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!
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.
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.
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.
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.
I’ve never been one to love exercise. Once we moved back to Virginia at age 7, I was given Twinkies and discovered the Disney channel; going outside to play was no longer at the top of my “to do” list. I played softball for one disastrous season where the coach hardly ever showed up, but wasn’t otherwise involved in organized sports. I preferred reading or playing the piano. I have always been one of the kids that only made it through the first half of the first lap, (out of four) on the mile run before having to stop and walk. Consequently, as I’m sure you can imagine, I was always on the chubby side.
Finally, I got sick of it. Enough was enough; clothes weren’t fitting and I was tired of getting winded from fairly simple tasks. I began Weight Watchers and going to aerobics with strength training. I lost weight and inches and toned various problem areas. I wasn’t “skinny”, but I was at a place where I was happy enough with my body and fitness level.
Me, at my smallest
I was heartbroken when I had to discontinue aerobics, with the realization of fibromyalgia setting in and the toll one aerobics session took. While I can cut calories, my body has always been very resistant to shedding pounds without exercise. As I’m sure I’ve mentioned on here before, doctors will repeatedly tell fibro patients that they must exercise to feel better. And, as I’m sure I’ve mentioned on here before, my immediate reaction is to want to punch those doctors in the throat. I knew they were right, but it’s difficult to exercise, (yes, even to walk) when the exercise programs are not built for people with chronic pain. I decided that my inability to exercise was bullshit, and attempted to work with others to create such a program. Unfortunately, the person on whom I was placing most of my hope, used me and my idea to complete her senior independent study, strung me along for months, and then left me hanging out to dry once she graduated college.
On the plus side, I’ve been able to keep up with physical therapy, which includes aqua therapy. In the pool, I am able to perform exercises, like squats, better than I ever could on land. The exercise doesn’t affect my weight, but my strength is much improved, which helps me tolerate the pain a little more. My therapists remind me than I’ve come leaps and bounds from where I began, (in the beginning, I was worn out after 5 reps of tightening my core) but I am still frustrated. It’s difficult to push from my mind that I was once capable of so much more.
The thing that has really stirred anger and aggravation in me lately are the motivational exercise videos and pictures various people post or like on Facebook. This morning, I watched a video of two women about my age, working out. As I watched, I settled into what felt very much like jealousy. I coveted the ability to perform the motions their bodies performed easily. I wished I still had the ability to squat. I envied their ability to jump like them, their feet leaving the floor effortlessly. I felt like a kid excluded from a club as they executed burpees. Yes, as first brush, it was clear to me that my annoyance stemmed from jealousy. As I wallowed in my jealousy, I noticed words of bargaining intruding. If only I didn’t have fibro, I would push myself and exercise like this. Now that I know what I’ve lost, I wouldn’t take my body for granted again. And that’s when it hit me: I’m not jealous. I’m grieving.
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.
Lately, I’ve been crushing life. If by “crushing” you mean sucking enormously at managing to keep up with everything. The last several weeks have been filled with doctor appointments, physical therapy, acupuncture, remodeling the kitchen, trying to keep the house from being swallowed by mess, and barely qualifying as a parent and Girl Scout leader. I look around the house each day and feel physically ill by the state of it all. My inability to keep days and activities straight in my head make me worry about what my brain will be like when I’m old and gray. A state of panic chases me and causes me to stumble into the next day.
Treating my fibro
I have finally managed to begin physical therapy and acupuncture. I love water physical therapy! It allows me to use muscles and exercise in ways that I just can’t on land. Therapy on land is transformative. It turns out my SI joint and pelvis were out of alignment. It’s also been really painful to lay on my side/hip. After one session, my PT was able to adjust me, and the extreme tenderness and pain that made me yelp when she touched me was gone. GONE! I’ve also been given very doable home exercises, some of which can be done while I go about my day. At my last session, I found out I have a weak butt. Or weak butt muscles, anyway. My homework is to clench and release my butt.
I have had a few sessions of acupuncture or, as I like to call it, Napping with Needles. The jury is still out on how I feel about it, but I know it’s too soon to tell if it’s making any difference, for good or for ill. I will say that my last session seemed to make all the difference in the world. I am fighting a cold and had gotten very little sleep the night before. I was so bad off that Mike had to drive me to my appointment. Within an hour or so, I felt fantastic! That seems like a pretty big turn around for there not to be some causal link.
One aspect of acupuncture I was not aware of beforehand is that the therapist will manipulate your body and limbs in order to loosen them. That’s fine, but it is difficult to completely relax when the therapist is a man and leaning back makes you crotch-adjacent. Having my torso twisted, side to side quickly, so that my arms shake like cooked spaghetti and my boobs shimmy like the worst burlesque show ever, reduces me to embarrassed giggles. Getting to lay quietly in the dark with soft music for 30 minutes, though, is pretty great. I actively try to avoid falling asleep so no one hears my snoring. I’ve also learned that it’s pretty difficult to clear my mind, as my mind is a chatterbox with an attention deficit.
The second appointment with my new rheumatologist was much improved from the first. My new endocrinologist is awesome; she is absolutely convinced of the existence of fibro and realizes that plenty of other doctors treat fibro patients like crap. Finally, I’ve begun seeing a nutritionist in an attempt to lower my inflammation and lose weight. I love her! She is all about adding the good foods and refuses to forbid foods. Rather than making food bad or off limits, she’s more focused on making foods that will help you achieve your goal a habit. She also understands that a person’s body in chronic pain processes food much differently than a “normal” body. I’ve found myself reaching for better food and not craving a ton of crap.
This is such a burden.
Taxi service
I’ve been taking Rachael to a slew of doctor appointments lately. She’s been in therapy, as suggested by the psychologist who tested her for ADHD. I’m not sure what, if anything, it’s doing for her. But she seems to like going, and the therapist seems to understand the difficulties of our home. We also had Rachael evaluated by an occupational therapist for handwriting and fine motor skills, as the results of her ADHD testing suggested that those difficulties could be masquerading as an attention deficit. Results said she’s a bit behind and could use some therapy. Since then, her handwriting seems to have improved and she’s not having as many difficulties as she was 5-6 months ago. I may try to have her therapy over the summer. I feel like the harm of pulling her out of class on a weekly basis outweighs the benefit of OT at this point.
Finally, Rachael saw a gastroenterologist a couple weeks ago. She’s suffered with relux and tummy troubles for a long time. While Pepcid has made it better, her pediatrician wants to make sure that any underlying cause is found and corrected, rather than just continuing to treat the symptoms. Rachael is scheduled for a upper endoscopy at the end of June. She was a little nervous, but understood the procedure and was fine…..UNTIL THE DOCTOR SHOWED HER A STUPID CARTOON VIDEO ABOUT THE PROCEDURE! In the video, “Scopey” said that while he was inside, he might take some tissue for a biopsy. So NOW she’s freaking out to the point of losing sleep over it. Dude will get a nastygram over this.
Kitchen remodel
The other major thing taking up most of my time is giving the kitchen cabinets a facelift. I always thought the 20 year old , builder’s grade oak cabinets were disgusting, but getting up close and personal with them showed me that we had been living like animals for 6 years. The amount of filth caked on them and the number of cracks in the wood made my embarrassment for whenever we had company skyrocket retroactively.
I’m so close to being finished. It seems like there is always some hiccup or touch up that prevents me from getting on with things. But I do have one cabinet fully completed.
All that’s left is to affix the knobs, which we haven’t chosen yet. Several doors are ready to be hung, but the hardware store didn’t have enough hinges. Because, of course.
Hopefully I’ll be back blogging regularly again soon. I actually started writing this post weeks ago. But Zoë is snuggling with me and my brain is clear for the first time since I began writing this, so I can finally tell you what’s been going on with me.
I had my first ever yoga class last night. It’s supposed to be gentle yoga, but it smacked me up hard. I am now becoming one with my heating pads. I’m taking the yoga class through the nearby rec center. It’s a really small class, only 7 of us. And I’m not actually the youngest in the class! Huzzah!
I laid my thin yoga mat down on the hardwood floor, sat down, and said, “Nope,” and grabbed a thicker communal mat to lay under mine. I’ve always hated sitting on the floor, especially without something to lean against. So I sat there, waiting for class to begin and trying to figure out how to position my body — Criss cross applesauce, butterfly, pike, bent knees, pretzel sit. None of them felt comfortable, especially since I was also trying to hide how jacked up the bottoms of my feet were.
Belly breathe
Class began with diaphragmatic breathing, which is easy for me. As long as I didn’t have to do anything else while doing this deep breathing, I was golden. But, of course, yoga doesn’t work that way. Very quickly I found myself trying to remember to breathe, rather than hold my breath, as we did core exercises and my body melodiously chanted, Fuu-uuck youuuuu. For the most part, I had to modify the poses. Each time I lifted my arms toward the heavens, I felt like Winnie the Pooh doing his daily exercises.
It was like a sauna in the room before class began, so I was drenched in sweat by the time we were doing mountain pose — I was a strong, sweaty mountain. I’m pretty sure I lost a pound just in water weight. The skinny woman next to me was wearing long sleeves and wasn’t breaking a sweat, while I was wiping my face and fanning myself. (I probably could have used a squeegee.) I felt like offering her some of my body fat to help insulate her, so she too could sweat out her stress, toxins, and the Easter candy she ate.
As the class stood, doing tree pose, I started feeling really good. I stood there, staring at the fuzzy, tan room divider and felt fantastic. My body was calm and my mind was quiet. I was a joyous tree, swaying in a gentle breeze. Of course, I didn’t have my leaves up while I was doing this swaying, but that just means that I was joyous to the very core of my trunk. So really, if you think about it, I was the best a tree pose because I didn’t need leaves to show how good I felt through swaying.
As class began to wind down, we made our way down to our mats. From a seated position, we engaged our core by slowly lowering our bodies to a laying position. I was immediately reminded of one of the reasons I had quit aerobics and strength training; the fibro tender points on my butt were pressed. I did my best not to yelp in pain, and adjusted my breathing to the rhythm of Fuck.. fuck.. owwwww, fuck.. fuck.. owwwww. But I had finally made it to the end — deep breathing while lying on my back. I was a little annoyed that I had to relax with my palms facing the ceiling, which isn’t a relaxing position for me, but ¯\_(ツ)_/¯ . So I breathed and stared at the dim ceiling and listened to Enya’s May It Be and thought, That’s right, Enya. I am like Frodo.
Talking calmly through emergency room-level pain
Today, I’m pretty sure I was stabbed with white-hot pokers while I slept. I talked to my family normally through, what would be for a “normal” person, pain worthy of sending them to the ER. This is slightly inconvenient, as Zoë’s birthday party is this weekend, and the house is a complete wreck. (Although the house isn’t as big of a deal, so long as my father-in-law doesn’t mind stepping around boxes, toys, and crushed goldfish crackers and a kitchen that smells like a restaurant dumpster.) I know the more I do this, the easier and less painful it will become. And anyway, you know what they say: Whatever doesn’t kill you makes you die a slow, agonizing death in the alleyway where it shivved ya.
I had my first pain management doctor’s appointment today, as the new rheumatologist I saw at the beginning of the month doesn’t do pain management. I went in hopeful. I should have known better. Once again, I was met with fat-shaming and incredulity. And after he was finished beating the shit out of my body, confirming what three other doctors have already diagnosed, I was treated to feeling like a drug addict when I signed the agreement not to sell my tramadol and handed them a pee sample.
I don’t really feel like writing a long, coherent post with subject, verb, tense agreement, so here are the highlights.
Is there something in the Doctor’s Guide to Being an Asshole that says that when a patient complains of fibromyalgia, the doctor must poke and prod as hard as possible so that the patient gasps and screams? It’s like if you went to the dentist, complaining of a sore tooth, and the dentist shoved a sharp instrument up through it to make sure you’re really telling the truth. I felt like I’d been on the wrong side of Mike Tyson by the time he was finished.
Maybe this is my own personal quibble but, when did doctors stop giving physician referrals? I keep having doctors tell me, “You need to go see this specialist,” but don’t give me a place to even start. Are we just supposed to figure it out for ourselves? At the last doctor visit was the rheumo telling me I needed to go to physical therapy, but to make sure it was somewhere that has experience treating fibro. Today, I was told to go see a dietician for weight loss and a non-inflammation diet. And when I asked for professional referrals, they looked at me like I’m ridiculous and bothering them.
Why do doctors insist on fat-shaming their patients? I was in a fuck-ton of pain when I was 100 pounds lighter, back before there were weight gain-causing meds and the inability to exercise. Will weight loss make me healthier? Sure. Will it eliminate my pain? No.
Image via imgarcade.com
I’d like to get these doctors to understand how it feels to live with chronic pain, especially when it comes to exercising, (yet another thing I got shit about today, as I don’t do enough aerobic exercise.) You know what I’d like to? I’d like to beat the shit out of them with a baseball bat, tell them to drop and give me 100, and then scream in their faces like a drill sergeant: WHAT’S THE MATTER, PRINCESS?! DOES IT HURT? IS IT HARD? ARE YOU GONNA CRY? IS LITTLE BABY PRINCESS GONNA CRY? Do you want to stop? You do? GIVE ME ANOTHER 100!
I’d also like to strap them into some sort of device that creates fibro pain, (like the ones that cause douchey husbands to feel what labor feels like) and then make them go for a 10 mile run. RUN, FORREST! RUN!
“Studies show that Percoset and other narcotic pain meds don’t really help fibromyalgia.”
The pain doctor actually said that to me. I just wish my body had known that when I had to take it while I was at Disney so I could have the ability to walk. And I’m really tired of doctors saying that studies show this and that, when it’s really just an excuse to do whatever the hell it is they feel like doing. Of course, narcotic pain meds don’t cure fibro. But on days like yesterday when I could barely walk without crying because of how much damage he did to my body during the exam, it would have helped. Fuck the “studies”.
I really wish I understood why doctors insist on under-medicating pain patients before they’ve even exhibited signs of addiction and abuse. Doctors don’t do that to other patients in pain. It would be the equivalent of a doctor saying to a person with a broken leg, “What you need to feel better is a cast and crutches, but you’re going to have to just walk it off and find some other way to feel better.” It sounds ridiculous, but that’s what doctors do to chronic pain patients all. the. time.
Once again, I feel stuck. Being stuck with a shitty doctor is almost like being stuck in an abusive relationship- you can’t leave because, if you do, it will look like you’re the one to blame. It will look like I left because I’m a drug-seeker, hoping to find a dealer with a medical degree. You’re an addict, Harry.
Finally, a message to all the doctors who think I don’t exercise…
You’re an addict, Harry.
Julie, Unfiltered 