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

Crushin’ It

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. 

Another day, another asshole doctor

 

Keeping count like the Doctor

 
I finally went to see a new rheumatologist yesterday.  She was recommended to me by my primary care doctor and a friend.  I went in, hopeful that I would find this doctor to be respectful and one who would listen to my opinion and experience.  I left feeling as though I had been burned by the fire of a thousand side eyes.  On the one hand, she was quiet and let me speak.  On the other hand, hearing what I had to say is different from listening, and it’s on a completely different plane from believing.

Doctor Speak

How doctor’s look during a fibro appointment

Generally doctors don’t come right out and say exactly what they’re thinking. Well-trained in the art of throwing shade, they tend to belittle you in such a way that it sounds like they’re trying to help you.  We Spoonies are experts in doctor-speak.  We’ve heard, it’s all in your head, you hysterical (wo)man, in many dialects: “How is your stress level?”; “Do you have a history of depression?”; “Oftentimes it’s actually depression that causes pain.”  Other common conversations involve indirect, or even aggressive and direct, accusation of drug dependency. My “favorite” so far, as a woman who has gained weight because of medication, an inability to regularly exercise, a medically confirmed genetic tendency to easily gain weight, especially when medication is involved, and an availability of Girl Scout cookies, is the insinuation that I’m just a lazy, fat load who would feel better if I just exercised and lost weight.  Yesterday, as the doctor smiled derisively and subtly rolled her eyes, I was essentially called a drug-addicted fat load who just needs to get off her lazy ass and exercise.

“We want to go ahead and get you off the pain medication so that your body is no longer dependent on it.”
You’re addicted to opiod medication.

“Do you exercise?”
Do you exercise? Because you really don’t look like it.

“I can’t exercise too much, but I have two little girls, so it’s not like I’m sitting around.”
“Yeah, you really need to exercise. You could do yoga, tai chi, walking, water aerobics, you could just walk in the pool.”
Doing all the things you do as a stay at home mom aren’t good enough. And with all these options available to you, you really have no excuse not to exercise, you lazy woman.

“It’s actually been difficult for me to get into a class that works out. I was enrolled in a yoga class, but it was cancelled because of lack of enrollment. And if you go private, it’s really expensive. That’s why I’m working with someone at George Mason, in the therapeutic recreation program, to develop an exercise program for people with chronic pain. It’s frustrating for me because, before I got sick, I was doing aerobics and strength training regularly.”
“Really?”

I’m going to be stone-faced, smiling, and slightly roll my eyes because Excuses excuses blah blah blah excuses. Your exercise program is an adorable way of avoiding real exercise, so I’m going to keep nodding and giving you side eye. Wait, what? You used to exercise? You could have fooled me.

“Have you tried Topomax?  It’s like Lyrica, but it helps you lose weight by making some foods taste unpleasant.”
Let’s try this other drug because you really need to stop eating and lose some weight.

Hostile Intentions
So why are doctors so hostile toward people who live with chronic pain?  I believe it comes from prejudice, ignorant assumptions, misinformation, and lack of education.

1) Prejudice
It’s been pretty well established in research that general attitudes toward overweight persons are negative.  These attitudes do not suddenly cease to exist at the doctor’s office door.  Researchers at Johns Hopkins found that physicians were less likely to be empathetic toward and build rapport with overweight patients.

“Obese patients may be particularly vulnerable to poorer physician-patient communications, Gudzune says, because studies show that physicians may hold negative attitudes toward these patients. Some physicians have less respect for their obese patients, which may come across during patient encounters.”

Anecdotally, I, and plenty of people I have talked with over the years, have experienced such negative attitudes from doctors over the years. No matter the complaint, the recommendation is always the same: You need to lose weight. Granted, sometimes it’s perfectly within reason for the doctor to give such advice. But all too often, the doctor walks in and decides that weight is the problem, before even hearing the complaint.  I remember one visit I made several years ago because both of my knees had suddenly begun hurting.  The older, male doctor told me that they’d feel better if I just lost some weight.  Granted, I was a little overweight at the time, but not so much that my knees should have suddenly given me the level of pain I was experiencing.

2) Ignorant assumptions
Coupled with number 1, doctors make assumptions about how a person lives their life, simply by looking at their weight.  All they see is an overweight person.  They don’t care how you came to be that way, nor your daily routine.  They don’t see you hardly sitting down in a day because you’re tromping up and down stairs with baskets of laundry, cleaning up toys, doing the dishes, shopping for groceries and lugging all the heavy bags inside, walking kids to the bus stop, chasing them around playgrounds, and helping them ride their bikes, who generally has healthy snacks of fruit and Greek yogurt.  All they see is a fat person who is too lazy to join a Crossfit box and eats junk all the time.

Ignorant assumptions are not confined to lifestyles.  They are also made about individuals who take heavy duty pain meds just to function like a “normal” human being.  It is assumed that if a patient takes narcotics, particularly opioids, they will become addicted, if they are not already.  People who live in chronic pain tend to be afraid to ask for pain medication because of how doctors may view the request.  According to Social Work Today, “‘Living with chronic pain is exhausting,’ Barrett says. ‘The undertreatment of chronic pain can lead patients to appear to be engaging in drug-seeking behavior. I have had clients whose doctors have not taken their physical pain seriously.'”  The article goes on to cite a study from 2011, which found, “For patients with chronic noncancer pain, opioid prescription remains highly controversial, and even in the wake of prescription guidelines and educational efforts, primary care physicians continue to practice under misconceptions about appropriate opioid use vs. addiction, leading to patient undertreatment (Wolfert, Gilson, Dahl, & Cleary, 2010; Hooten & Bruce, 2011).” 

3) Misinformation and lack of education
I’ve combined that last two because they go hand in hand.  Plenty of doctors still do not believe in the validity of fibromyalgia.  I’d say it’s pretty difficult to effectively manage the pain of an “imaginary” medical condition.  In addition, many doctors do not have the training to administer effective pain management.  This lack of training not only includes the inability to prescribe an effective dosage, it also makes them fear that their patient will become addicted, should they receive narcotic pain medication.  According to a 2003 study published in Pain Research & Management: the Journal of the Candian Pain Society, poor pain management is something that doctors themselves acknowledge.  In a survey of 100 Canadian physicians, researchers found,

“For moderate to severe chronic noncancer pain, opioids were the first-line treatment of only 32% of physicians (16% preferred codeine, 16% major opioids) because a significant number preferred either non-steroidal anti-inflammatory drugs (29%) or acetaminophen (16%). Thirty-five per cent of GPs and 23% of PCs would never use opioids for noncancer pain, even when described as severe. Chronic pain was deemed by 68% of physicians to be inadequately managed. Almost 60% thought that pain management could be enhanced by improved physician education. Identified barriers to opioid use included addiction potential (37%) and side effects (25%).”

The study goes on to conclude that, “Even among physicians experienced in chronic pain treatment, there is a reluctance to use opioids for severe nonmalignant pain. One-half of the survey participants believed that there was a need for improved physician education in pain management, including the use of opioids.”

Why this fear of addiction?  Where did it come from?  According to the same, above-referenced article from Social Work Today, it stems from a coincidental rise in prescription drug abuse at the same time doctors began prescribing opioids for non-cancerous chronic pain.

“As a result of media attention on increasing rates of prescription pain medication abuse, those with chronic pain who had previously found improved functioning, psychological health, and quality of life with appropriate opioid use began to face increased difficulties receiving effective treatment.”

This leaves chronic pain patients to, effectively, sing for their supper.  Patients must prove that they really are in enough pain to require such heavy duty medication and overcome any biases and trepidation the doctor may have about prescribing it.  It also gives patients the onerous task of somehow allaying any suspicions that you are simply engaging in drug-seeking behavior to feed an addiction.  I have done this song and dance myself.  I put it off for a long time because I didn’t want to be judged as an addict.  Once I was prescribed Percoset for breakthrough pain, it took me over 3 months to go through 30 tabs, (many of them taken so I could walk at Disney.)  The new rheumatologist wasn’t buying it, though, and refused to give me a new prescription.

Now what do I do?
My first instinct is to turn tail and run hobble. Although there were some positives of the encounter, I am still left feeling dirty all over. It’s pretty clear that she doesn’t take me seriously, nor does she believe that I won’t abuse medication.  Her hostility toward me was reflected in the comment she made to me while I was having difficulty locating a word because of fibro fog: “This is why most patients write things down.”  Not one to take an insult lying down, I fired back that I couldn’t have done because it was a question about something she had brought up during the appointment.

If I were to leave and go elsewhere, again, I know that I would risk the appearance of drug-seeking behavior.  You didn’t give me the drugs I wanted, ergo, fuck you and on to the next dispenser of DEA controlled substances. I also realize that her attitude is pervasive, so leaving probably wouldn’t do any good.  I do hope that future encounters will allow her to get to know me, for me to know her, and a better doctor/patient relationship to form.  Until then, I’ll just need to stay informed, stay strong, and get my Stuart Smalley on.

God Does Not Work That Way!

Since the dawn of man, people have looked for ways to explain their world. Comets were once thought to be bad omens. To have a mental illness or epilepsy meant you were possessed by demons. A bad harvest meant that the goddess, Demeter, was displeased with you. The creation of the Earth was, (and still is, for some people) explained by a poem written around the 6th century BC. And today, people explain illness and tragedy as God’s will. When people can’t explain why a child died, they say, We can’t understand the mind of God. If people are suffering, whether with a chronic illness or becoming overwhelmed by life, others will try to comfort them with, God will never give you more than you can handle. When that doesn’t ring true, they add on “without Him”. Some proclaim that God allows you to suffer because your faith is great, so you may be an example to others, like Job. The flip side of that is that you haven’t been healed because you haven’t prayed enough or your faith is too weak.

YOUR LOVE IS LIKE BAD THEOLOGY

We’re going to assume, for the same of argument, that Jesus was/is who He said He was/is. The Son of God traveled, not only preaching the Good News, but also healing the sick and raising the dead. I can certainly understand why people may glean from the Gospels the idea that God allows people to suffer.

As he went along, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”
“Neither this man nor his parents have sinned,” said Jesus, “but this happened so that the work of God might be displayed in his life. As long as it is day, we must do the work of him who sent me. Night is coming, when no one can work.”
John 9:1-4 NIV

I think plenty of people stop at verse 3 and hold it up as proof that God made or allowed this man to be blind so that God may be magnified and glorified. They completely miss the actual point, which is to do God’s work by helping others. Add on verses where Jesus asks people who are asking for healing whether or not they believe in Him, and it’s no wonder where this suffering theology comes from. But I find it telling that, while Jesus may have asked people if they believed, (and for all we know, it could have been something the disciples slid in there while writing the Gospels) He didn’t make them go through a checklist or faithfulness song and dance to prove themselves before healing them. In one case, Jesus found it more important to forgive a man’s sins, rather than physically heal him. It was only after the Pharisees pitched a fit did Jesus add in healing the man’s paralysis, just to shut them up with a resounding So’s your face! (I may be paraphrasing.)

Sometimes I think we forget and only look at the words of Jesus. We forget that His actions are every bit as important. Jesus healed the sick. When someone asked Him for healing, He didn’t say, Nah. Imma sit this one out. But you can head on out from your leper colony and tell everyone how awesome I am. Hosanna, y’all! To claim that God only heals those who call upon His name and are deemed worthy enough is to call God a capricious asshole. It completely contradicts what we see in God through Jesus. What is revealed is a loving God who mourns with us. We don’t see a God who brings suffering. And we certainly don’t see a God who’s concerned about getting credit for good works. (“Go and tell no one…”)

I think, too often, we are like the Pharisees. When we don’t understand or something doesn’t fit in nicely with our worldview, we cling to what we know, (or what we think we know.) Sayings and beliefs, and even superstitions, are passed down from generation to generation. When we use them to explain things in our human experience, we are looking to our own understanding, (and explaining it as God) rather than to what Jesus actually showed us long ago.

He replied, “Isaiah was right when he prophesied about you hypocrites; as it is written:
‘Theses people honor me with their lips, but their hearts are far from me.
They worship me in vain; their teachings are but rules taught by men.'”
“You have let go of the commands of God and are holding on to the traditions of men.”
Mark 7:6-8 NIV

STOP IT! YOU’RE NOT HELPING!

Image source

Phrases like, “God will never give you more than you can handle,” has made me want to reach through the computer and shake people many a time. (Especially when it’s thrown out flippantly when someone is clearly suffering.) This time, I was set off by the “helpful” comments that people in my chronic pain support group shared. All of these were things that were said to them about why they are made to suffer.

Jesus suffered pain so others would not suffer much more in hell. Your suffering makes you like Jesus, and it draws you closer to Him.

(An ability to create a massive fish fry out of two fish and to form my liquid metal body into anything I want would also make me like Jesus, but you don’t see that happening. Or was that T-1000?)

I was once told by a Christian therapist that God wouldn’t heal me [be]cause I made him mad.

(So He took his toys and went home, or…?)

Our church said that our family [was] suffering with many illnesses so that the rest of the town doesn’t have to suffer.

(John Coffey? Is that you?)

Look…those of us with chronic pain and illnesses appreciate your concern and support. But, like most people, we just want to vent or have a shoulder to cry on. Some things are just shitty, horrible, and unfair. Trying to have a simple, pseudo-spiritual answer to make sense out of something that doesn’t make sense isn’t helpful. And think about this: how many peoples’ faith are you possibly destroying by saying such things? When people have suffered for years without relief, saying these things leads people to the logical conclusions that they, 1) Aren’t good enough for God, 2) That God doesn’t care about their suffering, 3) That God is oblivious to their needs and tribulations, and 4) God is a capricious jerk with sadistic tendencies. And this is assuming that they don’t give up belief in a god altogether.

Please, just tell us I’m sorry, or That sucks, or What can I do to help? Those go a long way. If you want to pray for us and healing, that’s great. But also pray for our families who suffer with us, for comfort, hope, and strength. Because, as Jesus so often pointed out, the non-physical is just as important. Just be there for us. SHOW us you care.

True or false?

Trigger warning for sexual assault.

Image source

He was tall with dark, curly hair. For some reason, he had become my drunken make out buddy at a couple of parties. The time he tried to feel me up, (we were both sober) I pushed his hands away. That’s as far as it ever went. I never wanted anything more. Then, one night, it went farther than I wanted. We were, or at least I was, drunk at an apartment party. I went with him into his brother’s room, which only had an air mattress and a couple of boxes. I remember just going in with an intention to sleep. But we did start making out and fooling around. I was tired and didn’t really want to, but I went with it. I remember him suddenly saying, I want to fuck you or I want to put my dick in you. One of those two. He didn’t wait to see how I felt about it. He just put on a condom and went in. I didn’t want to have sex with him. I didn’t say no. I didn’t really feel like I had the power to say it. I didn’t struggle. In my mind at the time, if I didn’t fight it, then there wouldn’t be a chance for me to lose the struggle and it actually become rape. When he was finished, I sheepishly emerged to go to the bathroom. The few people who were still out in the living room laughed at me because of the noises they heard. I peed, went back in, and went to sleep.
When I’ve recounted this story to friends, they’ve told me I was raped. Honestly, I still live in the land of Plausible Deniability, which is Regrettable Sex adjacent. It still makes me feel, at the very least, unsettled when I think about that night.

Unless you live under a rock, you’ve no doubt heard of or read the Rolling Stone piece involving the story of Jackie, who says she was gang raped at a UVA Phi Psi party. Anger and outrage from across the nation have rained down upon UVA, one of a handful of universities under a federal Title IX investigation for the mishandling of sexual assault cases on their campuses. You’ve probably also heard about the retraction Rolling Stone issued, essentially throwing Jackie under the bus, rather than owning their shoddy reporting. Suddenly, trust in Jackie was “misplaced”. Her friends and support group now no longer believe her story because some details may have changed. Details like whether it was 5 guys or 7 guys who gang raped her. You know. Things that a survivor who endured hours of trauma should be exact on, otherwise it totally didn’t happen. Jackie’s credibility has also been thrown into question because the members of Phi Psi have responded to her claims with a resounding, Not uh!!!! They have said that they do not use gang rape as a rush initiation ritual. And you know that if they did, they would be sure to admit it. They also say they did not have a party on the day in question. They conveniently don’t have the records from two whole years ago to back up that claim, but they’re a group of highly influential rich boys with a lawyer, a national chapter advising them, and have had two weeks to rally. So you know they’re telling the truth. I’m not going to go through each and every refuted claim. Suffice it to say, it’s very odd that everyone seems to suddenly doubt Jackie because of what Phi Psi says.

I’ve seen a few rape culture myths trotted out in relation to this story. There are the classics:
– Why didn’t she go to the hospital?
– Why didn’t she go to the police and press charges?
– Why doesn’t she name the guys if she’s telling the truth? What does she have to fear if she’s telling the truth. *gasp* She must be hiding something.

Image source

My new favorite, though, is: She probably has false memories. Some details have changed over the past two years, so clearly she’s “remembering” things that didn’t happen. (Let’s just be real, though. I wouldn’t be surprised if Phi Psi had a few false memories of their own.)
I guess that is the logical argument to make if you want to call someone a liar without actually calling them a liar. So let’s break down why this is bullshit and tell armchair psychologists where they can shove their armchair.

1) Eyewitness testimony can be unreliable IF they witness a crime or fleeing criminal from a distance and/or it takes place too quickly for the brain to process it. It is then that someone’s brain may try to fill in the gaps or are susceptible to suggestion. That certainly doesn’t apply here.

2) False memory diagnosis was developed, in part, by Sigmund Freud. It posits that memories of sexual abuse from childhood may be repressed. When they are recalled, false memories may present themselves. Taking it a step further, false memory syndrome is when someone bases their life around a false memory. The latter would certainly describe Jackie’s case. The problem is that there is no accepted empirical literature published, nor is it a diagnosis within the Diagnostic and Statistical Manual of Mental Disorders, (DSM-5). So…..no.

3) Our brains are so wonderful, in that they are capable of denial. When trauma is too much to handle, our brains will protect us by kicking back the information as bogus, (common in cases of sexual assault.) Another protective action our brains take is compartmentalization. Your brain will say, I can’t handle this right now, so I’m going to set you aside and ignore you. Over time, these memories become shrouded in cobwebs in a darkened corner of one’s mind. It’s still there; it still affects you…your psyche. But it becomes increasingly difficult to pull back out and deal with it. Your brain fights back, continuing to try and protect you. But once you begin to deal with it, you may find you remember things that you meant to banish forever.

It is insulting to suggest to a survivor of sexual assault that they may be unintentionally making things up. It’s effectively patting them on their heads, handing them some cocoa, and saying their little women brains and wandering uteruses don’t know what they’re talking about. It takes away what little power the survivor may feel s/he has left; it is the power of knowing their own story.
I told my story at the beginning because I don’t remember a lot of things. I don’t remember what day or year it was. I don’t remember what or if I said anything to anyone right after it happened. I don’t remember the guy’s last name anymore. But there is one thing I remember with absolute certainty:
It happened.

If you have, or even think you have, been the victim of sexual assault and need support or don’t know what to do, please call the Rape, Abuse & Incest National Network (RAINN) Sexual Assault Hotline at 1-800-656-HOPE.

Some work and some play

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Over the weekend my friends and I agreed that we all have had the same dream at one time or another. They all involved some form of needing to return to high school or college because we had not actually graduated. In my dreams, it’s usually because I need to take a math class or an English class taught by one of my former English teachers. The only thing she and I had in common was contempt for one another. My best friend, Beth, and I would sometimes skip class and go shopping instead. I have great memories of trying on prom dresses at Bloomingdales, hiking up the skirts and pretending to run down the beach, imitating an Elizabeth Hurley commercial that was out at the time. I’m sure the clerks loved us.

Anyway….

Since homework began for Rachael about a month ago, it has felt like I actually am back in school. Rachael generally doesn’t have difficulty with understanding the work. Although, when she does, I can’t help but feel like this is actually the pop quiz my teachers warned me about. I am relieved to find that Rachael doesn’t receive an inordinate amount of homework, like in the horror stories we all hear. Still, the small amount of work she does receive has caused a big change in how we spend the precious few hours between coming home from school and bedtime. The addition of an after-school Spanish class once a week has stolen more time and, seemingly, more energy from my little 6 year old. (Thankfully, she loves the Spanish class.) It seems, now, we are spending afternoons completing homework within the sludge of exhaustion, (both she and I.) Words on the pages of the books she reads become jumbled and blurry because of tired tears.

Mike and I have wondered what we can do to make everything easier on her. I let her take breaks when the frustrated screams burst out of her. I do my best to maintain patience and, what Mike calls, an “NPR voice”. Last week we had Rachael go to bed earlier and had her take some quiet resting time in her room. But this morning, I had a realization: Rachael isn’t getting enough play time during the week. Recess is a paltry 20 minutes and she only gets choice time on Fridays. She has PE, but we non-athletes know that PE is A) not free, imaginative play, and B) pretty stressful when you’re being forced to do things you don’t have the ability to do, (I’m looking at you, Presidential Fitness testing!) She no longer has time to play with friends after school. So she’s left with whatever she can squeeze in between homework, dinner, and bed.

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Is it any wonder that she has become a little red-headed ball of cranky melancholy during the week? Not only is she not getting time to just be Rachael and have fun, she’s not getting a chance to have much of a cognitive dump during her waking hours. Free play allows kids to tap into different brain centers and let the others take a break. It gives them a chance to work out problems they encounter at school. Free play builds the bonds of friendship and teaches kids how to be empathetic. Most importantly, I think, is that it doesn’t require anything of them. They don’t necessarily have to be “good” boys and girls. They don’t have to be quiet, still, and focused. Rather than following instructions, they make the rules of their imaginary world or choice of play. Rather than feeling overwhelmed by all the information with which they are inundated, (as Rachael has expressed to me) they have a chance to exert control in their world.

So I think, this week, my homework will be to protect the sacredness of playtime. Now is the time that precedent and expectations are set. Rachael needs to know that, while education and hard work are important, so too are fun, creativity, and a chance to just be. The last thing I want to do is inadvertently communicate to her that this will be the rest of her life- work, stress, and no free time, with no time for things like reading for pleasure, playing games, and self-care. Perhaps if we all begin valuing play time a little more, it will infiltrate the “real world” and press a reset button for our priorities. Learning this has been infinitely more valuable than knowing the cosine of an angle or how to do a pull up while eeeeeeeeeeeverybody watches you. Seriously, Schwarzenegger, what the fuck?

Therapy and the Mind/Body Connection

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I skipped the last session with my previous therapist. Or, more accurately, I sent Mike in my place to pay the bill because the thought of going to another session sent me spiraling into an anxiety attack. Talking itself didn’t worry me. But the physical pain I experienced afterward was enough to make anyone run away like a rat in a maze after an electric shock. I would always walk out of the office fatigued, feeling like the wind had been knocked out of me. My limbs would burn. My neck and back muscles ached and stabbed at me. Laying on a heating pad helped very little; only time rid my body of the torture. And time moves slowly when you can barely move and are a prisoner in your own body. Like the maze rats, I learned to stop pressing the lever.

I was in therapy because my doctor had recommended it. In fact, therapy is generally recommended for anyone with fibromyalgia. Even if you don’t have a past which requires therapy, (and God knows I do) a life with chronic pain and fatigue is going to require a great deal of emotional support and healthy coping strategies.
In my case, I knew I was going to need strategies for coping with the stress and anxiety that triggered painful flares, and vice versa. In fact, my body hurting in certain areas was usually my first clue that I was stressing about something. While this therapist provided me with some important insights about my past, psychotherapy, (prior to Lyrica) proved too much for my body to handle. Not to mention, I never really received effective coping strategies to stave off the stress and pain.

Suffice it to say, I was nervous to try therapy again. What would be the point of therapy if it caused me as much or more pain than simply existing? But increased hopelessness, depression, and thoughts of suicide left me with little other choice. This time I synced up with a cognitive behavioral therapist. Now, not only do I talk about my past and day to day, I talk while holding vibrating paddles in each hand. The bilateral stimuli works in my brain to help with unlocking and processing these difficult memories. I don’t just talk about my feelings and behavior, I examine my feelings within the memories and work toward teaching my brain to realize that the memory is just that and no longer a threat. I learn calming techniques like the light stream technique, focusing on deep breathing during mindfulness, and packing up my memories and feelings when it becomes too much. I can pull them back out and work on them another time. And let me tell you, progressive muscle relaxation is amazing!

I still experience the pain during therapy: the pockets of burning and the tightening of leg muscles, rooted in a primal need to fight or fly. My brain is fighting harder than ever to keep those memories locked away and hidden. They’re behind doors and replayed scenes obscured by blackness. It means I’m getting somewhere. It means there’s hope that I can teach my mind to know that, those times when I felt unsafe and without control, are over. And if I can teach my mind to resolve those moments, perhaps my mind can let my body know that it’s okay to relax. My hope is that, someday, I’ll have control over this mind and body, inextricably linked. Until then, I’ll just imagine an aqua light beaming in through my head and down into my legs, which are now hurting because I wrote this post. Or I could pat my legs while talking abut baking. That really calmed me down during my session the other day. Anyone want to talk about apple pie?

**While editing, I found this blog post, which does a pretty good job of describing one way I’ve experienced CBT and how past pain can cause current bodily pain.

Fatigued or Lazy?

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One of the biggest worries a Spoonie has is that someone will mistake the Spoonie’s fatigue for laziness. Should the judging party believe fibromyalgia and CFS/ME to be a bunch of hooey, seeing the Spoonie during a bad episode, or flare, of fatigue may just provide the skeptic with a large helping of confirmation bias. I can see that, from the outside, we probably do seem lazy. Dishes aren’t done. The house is a wreck. You don’t always volunteer for things. You haven’t done a single Pinterest project with your preschooler today. You’re laying on the couch, trying to stay awake, yet again.

The funny thing is that there are plenty of times when we Spoonies assess our own situation like Mrs. Judgy-pants, from the outside. We survey our own behavior and the disaster lying around us and think, What is wrong with me? Why can’t I just push through the fatigue and take care of this shit? Maybe I really am just lazy. I had that fight in my head this morning. I was going to go grocery shopping this morning. I really was! I picked out the recipes, made the list, and everything. But as I began getting ready to go, I felt my body begin to fade. I could almost hear the sound of my energy draining, like the sound the tractor beam to the Death Star made when Obi-wan powered it down.

To put it another way for the non-geeks:
Every cell in my body felt as though it were being drained. My body felt heavier and heavier. If you’ve ever carried large buckets of water in each hand, you may know how I was feeling. You’ll just need to also add buckets around your knees, ankles, shoulders, and neck. And don’t forget the irresistible urge to sleep that you must resist.
I began to worry that I was, in reality, just having an urge to be lazy, an excuse to not go to the store. I wondered if I should just suck it up and push through it. Ultimately I decided to save my spoons and try to do some smaller tasks around the house.

This is the balancing act we Spoonies must do all the time. We must balance “doing” and “not doing” for the sake of our spoons, and we must balance “guilt” and a “clear conscience” for the sake of our sanity. Many times my mind has shrieked in frustration because of the things my fatigue has not allowed me to do, things that I used to be able to do. I liken it to someone in physical therapy trying to regain the use of a limb. And then then depression seeps through the cracks and whispers, Maybe you’re just lazy.

I don’t regret my choice to forego the grocery store and avoid risking a spoon deficit. I still needed to be able to take care of Zoë and stay awake through homework, dinner, and bedtime. As much as I hate to admit it, grocery shopping is really hard on me now. And it’s not because I’m lazy; it’s because I’m sick.

But, first…

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I began thinking about a nagging feeling on Sunday morning while I lazily drank my coffee. It wasn’t the first time I had felt it, but it was the first time I was able to snare it with words. Even as I write this, the feeling keeps trying to break free and elude me once more.

If we rewind, it actually began on Saturday. I was stuck in bed all day. I could barely muster the energy to get up and walk 12 paces to the bathroom to pee. At other times, I didn’t have the strength to lift the remote and re-watch episodes of Doctor Who. I felt sad being separated from my family. I wasn’t able to go to Family Day at Zoë’s preschool. I didn’t have enough energy to cry about it.
I was in bed because I hadn’t really slept the night before. Any fitful sleep I had was filled with dreams. In between dreams I would awake to toss and turn, marinating in hot and cold sweats. At one point Zoë woke me up by smacking her butt. She had gone potty and wanted help getting her undies and jammie pants back on. On top of that, I had spent the previous two days going whole hog on household chores. I knew I had overdone it the first day and was going to pay for it, so I decided to fly my damaged spacecraft into the mothership and take those sons of bitches with me. Although, in this case, those SOBs were laundry and dishes. Any spoonie will tell you that what I did was a bad idea. But I did it and paid the price on Saturday.

All of this left me feeling like getting out and spending time with my family on this gorgeous, fall Sunday morning. But, first, I needed to take shower.
Suddenly I realized that that was the frustration I’d been feeling lately. I always had things I wanted to do, but it always seemed that there was a But, first… requisite.

I want to spend time with my family. But, first, I need to rest so I can have enough energy.

I want to write. But, first, I need to clean up the kitchen.

I want to be able to put out pastry chef-quality desserts. But, first, I need to learn basic techniques.

I want to take off and travel, to experience the world. But, first, I need the time, resources, and a little courage.

I want to create an exercise program for people with chronic pain. But, first, I have to do the grunt work and dismiss the nagging fear of failure.

I want to break free from the reality of my broken body and monotony of suburban life and do something different, dirty*, and daring. But, first, I have to figure it what that something is.

I just want to sing!

I realize that a lot of this is standard white whine. Some of it is depression. And some of this is strictly reality, and I need to suck it up and accept it. I don’t have any answers for how to deal with the frustration, nor a way forward. I can’t just break free of it through sheer force. Pulling with all one’s might AND winning the tug of war just leads to stumbling and falling. I have to get it to let me go. I knew that, as I experienced these feelings, I was going to have to battle them and quit ignoring them. But, first, I had to be able to name them.

*as in messy and complicated, not naughty

Another Fibro Warrior named Julie? I suspect a conspiracy!

I met Julie Ryan via Twitter and blogging about chronic illness. Earlier this year, Julie asked me to be interviewed for her blog, as part of her weekly “Fibro Warrior” series. That interview was the first time I had really contemplated the different aspects of my experience with fibromyalgia and afforded me an opportunity to tell my story. I found the experience cathartic, and was inspired to give others I knew the same opportunity. And I certainly wanted to return the favor to Julie.

Julie lives in Huntsville, Alabama. She is working toward earning her degree in psychology and is an online chronic illness health advocate. She blogs over at Counting My Spoons, maintains a Facebook page with the same name, and tweets at @drunkitty2000.

Other interviewees in this series are Elizabeth, Megan, and Trisha. If you haven’t had a chance to meet them yet, check out their interviews as well.

1) So, what ails you?
Fibromyalgia, migraines, endometriosis, TMJ, hypothyroid, cluster headaches, and probably a handful of other odds and ends.

2) When did you receive your diagnosis (diagnoses)? How long was it from the onset of symptoms before you had a diagnosis (diagnoses)?
I’ve had migraines since I was a kid. I have no idea when I was officially “diagnosed”. The TMJ symptoms started in 2008 after I had braces put on. It took me almost 6 months to even figure out what was wrong and then find someone who knew what they were doing to diagnose it correctly and help me. I thought things were turning around, and I had a few months in 2009-2010 where it felt like things were getting better. I’d started back to school. Then in the early spring of 2010 I started feeling really tired, having really weird eye/head pain, and general aches and pains that continued to get worse. I was diagnosed with Fibro pretty quickly, (compared to many.) Once again, in 2012, I was finally starting to improve and started having abdominal pain that eventually lead to the endometriosis diagnosis. They hypothyroid dx came along in 2013.

3) How does your illness manifest itself, (symptoms)? Does it or has it manifested itself in a way that is atypical? Did that delay receiving a diagnosis and/or does that require that you receive different medical treatment?
Initially there was a lot of worry that I had MS. They did every test possible to rule that out, because of the eye pain, combined with bilateral neuropathic pain in both hands/arms. The TMJ came about after I had braces put on so the orthodontist blamed my extreme headaches on my teeth moving. He treated me like I was just some kid whining. What he didn’t see was that I did nothing but lay on the couch in pain for 3 months. The only help I found was my chiropractor. He was the one who finally figured out it was probably TMJ.

4) Have any unconventional or naturopathic treatments worked for you? What are they?
My chiropractor does acupuncture. It helps quite a bit and it was the only thing that helped my TMJ initially. Diet change has helped me more than anything else, especially with the Fibro. Since I gave up gluten completely I don’t have the full on flare days (the total and utter fatigue combined with pain that lasts for days or weeks). I still occasionally have bad pain days, but they are one-offs and never last longer than a day.

5) How has your illness affected your daily activities? How has it affected you long term? Are there things you used to love doing, but can no longer do?
Initially, it had a huge impact and there were a few years there where I did pretty much nothing. I had to put school on hold. I’m not nearly as active as I used to be. The long-term aspects of the TMJ (neck/shoulder issues) has probably had the biggest long-term impact because, when I do things that require a lot of upper body for any periods of time, it increases pain. These days I’m back to a pretty much normal daily routine. I work out several times a week.

6) How has your illness affected your mental health?
It caused me a lot of depression. There was a time when I hit bottom and seriously considered ending it. I’m doing better these days, but it still gets to me. I do my best to stay positive, focus on what I can do, and do as much as I can.

7) How does your illness affect your family and friends? Have they been supportive?
My family has been very supportive. I’ve re-evaluated some friendships and made some new friends. Most of my friends, these days, also have some sort of chronic illness. I still have a few very close friends from before that are understanding, awesome people. I think chronic illness changes your views about what is important in a friendship, (and in life.)

8) What do you wish people understood about your illness?
I don’t know where to start. For those who are healthy, I just want them to understand that those of us with chronic illness are doing what we can. We are trying. For those with chronic illness, I want them to understand that there is hope.

9) What do you wish people understood about you in light of your illness?
That I’m doing the best that I can. That I want more, and I’m working for it. That I’m trying.

10) What has pissed you off the most during your journey with this illness?
The “Have you tried…” “I read…..” “What about…” “Maybe you need to exercise more..” “You just need more sleep”. So, I guess that would be the unsolicited advice. It makes me feel like you think I’m stupid. You know I’m doing everything I can.

11) What has been the most helpful?
The most helpful thing for me has been changing my diet. I’ve totally removed gluten, which has helped the most. But I also avoid dairy, eggs, and processed foods as much as possible.

12) If you could shoot one of your doctors/healthcare providers out of a cannon because of their asshattery, who would it be and why?
This is an awesome question! LOL! It would be the doctor that I referred to as Dr. Obvious. When I hurt my shoulder earlier this year, I went to an orthopedic doctor that I’d seen previously for another issue. I think he saw fibro on my chart and just dismissed me. He didn’t even look at my shoulder other than to force me to move in directions/positions that made me scream (literally). Then he dismissed me with a diagnosis of “shoulder pain”. The other would be the orthodontist that put my braces on. Even after I found out it was TMJ he wanted to be an ass. I asked for a refund because I’d pre-paid for the whole braces thing, and he wanted to: 1) deny that it was TMJ; 2) tell me that if it was TMJ he was not responsible because I obviously had it prior; 3) not refund me my money. I had to threaten lawsuit on him to get my money back.