Namaste, Spoonies

 

Panda is more flexible than I

 

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.

As I Lay Hurting

 

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…

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.

Maybe Mommy Should Have a Time Out

Image via Shutterstock

I’m sure that my mornings are no different than anyone else who has kids in school. They are stressful, hurried, and full of yelling. My girls and I have an arrangement: they give me reasons to lose my temper and I, in exchange, give them plenty of material for when they’re in therapy as adults. While the specific material varies, the skeleton of each morning’s script remains the same. Since we rehearse this almost every morning, I’m fairly confident that we could make a good showing on Broadway.

Off stage: Rachael plays with her sister, rather than brushing her teeth and getting dressed. Mother enters, stage left, and finds that Rachael is just now taking off her pajamas.
Mom: Why are you just now getting undressed?
Rachael: Zoë distracted me!

Zoë pulls her heart blanket from the hamper. It needs to be washed because she spilled nail polish on it and was treated with acetone. Mom takes blanket away. Zoë has a meltdown.

Zoë visits Rachael while she is supposed to be brushing her teeth. Rachael chats with Zoë. Mom yells from off stage.
Mom: Rachael, stop talking and brush your teeth!
Rachael: I am!

Zoë runs away and refuses to following instructions. Mom is helpless, as she is on the toilet. Mom commences pointless yelling.

Rachael has a difficult time putting on her socks. Mom grabs socks and puts them on Rachael’s feet.
Mom: If you were paying attention, you wouldn’t have so much trouble.
Rachael: I was paying attention out of the corner of my eye!

On the way to the bus stop, Zoë squats and declares that her shoes hurt too much. Her posture resembles that of a donkey that has refused to move.

Zoë refuses to remove her hat and coat upon returning home.
Mom: Zoë! Now! One…
Zoë: Two…..

And, scene.

I tend to lose my patience easily, especially when it’s the same bullshit day after day. I could honestly pre-record the top ten things I yell and go to a spa; it would be as equally effective. I do need to find a way of controlling my temper. Not just for them, but for me as well. With fibromyalgia, my body feels the stress and anger. Most people experience increased heart rate, blood pressure, tension, and quickened respiration. I experience all those things too, but the stress manifests itself within my muscles. My skin. My bones. Even though regular body responses have returned to normal, the skin in my right arm is still on fire. Sometimes it means that muscles in my legs will begin to feel as though they are being stabbed, making it difficult to walk. Pain that tingles and rips through my chest used to worry me that I was having a heart attack. Now I know that my chest is just pitching a fit because I’m upset. My favorite, though, is when I think I doing alright and have come back down, but sudden numbness, tingling, and burning in my face informs me otherwise. Even while writing this post, I realize that my body believes me to be a cunt for stressing it out, and so is giving me all those things at once.

Image via film, Camp Takota

I don’t have any great solutions or wisdom to impart to other parents facing the same problem. If I did, I’d bottle that shit, charge $75, and get a book deal out of it. I suppose that I just wanted to commiserate with my fellow Spoonies and to share with others what it’s like for me and others like me. It really is best to remain as calm as possible in order to avoid pain flares. Oh, and I guess it’s important not to damage your child’s little spirit. When you’re unable to maintain control, then you end up like my girls and I this morning- girls crying because their mom lost it and said that, with as much as I yell, the neighbors are going to call social services and take the girls away. Damaged spirit: check! Mom, knowing she’s gone too far, apologizing and hugging her girls close, telling them that no one’s taking them away. Mom, still in pain hours later because she lost her temper and was a complete and horrible asshole toward her children.

Fibromyalgia and Broken Promises

Her face falls and her shoulders slump.
“I’m really sorry, honey. I’m just hurting way too much.”
“Okay,” Rachael responds, shuffling away from me. She understands. That somehow makes it feel worse.

The annoyed sigh that I expected Mike to breathe comes through the phone.
“Okay.”
His response is terse. It’s not that he’s mad at me and is going to be a dick about me calling him to come home. Mike understands that a component of fibromyalgia is chronic fatigue and that, even though I said he could stay for game night, the day has become too much and I need his help. But it still doesn’t suck any less for him or make me feel any less guilty when I have to pull the rug out from under his feet.

Text to R:I’m sorry. I’m have to cancel today. Zoë was up half the night.

Text to J:I’m sorry, but I physically can’t keep my eyes open today. Mike is going to bring Rachael instead.

It seems that I’m always breaking promises and letting people down because of this damned chronic illness. I’ve learned to compensate by under-committing and making “hopeful” plans. I almost never promise my children anything anymore, just so I don’t have to break their hearts along with my promise. Language like, “We’ll try,” or “We’ll do our best,” has also become part of Mike’s vocabulary. He, too, knows better than to assume our plans won’t fall through at the last minute.

I hate breaking promises. I hate that, compared with my old self, I have become an unreliable, under-productive woman. Fibromyalgia recklessly rampages, unplanned and unannounced, not caring who is caught in its wake. I know that, for others, it must be difficult to separate fibromyalgia from me. I sometimes still have trouble making the distinction. But it’s not me who is letting everyone down; it’s the fibro.

I’m sure it may be difficult to understand that I can’t always manage my own illness. Surely, if I know flares are possible, I should be able to plan accordingly so I won’t have to break any promises.
That’s only partially true.
I know I need to plan on being wiped out for a week or two after a trip. I believe it took me 3 weeks just to recover from Christmas. I generally avoid planning more than one thing in a day. For instance, my trip to the dentist on Monday left me feeling as though I’d run a marathon, minus the shitting myself component. I avoid making plans with anyone after 5 pm. My body is generally done, physically and cognitively, by then. I even tend not to let my kids in on plans until they’re about to happen. Given the nature of this beast, it makes no sense to plan for a friend to come play after school ahead of time, as I’m usually useless by 3 pm.

Still, even with all this planning and compensation, I can be suddenly attacked with flares. Sometimes I can explain them, e.g. weather events. Sometimes I’m waylaid and left thinking, What the actual fuck? Where’d this come from? These flares are not simple mind over matter moments. I can’t overcome them by simply refusing to be a pussy and soldiering on. All I can do is take care of myself and let it run its course. And part of taking care of myself sometimes includes breaking promises.

Part of what prompted me to write this today is that Rachael and I have plans to go see Into the Woods today. Because of all the weather systems coming through, I’ve been in horrible pain this week. I feel like I’ve been walking on broken feet. My back and shoulders are compressed in a vice. And this morning I woke up feeling like my neck had been in a knife fight. The thought of holding my neck to watch a movie for 2 hours sounds like torture. But I took as many drugs as I safely could and hoped the pain would subside by movie time, because I’ll be damned if I’m breaking another promise to my little girl.

Spiced fudge

I know posts have been sparse lately. Preparation for the holidays, recovery from the holidays, and the simple fact that it’s winter have made it hard for me to give two shits about the blog. I feel like I’ve been in a constant fight to stay awake for the last few weeks. My brain has also been extremely foggy, making it virtually impossible to make good words for those things that put good words together for the looking at words by the people. But I’m sitting on something that makes my body like an L and those pointy things on my hands are touching those squiggly things that make words. And I can’t close my eyes for sleepybys because I have to go see the lady who will fix the seeing part on my face because something is stuck and it gives me the ouchies. So let’s talk about yummy chocolate squares I make during the cold time, when people put up green, pointy triangles and blinky, shiny things.

(No, my fog isn’t that bad. But I did have a meltdown because I couldn’t remember what to call gelato bowls. So that was fun.)

Cookie-making is a big deal in my family. It was a fun tradition my siblings and I had with my mom every Christmas, and it’s a tradition I’m passing on to my girls. I feel horribly that I didn’t manage to make as many Christmas cookies as I normally do. I still have all the ingredients. Peanut butter kiss cookies in May? Why not?
One of the desserts I did manage to make was fudge from the recipe my mom gave me. It makes a lot of fudge, it’s edible straight out of the freezer, (and sometimes is even better that way) and it’s perfect for a nice, homemade Christmas gift for someone. A couple of years ago, I decided I wanted to give the fudge some more dimension. I took my cue from the ancient Mayans and added spices, specifically cinnamon and cayenne. It gives the fudge a nice kick and dials down the sweetness so you don’t immediately go into a sugar coma. I put in the amount of spice that makes me happy, but you may certainly adjust the recipe to suit your taste.

Spiced Fantasy Fudge
3 cups sugar
3/4 cup butter, softened and cut into chunks
2/3 cup (5 1/3 oz) evaporated milk
1 12 oz pkg milk chocolate chips
7 oz marshmallow creme
1 tsp vanilla
1/4 tsp cinnamon
Pinch of cayenne pepper

Combine sugar, butter, and evaporated milk in a 2 1/2 qrt heavy saucepan. Bring to a rolling boil, stirring constantly. Lower heat to medium and continue to boil, stirring constantly, for approximately 5 minutes or until a candy thermometer reaches 234 degrees. Remove from heat. Stir in chocolate chips until melted. Pour into a large bowl and add the marshmallow creme, vanilla, and spices. Beat the mixture until well-blended. Pour the mixture into a 13×9″ pan/dish. Cool at room temperature.

Once set, (it will take a few hours to overnight) slice into cubes. For less mess, easier slicing, and better structural integrity, freeze before slicing. Fudge is best stored in a zip top bag in the fridge or the freezer.

What’s a girl gotta do?

I really wish that, if my body is going to fuck me over, it would have the courtesy to at least buy me a drink first. It doesn’t have to be special. Just buy me a Sidecar and feign interest. You know, just a little, “Really? Me too! Wow, we have so much in common!” And hey, I won’t even want it to stay the night or call me later.

Just a drink, and then leave me the fuck alone.

A Spoonie Does Disney: Part 5

This is the final part of a 5 part series about my experience, as a spoonie, vacationing at Disney World. Here are parts 1, 2, 3, and 4.

I discovered that my love for roller coasters has become tainted. I’ve never been one for the fucking insane most adventurous rides, but I do love a good zero to OMGWHEEEEEEE! with the upside downs and sharp banking. So it was disheartening to find that I was really going to have to suck it up and take some real pain if I wanted to ride the coasters at Disney. (And the ones I rode at Universal Studios at the conference block party. Consider wearing body armor if you’re going on Transformers or the Minion rides.)

The first coaster we rode was the Aerosmith RocknRoll coaster. First of all, holy crap on a cracker, y’all! I think that coaster would have been rough, even without the fibro. It was pitch black for the first 10+ seconds of the ride. I made my throat sore, screaming for my life during that coaster. It ended up being fun, but holy shit was it rough on my neck. The same is true of Star Tours, Everest, and Space Mountain. All a lot of fun, but are murder on the neck and back. The new Seven Dwarfs Mine Cart coaster was fun and much easier on the neck. It didn’t leave much room for my legs, which made for a lot of pain around the curves, as my legs and knees mashed into the lap bar.

Ultimately I would have been sad if I had let my fibro be in charge and hadn’t gone on any of these rides, but the price is pretty steep. I said “shit” and “fucking ow” as much as I laughed and said “whoo”. Drug up in advance, people!

Line up, everybody!
After my experience of standing in line for Soarin’, I wanted nothing to do with standing in any line for very long. If we couldn’t fast pass something, or the wait was longer than 30 minutes, we just didn’t do it. We did a fast pass for the Aerosmith coaster, so not a big deal. We hit a big snag in our plan when we arrived at Everest at Animal Kingdom. No fast passes were available, and waiting in line was going to be almost an hour. But then, an awesome cast member at the fast pass kiosk told us about the single rider line. It’s one of the few rides in Disney where you can get in a separate line if you’re planning to ride by yourself. You become a seat filler with the odd numbered parties who all want to go together. Mike and I ended up on the same coaster, just different cars, and only waiting about 10 minutes! I’ll be honest, when we started going backwards in the dark, I wish I had had Mike’s freckled arm to squeeze until his arm would break. But overall, it was really fun and we were able to cross that coaster off our list.

At the new 7 Dwarfs Mine coaster, waiting in line for an hour was just fine because I had my wheelchair by then and the line was wheelchair accessible. But, as is the case with many older buildings and walkways, Space Mountain’s regular stand-by line is not wheelchair accessible. So a cast member directed us to the fast pass line to get a return time, as the new fast pass line is wheelchair accessible. I think they wrote the time down wrong. Rather than an hour wait, we only waited 15 minutes. Make sure that whomever is pushing you up and down the steep angles the fast pass line takes is in peak physical condition. Mike was a trooper, hoofing it up those inclines and preventing me from become the physical comedy trope of a person in a runaway wheelchair on the downward slopes. At one point, the rubber grip on one of the handles came off while going downhill, which made things interesting. After we managed to avoid fiery collision, Mike parked me and went back up the line to find it. It’s terribly awkward to be sitting by oneself next to a line of other people. I should have started quacking to emphasize my current state and make everyone feel better.

After our arduous journey over hill and dale for many a fortnight, depleting our skeins of Tang and supply of freeze-dried lembas bread and limbs quivering from all that they had to endure, we finally reached a place of rest on the Mountain of Space. There we found rest from the kind mountain villagers, who prepared us for the next phase of our fantastical journey. We hobbled toward the space pod, which would carry us to our destination, only to find our path blocked. Downcast though we were, we found comfort in the continued care of the villagers. The town crier regularly took to the village main square to announce how the work to clear our way goeth. As I rested in my transport, I felt the growing unrest from a faction of villagers. I worried that their dismay would turn toward me. After all, had I not walked from my transport to the space pod? Had we not taken our place in line before those who had waited what seemed like lifetimes? But we stayed the course, stalwart and sure, for the road had been hard and our journey far.
But what to my great joy when the town crier sent forth word that the way was open and our journey into the stars was to recommence! Into our pods we settled; such great anticipation leaving all aquiver. We began, and the wind blew my hair. I felt the chill of dark space fill my nostrils and promise thrills beyond imagination.

Wikimedia Commons

Suddenly, cool, blue light flooded the sky. We were enveloped in the beacon that was foretold, the beacon that would let all who passed know that their hard work could be put to rest. It was time for the prize for which we had waited so long.

And then we zoomed around in the dark. It fucking hurt, but damn it was fun.

A Spoonie Does Disney: Part 4

This is part 4 of a really long blog post, that’s been broken up, about my experience at Disney World as a spoonie. In case you missed them, here are Part 1, Part 2, and Part 3.

Walkin’ and a Wheelin’
I knew there was a strong possibility that I would need a wheelchair at some point during my stay, but I really wanted to avoid it, if possible.
It was probably just pride and not wanting people to stare at me. And they will. Let’s just clear that up right now. I also felt like I would be an imposter. Certainly there are people who really need a wheelchair. I just needed one because my feet and legs hurt. When we went to Animal Kingdom I concocted a theory that, biologically and at our core, we are all animals. In the wild, if an animal is hurt and dying, they are often left by themselves with Arnold the Ape saying to everyone else, Sucks to be that dude. Or, it’s the signal for other animals to attack. Easy prey. So that’s part of the reason why we don’t want to be seen as weak or injured in, say, a wheelchair. It’s a primal fear. I think my theory is genius. Mike patted me on the head.

Clearly the cleaning staff agreed with me.

I knew after our Friday night at Epcot that I was going to need a wheelchair at some point the next day. Our night at Epcot was lovely, despite the pain in my legs and feet. I was able to mitigate the pain with lots of sitting and booze. Unfortunately the night ended in tears. We stayed late for Magic Hours so we could ride Soarin’. Standing in line for 30 minutes did me in. I could ignore the pain if I was moving or off of my feet, but the feeling of hot knives stabbing the bottoms of your feet is pretty hard to ignore while standing still. And once I rode the ride, I didn’t even have the satisfaction of my waiting paying off. Seriously? Soarin’ really wasn’t any different than the experience they used to have over at Magic Kingdom, where you were surrounded by 360 degree theater screens and felt like you were moving with the screen. Really the only difference was that we hung in chairs from a gondola and had air blown in our faces. Plus, the picture wasn’t in high def and was blurry and made Mike and I queasy. Once I got off the ride, I hobbled to the bathroom, where I received the final insult: a tampon trashcan cut me. (Wouldn’t that be a great movie title? “Epcot Tampon Trashcan: The Final Insult”, starring Steven Seagall and Lucy Lawless!) You know, those silver boxes on the wall? As I sat down to pee, I snagged my pinky finger on its tetanus-y hinge. (Now I’m pretty sure I have chlamydia or something.) I burst into tears and gave in to my pain and exhaustion.

Feeling better the next day, I decided to walk Hollywood Studios, (if you’re going to walk in any park, Hollywood Studios is the place to do it, as it’s smaller than the rest) and Animal Kingdom.

By the end of Animal Kingdom, I felt sick, worn out, and wishing my legs could be disconnected from my body for awhile. We napped at the hotel and then made our way to the Magic Kingdom via bus transportation that runs through the parks and resorts. I decided a wheelchair was in order.

A quick word about transportation while in a wheelchair: Almost every time we boarded a boat or bus to get places, Disney cast members went out of their way to help and make sure I got on first. One bus driver even kicked some guys off trying to board the bus while I was getting on. Every driver, save one, that pulled up came out to ask if I needed to board their bus. But sometimes, you have to be assertive. We ended up not being able to board a bus because the driver didn’t make them wait until he pulled up to the stop and people are dicks and packed in the bus.

Mike was able to easily secure a free one through the concierge. There were also plenty of chairs and scooters available to rent within the parks. The chair was nothing special, just a worn, standard chair. If I was by myself, I was able to learn pretty quickly how to wheel myself around. I quickly discovered that a non-skinny person would need a wider chair. I fit into it just fine, but the fact that my thighs touched the metal sides quickly became a problem. The metal panels, heated from the friction of the wheels, burned the sides of my thighs. This prevented Mike from walking too quickly or required that I suck it up and endure the burn. So it may behoove you to find a chair that’s wide enough for that not to happen/ones without metal sides, rent a scooter, or bring your own chair. Mike said he’ll want to rent a scooter next time so he wouldn’t get worn out pushing me around. In most places it wasn’t a huge issue. But in places like the hills between Fantastyland and Frontierland and the fast pass lane of Space Mountain, it got a little dicey. All in all, I’m glad we had the chair. I wasn’t in nearly as much pain as the night before. The night still ended in tears, but that was because I was exhausted and scared to death by the Haunted Mansion. Because, apparently, I have the same grasp on reality as a 3 year old.

Part 5 will focus on riding the rides as someone with fibromyalgia and navigating the rides while in a wheelchair.