Monday, June 10, 2013

Maud Lewis: Artist and Juvenile Arthritis Chick

If you haven't heard of Maud Lewis, you're not alone. I've had juvenile arthritis for 20 years and not once heard the name until I picked up a book (that I thought would be very different by the way) on how the arts help people handle their illnesses called When Walls Become Doorways: Creativity and the transforming illness by Tobi Zausner.

Look at her hands :(

Maud was born in Nova Scotia and lived within a short distance of her childhood home all of her life. No one really knows exactly when the onset of her disease was, but it had to have occurred sometime between age 4 and 10 just based on photographs of her as a child. Due to bullying about her deformities caused by JIA, she stopped going to school and began to help her mother with illustrations for her greeting card business. Unfortunately, the bullying and prejudice didn't stop then - her deformities continued to worsen her entire life and she was constantly teased. She eventually married and continued to sell greeting cards. Eventually her JIA-related issues got so bad she had to stop leaving the house, but she always kept painting.

The book points out something that I think needs clarification. One paragraph on her issues dealing with other people ends with:

"When a child isolates herself, as Maud Lewis did, it may not indicate that she wants to be alone but that she needs to be alone because social interactions are too painful" (212).

I certainly agree having lived much of my life like this, but the way this is phrased makes me feel like the blame is somehow on Maud. I dunno, maybe I just read into things oddly, but it does. I want to just say that if you are being bullied or abused, the blame is ALWAYS on the person abusing and bullying and not ever on the victim.

That being said, come check out some of her art!

I can't even fathom how painful it must have been to continue making art with the deformities Maud had in her hands, but she kept going. I wish I had known about her a long long time ago.

Friday, June 7, 2013

An update on my medications, or why I'm breaking up with my primary care doc

I haven't done my Enbrel shot for like a month and I hate that.

Oh come on now, it's not like this was my plan.

Earlier in the year, I developed a mucocele just to the right of the middle of my palate. I was nervous and thought I should see the dentist but clearly did not. At the beginning of May, the mucocele was still there and I developed a cyst above my upper right canine along the gum line but also so big it was up next to my nose. When it didn't go away after a week-ish and actually was beginning to swell to the point that it was impeding my work, talking, and drinking alcohol at trivia, I decided to make an appointment with my primary care doctor. I had held enbrel already hoping for this to go away and I probably should've gone to the dentist in the first place, but I never thought I'd experience what I have in the last month.

He feels my face for differences between the right and left side and apparently feels nothing. He sits back and WHILE LAUGHING says "I think it's just a pimple." I then go into explaining that I'm 25 and I've had my share of pimples but this isn't a pimple. I explain that it is affecting my job, how moving those facial muscles at all is incredibly painful. I invite him to mash my face again. He goes to town, mashing incredibly hard and even my left side is in pain and by the time he's done he says, "Well, it clearly doesn't hurt that bad because you're not reacting."

Okay, by this point I'm pretty pissed and I figure he's already laughed at me so all bets are off the table really but I'll still be civil. My laughing along with the comment, "Well, you're talking to a chronic pain patient who pretty regularly sees 8s and 9s on the pain scale so that doesn't hold as much weight as you think it does," is met with no response. I would've offered to have him look in my mouth but it's pretty obvious he thinks I am an idiot. He moves on, reassures me that it is a pimple and I'll feel better when it comes to a head, tells me to take my enbrel, and gives me a week-long script for an antibiotic - which he is only giving because I protested because he warns me AGAINST taking since I had C-diff last year.

I walk out pissed beyond belief that I can't even fathom what has just happened. He's always been a bit off and seemed to dismiss a lot of what I have gone through or am going through when he sees me. While I had C-diff, he gave me ten oxycodone pills because I basically broke down in his office since I had to hold enbrel and my normal meds were not going well because of the infection - and that's after he prescribed me something I was allergic to at first, necessitating me driving all the way back over town to pick up the script.

I make it to the car and it takes all my resolve to open the door and get in the car instead of going back in and going off on him. I sit, unable to bring myself to start the car, and just sob uncontrollably. I don't even know what to do. I drive home, continuing to sob, and manage to stop enough to get into the apartment before going off again.

One of the worst things that happens with these diseases is when you aren't believed - that goes double for family members and doctors. My primary care doctor thinks I'm a hypochondriac, a young girl who knows nothing about her own body or medicine. I would've expected something like that out of someone much older than the 30- or 40-something man that barely sees me.

I hold my enbrel, despite the incredible amounts of pain I stumble upon in the almost two weeks until I see a medical professional again - but this time it is my scheduled visit with my rheumy's NP who is the sweetest, most caring person I've ever met. I know that, whatever I have going on with me, she'll know what to do.

My appointments with her are always pleasant, no matter how much I hurt, and I always look forward to them. We sit there, like a couple of River Song clones with our big fabulous hair, and discuss my wedding plans, seeing Wicked, and how I think I'm doing right now compared to last year when I started enbrel. I talk about running and about my fitness regimen that I keep up myself now without PT. She's so happy. I fully intend on mentioning what has gone on, but I wanted so much to have an appointment with her that wasn't full of problems.

"So, no more infections?"


I go into the whole thing - what makes this worse and how nothing seems to make it better, and that I've been off antibiotics for almost a week. She finally looks inside my mouth to find my lovely sac o' pus. We discuss my financial state and how without the enbrel I feel terrible - my right shoulder has just started going off, a great sign of a flare for me that only gets worse. I am to update her in a week and if this thing isn't gone go to a dentist asap. She goes into some more detail on how bad abscesses can be and what they will do to my ability to take DMARDs for, oh, a few months if left alone to fester - or worse. Did you know abscesses can kill??? She leaves me with a hug and reassurance that I did the right thing, along with the name of the primary care doc who she and her husband both see so I can make the switch.

"Hold the enbrel until all signs of infection are gone" are not words a girl in a flare - Kathy noticed the puffy joints - want to hear.

All week I am in agony and freaking out. The right side of my face is killing me with itching, and my arms are trying to finish the job. I have essentially had my arms more or less frozen at my sides, in typing mode. I have to wear my regular bra because even thinking about the sports bras hurts to high heaven. I have a terrible time getting dressed and doing my job. When it isn't busy, I cry while reading pretending that book is the reason. This pain won't stop and I can't take it anymore.

June 6th arrives with only minimal lessening in this sac that I can't seem to stop playing with. I'm scared to death I'm going to pop it and melt or something. I make a call in the morning to the dentist office I love but haven't been to in almost two years due to low funds. I set up an appointment for the 7th.

Judgment day arrived today. I've known from the beginning that this was an abscess and that I would either be missing a tooth or get a root canal. I knew it and I've known that was what I should do all along, but of course I didn't. I'm there 5 minutes and the x-ray confirms what I've thought for a month, but didn't follow up on because my GP made me feel like shit about myself.

Turns out, my dentists had a cancellation right after my appointment and could do the root canal right away and since I now have dental insurance I owe less than $500. In an hour and a half, my root canal was done and the most painful part was numbing up my gums. I feel fine, mouth wise now. The rest of the infection should be cleared up within a week - if it's not I get to call for more antibiotics. So best case scenario I'll be away from enbrel 6 weeks total - worst 7 or 8.

I plan on writing a note to my current GP about the situation and my distaste for his wanton disregard for my safety, knowledge, and experience. I just don't know what to say exactly - "Thanks fucker, you were wrong and go fuck yourself!" seems a bit much.

This all just goes to show that we know our bodies much more than others do. When we know something is wrong, we're generally right. Don't silence that little voice in the back of your head, because it could end up saving your life.

Wednesday, June 5, 2013

Book Review: Stop Being Your Symptoms and Start Being Yourself

So I picked up a self-help book on how to stop being so sick. I never do that, but I figured what the hell. Plus this wasn't one of those "the cures to arthritis the pharmaceutical companies don't want you to know" types, but one about how to focus less on your illness and actually *GASP* live life. I'm not sure what I expected. This book didn't really hold that much advice for me, but maybe that is because I already do so many of these things on my own. I also found myself wanting to punch these people in the baby maker.

The book begins by talking about things wrong in medicine today like distrust of doctors and malpractice suits being so commonplace and the like. I think this places an awful lot of blame on the patients though, saying that they need to be more trusting and patient. While that can be true, a lot of us would never have been correctly diagnosed with our illnesses had we all been ideal patients following our white coat wearing knights.

One of the things that is easiest for those of us with chronic illnesses to do is to overly focus on pains in certain spots. Apparently that makes them worse according to these docs, but I don't think that's necessarily true. But maybe I'm not being trusting enough again. Nonetheless, one of the coping mechanisms they suggest is to be aware of the sensations in your body - every single one. Recognize them then move on to the next hot spot. By really focusing on these spots, you may be able to realize that issues you think are related to your illness are things your body just goes through. My question here is how the fuck you're supposed to do this when you're already sick?

To their credit, Barsky and Deans do suggest learning relaxation meditations and how to recognize thoughts and feelings and let them go. These are both definitely habits that we all should develop, no matter our religious preferences. It is very calming to be able to recognize negative thoughts and acknowledge them but not internalize and take them on. You can then really work on creating positive thoughts to combat the negative, which is very hard but eventually works for many people. I actually find myself kind of attractive now, but that's after a few years working at this so who knows what you might experience.

They think that patients allow their illnesses to run their lives - and we're talking about illnesses like MS and RA that they specifically mention in this book. I'm sorry, but believing that we choose to miss events and opt out of activities because we're overwhelmed mentally by our bodies instead of dealing with the fucking physical issues associated with these diseases - that can be fatal, thanks - I just can't even really respond to this. Depression can and does accompany chronic illnesses for many, but that doesn't mean that I missed my niece's blessing because of depression - I miss it because of a double fucking flare of both my Still's and my fibro. There's not really any choice for me there, and if there had been I would've been there.

They suggest making more plans and doing more things you normally would have been doing and that will somehow cheer you up. Excuse the balls out of me, but it doesn't just happen like that. You can't cheer up a fibro patient out of a flare. Laughing and attempting to go to lunch with friends doesn't make it happen. Going out and buying a new shade of lipstick does not, like some activists apparently feel, make you feel better. You get home exhausted and pay for it when you're already not doing well.

I will leave you with a quote that I think illustrates why I made a mistake in picking up this book, and why maybe I wouldn't suggest it to anyone:

Pain that we believe can be assuaged, that we think is unnecessary, and that we feel we shouldn't have to bear hurts more than pain we know is unavoidable. "Curable pain is unbearable pain," as Ivan Illich has pointed out. Pain and discomfort are most excruciating just when the relief we have been expecting has failed to materialize. The pain of your fractured ankle becomes agonizing after you've swallowed a pain pill but it hasn't take effect yet. Something similar happens with chronic illness: if you believe your infirmity is treatable and that the symptoms are therefore avoidable and unnecessary, they seem more burdensome and more severe. Curable pain seems to be unbearable pain. Once you believe your arthritic hands shouldn't hurt as much as they do - that relief would be forthcoming if only you got the latest breakthrough treatment or found just the right specialist - then the aching and stiffness become intolerable. (209)

I don't know about you, but my pain is real and it is just. It isn't dependent on meds - trust me, I paid attention while reading this book and shortly after. My pain is because my body fucking sucks, not because my brain makes it worse.

There are so many times I want to slap authors. Today is no different.

Saturday, June 1, 2013

The 729.1 on fibromyalgia and my link to Morgan Freeman

Morgan Freeman. Just saying the man's name elicits his amazing voice. I could listen to him talk for probably days without getting tired.

Well, no, I'd be terribly tired and would've fallen asleep on him but there is a huge likelihood he would fall asleep too and it's not because he's old.

Morgan Freeman, one of the most celebrated and iconic celebrities of our time, lives with fibromyalgia:

Every so often he grabs his left shoulder and winces. It hurts when he walks, when he sits still, when he rises from his couch, and when he missteps in a damp meadow. More than hurts. It seems a kind of agony, though he never mentions it. There are times when he cannot help but show this, the fallout from a car accident four years ago, in which the car he was driving flipped and rolled, leaving Freeman and a friend to be pulled from the car using the Jaws of Life. Despite surgery to repair nerve damage, he was stuck with a useless left hand. It is stiffly gripped by a compression glove most of the time to ensure that blood doesn't pool there. It is a clamp, his pain, an icy shot up a relatively useless limb. He doesn't like to show it, but there are times when he cannot help but lose himself to a world-ending grimace. It's such a large gesture, so outside the general demeanor of the man, that it feels as if he's acting. 
"It's the fibromyalgia," he says when asked. "Up and down the arm. That's where it gets so bad. Excruciating." 
This means Morgan Freeman can't pilot jets the way he used to, a hobby he took up at sixty-five. He can no longer sail as well. There was a time when he would sail by himself to the Caribbean and hide out for two, three weeks at a time. "It was complete isolation," he says. "It was the best way for me to find quiet, how I found time to read." No more. He can't trust himself on one arm. He can't drive, not a stick anyway, not the way he used to — which is to say fast, wide open, dedicated to what the car can do. And he can't ride horses as much, though once he rode every day. 
He never mentions any of it as a loss, though how could it be anything else? He never hints around about the unfairness of it. "There is a point to changes like these. I have to move on to other things, to other conceptions of myself. I play golf. I still work. And I can be pretty happy just walking the land." 
Wait. How can he play golf with a clipped wing like that? How can you swing a club when you can't lift one of your arms? 
"I play one-handed," he tells me. "I swing with my right arm." 
How does that work out for you? 
"See for yourself," he says. "I'm playing at 3:00 today."

729.1 is the diagnostic code in medicine for myalgia and mytositis. That means that Morgan Freeman and I share this terrible number on our medical charts, on medications, and on any referrals we may have to other specialists.

Many people with chronic illnesses like me end up with fibro. However, it can also start after a traumatic event or accident as it did for Morgan. His case is interesting not only because of his fame, but because fibro is an illness that affect women much more than men.

For those lucky enough to not be involved with fibro, I'll help ya out here. It gives fatigue, memory, mood and sleep issues just like most autoimmune disorders (the jury is still out on whether or not fibro is autoimmune). Fibro is believed to be caused by a malfunction in how the brain reads pain, which allows nerves to become hypersensitive causing the extra pain. In reality though, the jury is still out on that too.

Fibro isn't really one of those drugs that has a specific test, even though it kind of does. Confused yet? Let me help out here. There was recently some sort of blood test developed but it really isn't that helpful if you're already ill due to the fact that it measures cytokenes. The long standing test is a trigger point test, where parts of the body are pushed on to see if the pressure creates extra pain or if those areas are, you guessed it, tender.

One of the good things about fibro is that there are medications, such as Lyrica and gabapentin, that work to help control the excessive nerve pain. The bad news is these make you drowsy-ish so already having fatigue issues makes it a fun adventure! For me personally, Lyrica has a more waking effect but that's not how it is for everyone. Another good thing? Having fibro doesn't make it more likely you get x disease and doesn't really have complications (that we know of) other than the usual things that happen when you're in terrible pain and can't live your life the same way anymore like literally becoming dumber.

While fibro is generally recognized as a disease, there are some (asshole) doctors who don't believe it exists and will maintain that your pain is all in your head. If you get one of these docs, RUN FOR THE HILLS!!! Their ignorance of this condition will affect you and add mental stress to a body already unable to physically handle emotions well. It can actually hurt you physically if you continue to let people treat you like that, so either stand up for yourself or GTFO.

I love that for Morgan it is just a fact for him. In the interview cited above, clearly he has a loss of abilities and has had to change how he does things because of this. But he isn't bitter about it - he handles it with the same grace and composure as he handles everything.

I grew up watching Morgan in reruns of The Electric Company and in movies. I've always like him - his attitude and his demeanor. I do have to say, as I read the article about his pain I cried. About the same time that the article came out last year, I figured out I had fibro but it wasn't diagnosed until the following September. I'm used to actors wanting to keep their health private, meaning that some of the best spokespeople about diseases like RA and Lupus turn into people who don't speak out on the issues we all face. While Morgan isn't jumping around and trying to do Lyrica commercials, he certainly doesn't deny what he faces with this disease. And that makes him a damn good role model in my eyes.