Category: book review

Review: The Healthcare Cure

Posted on by Grayson
This is a book review of The Healthcare Cure: How Sharing Information Can Make the System Work Better by Jeff Margolis. I was not compensated in any way for this review.
 
If you’ve ever wanted to understand how the healthcare system works, systems thinking, and more, this is a book you need to pickup. The first part of the book goes over current-state and the problems we encounter in healthcare.
It’s also a great primer on the economics of healthcare, something that people tend to pay big money to better understand.
Terms are defined so that even some of the most complicated parts of healthcare are understandable. Comparisons to the auto industry, parables, and more are made.
In chapter 5, the author goes over the perspectives of all involved in healthcare – consumers, providers, employers, brokers. One could argue that this doesn’t necessarily touch everyone in healthcare and they’d be right, but this works for the author’s purpose.
After going over key terms and explaining the current-state of the system, the author begins to talk about what he sees as the cure: Integrated Healthcare Management (IHM). One reassurance Margolis gives us that we need right now is that IHM will be achievable even if the Patient Protection and Affordable Care Act bites the dust.
IHM helps to further what we patients want – better decision-making opportunities supported by our healthcare teams, eliminating unneeded variation in our care, and making the whole system run more smoothly.
I can tell you this is what providers and administrators want, too. The system is so broken and no one is happy with it.
What is IHM?
It’s a form of healthcare that helps to promote better health and quality of care over more care in general. By helping to eliminate the silos within the system, we will be able to better participate in our own care. With the silos gone, it also helps us access our data! And, ideally for Margolis, healthcare plans would be customizable according to what we need.
I’m not sure about that last part. Sure, it would be nice for me to not have to pay for prenatal coverage knowing that I’ll probably not have kids, but what happens if I do get pregnant then? Insurance plans generally don’t let you change quickly enough to get the right coverage. Plus, frankly, I don’t mind paying for that coverage because I know it helps cover those who do utilize those services.
Really, though, IHM helps us all to focus on the same thing – value. Right now, each piece is focused on different things.
I fear, though, that with the new administration coming in, this won’t be anywhere near the focus for our healthcare system… especially because it will eliminate overhead and unneeded spending.
Some of the personal responsibility touched on in the last chapter was… unnerving, mostly because it was ableist in nature. Yes, taking responsibility for our day-to-day health and the like will lead to better healthcare outcomes, etc, but that leaves out those of us who can’t get in front of our health fun and the like.
Sure, it helps for us to take care of ourselves, too, but we have to do that to stay alive – not for better outcomes.
All in all, I found this book to be an informative look at what is currently ailing our healthcare system and a potential for a cure. Like many other purported cures, this needs much more research and tweaking.
Favorite quotes:
“Not only are we humans unable to access our medical records when needed, there is also a tremendous degree of variation in the treatment we receive, even among people with the same conditions and similar health backgrounds. Treatment of humans… is not consistently based on ‘best practices’ (the treatment that research has shown to be most effective for a particular condition given a patient’s age, overall health and family history of disease). Studies shoe that although healthcare experts have researched and documented best practices for a wide variety of medical conditions, patients often receive treatment that is different from what is proven to be most effective.” (38)
“Hoping that other people are going to solve the healthcare crisis for us, either at a national, or individual level, is not a plan.” (195)

 

Review – Chronic Christmas: Surviving the Holidays with a Chronic Illness by Lene Andersen

Posted on by Grayson
When my pal Lene asked me to review her book, Chronic Christmas: Surviving the Holidays with a Chronic Illness, I was like YES. It took me a while to get to it because I haven’t been as good at priorities lately – or, perhaps, I’ve been too good. After all, part of it was cause I was doing self-care stuff.
The whole point of Chronic Christmas can be boiled down to these great lines from the intro:
Each chapter will start out with a section dedicated to you, the reader who has a chronic illness, sharing something you can do to help yourself enjoy the season. And then there will be another section for those who’d like to help you, with some tips along the same theme (Kindle Locations 50-52).
So much of the time, items are for us OR our loved ones. There is little to no crossover which, frankly, is sad. We need more of those kinds of things that we can enjoy with our loved ones or share with them without any empathy or compassion training needed.
In addition to recommendations such as online shopping for us sick peeps, Lene weaves in ideas like our friends helping us out by going shopping with us or even for us. She even includes family recipes that look heavenly.
One of my favorite parts is where Lene talks gifts – specifically what our non-ill pals can get us for holidays. Gift certificates, subscription boxes, books, and even helping with our medical expenses make the list. We often don’t think of giving gift cards like those pre-loaded Visa cards, but I can’t help but think that those would be so much more helpful for us than our loved ones know.
I mean, I’d likely wind up buying the guinea pigs fun things, but they are a part of my life with illness, too. They aren’t as expensive as other pets, but they sure do love to eat!
In the end, what Lene gives us is a sense of hygge, or that coziness that comes with connection, love, and support. To truly do this, we must embrace how things are (or good enough) while learning to ask for and receive help.

 

Book Review: How to Live Well with Chronic Pain & Illness by Toni Bernhard

Posted on by Grayson
For Christmas, my husband’s amazing aunt got me Toni Bernhard‘s latest book How to Live Well With Chronic Pain and Illness: A Mindful Guide. I’ve enjoyed Toni’s previous books as well as her pieces on various websites like Psychology Today.

 

She has been a huge inspiration for me living with chronic illness. This book just takes the admiration I have for her further.
Courtesy of ToniBernhard.com
This book interestingly balances information for those of us who are already practicing mindfulness and those who are new to the subject, just as it balances information for those of us who have been ill a long time versus those new to the chronic life.

 

Toni has done an amazing job of capturing so many of the difficulties we face with a chronic illness, from being ill at a young age to self-loathing and self-blaming to how that affects our relationships with others and our caregivers.
It’s truly a must-read for anyone with a chronic illness – or for our loved ones. I’ll probably be bugging T to read this to get his thoughts as well as to see how it helps him to understand both his own and my illnesses.

 

There is so much that I can say and yet the words escape me so, like I usually do at the end of my reviews, I’d like to share some quotes from Toni that really stuck out for me.
When we become aware of the mental and emotional challenges that accompany chronic illness, not only is it easier to adjust to and accept our news lives, but we’re much more likely to make skillful decisions and wise choices along the way. (3)

 

I’ve learned that the burden is on me to make my medical condition visible to family and friends, especially because my chronic illness, as is often the case, is invisible. If I don’t make the effort to educate them, their expectations of me may be way out of line with what I can handle. (8)

 

Mindful awareness of your thinking patterns is instructive because, without mindfulness, when you’re caught up in unpleasant thoughts or emotions, you’re likely to feel as if they’ll last forever. (17)

 

It’s easy to go beyond our limits when we’re chronically ill, partly because adrenaline kicks in and convinces us that we’re doing fine. Unfortunately, when that adrenaline wears off, a “crash” is invariably in sight. (18)

 

Allowing them to help when you’re struggling with your health makes them feel less helpless in the face of the new challenges in your life. It can mean a lot to someone to be able to aid a friend or family member who is struggling with his or her health. (25)

 

Sticking with the example of feeling irritated at physical pain, the way to understand and accept what’s going on in your mind is to gently acknowledge that irritation is present, and then incline your mind toward kindness and compassion for yourself. (74)

 

To reiterate a point from the previous chapter, physical discomfort has three components: the unpleasant physical sensation itself, the emotional reaction to it, and the thought patterns that are related to the first two components. (77)

 

Mindfulness meditation is an excellent tool for seeing that you need not believe in or act upon the ever-changing array of thoughts and emotions that arise in the mind. But if these unresolved issues are part of your deeply embedded personal psychological history (as opposed to being the thoughts and emotions that typically come and go for everyone during meditation, such as a wave of sadness or worry), they can stick in your mind and increase in intensity, leading to anxiety, anxiousness, and fearfulness. (92)

 

Several young people have told me that they’ve been openly challenged when they park in a disabled spot, even though they have the required placard or sticker. (By contract, no one has ever challenged me.) If a stranger is rude to you in this fashion, the best response is to acknowledge to yourself that you feel hurt, take a deep breath, and then immediately turn your attention to taking loving care of yourself. (140)

 

In addition to the challenges they share with the person in their care, caregiver face their own set of stressors. They must live with the frustration and helplessness of not being able to make their loved one better. They’ve been thrust into the role of patient advocate in the medical system, a role for which they have neither training nor expertise. They often have to take over the running of the household. Finally, they’re the ones who see their loved one at his or her very worst. (195-196)

 

 

Book Review: When Doctors Don’t Listen: How to Avoid Misdiagnoses and Unnecessary Tests by Leana Wen & Joshua Kosowsky

Posted on by Grayson

I first learned about Dr. Leana Wen from Stanford’s Medicine X conference. She’s presented to their courses as well on the power of the patient narrative. So when I found this book written by Leana and Dr. Kosowsky, I knew I needed to pick it up.

The goal of this book is to help educate patients on the questions to ask and things to do to avoid being misdiagnosed, unnecessary tests, and unneeded hospital stays.

One of the biggest issues in the last decade, according to Wen & Kosowsky, is the turn to the cookbook approach to health care. You have symptoms A, B, and C, so you must have disease AB. The era we’re in now with this approach is what they refer to as the Era of Depersonalized Diagnosis (the previous eras were Spiritual Healing & Magical Thinking, Early Empiricism & Disease Classification, and the Golden Age of Medical Diagnosis).

This cookbook approach to health care does not work for most. An example was given of a middle aged guy who came to the ER with chest pain… who had also been moving furniture recently. They kept him in the hospital overnight to run tests despite the fact that his practitioners didn’t think he had a heart attack and earlier tests basically showed that he had not.

The best way to fix these types of mistakes? By getting back to the importance of the doctor-patient relationship, of course!

When you go to the ER (or a doctor, but especially in the ER), they essentially want to find your chief complaint and narrow that down to 1-2 words (i.e., chest pain, hip pain, etc). These can often be paired up with pathways, or basically recipes that the doctors have been told to/feel they have to follow to eliminate big picture issues (i.e., heart attack, etc). Oftentimes, the correct chief complaint isn’t entered because someone hears something like chest pain and assumes that is the chief complaint and then follows the pathway. As a patient, you really have to make sure that you assert yourself, which also means asking why docs may be reacting to your story in such a way.

One of the things I loved most about this book was the different sections. There was one about patient stories, and those stories were used throughout the book as examples. There was another about a crash course on diagnosis, a prescription for patients, and another on the pillars to a better diagnosis. Every single section recapped information at the end, which is always great for those of us who have some memory or brain fog issues.

A big takeaway from this book is the advice Drs. Wen & Kosowsky give to patients. There is everything in here, from making sure doctors hear you (and what to do if they don’t) to making sure you have a working diagnosis before you leave to bringing up what you are most worried about to putting your symptoms in the context of YOUR life. Saying your hands hurt and lock up is one thing, but talking about how hard it is to live your day to day live because you can’t bathroom/cook/take care of your pets or kids is another.

The eight pillars to a better diagnosis are: tell your whole story, assert yourself in the doctors’ thought process, participate in your physical exam, make the differential diagnosis together, partner for the decision making process, apply tests rationally, use common sense to confirm the working diagnosis, and integrate the diagnosis into the healing process.

All in all, this book helps to get patients engaged and involved in their own health care – something that has been missing for some time and is also sorely needed. Drs. Wen & Kosowsky even point out that patients often feel as though it isn’t our place to tell the educated white coats they’ve got something wrong – or perhaps worse, to question them.

It’s time that we start becoming active and involved with our bodies, from what we eat to how we exercise to what we perceive as normal (regarding looks, etc) to the health care we receive. If you’re looking for a book to help you get started on that, look no further. This book is one of the better ones I’ve been able to read in a long while – go pick it up!

Book Review: Stop Being Your Symptoms and Start Being Yourself

Posted on by Grayson

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.

Book Review: Hot Cripple by Hogan Gorman

Posted on by Grayson
Property of Hogan Gorman, found via http://www.hotcripple.com/

I had to pick up this book. Something just called to me – I’m not sure if it is the hottie on crutches or the bit about the health care system. But I am glad I read this book.

Hogan used to be a model traveling around the world and then began to waitress in New York City while auditioning for acting gigs. One day, she’s walking to work with her favorite chai in hand and is hit by a car. With how bad off the car was, it was clear that Hogan should have died. Instead, she lived and began a fight lasting entirely too long navigating the medical world with no insurance and trying to get help from several organizations.

I’m not going to lie – growing up being sick I immediately began judging this girl at the beginning of the book. She is a fucking model right? She’s gorgeous and has had the opportunity to live a life that I wish I could have. She was always one of the beautiful girls and knew it. She needed a wake up call, but probably not one calling for what she’s gone through. This book is about really coming to terms with illness when you’re not used to it and learning to fight and learning that it is okay to accept help – I definitely have issues with the last one.

At the end of the book, I felt like I could identify with Hogan more than I thought I ever would be able to. She clung to her fashion life when she was sick because it was what was left of what she assumed was the real her. I’m just finally being okay delving into fashion, accepting that my body the way it is now is really me finally. I mean, it only took 20 years right? Nonetheless, accepting what you are or have gone through is really one of the hardest things that anyone can do let alone anyone with new and long lasting limitations.

I think it is a good book to read, but probably better for those of you who lived an actual life before falling ill. It’s probably a million times easier to connect with the author, and that is kind of critical for these memoir types of books. Plus, I take issue with how she doesn’t necessarily think about invisible illnesses in the book – i.e., getting pissed with people and automatically judging them as different because they’re normal.

In keeping with how I seem to write every book review, enjoy some quotes!

I have been issued a food stamp card with a rather unattractive picture of myself on it. I will now be allotted 141 dollars a month for food, which breaks down to about four dollars and seventy-something cents a day. That’s what we poor folk are allowed to eat a day… four dollars and seventy-something cents’ worth of food… The card is in the middle of my kitchen table, just begging to be used, but I don’t have the fortitude to accept it quite yet. I find myself picking it up and staring at it in disbelief several times over the past day. I am  scared of this little piece of plastic, scared to walk into a grocery store and use it, scared of what it says about me. If I use this card in public, I am branding myself a failure. There is a stigma attached to people on public assistance in this country – that they are lazy, that they should get a job, that they have a welfare mentality – and it has clearly crept into my subconscious and is wreaking havoc on what little ego I have left. (120-1)

I have almost made it past the Mohawks and combat boots when a guy with purple hair says, “Man, that is so cool… it’s not that often that you see a hot cripple.” I can’t believe he just called me a cripple. You can’t do that. That is so un-PC that it’s almost to XYZ. It’s wrong and bigoted and prejudiced. Only I can call myself a cripple, and I do it in a self-depreciating way, but you can’t. I don’t see you limping on a cane or in braces. You are not part of the group. If you were injured or disabled, you would be allowed to call me a cripple, and I would say, “What’s up, gimp?” But you’re not, so, stranger, step softly when you walk, and don’t fucking talk. I want to go all Rosa Parks on his wannabe punk-rock ass and blurt out this monologue in my head… (154)

I feel like an alien in my own country. Every time I turn a corner I seem to hit another brick wall. My body feels like a prison. The pain is still unrelenting. Maybe they’re right; maybe I’m not getting better, but I try. I never miss a doctor’s appointment; I follow their instructions and take my prescriptions; I go to physical therapy (or as I like to call it, gimp gym) as if it were a religion; I eat a healthy vegan diet on a food stamp budget of four dollars and seventy cents a day; I do children’s memory games on my computer to try to regain my short-term memory and strengthen my brain. I think it might be better to be an animal; if an animal is sick or injured and not getting “any better” they are put down, so they don’t have to suffer. We have a Humane  Society for our four-legged friends, yet I am struggling to see any sense of humanity in the society I am living in. (159)

I am sobbing like I have never sobbed before, and I can’t stop. I have reached my breaking point, the end of my tether. Whatever you want to call it, I am there. I can’t take it anymore: the lack of humanity, constant pain, doctors who can’t fix me, memory loss, food stamps, disability, Medicaid, lawyers, poverty – I’m done. I don’t want this life. I find myself turning almost without thought and walking toward the Brooklyn Bridge – the bridge I used to run across when I was healthy – and with each sobbing step I take I am more determined and convinced that this is the only way out. I’ve had a few friends end their own lives, and I didn’t understand how things could get so bad that someone would want to kill themselves. But now I understand. When you wake up and it’s dark and you know that there is no hope that today the clouds will drift away because you’ve been hanging on every day, for days, months, maybe years, and the sun never comes. When you’ve been down so long that a smile feels wrong. You’re not fun anymore; all you talk about is your misery and your pain, and people listen (sometimes), but you watch their eyes gloss over in a distant stare. They can’t help you; nobody can, not even yourself. You dress each day in something you used to love, praying that it will magically transport you back to a time when you were happy, but it never does. You’ve stopped dreaming, you’ve stopped hoping, and you’ve stopped living. So this final act will merely be a formality. Finally, it will stop. Finally, I will have peace. Finally, there will be relief. I understand now, my friends, and I am coming to meet you on the other side of this cesspool that’s called life. (190)

Review: Model Patient: My Life as an Incurable Wise-Ass by Karen Duffy

Posted on by Grayson

I decided to take a break from the HAWMC prompts today to share a book that I love.

Even if you don’t recognize Karen Duffy by name, you probably will recognize her face.

The day after the above picture was taken, Karen landed in the hospital. She had a horrible pain in her neck and it surely wasn’t Clooney related. It took a very long time to narrow down the possible maladies Karen was facing, but she was eventually diagnosed with sarcoidosis, a disease where inflammation causes lumps called granulomas to form in your body. This disease, like many other autoimmunes, can be managed well. The only problem is that Karen’s is in her central nervous system, leading to granulomas that leave parts of your body numb and can be fatal.If that doesn’t do it, she’s the girl in Dumb and Dumber chasing Harry and Lloyd and the girl in Blank Check that the kid hires. She was a VJ for MTV for a while and did a lot of ads with Revlon as well.

Karen’s life pre-illness, as you might be able to tell from the above picture, was freaking awesome. She had gone to school to be a recreational therapist and loved working with the elderly. She was a model and an actress. She dated stars from Clooney to Dwight Yoakam to Chris Farley (note: this book is worth it just for the stories). Clearly, when the illness hit, she was blindsided. Depression sat in that, in addition to the physical effects of sarcoidosis, left her essentially bed bound for a long time. She even missed important events like her sister’s wedding.

She has always been very independent and so the thing that scared her the most was “becoming dependent on other people – on my family, on my friends, even on recreational therapists like myself” (56). She is very blunt in the book about the feelings she had and how difficult it was to do anything, something that is missing in a lot of books about illness. She would go between extremes, from hating being sick and questioning what she did wrong to turning “sickness into a good thing. I remember thinking, Well, if I’m this sick, maybe none of my sisters will have sick kids, because what are the chances of having so many chronically sick people in the same family? Maybe I’m taking the hit for everybody. Kind of like that fellow Je… never mind” (60). I have to say that before I met so many others with Still’s, I felt that way too.

At one point, Karen was bed-bound for quite a long time and it wasn’t until a famous friend stepped in that she got the right kind of care – and found out how close to death she really was. Luckily, she got the right kind of care, including MTX and prednisone, to shrink her granuloma and really save her life.

In the middle of all of this, she started working again and met the love of her life even if she didn’t know it yet. She never really took the steps to educate him on what happens with her disease, how rare her case is, and how little the chances of her surviving this were. He found out all of this on his own, around the time they decided to get married.

I grew up thinking Duff (Karen’s nickname) was the coolest. She was the epitome of early 90s style, with her short hair and signature 90s outfits. She really was all over, from her movie roles to MTV to Revlon ads. She is one of the first models I remember, and she even admits that many people liked her as a model because she was beautiful, yes, but an achievable beautiful – normal girl beautiful instead of Cindy Crawford drop dead gorgeous. To find out that she deals, on a daily basis, with similar feelings and pains as I do was shocking to me.

I really recommend this book. There are so many feelings and issues Duff deals with that many people with chronic illness also go through, and it made me feel less alone. It was also comforting to read the chapter written by her husband and to get more insight into how it may affect relationships.

I’d like to share some further quotes from this book. Some are from a chapter written by her husband, John, and they are notated as such:

Even when I felt able to, I didn’t want to go out, I didn’t want to face people and be judged, be compared to my old self. I didn’t want to have people casually ask me how I was doing. I’d either have to lie or come out and say, “I’m really ill.” I didn’t want to lie, but I didn’t want to tell the truth, either. I didn’t want to talk about my illness because I couldn’t quite believe it myself. I withdrew from even my closest friends because I was ashamed, and I didn’t want to reveal my weakness. I was too independent and too embarrassed to ask for help. I didn’t want to burden my friends. (74)

As I became comfortable around other people again, I did start letting my friend pitch in for me in practical ways, like bringing me dinner and running errands. But I’d needed to know that they were doing it because they loved me, not because they pitied me… helped me appreciate that my parents were helping me out of love, not as a duty. (80)

[Check out page 95 for tips on how to have a comfy hospital stay]

What I loved from the first about John was his character. He’s a decent, genteel human being. And I know John doesn’t love me because I’m a model. He got to know me when I was at my absolute worst, and he love all of me, including the disease. (133)

[John writing] Duff hadn’t shared any information about her disease with me, so I felt like I was going through my parents’ drawers, seeing stuff that I wasn’t allowed to see [looking up sarcoidosis issues & survival rates, etc]. I was so scared and shocked that I didn’t know how to deal with it. It was like reading somebody’s journal, and I felt embarrassed I had gone on the Web and looked up the information. I had to talk to someone, so I called my mother. “John, remember the important thing is that you’ve fallen in love with her. Deal with that,” she said. “That’s what’s important, the feeling you have for her, not the feeling that you think she has about what she’s going through. You don’t necessarily know what she’s going through.” (156)

[John} I also didn’t say, “I love you… we’re in this together.” We’re not in it together. She’s fighting it, and I’m helping her fight it, but I’m not sick. I can’t imagine how sick she is. We’re in it together in the sense that we’re a couple, but my role is to help her live the nonsick part of her life. I planned dinners, or vacations, or an afternoon of kayaking. If I knew that she wasn’t feeling well, I’d say, “You know what, let’s stay in tonight and watch a movie.” Instead of staying in because we has to, because Duff wasn’t well enough to go out, all of a sudden we had something to do together inside. (157)

[John] Here’s this person that you love who’s sick, you don’t want to see them sick, you don’t want to see them suffering, you don’t want to see them in pain. Your instinct is to do something, to help in any way you can. Everybody deals with being sick in a different way, and the way Duff deals with it is to take it on by herself. I had to realize that being sick was her job at the time. Taking it on herself gave her the strength she needed. (159)

[John] I really admire Duff. It’s kind of rare to find yourself in a relationship with somebody who’s your hero. I’m married to my hero. What better thing could you possibly imagine? I have so much respect for how she’s dealt with being sick. It puts a lot of things that have come up in my life into perspective. (160-1)

[John] Duff is utterly contemptuous of people who tell her, “This is going to make you a stronger person,” or, “Think of all the good things that come out of being sick,” and that attitude is something that I latched onto from the very beginning. There’s nothing good that comes out of being sick. It’s how you deal with being sick. I don’t think I’m a better person because I’ve helped Duff face her illness, and I have no idea if it’s making me stronger. (161)

[Visit pg 174 for tips on how to spot quacks & scams]

I do believe your body has the power to heal itself, which is why we don’t die of common colds. Whether you call that the immune system or vis medicatrix naturae [healing of nature] doesn’t matter to me. But there are times when your body can’t handle the assault it’s under. Sarcoidosis was a mutiny in my body – renegade cells attacked my spinal cord, lungs, eyes, and skin. Vis medicatrix naturae wasn’t going to cut it for me. (182)

And I’m aghast over the New Age morality that implies that only the poor bastards that fight the hardest against their sickness will eventually kick it, or that it was something internal that brought on the disease, whether it was stress, or imbalanced chakras, or whatever. It’s all just a moderately sophisticated way of blaming the victim, and that’s cowardly, the last refuge of the pathetic. When people suggest that overwork brought on my sarcoidosis, I always say, “I’ve seen hard work. It’s a tiny Dominican woman wrestling a 225-pound invalid into a bathtub. Modeling is not hard work.” As for the idea that I brought my illness on myself, why on earth would I do that when I was at the top of my game? (183-4)

[Visit pg 201 for outpatient tips or 195 for a coward’s coupon asking a former doc to forward your records]

Then, when it dawned on me that yes, I was indeed sick, shame set in. I experienced an illogical embarrassment about being sick, as if I’d brought it on myself, and that people might look down on me if they knew I was ill. I was at the top of my game, in the best shape of my life, I had more job offers than I could possibly take, how could something like this happen? What had I done wrong? I felt weak. I was very apologetic to my parents. I felt I’d failed them as a child. I was ashamed because I didn’t know how to be a sick person, and I was afraid I’d do the wrong thing somehow. I couldn’t face my friends because I couldn’t face myself. I was embarrassed that I’d somehow lost my mobility and my happy-go-lucky attitude. Shame was more crippling at this stage than even the physical effects of being sick, which were considerable. (205)

Despite my deepest fears, it’s not my independence I’ve lost – it’s my innocence. I never took anything seriously, from my career as a model to my relationships. I still try not to take anything too seriously, but that attitude doesn’t come as easily as it did. I’m no longer able to ignore my own mortality hovering in the background. (219)

Day 9: Caregiving #HAWMC

Posted on by Grayson

Today’s post centers on tips and advice to the caregivers out there. Over the past few years, I have posted several things focusing on caregivers that I felt needed reposting. Take a look!

  • A review of Partners in Healing: Simple Ways to Offer Support, Comfort, and Care to a Loved One Facing Illness by William Collinge, PhD.
  • An interview with Carla Jones, author of Death by Rheumatoid Arthritis
  • A review of After the Diagnosis: Transcending Chronic Illness by Dr Julian Seifter & his wife Betsy
  • A study showing that partners of those with RA and like diseases suffer as much emotionally as the patient themselves
  • A post from last year’s HAWMC focusing on my support system
  • Two posts on sex and chronic illnesses:
  • An interview with my fiance about the difficulties of being in a sometimes caregiver role, and tips/advice for others doing the same
I hope that this lovely collection of links can help to add to the knowledge that you, as a caregiver, are not alone – and that relationships can survive and even thrive through these chronic illnesses. It took living my own life to realize that, as bad of a third wheel as Arthur can be, he can’t ever severe the relationship I have with my fiance. I refuse to be another one in a long line of statistics proving that love loses in the chronic illness game. But that takes understanding the difficulties that come along with A) dating me and B) dating Arthur – realizing that it is just as hard for my fiance to live with Arthur as it is for me, and maybe even emotionally more difficult because he knows there is nothing he can do to fix this for me.
Just as a final remark to all my fellow spoonies – please remember that you’re not angry with your significant other, but with your illness. It makes a huge difference when you stop taking out your anger on the people who are there to support you.

Does being chronically ill make you lose smarts?

Posted on by Grayson

I was just reading a bunch of books on chronic illness as you may see from the reviews in some of the more recent posts. In one of the books, The Pain Chronicles by Melanie Thernstrom, I read a disturbing fact about how the grey matter in our brains deteriorates the longer we are in pain.

Um, what the fuck?

I also read, though, about how a person with a bad hip had regenerated grey matter once the hip was replaced and the pain stopped.

Obviously, this is something that has been bugging me. Not only is this especially disturbing for those living with chronic illnesses in general, but I believe it’s especially disturbing for those of us who fell ill as young children. I was starting to really worry about how this wasn’t really a known fact, even in the chronic illness community, until one of my favorite bloggers Andrew Sullivan mentioned some interesting findings about T cells and brain function earlier this week (if you want to read the full study Sullivan refers to, click here, though be warned it’s a lot of terminology or you can click here for an interview with the dude in charge of the study).

Perhaps one of the most intriguing things about the study is that it specifically showed the involvement of IL-4 producing T cells in cognitive abilities – the T cells help improve our cognitive abilities while the absence of those cells protecting the brain allows inflammation which inhibits our thought processes! And all this time we thought brain fog was one of those side effects of chronic illnesses that were just not explainable!

For a lot of people with rheumatic diseases, the causes of their inflammation aren’t known but are treated with medications we probably all know by now – actemra, kineret, ciclosporin, enbrel, humira, etc, etc, etc. Enbrel and humira are in the class of drugs that affect tumor necrosis factor alpha, believing that is the cause of the out of control inflammation. And it works for people.

The first three I mentioned – actemra, kineret, and ciclosporin – work on cytokines (cell signaling proteins that play a result in the inflammatory response in our bodies) that are known as interleukins. Actemra works on IL-6; kineret works on IL-1; and ciclosporin works on IL-2. Interleukins are another believed cause of the over-inflammatory responses in chronic illness and all three work remarkably better in people with Still’s disease, whether they’re young or old.

In the study, interleukin 4 is in high volume in the brain when we are well, attributing to better learning and memory skills. When we are ill, IL-4 levels are low. The thought is that IL-4 is the specific group of cytokines that tells T-cells to protect the brain from any toxins secreted, but after an injury those T-cells have to go off to fight the infection – those of us with chronic illnesses of the autoimmune kind don’t have injuries/infections/etc all the time, but our illnesses fight our own bodies like an infection or an injury. Essentially, this creates issues with our brains where we are literally stupid for periods of time – like a flare up or period of higher disease activity.

Brain fog being something people can’t understand is becoming a thing of the past it seems. Yay!

PS it took me like four days to write this post. Thanks T-cells!

Book Review: The Pain Chronicles

Posted on by Grayson

The Pain Chronicles: Cures, myths, mysteries, prayers, diaries, brain scans, healing, and the science of suffering by Melanie Thernstrom is by far one of the best books I think I’ve ever read on the subject of chronic pain.

Unlike many who write about pain from an academic perspective, Thernstrom knows what she’s talking about. This book is a mix of academia, folklore and myth, doctor’s opinions, patients’ struggles, and her own journey through our broken medical system. She uses her struggle to go on this journey of discovery and research with us, describing what it is like for those who may not know along the way:

To be in physical pain is to find yourself in a different realm – a state of being unlike any other, a magic mountain as far removed from the familiar world as a dreamscape. Usually, pain subsides; one wakes from it as from a nightmare, trying to forget it as quickly as possible. But what of pain that persists? The longer it endures, the more excruciating the exile becomes. Will you ever go home? you begin to wonder, home to your normal body, thoughts, life? (pg 5)

Thernstrom experienced a sudden onset of pain that went by for years without treatment. Eventually she would be diagnosed with an arthritic condition, causing terrible pain in her cervical spine and arms. She normally writes about death, non-fiction mystery type books. And yet, there is something so fascinating to her about the pain she experiences. She investigates cutting edge technologies and has written a few books and many articles on chronic pain, narcotic pain relievers, and more.

She goes through many studies, discussing the crack down and alienation of hundreds of patients who need narcotic medications, the apathy patients view treating their pain with, and even how pain affects genders, ages, and ethnic groups differently. She also discusses the effects of chronic pain on other parts of the body, including the fact that gray matter disappears more quickly in people dealing with chronic pain and so you actually do get more stupid the longer you’re ill… and then sites a study on hip replacements showing how the gray matter comes back once the pain is taken care of! Where are the articles on that to cheer us up on tough days? (For an update on studies regarding this, check out this post)

She spends time with patients and doctors dealing with chronic pain, noting how chronic pain alters ourselves and turns us into essentially three people – “a feared-for self, an actual self, and a hoped for self” that must be cared for by our health care professionals (212). This may help to quell the fears for some of us that we have a tiny case of multiple personality issues. In reality, this may help us. Think of a time where you were scared about a treatment and yet moved forward because the hope you had overshadowed the fears. I for one appreciate my three selves.

I seriously wish I could just email everyone PDFs of the book, but that’s not possible nor is it fair to Thernstrom’s writing abilities! I feel as though I’m not saying enough, and yet to say more would be too much. This book is amazing and has helped me to understand a lot of the processes that go on in our bodies even more than I thought I did – and that’s saying something!