeless decision of taking their lives so that the pain will stop.  Rather than pour as much focus, energy, and money into this so-called crisis, why not allocate it to research to understand and cure diseases like fibromyalgia.  I would give up my opioids and other medicinal cocktails in a heartbeat if it meant there was a cure for my pain.  Given the conversations I’ve had with dozens of other chronic pain patients, they’d be willing to do the same.  In fact, no one I have ever spoken with, (including myself) has ever been pleased to add more pills to their daily regimen.  Rather than treating us as criminals or potential criminals, lawmakers need to listen and believe us when we say our pain is real.  And until we find a cure for the pain that ravages our bodies, we need to be allowed access to what works.

Chronic pain support groups

 

Community

 
When I began my journey in the world of fibromyalgia, I had nobody.  True, I had my husband, family, and supportive friends, but I felt like I didn’t have many who knew exactly what I was going through.  I felt so alone in my pervasive pain and persistent exhaustion.  I began to search Twitter for people like me:

  • People who had spent several years trying to figure out what was wrong with their bodies
  • People who had been dismissed as crazy, a hypochondriac, attention-seeking, and dramatic by doctors, family, friends, and co-workers
  • People who had no idea what to do now that they did have a diagnosis because the medical community had little to no idea as well
  • People who knew what it was like to be consumed by grief, fear, and hopelessness because their disease was forever
  • People who decided that this was bullshit, and giving up was not an option 

And I found them.  I found people like Julie Ryan, who collects and shares medical information/research so that people in our community have avenues from which to tackle their illnesses.  I found people like Chris Dean, who made me snort with laughter in spite chronic pain.  I found people like Trisha Pearson, and identified with her everyday struggles.  I found Miss Treated, which gives women opportunities to share the misogyny they experience with doctors, and Dr. Ginevra Liptan, whose goal is to bridge the divide between fibromyalgia and the medical world.  

All of these finds were and are fantastic, (and there are so many more out there) but I needed something more.  I needed a community of people with whom I engaged on a more personal level.  I needed to be able to whine about not being able to stand long enough to do the dishes.  I needed to be able to ask about different medicines and procedures, how people reacted with them, and if my experiences with them were common.  I needed to feel like my brothers and sisters with pained arms cared about me and my whole life, not just the disease.  That’s when I found Elizabeth Christy, whose Parents with Pain Facebook group changed my life.  

In PWP, people follow up with one another, asking how their appointments went or if they’re feeling better after a flare.  We lift one another up, but keep it real at the same time.  No one is shamed into being more positive; quite the opposite, in fact.  Whenever someone apologizes for “whining” or venting, we quickly remind them that PWP is a safe space, intended precisely for catharsis.  No one is informed that their pain is for a reason and that god won’t give you more than you can handle.  No one is badgered into a specific medical or nutritional regimen. Plenty of people in PWP are gluten-free or paleo or juicing, and will share their experiences with those ways of life.  Rarely does sharing these medical and life choices/treatments result in a war of words.  (Seriously, I can count the number of times on one hand when there have been tense exchanges.  No one has ever cursed anyone out or flamed out calling someone Hitler.)  We’ve also seemed to avoid the fatal flaw of many support groups; there isn’t an echo chamber of learned helplessness and fatalism.  We rejoice with each other when something wonderful happens, like finding a doctor who takes you seriously. We empathize when members are feeling defeated and depressed.  We offer to cut a bitch when someone has been a dick toward one of our members.  Seriously, someone offered to phonebomb a receptionist who made fun of me today because I couldn’t find a word during a fibro fog moment. 

I feel extremely lucky to have such an extensive support network.  As the writer of the Christian creation poem wrote: It is not good for man to live alone. We with chronic pain and fatigue tend to be isolated from the world because of our condition.  And once we are in the world, we find that very few, as sympathetic as they may be, have no idea what we’re going through. I encourage you to join us or find a group for support. The load is lighter with many hands to carry it. 

There. I exercised. Happy?

  

I used to exercise on a regular basis.  And then the fibro hit.  My regular workouts caused flares and any floor work hurt like a motherfucker.  So I stopped.  I’ve always been the kind of girl who has to work her ass off just to maintain weight, let alone lose it.  So no exercise, plus Lyrica, equals fat Julie!  Of course, none of this matters.  As far as any doctor is concerned, all my pain would magically disappear were I to lose a bunch of weight.  Didn’t you know?  Skinny bitches don’t have no pain.  No, wait….my sources are telling me that skinny bitches suffer from life-altering chronic pain, too.                 ¯\_(ツ)_/¯  Who knew?  Tired of doctors throwing shade at me and my pants squeezing my tummy just a little too tightly, (plus there’s all the women who have MS and run marathons- they are truly inspirations who make the rest of us look bad) I have finally reached the level aggravation that compels me to do something about my weight.  I’m going to lose this weight and still have fibromyalgia pain!  …….that’ll show ’em.

This morning, I got myself ready to Walk Away the Pounds with Leslie Sansone.  It’s always been my go to, as it gets my heart rate up and works my whole body without being too hard on it.  I put on shorts and pulled my hair back, (because I sweat more than a fat, pervy, mouth-breathing man, synced my Up fitness tracker, and went to fetch the DVD.  Naturally, it wasn’t there.  But I was not deterred; I was working out today, goddammit!  I had a massive headache and no DVD, but this was happening!  I spent a good 20-30 minutes searching the different video services, trying to find something that didn’t scare the fuck out of me.  No, no 30 day Shred for me, Jillian.  I already experience that just carrying the laundry down the stairs.  Fortunately, I found Walk Away the Pounds on Amazon Instant Video.  I paid $10 for something I own two iterations of already and got down to business.  

My cat, Belle, sat there and watched me the whole time.  Because that’s what everyone needs: a fluffy animal, sitting there, silently judging you.  

Bewildered cat is bewildered.

 
Yes, thank you, cat.  You’re so taken aback by my side steps and knee lifts that you fell over.  Asshole.  Despite my judgy cat, I marched on, modifying movements so as not to overdo it.  After about 5 minutes, my calves said, “Fuck you, bitch.  We out.”  It’s an fucking painful interesting sensation, continuing to exercise after you’ve felt your legs freeze in carbonite.  But I did it!  I finished the 15 minute, 1 mile walk.  My head is about to implode and I need to eat all the things, but at least I exercised and am not fat anymore.  Suck it, doctors!  

Wait.  I have to do this again to actually lose weight?  Fuck.

 

Belle, leaving me for dead and licking the salt off of me.

 

The Music of the Plight

   

Now sit back and I’ll tell you me tale of woe.  I feel like there should be a sad harmonica playing.  Imagine sad, slow harmonica music.  Ooh, and a banjo.  Wistful banjo. 

Back in June, I wrote about the letter I received from my insurance company, apprising me of the exciting new program designed to fuck with my medication because they didn’t feel like paying for it anymore.  You can imagine how relieved I was on Monday when customer service said that my doctor could send a prior authorization waiver, which would allow me to bypass the step therapy program.  Add happy fiddle, Con brio.  I called my doctor’s office, gave them the information, and rested in the knowledge that everything would be just fine.  

Suspenseful fiddle only, pianissimo
Fast forward to August.  I called the mail order prescription service to refill my Lyrica.  It was then that I found out from a sympathetic and apologetic customer service rep that my doctor had sent the prior authorization, but the prior authorization department had trashed the prior authorization because I didn’t need prior authorization for Lyrica in June.  Through tears and incredulity of the idiocy of epic proportions I was dealing with, I confirmed, and actually had the prior authorization supervisor say to me that:

A) Insurance sent me the notification of the step therapy program, set to begin July 1st, before July 1st so that I would have an opportunity to get things in order with my doctor.

B) I did everything I was supposed to do with regard to getting my medication ducks in a row and my doctor did send a prior authorization waiver.

C) The prior authorization department did receive the prior authorization request.  It was logged as having been received.  

Suspenseful fiddle, mezzo forte

D) The prior authorization department said to themselves, “She doesn’t need a prior authorization for Lyrica,” and trashed the request.  They were not aware of the forthcoming step therapy program because they are not informed of policy changes until the day the policy changes.

Angry fiddle, forte

E) Even though they have it noted that the request was received, and that it was their fault that it was gone, I still needed to have my doctor send another request.


Return to harmonica and banjo, piano

Fortunately my doctor’s office hooked me up with samples while I waited for this load of shit to be flushed.  The first request from my doctor was denied.  They asked what other medications I was on or had tried, (because, I assume, that wasn’t on the first request.)  The doctor’s office said they would send another request.  If this one was denied, then I could appeal with insurance.  Until then, I would wait to hear back from the doctor’s office.  

As of yesterday, I hadn’t heard anything, so I called insurance.  They hadn’t received another prior authorization request.  Sigh.  The receptionist at the doctor’s office said that the only thing they had in the system was sending the request back in June and that, if insurance had denied the request, they would have sent something in writing.  I must have explained that insurance trashed the June request, the doctor’s office had called me, told me the new request was denied, and that they would send another one no less than three times, all while she kept tryng to interject with reasons why I was wrong, before she finally got it and/or didn’t feel like arguing with me anymore.  I listed the pertinent medications that have failed to moderate my fibro symptoms, repeating another several times that, no, the mail order pharmacy only handles one of those prescriptions.  She retorted that since the mail order pharmacy doesn’t handle two of them, it was likely that they would deny the request again.   

 

Blues harmonica, adagio, mezzo forte

I felt defeated and resigned to my fate.  Life was hard enough as it was, but it was about to become a living hell, as far as I was concerned.  Mike maintained cautious optimism, as is in his nature, but I just couldn’t see this ending well.  It’s not like the process thus far had given us evidence to the contrary.  But then, (swelling choir of angels) miracle of miracles, I got the call.  REQUEST. APPROVED!

Cue gospel choir singing “Oh Happy Day!”

FINALLY!  After phone calls and despair and people being fucking clown shoes, I had succeeded!  I was finally going to get the medication I needed!  Now, apparently I needed to wait a day or two to call in the refill, but that wasn’t a huge deal.  After lunch today, I made the call.  Customer service informed me that they couldn’t refill the prescription. While there were two refills left, the prescription had expired on August 27th.  So they need a new prescription mailed which, fortunately, I have.  

Hopefully I won’t get fucked over anymore.  My ass is super sore.  


An Update in Pictures…and Words

Image via howtogeek.com

I have to be honest; I didn’t really feel like writing this morning.  Or lately.  Mike and the girls are at church on this cool, dreary day, and all I want to do is drink coffee, eat pumpkin donut holes, read Harry Potter, and get off my lawn!, etc. etc.  So I’m totally phoning this one in, but I felt like updating y’all on my life.  

We adopted two little, fluffy girls at the beginning on August.  We had been talking about getting cat(s) for awhile, but wanted to wait for a slightly less inconvenient time.  The timetable to move up the adoption to now from Mike holding off on it indefinitely came about as a result of my well-reasoned argument of, “Fluffy kitties will cure my fibro,” and big, sad eyes.  

  
We ended up adopting Bridgette, a 3 year old black shorthair, originally from the island of St. Thomas, and Sweetie Belle, a 5 month old gray tabby, from King Street Cats in Alexandria, VA. They’re an all volunteer, no kill shelter, and are fabulous.  Mike really wanted a black cat.  He grew up having two black cats, and also wanted to give a black cat a good home, as black cats are adopted the least. Why?  Because we’re a nation of superstitious numbskulls. She was very shy the first time we went, but hopped into Mike’s lap and adopted him the second time.  Sweetie Belle, née Thunder, adopted me.  She jumped into my lap, curled up, and went to sleep.  Now, we hadn’t intended to get a kitten, but I made a well-reasoned argument that Bridgette didn’t seem to like me, and it was pointless to get a cat if it didn’t like me, too.  On top of that… 

 
Adding them to our family has not been without its stresses. They didn’t totally get along for the first couple of weeks.  Time, our cat whisperer, Holly, and a Feliway pheromone diffuser have now made them cats who sniff and lick each other and pummel each other with sibling affection.   Otherwise, having cats has been easy. (Besides Belle feeling the need to eat and climb on everything.) Having cats and Zoë has been a challenge. Zoë is very much like Darla from Finding Nemo. She feels the need to chase both the cats, get in their faces, pick them up or pet them like she’s trying to juice an orange, and doesn’t understand why they run from her because she’s certain that they love her. So yelling at her constantly to leave the cats alone is a teensy bit stressful.

And now, for your entertainment, I present cat videos!

 

 
Peekaboo!


Lay down and take your bath like a man, dammit!

School Daze

Both girls are finally back to school. Rachael began second grade and lost her first tooth.   

How did this happen?

 
I felt completely unprepared and freaked out about school beginning again.  She seems to be enjoying her class, and she hasn’t, as far as I’m aware, cut her hair or hidden under her desk like the beginning of last year.  She also hasn’t had any homework yet, so I’m pretty sure I’m just being lulled into a false sense of security.  Zoë had a good first two days at preschool and has a few friends from her class last year in there.  Plus she hasn’t burned anything down yet, so that’s a plus.  

The Bitch is Back

By July, I was in a good place: my pain was at an all-time low and my energy was at an all-time high.  So, naturally, that’s not the case now at all.  I stopped going to acupuncture because it was almost $400 per month to go every week.  Shortly after I began treatment, my acupuncturist began accepting insurance from the company with which we are insured.  But, of course, our plan doesn’t cover acupuncture.  I need to start going back a couple times per month, though, because it seems like acupuncture was the key to reducing my pain and increasing my energy, which annoys the fuck out of me for some reason.  I say it seems to be the key because it was the only thing that changed over the summer.  My meds didn’t change.  I was still going to physical therapy 1-2 times per week.  Yet, my neck and back began aching all the time.  The pain in my feet and legs forced me to hobble to my destination upon standing.  My pain was waking me up at night. My morning stiffness, or as Mike jokes- pain boner, wasn’t eased by stretching. My energy has plummeted, forcing me to take accidental naps during the day.  

I am really thankful for physical therapy.  I highly recommend The Jackson Clinic, especially the clinics that offer aqua therapy.  The therapists were warm, supportive, and would genuinely get excited for my progress.  They never pushed me past my limits and really listened to me.  My strength and flexibility significantly increased between the spring and the end of August, when I was graduated.  I’m now able to shave my legs without feeling the need to amputate at the knees.  When I began PT, it was hard work for me to lie down and tighten my core while pushing down on an exercise ball with my arms for five reps.  Now I’m able to step up on a box and balance on one leg while pushing/pulling a resistance band for 15 reps on each leg.  I learned how much orthotic inserts for my shoes eased the pain of walking and exercise.  (Of course, every time I read or hear the word “orthotic”, I hear Hank Hill saying it in the episode when he learns he has no ass and needs an orthotic so he can sit without pain.) Even squats, which have always killed my knees, became painless.  They also showed me how changing my posture relieved a lot of pain in my lower back.  Tuck that booty and tighten that core, people!  Unfortunately, I couldn’t really sit with the posture they wanted from me, as it caused me to feel like I had weighted meat hooks stuck in my shoulder blades.  

So, what have you all been up to?