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!

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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.

 

Digging Out

 

No Weeping Angels were harmed in the making of this blog post….because they’re quantum-locked.

 
Greetings from the melting land of Snow Pussies, which we Virginians apparently are.  Several days after northerners finished making fun of us for freaking out over 3 feet of snow, (we don’t usually get this much snow, and so aren’t necessarily equipped to deal with this much.  So, yeah, we’re the assholes) we’re continuing to melt….and melt down.  In the past two weeks, Zoë has only been to school twice and Rachael has only been once.  If Rachael doesn’t have school on Monday, I think we’ll all lose our goddamn minds.  
  
  
Mike has taken the girls out to play in the snow twice.  The first time ended in a massive number of tears, not because they were hurt or had to come in too soon.  No, it was because the snow was too powdery. Seriously, Rachael had a teenage level of angst over the fact that they weren’t able to throw snowballs or make snowmen.  She yelled at me that she was never going out in that snow again, as though I had caused the wrong kind of snow to fall. So, naturally, she was out there a few hours later, making snow forts and throwing snowballs with her friends.  

 

Note my child in the orange coat, preparing to throw a what? A snowball!

 
I’ve been pretty worthless as a mom this week.  I’ve managed to engage with the girls in a few activities other than TV watching, (Legos, bead-making, painting) but the pressure changes from before, during, and after the storm have bitch-slapped me up and down.  I managed to take them to a bounce house yesterday, and then spent the rest of the day in bed from a migraine.  I haven’t bothered trying to wrangle them outside by myself; I know it would land me on my butt from pain and fatigue for days.  On Thursday, the girls made a pillow fort, over which they promptly argued.  My solution was to yell at them to stop yelling and show them the feebleness of their fort by making one for them.

 

Rachael asked to watch tv within 2 minutes of me finishing this.   

…..*whispers* send help…..

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?

Insurance companies like to play doctor

On Sunday, Mike came into the kitchen with a piece of paper in his hands.  He said, “Now, Julie, don’t freak out,” which, as we all know, is the universally accepted way to guarantee that whoever is about to receive bad news will be totally calm and collected.  My body tensed up and I offered a wary, “Ooookaaaaay?”
The letter was from our insurance company, United Healthcare, cheerily telling me that in order to save money, they were no longer going to cover my Lyrica.  The medicine my doctor prescribed for me to treat my fibromyalgia.  The medicine that has made the difference between my ability to walk or not.  BUT!  Not to worry.  I would have the “opportunity” to try other lower-cost alternatives now!  Once I sampled at least three drugs from a veritable buffet of pharmaceuticals, I could then be allowed to resume taking Lyrica.

I began sobbing.  Once again, the insurance company presumed to know better than the doctor and the patient.  Profit shares were more important than patients.  While my body isn’t in perfect condition, I have finally reached a point where my functionality, pain, and energy are better than they’ve been in a long time.  A combination of physical therapy, acupuncture, therapy, and a truckload of medicine and supplements fit together in a Jenga tower of healthcare for me.  If one piece is removed, everything will come crashing down.  Additionally, Lyrica causes weight gain for patients genetically predetermined to gain weight on such medications, like me.  The last time I went off Lyrica to try gabapentin it was an abysmal failure.  The more I took, the more pain I experienced, to the point of not being able to touch my feet to the floor, let alone walk.  So back on the Lyrica I went.  My body went, Oh, gee, this is a new drug that’s telling me to give Julie an additional 20 pounds.  To try and fail with another drug would guarantee more weight gain for me, making my body virtually untenable.

I looked at the list of drugs I needed to try. It was laughable to me.  If ever there needed to be more evidence that so many believe fibromyalgia to be all in the patient’s head, this list of drugs proves it.

1. Cymbalta
An anti-depressant that I’m already taking.  While it is a drug that is specifically marketed to help with pain caused by depression, it stopped managing my pain within a few months of beginning the medication.  Anecdotally and according to doctors with whom I have spoken, this is common with Cymbalta.

2. Gabapentin (commercially, Neurontin)
It does work for some, but you have already read how it worked out for me.

3. Effexor XR
An anti-depressant.  I’m already taking an a anti-depressant.  Two, actually.  I don’t need a third.  It can be used off-label to treat diabetic neuropathy, but medications that are actually meant to treat that condition are preferred.

4. An anti-depressant, like amitriptyline
Again with the anti-depressants!  Oy!  Depression doesn’t cause fibromyalgia; fibromyalgia causes depression.  Wouldn’t you be a tad bit depressed if you were in constant pain, knew you were going to be in constant pain for the rest of your life, and could no longer participate in life the way you once did because of your pain and fatigue?  This is also a potential off-label treatment drug but, again, I don’t need a third anti-depressant.

5. Savella
What’s the problem with Savella?, you may ask.  After all, it’s a drug that specifically treats fibromyalgia.  Here’s the thing.  I am in fibromyalgia forums where people ask about experiences with Savella all the time.  Out of the hundreds of people who say they’ve been on Savella, two have had a good experience.  Two.  Noooooow, I’m not a bettin’ woman, but those don’t seem like terribly good odds.  One of the bad side effects of Savella is terrible nausea. I am a complete pussy when it comes to nausea.  Give me pain any day over even the slightest bit of nausea.

Once I was able to pull myself together, I began Twitter-shaming United Healthcare as quickly as my brain could think and my fingers could type.  On Monday, once I explained that trying new medications is not like sampling ice cream before you choose your cone, I was given the prior authorization number for my doctor to call, (which was conveniently left off of the letter) to tell insurance that I need to be on Lyrica.  Because the prescription wasn’t enough.

Via Garfunkel & Oates

Via Garfunkel & Oates