Invisible illnesses in search of legitimacy

20140430-083749.jpg

You sit in a small exam room, waiting. The air is stale and you notice how thin the walls are as you overhear the appointment next door. It’s not entirely comfortable sitting on the exam table, but you sit there and read the policy on HIV testing and try to pronounce sphygmomanometer for the tenth time. Suddenly, there’s a quick rap at the door and a doctor bursts into the room. Tapping away at his laptop, he asks you what happened. You explain how you broke your arm. He looks it over, types some more, and then tells you that your arm isn’t broken. In fact, you only think it’s broken because someone punched you in the arm when you were a kid.

Record scratch

Sounds pretty absurd, doesn’t it. Yet, this is exactly what happened when a young man called into the popular radio show, Loveline, recently. The young man was calling about his fiancé, who experiences pain because of endometriosis and interstitial cystitis. Rather than assist this man in his question, Dr. Drew Pinsky proceeded to assume he knew all and simply dismissed this woman’s pain and diagnoses. He basically called her a hypochondriac who wanted attention and was most likely sexually abused.

These are what we call sort of functional disorders. Everything you mentioned, everything you mentioned, are things that actually aren’t discernibly pathological. They’re sort of — they’re what we call ‘garbage bag disorders,’ when you can’t think of anything else, you go ‘eh, well it’s that.’ So it then makes me question why is she so somatically preoccupied that she’s visiting doctors all the time with pains and urinary symptoms and pelvic symptoms, and then that makes me wonder, was she sexually abused growing up?

No, I think he’s kinda like Dr. Pepper.

Besides the obvious, What the actual fuck?, let’s break down why what Dr. Drew said is so harmful.

1) It trivializes and delegitimizes invisible illnesses.
It took almost six years before I received a diagnosis of fibromyalgia. In my experience, I learned just how arrogant doctors really are. If they can’t quantify it with an MRI, blood test, or observation, then it can’t possibly be real. Dr. Drew’s comments reflect this attitude within the medical community. This attitude prevents those with invisible illnesses from receiving appropriate and timely medical care.
It would not only prevent the doctors from providing the care, but could inhibit those with these illnesses from seeking treatment. I’ve spoken before about how a neurologist yelled at me when I was disappointed that he couldn’t figure out what was wrong with me. That experience was the final straw and caused me to discontinue seeking help for the pain I was experiencing.
It also perpetuates a lack of legitimacy for these illnesses throughout the population. So many take a doctor’s, (and celebrities’) word as gospel truth. If a doctor says that there isn’t any such thing as fibromyalgia or chronic fatigue or interstitial cystitis, then it must be true and it’s all in your head. Such attitudes from the people we encounter on a daily basis cause those of us with invisible illnesses to withdraw and keep hidden the pain that plagues us. Silence and misinformation feed stigma and negative attitudes.

2) It trivializes mental illness.
People like Jennifer Marshall work tirelessly to combat the stigma of mental illness. It is because the stigma is so pervasive and virulent. When people like Dr. Drew lazily ascribe a person’s experience to mental illness, the weight and legitimacy of mental illness is lost. As people become armchair psychologists, any and all negative feelings and experiences become diagnosable psychological problems. Mental illness suddenly becomes something that people simply need to get over, lending itself to a Barney Stinson sort of attitude.

20140430-094343.jpg

Again, misinformation about what is truly means to have a mental illness leads to negative attitudes and stigma.

3) It trivializes sexual abuse.
Too many people are the victims of sexual assault and abuse. It is not something one should take lightly, nor bandy about as the source of all things wrong in someone’s life. To take someone’s experience and twist it to fit the story they’d like to tell is nothing less than victimizing the victim all over again. In this scenario, Dr. Drew downplays the horrors of sexual abuse by treating it as some sort of virus one catches which causes problems later, rather than something that is done to you. Problems with your vagina? Well, you must have caught sexual abuse. It is insulting that Dr. Drew presumes to know better than this woman and her fiancé about her unique experience.

So, let’s summarize what Dr. Drew said.
You have a problem with your lady bits? Well, I don’t believe that those are real problems, so you must have caught sexual abuse. I know this because you are exhibiting symptoms of sexually transmitted crazy person. Take this diagnosis and get over yourself.

Such ignorance should not send those of us with invisible illnesses and experiences to the shadows to remain invisible ourselves. It should make us angry. It should compel us to speak out and educate those around us about our experiences. Refuse to be bullied into silence or feeling like we don’t know our own bodies. If enough of us push back, perhaps people like Dr. Drew will be cured of their inflated ego. Although, I have heard of a medical procedure in which it is possible to transplant some of that ego from their head to far up inside of their ass.

In which Zoë is an evil monster and destroys ballet forever

20140425-115857.jpg
Deviant Art

Today, after centuries of existence, Zoë destroyed the art that is ballet. As the gaggle of eager ballerinas gathered around their teacher, Zoë carried out her devious plan. As the girls performed their butterfly stretches, Zoë struck. Her wings spread, wide and menacing, wrapping the room in her darkness. She moved quickly, plundering the joy of the day and replacing it in their hearts with pure horror. The teacher did her best to protect the young ones from this foul beast, shielding them with her own body. But it was no use. No one was any match for this deviant creature who desired nothing but souls and blood and entropy. This machination, this evil intrigue, took us all. And we perished as the light went out and the last feather fell.

Yeah, okay, so this is seriously what happened. Zoë had her first ballet class a few weeks ago. After that, the teacher got sick and cancelled class, and then there was no class because of spring break. So today was Zoë’s second official ballet class. In the first class, she was fighting a cold and hadn’t eaten well. So, naturally, she had a hard time staying on task for the full 45 minutes. The teacher basically asked Mike to take her out for the rest of that session.
Today I explained to Zoë that if she didn’t want to leave class early again, she would need to stay with the class and listen to the teacher. Zoë still remembered having to leave early in the last class and didn’t want that to happen again. Unfortunately, all bets were off within the first few minutes. During stretches, Zoë would flop or roll over during leg stretches. Finally, she just got up and took to running around the room. (By the way, I’ve officially declared mirrored walls to be the natural mortal enemy of 3 year olds.) Because of the way the room and the vestibule outside the room are configured, I didn’t see what happened next, but it was bad enough that the teacher came to get me to deal with Zoë. Through her thick accent and heavily applied perfume, she admonished me to make Zoë listen to her. She bemoaned the fact that Zoë had knocked down the pile of the teacher’s coloring sheets. (They were situated on a floor punching bag. I didn’t see if Zoë purposefully knocked them over, or if it happened on accident while trying to look at them or maybe while she tried to climb on the base of the punching bag.) I apologized, hoping to express my humility and embarrassment, and picked up the sheets. The teacher continued to berate me about Zoë’s behavior and that I needed to talk to her and make her listen to the teacher. At that point I had already apologized and was about to take Zoë aside and talk to her. Annoyed with the level of drama, I pointed out that Zoë is 3. The teacher simply doubled down and snottily told me that all the girls in there were 3.

Don’t get me wrong. The sun, in no way, shines out my child’s butt. I KNOW she can be a handful with her seemingly endless supply of energy. But seriously, what do you expect from a group of 3 year olds? Constant attention and perfection, especially when you’re not really making it fun, isn’t going to happen. Most of the other girls did well, (except for one who had a complete meltdown) but they had also been in structured classes like that before. This was not their first dance class.

So, I did the best I could. I pulled Zoë aside and told her if she didn’t listen to the teacher, we would have to leave and wouldn’t be coming back. I sent her back to the the group with fingers crossed. And, as you would expect, she wasn’t perfect. She made silly faces in the mirror. She tried to climb the mirror with the assistance of the balance bar. When her leg couldn’t physically reach the balance bar, (which all the girls had trouble doing) she flopped down and pouted. But at least she wasn’t disrupting the class. Eh, I guess that’s not totally true. She did disrupt the class for a few seconds when she tried to give her sashay partner a hug. She did try to edge away from the group a few times, but the moment I began to step inside the room she cried No no no! and ran back and paid attention. The rest of the time was fun and she tried. She is definitely not nearly as well-coordinated as the other girls when it comes to skipping, leaping, and tumbling, but she was trying to do what was asked of her.

I guess we’ll try again next week and see what happens. I won’t force something that isn’t a good fit, but I also don’t want to give up right away. She’ll never learn to be in a structured class like that if she isn’t in a structured class like that. If it doesn’t work out, I could always take her to Rachael’s old ballet studio. At least there, the kids learned things while having fun and the teacher knew that ballet for three year olds is really not that serious.

A thrimple is just about right

20140422-140940.jpg
Thinkstock images

I haven’t been blogging too much lately. I’m in a pretty negative place, overall, right now. Right now, I can’t see past the darkness of my depression and the crushing pain of my fibromyalgia. Because of this, I haven’t felt like blogging. It’s hard to find something you want to share when you feel joyless and detached. I almost get angry when we have beautiful spring days like yesterday, but I’m too fatigued and in pain to be able to go out and enjoy them. I say “almost” because I feel like I should be angry, but I can’t work up enough of the energy I need to care that much. Also, I haven’t wanted all my blog posts to be whiny and negative. I want to write about it a little bit today, though. I feel like, if I don’t, I’ll be all Elsa with a “swirling storm inside.” And then I’ll set off an eternal winter, which will just end up leaving me trying to find snow boots in April that fit the girls.

So, Julie, whaaaaaat’s happening?
This past weekend was nice, in that our family traveled to Yorktown for the baptism of our goddaughter, Rosalyn.

20140422-142301.jpg
The godparents.

It was lovely to see our friends and our other goddaughter, Elizabeth. And the excitement of the girls upon discovering that the Easter bunny had visited our hotel room was pretty magical. Rachael literally woke up and gasped.
20140422-143025.jpg
And then she pestered us all day to eat her chocolate bunny.

But the trip did take a lot out of me. I was so sore, I could hardly move yesterday. The fatigue left me feeling nauseated. I couldn’t take Rachael to the bus in the morning. I think all I really managed to do yesterday was feed myself and the girls and put Zoë down for bed. It’s always frustrating, no matter how used to it you may be, when you have a flare that bad. Fortunately, someone else was leading the Girl Scout meeting we had last night, otherwise I don’t know what I would have done.

I’m also feeling pretty discouraged about my weight. I know my medication got me to this place, but eating bags of jelly beans and other junk as comfort is certainly not my medication’s fault. I’ve been able to lose weight before, but now I have no idea what to do because I can’t exercise like I used to. I was finally able to sign up for a gentle yoga class that was at a reasonable time, but it was canceled for lack of interest.
The bonus feature of this low body self-esteem is having acne worse than I did when I was a teenager. I mean, Sunday morning, I woke up with a thrimple! That is, a throat pimple. Seriously. Dead center, right over my esophagus. If that isn’t the universe saying Fuck you!, I don’t know what is.
20140422-144135.jpg
Real no makeup selfies. I KNOW! The resemblance is astonishing! So glad that Gwynnie is also keeping it real!

I went for a follow-up with my rheumatologist today. She had me re-test my thyroid, since my T4 had been at the lowest end of normal at the last visit. Today had the same results. T3 and TSH normal, with T4 being as low as possible while still within normal limits. She’s going to have me try the lowest dosage of thyroid medication to see if it helps, as she feels I’m headed toward hypothyroidism anyway. At the end of the appointment, she told me to cheer up. In that moment, I wanted to smack the caked-on makeup off her collagen-injected face so hard. CHEER UP?!?!? If only it were that fucking easy! I would love nothing more than to feel optimistic about finding treatment that will work well enough for me to not feel like shit on a constant basis. I would love to be able to just snap out of the funk which has enveloped me. Honestly, even with all the painful hugs, swollen chest muscles, and feet which feel as though I’m walking on knives, sometimes the thing that hurts the most is the inability to cheer up.

A house divided

Even though I consider myself an introvert, for awhile, I was the most extroverted person in our home. While I enjoyed my quiet alone time, I didn’t need as much of it as Mike and Rachael. Mike would come home from a day of programming and then immediately get on his computer and ignore me. He needed to decompress. Over time, I got used to it and stopped taking his silence personally. Rachael is daddy’s girl. You know the adage, if your child is really quiet, it means they’re up to no good. Generally, not so with Rachael. We’d go to check on her, and she would be playing quietly in her room. I also got used to her preference to be alone, not feeling slighted when she would tell me that she would rather be alone.

And then, Zoë came along.

20140403-104319.jpg

Zoë embodies all things extrovert. She rarely stops talking, even if she’s immersed in a show. She makes friends wherever she goes. Just the other day, she initiated a game of peekaboo with a woman in the grocery store parking lot. She has no trouble walking up to someone and introducing herself and whoever is with her. And the attention. She requires so much attention. If she doesn’t have it, it’s the end of the world. The center of attention is her home base. Good luck to you if you want to take a crap in peace. If she can’t be in there with you because you’ve locked the door, she will simply stand outside, knock, and sing Do You Want to Build a Snowman?

This has proved interesting for the rest of us. Poor Rachael has to lock herself in her room just so she can get Zoë out of her face…literally. With our attention so divided, Mike and I are worn out and often can’t muster the energy Zoë’s attention requires. (I wonder if I could make attention horcruxes?) My own depression and fibromyalgia adds even more to the challenge. It creates a vicious cycle of wanting to be left alone because I’m exhausted and/or sore and Zoë demanding attention. The more exhausted I am, the more insanely “attention lady of the evening” Zoë is, which sends me farther into my introverted hole, which makes Zoë try even harder to secure my attention. And around and around we go until I can’t take it anymore and I end up yelling: ENOUGH! WHY CAN’T YOU JUST LEAVE ME ALONE? Zoë may sniffle for a second, and then she’s right back to jumping on you like a hyper Golden Retriever.

I don’t have any really good insights or solutions right now. I try to offer attention when I’m able and hope to have the energy to wear her out each day. I’m going to a psychiatrist in a few weeks. My hope is that she’ll be able to adjust my medication so I’ll be able to conjure enough energy and patience to satisfy her attention cravings. Preschool should also help; it will wear her out and give me a break. (Assuming I can get her potty trained.) Until then, I’ll do my best to assume the proper amount of guilt when we have days like this; she’s been kind of quiet and low energy because it seems she has a sore throat like me. And just so we’re clear, this is a low energy day.

;

How I felt about the How I Met Your Mother finale

 

20140401-113114.jpg

It’s finally over. Last night, one of my favorite shows of all time took its final bow and left the stage darkened with characters and a story that can only be described as legen…wait for it…DARY. LEGENDARY! I settled in with my box of tissues, somewhat against my will. I considered making like Robin and locking myself in Marshall and Lily’s suburban bathroom, because then, it couldn’t possibly be over. Even though the 9th and final season has been somewhat of a disaster, (and I knew it was time for it to be over) I had trust and confidence that the end of the story wouldn’t let me down.

Holy shit, was I wrong! My reaction to the finale can be best described with the following…

JULIE SMASH!

 

Spoilers and HIMYM references abound below

 

 

 

 

 

 

There were things I loved and things I hated about the finale. Ultimately, though, I was left ugly crying because I was so upset with how the series ended. (Please don’t judge me.) I think whether or not you liked the finale depended upon whether or not you were Team Ted & Robin or, Tebin. Rob-ed. Mosbatsky? SCHERMOSB! Anyway, I was never Team Schermosb. I never entirely understood why he adored her so much. Sure, as a person she’s great, but they suck as a couple. They don’t really have anything in common, a point that is made continuously throughout the series. While they’re friends, she thinks he’s a major dork. Major Dork! I almost feel like it’s cheating. Now that Robin’s had a chance to have her career and Ted has the kids she never wanted to have, they’re free to be together now. Oh, and by the way, we had to destroy Robin and Barney’s marriage and kill off Ted’s wife, Tracy, to make it happen. And now, after an appropriate number of years, Ted can plow Robin like a cornfield.

Today, I re-watched the finale so I wouldn’t be relying totally on my emotional, snot-covered memory. And I made a list.

20140401-165154.jpg

Emotional roller coaster

20140401-170858.jpg

They did it! They finally pulled their shit together and managed their happily ever after! JUST KIDDING! Within 10 minutes of basking in the glow of their reception, Barney and Robin are having marital troubles and they’re divorced. Then there’s Tracy’s death. They alluded to her illness a few episodes ago, so I wasn’t shocked when she ended up dying. However, I was completely nauseated the way the writers just glossed over her death. While I suppose it makes some amount of sense to not completely delve into it, (after all, the kids already lived that. They don’t need it rehashed) it’s not very fair to the rest of us. We never had a chance to grieve her loss and recover. And then, to suddenly pivot from, Hey, Tracy died, to You still love Robin!…how are we, as an audience, supposed to handle that? The kids are apparently so well-adjusted that they’re totally fine with their dad telling them the story about how he’s obviously still in love with Aunt Robin. Boo! I don’t buy it. I just don’t see teenagers, whose mother died in their formative years, being totally cool with their dad not only asking their permission to bang her, (I said bang bang bangitty bang) but that he’s never really stopped loving Robin. As a fan, I felt betrayed because Ted tells his parents in the 2nd season that he’s going to tell his kids the story of how he meets their mother. This was a matter of principle. Not a vehicle by which to tell his kids about some other woman.

Through the lens of the story really being about Robin, I can understand why the season finale revolved around Robin. But why the fuck did it have to revolve around Robin? We’ve invested so much time in other characters and their journeys. I felt like Marshall and Lily got the, And here are some people, treatment. We don’t even get to see their kids, nor Barney’s daughter after their initial meeting. I understand why Robin had no interest in being around her womanizing ex husband and the man she realized she should have snatched up long ago, but what about her friendship with Lily? Yes, friendships evolve. But Robin might as well have left Lily a break up letter that said, Peace out, bee-yatch!

I was also bothered by the character regressions. We spent nine years watching Barney, Ted, and Robin grow and change. And within 20 minutes, they had all completely regressed. Barney’s all, If I couldn’t make it work, without really even trying, with someone who was just as selfish as me, then being a creepy old man is my next best option. Ted went back to being a starry-eyed fool over a woman. Luckily for him, this one actually worked out. And Robin, for all the emotional progress she made, chose to refuse to deal with shit and run away from her problems. I’m not saying she shouldn’t have had a fulfilling career, but that’s not what was going on there.

I know the following may sound stupid, but it probably makes sense for someone who didn’t understand how it’s snooty of Ted to point out spelling mistakes in a menu. Continuity errors! How HOW do you get the continuity of things so wrong in your own show? Lily’s hair is long when past episodes have it short. According to the episode where the guys watch the Trilogy every three years, Ted’s supposed to have a wedding ring to go along with that baby girl in 2015. Maybe it was supposed to show how much Ted had calmed down and stopped idealizing life, but I really don’t understand how they couldn’t make it work to have Ted and Tracy married within the 7 years after they met.

Overall, I was left feeling rushed. Season 9 shouldn’t have been the weekend before Robin and Barney’s wedding. We shouldn’t have had to endure a multi-episode arc of Marshall trying to make it to Farhampton. Season 9 should have been fleshed out and given everyone’s stories more time for closure.

Now that we’ve covered the ugly, let’s look at the good.
20140401-190636.jpg
Image credit

I didn’t want the entire post about the finale to be negative. There were some things I did love. I love the call backs to inside or running jokes for the fans: high fives; grape scotch; Halloween costumes; Marshall’s puns; Jim Nantz; Robots vs. Wrestlers; the Cockamouse!
I loved Ted’s interaction with his daughter, Penny, when she was a little girl. I loved how she was a little Ted.
I liked the conversation Ted and Tracy had under the yellow umbrella where they first met, (which is where the show should have ended!)
If, in the end, it had to be Robin, I’m glad for the blue French horn. That, at least, was honest.
I was happy for the evolution that was coaxed back out of Barney with the birth of his daughter, Ellie. The scene where he meets his daughter evoked my first ugly cry of the evening. And it made me tear up again on the second watching.
20140401-191309.jpg
The feels!

The other reason I cried was that it was the end of an era. This cast would never play these characters again. This cast, who performed as Ted, Marshall, Lily, Barney, and Robin impeccably. All of my problems with the finale had to do with the writing and story decisions. But I have only good things to say about Josh Radnor, Jason Segel, Alyson Hannigan, Neil Patrick Harris, and Cobie Smulders. I actually had a chance to see the group appear on Inside the Actor’s Studio the other night. It really drove home for me just how good these actors really are. During the finale, I was struck by how emotional and raw Alyson was. NPH revealed, once again, just how versatile and evocative an actor he is with Barney, a high functioning sociopath one moment and a heart of gold that leaves you disarmed and bawling the next. The chemistry between Josh Radnor and the amazing Cristin Milioti was warm and comforting. Not once did I question that these two belonged together. While Cristin played quirky flawlessly, she was not just a female Ted. I am still haunted by the talk with her first love who had passed on, followed by a bittersweet performance of La Vie en Rose. She and Ted were two puzzle pieces, meant to interlock and complete the picture.