Sunday, December 14, 2014

A Book Review


"Great books help you understand, and they help you feel understood." –John Green

Laurie's Website
I realize that I have never done a book review on this blog. And as a writer, I know that is somehow wrong, very wrong. So I apologize to my readers for taking so long to do this, but perhaps that is because it has only been recently that I have intentionally looked for and have been reading books by and about people with chronic illness.

I recently felt that I wasn't getting anywhere with my second memoir and needed to be able to approach the story more objectively. I felt like I was spinning my wheels, complaining too much, and struggling to find an adequate and fulfilling ending. So, as any good writer would do, I stopped writing and decided to start reading. I decided to focus my reading on what I found out are called "illness narratives." Stories, both fiction and non-fiction abot illness (living with it, managing it, understanding it etc.) Over the summer I read Autobiography of a Face by Lucy Grealy (Cancer-not as great as I'd hoped), The Fault in Our Stars by John Green(Cancer-MUCH better than expected), and Waiting for Daisy by Peggy Orenstein (re read it, very objective book about infertility).

As I continued to research books and illness narratives (preferably about something OTHER than cancer, not hating, just feel like cancer is the Marsha Brady of illness) I came across the non-fiction sociology book In the Kingdom of the Sick by Laurie Edwards. I was intrigued by the book reviews, the prescription pill bottle on the cover and the very catchy title. I recently made a comment on Facebook about how I used to live in the light but now I live in the dark but can see the beauty of the stars, and the title of this book actually comes from a quote by Susan Sontag precisely about that:


So, I picked up the book, delved right in, and have learned SO much.

For those of you that follow me on Facebook, you know I've been ranting and raving about this book for a couple of weeks. I'm about 75% done with it (have slowed down my reading due to moving) but even if the end sucks (which I doubt it will), I have gained a new and better understanding of not only the medical community, but of where my own biases, insecurities and overall mentality about my chronic illness comes from.

And guess what...all the feelings I have felt in the past (and I'm sure many of you have also)...THEY'RE NOT YOUR FAULT! And those feelings are real, it's not in your head! I'm not neccessarily talking about feelings of pain, I'm referring to those feelings of not being heard and understood by your doctors and nurses or those times you felt belittled by a male doctor (if you're female) for dismissing your symptoms and telling you it's in your head. Guess what? You now have the priveledge of blaming our society, and the social bias against accepting and understanding chronic illness and pain.

These are just a few of the insights I've gained from reading this book so far. Although I started reading the book a little apprehensively because I didn't want to be bombarded with technical terms, cold statistics, hard to read jargon, and a boring timeline of illness, after just a few pages in, I realized this book was none of that.

What I love about this book is the following:

1. Laurie Edwards suffers from chronic illness and pain herself. She has made it her job in life to study the psychosocial effects of illness, and to advocate for patient rights. I trust her research, personal experiences and information more than I would someone else's.
2. The book effortlessly combines meaningful statistics and information with real life patient stories and anectdotes.
3. She dedicates two whole chapters on breaking down why women's health issues are so misunderstood, undervalued, and misdiagnosed.
4. She makes it a point to discuss illnesses that are not just cancer.
5. She really helps you understand why doctors struggle with diagnosing and treating chronic pain.
6. It's easy to read, supported by data, and provides various sides of controversial issues.

What I wish this book did more of: (Although I'm not finished, so it may do this near the end, but doubtful)

1. Study the different experiences with doctors and hospitals of minorities with chronic illness vs. those of caucasians. She often makes a note of how there are differences but doesn't expand on them.
2. Discuss how (socially and culturally) minorities manage chronic pain and illness differently and how that impacts survival rates, treatment etc.

As you can see, there is not much more that I would change or add and the little I would like to learn more about it is clearly based on my own racial bias. This is a book I wish I would've read the day after my diagnosis. It would have saved me so many years of heartache, frustration, guilt and shame. But perhaps it came into my life right when I needed it most, I don't know if I would have had the same openness to accept the information then as I do now.

This is a book I want to gift to all of my chronically ill friends. I highly recommend reading it, as anyone, from a health professional to a patient to a caregiver can gain a lot of insight on how and why the medical community is the way it is and why we think and feel what we do when we see doctors.

I'd love to share more about all the things this book has made me feel, but I'll just let some of my favorite quotes and "aha" moments do it for me...and perhaps it will entice YOU to read the book or buy it for that friend of yours that has Fibromyalgia or MS.

Aha Moments and Favorite Quotes:

Chapter 1:
"Chronic illness is the leading cause of death and disability in this country, with seven out of every ten deaths attributed to chronic diseases"(Edwards, 11).

"'The fact that you're just not going to get better seems unbelievable to most people.....There must be something you can do that you aren't doing.....something should work, and if you're not better, then you're not working hard enough. It's frustrating, it's everywhere...and it's just wrong....I can't think or eat or exercise my way out of these illnesses, no matter how hard I try'"(27).

Chapter 2:

"The very nature of chronic illness--- debilitating symptoms, physical side effects of medications, the gradual slowing down as diseases progress--- is antiethical to the cult of improvement and enhancement that so permeates pop culture" (34).

"'For decades now, life expectancy has been rising. But the longer we live, the longer we die'"(Gever/Edwards 44)

Chapter 3:

"We should not treat incurable people as unsolvable problems"(67).

Chapter 4:(Women's Health Movement and Patient Empowerment) 
Probably my favorite chapter

"For years, it didn't occur to me that I could argue with my doctor's results, even if they were contrary to what my body was telling me" (74).

"'Just because we don't understand the cause doesn't mean it is not real...This is part of what's so bad about this disease. People feel responsible for it'" (75).

"A survey taken by the [AARD] found that 45% of patients with autoimmune disease were labeled as chronic complainers early in their diagnostic journeys, with the resulting delay in diagnosis often leading to organ damage from lack of appropriate treatment" (78).

"Unless you live with and experience the looming threat of symptoms firsthand, you can't possibly understand the emotional and physical toll of chronic illness" (85).

Chapter 5:

 "Another potential consequence of cause-related marketing and activism is the expectations put on patients...'the tyranny of cheerfulness' is associated with many of these events (runs/walks). We know how comforting and necessary images of empowered survivors are. However such emphasis doesn't leave room for people who don't see this diagnosis as a lucky gift..The issues apply with chronic illness...For one, there is obviously no finish line...we just live with the symptoms that wax and wane...Without the finish line that denotes survivorship, there is not the same level of cultural awareness or acceptance of our diseases" (100-101)

"The phrase Tired Girls has stayed with me for years, because I know so many Tired Girls, because when some of my conditions flare, I am that Tired Girl who pays for the eneregy she expends...The Tired Girl stands for so much that society disdains: weakness, exhaustion, dependence, unreliability, and the inability to get better...She is far removed from the cancer survior triumphantly crossing the finish line....[she] has few cheerleaders...and often... wouldn't even know how to define what or where [her]  finish line is" (103).

Chapter 6:

"'The Girl Who Cried Pain' found that women's reports of pain are taken less seriously than men's and they are less likely to receive aggressive treatment than are men. In fact, research shows that men who report pain are more likely to receive painkillers...while women are given antidepressants" (115).

"Lack of understanding from physicians is both an individual and institutional problem; even in the last years of the 20th century, pain was not an established part of medical school curricula"(118) - My WTF moment

"While chronic pain is as prevalent as cancer, cardiovascular disease, and diabetes combined, the NIH spends 96% less on research on chronic pain than on these conditions"(126).

That's it so far...I am in the middle of Chapter 7 of 9 chapters total. There were so many more quotes, but I'll let you pick up the book to read more. I am fascinated by what I've learned so far and intend on picking up her first book: Life Disrupted: Getting Real About Chronic Illness in Your 20s and 30s

I truly appreciate this book because it has allowed me to better understand why my doctors behave the way they do, how fortunate I am to actually be living in this century and not just a few decades earlier when technology wasn't as advanced and Scleroderma was a death sentence. And even though I get frustrated by the lack of answers I get at hospitals and doctor's offices, I now know that the field of medicine is still a very new field and doctors are only doing what they can with the little knowledge they have. While I will always demand respect as a patient and intend to have a say in my care and treatment, I cannot get upset with the trial and error process of treating my disease anymore.

It is what it is. Kind of like when I try a new lesson on my group of 25+ students and somehow only 12 get it....what do I do? I reteach, and try again until I get it right. But you know there's always that ONE kid...either way, it doesn't do any of us any good to get mad at me or the kid(s)...we just have to keep trying till the light bulb turns on, or in my case, the treatments work.

I hope to use what I learned from this book to approach my memoir more objectively and reflect on past experiences with my illness and with doctors and hospitals in a more compassionate and understanding way. I also hope it will inform and guide my future interactions with the medical community so that I can receive better care and learn to thrive in life and not just survive.

My next book review will be on The Wounded Storyteller by Arthur Frank which discusses the literary theory and structure of illness narratives. (Basically the three stypes of narratives that authors can use to tell their story). I am also still very much interested in reading memoir about illness so if you have any recommendations, please share!




Tuesday, December 9, 2014

Tis the Season!

Aaah! I can't believe I forgot my Sunday Blogday post! Sorry loyal readers...it was a bit of a crazy weekend. We moved into our new home! Yay! So needless to say, come Sunday I was pretty pooped and my body wanted to do nothing but sleep and sleep some more. Once the new house is "picture ready" I will post a blog all about it!

For now, I want to focus on the upcoming Holiday Season. As we all know, Christmas is the time for giving. Giving love, giving our time to our loved ones and those in need, giving gifts. For this post, I wanted to share a few thoughtful items and gestures that you might consider giving to that person in your life who lives with chronic illness or pain or that you (the chronic illness and pain sufferer might consider asking for). It's easy during this time of year to get caught up in the stress of it all, but if you take just a moment to really consider the needs and desires of those people who have it just a little harder than the average Joe, I promise they will be forever grateful. So..without further adieu...10 gifts/gestures you can do or ask for for the chronically ill.

$6.99-$20.00
Stocking Stuffers
1. Magic Tap Drink Dispenser- this fun and easily adaptable device can go over almost any jug!
Makes it tons easier to get juice, milk, or your favorite drink without having to lift a heavy jug, open a pesky tight lid or use your hands! And if you hate touching cold items, like I do, this keeps you from having to do that too!
$5.00
2. One Trip Grip Grocery Bag Holder- I have been wanting these for a LONG time. I usually have to do the big grocery shopping at my house and all that walking around in the cold a$$ store is hard enough...but then I have to go home and lift and carry ALL THOSE BAGS by myself TOO?! Well, this little product can make my trips a little easier! the one trip grip grocery bag holder allows you to carry more bags at once with an easy to grip device. Although I'm not a fan of carrying TOO much at once since then my arms hurt like hell later, I am a fan of reducing the number of trips back and forth to my car which is what is really exhausting. It could also be great for moms who have to carry their kids AND the groceries! And you can't beat the price!

3. USB Heating Gloves
$20.00
- I am obsessed with these gloves! I don't have them yet, so I can't say how well they work, but I am willing to give them a try. Since I work from home and spend most of my days on the computer, I can't imagine a more perfect gift! Or for that friend you know that works in a cold office (which most of them are) even in the summer. These gloves can become mittens and/or fingerless, and they heat up through a USB port that can easily connect to your laptop or computer! How perfect. I'm dying to test these out...so...if you want to get me a gift you know I'll love and use...*wink wink*
$15.00 (24pk)

4. The Gripper- these colorful and fun devices can be added to almost anything that requires you to
hold it/grip it (pens, pencils, utensils, razors, combs, paint brushes etc). I easily get hand cramps when writing, so these would be great for that friend that has RA, Scleroderma, or hand problems but still needs to write, paint, shave, and eat! :) A great, thoughtful stocking stuffer indeed!

Gifts that Keep on Giving:-Subscription Boxes!

I used to subscribe to Birchbox and I got a lot of wonderful and cute beauty supplies. I loved it! So...I thought why not suggest giving subscription boxes that chronically ill folks would really appreciate and love. What's great is that you can buy long term or short term subscriptions (Month to Month/ One time gift or 3 months- 1 year) and it's like they will get a gift from you each month! How thoughtful is that?! Here are 3 that I found that seem to be pretty awesome and great for those who have special dietary needs or just need a little "me" time- which all sick people do.

5. Send Me Gluten Free- many of us out there have decided or have been required to go "gluten free." Why? because it makes us feel better, reduces inflammation and keeps us from having digestion
problems. Or, perhaps you know someone who is trying very hard to go or stay gluten free but is feeling frustrated by what they can and can't eat. Well, this box seems to be a great sigh of relief. This subscription box provides you with great gluten free snacks, products and even recipe cards! If you're feeling stuck, eating the same 3 meals, finding it hard to eat things you like this might be able to open up your options. I'm definitely considering giving it a go! ($20-$30 a month)

6. Yogi Surprise- I love yoga. Yoga literally saved my life, my body and my mind. Nowadays, most of us know at least one yogi/yoga lover. So why not show them how much you respect their practice by giving them a subscription to this box tailored to yogis everywhere?! Yoga is also a great practice to start for anyone suffering with chronic pain, joint stiffness, or insomnia. This box will send you "6-8 full-size products designed to nourish and support your well being, vitality and growth You’ll get a variety of items from handcrafted yoga accessories and natural beauty items to herbal tonics, organic snacks and super food essentials." ($44.95/mo - a little pricey but incredibly thoughtful and even if you only send it as a one time gift- your yogi friend will love you!)

7. Hammock Pack- For those who love to travel but maybe can't afford it or don't have the energy this is a great little gift! I chose it mainly for the name, I've been dying to lie in a hammock for ages now but can't seem to find one. This subscription box is "a monthly surprise pack filled with everything you need to take a much needed getaway without even leaving your home. Enjoy a selection of products that are local to each monthly destination. Geared toward women, each pack is filled with a mix of food, bath products, housewares, and accessories you’ll only find while visiting each city. We love introducing you to unique, hard-to-find items while supporting small businesses!" ($30/a month)

Don't like any of the subscription box suggestions I made but still want to consider this as a gift? Go HERE for a full list of subscription boxes for everyone on your list!

Gifts & Gestures

8. For the Cook: Know a chronically ill person who loves to cook but struggles to get things done in the kitchen? Consider buying one or all of these gadgets and kitchen devices:

Vegetable Chop & Measure- allows you to easily chop AND measure vegetables. Great for those who struggle with holding a knife or are fearful of cutting themselves. ($19-$30)
KitchenArt Scrap Trap- this wonderful invention allows you to scoop all your chopped up food and veggies into a container that can fit into any drawer under you kitchen counter. I've been wanting one of these since my hands started acting up and it's hard hold my hands in a "scoop" position.
($10-12)

9. For the Forgetful: Brainfog is real. The stressful and overwhelming effects of brainfog can be debilitating. Forgetting where you put your keys, wallet, gloves, scarf, planner etc. can cause you to waste so much time and energy (trust me, I've been there). No one wants that, especially not a sick person. But unfortunately, for many of us, the drugs we take or the symptoms of our illness causes us to suffer from brainfog. So why not give a gift that could help?!

Lost and Found Trackers- these little devices you can place on almost anything and easily use an App on your smartphone to find it! (Just be sure you know where your phone is too!)
PC Mag.com suggests the following:

Bikn ($129.99 for starter kit with iPhone "smart case" and two trackers)
HipKey ($59.95 for one)
Linq Up ($2.50 per month for one tracker and support for up to three; due out in the next few months and includes a few other unique features)
Find by SenseGiz ($24.95 for two; made for pet-tracking in particular)
SticknFind ($49.95 for two trackers)
Tile ($17.50 each)
10. For the one who has it all: If you know someone who has it all, and insists on not receiving gifts, then why not donate to the organization of their illness?! What a beautiful gesture on your part. Most organizations will let you donate on behalf of someone or in honor of someone and may send you a card or thank you note that you can print and share with your loved one.

I know I get really excited and emotional when a friend or family member donates to the Scleroderma Foundation or the Lupus Foundation, it shows me that they listen to me, are aware of what's going on in my life and they know what's important to me. And, it can make you feel good too, and it's up to you how much you donate!

Don't want to just give money? Sign up to volunteer for one of the organization's events, or register for an upcoming walk and see if your family member or friend wants to join you! What better gift than giving the gift of your time?

These are just a few of the things that I know I want, and that I know many of my chronically ill friends would love and appreciate. Hope this helps make Christmas and Holiday shopping for us a little easier.

What are some of your favorite gift ideas?

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All products mentioned are my own choices, I was not paid to endorse any of these products.

Sunday, November 30, 2014

Appreciation & Acceptance

Over the last two months, I have learned two very great lessons: both acceptance and appreciation must be a daily practice.


Acceptance:
I have been saying the serenity prayer for many years. Every time I wake up, several times throughout the day and before I go to sleep and hell, just whenever I need it. (Serenity to accept, courage to change, wisdom to understand) And while it has helped me get through some tough times, I never truly understood its implications until recently.

After my "soul sucking summer from hell" whereby I was left destitute, depressed and battling weekly nervous breakdowns and persistant suicidal thoughts I decided to seek professional help for the second time in my life. I had seen a therapist once before after the Jan 2012 miscarriage, and while she helped me talk things out I never really felt like I had any "aha" moments with her. My new guy is quite good however, and one of my first epiphanies came during our third session when I was, once again, crying and complaining about my chronic health issues and how I was just feeling like a failure. I told him that I was trying to accept my condition and my life circumstances but it was hard. It was hard to accept chronic pain and chronic illness. And it seemed like the minute I accepted one aspect of my illness...BOOM...there was suddenly something ELSE I had to learn to deal with.

In the midst of my sniveling and crying, my therapist took a moment to interject. And what he said, changed my perspective completely. "Acceptance isn't something to get to. It's an ongoing, daily practice. A body builder doesn't work out just one day and says 'I'm done, I'm fit.' He/she has to workout every day. A musician practices every day. You have to practice acceptance every day. You have to make a conscious effort to accept, on a daily basis, maybe sometimes even on an hourly or minute by minute basis. It's a journey, a daily practice."

In that moment, I finally felt relieved. The pressure of "coming to acceptance" fell completely off my shoulders. I no longer felt like a failure for being angry or depressed about my condition. Feeling acceptance wasn't an end goal, but rather a choice. And I realized that some days I just wouldn't be as accepting as others, and ultimately that was ok.

Before this moment, I used to say the serenity prayer hoping it would lead me somewhere- lead me to peace and acceptance. (That, I now realize, was wrong). I now say the serenity prayer as a reminder to myself that acceptance is a daily practice, a daily struggle, a daily choice. Just like I take my pills on a daily basis to stay physically healthy, I need to accept my condition, my illness and my life on a daily basis in order to stay mentally and emotionally healthy.

Appreciation
Cultivate an attitude of gratitude. That is the major life lesson I learned while at my Gratitude Yoga Retreat at Retreat in the Pines earlier this month. (I highly recommend doing something like this for yourself at least once in your life)


I went on this retreat with a friend, in order to treat myself for the crazy and emotionally draining summer I had, and because, well I love yoga, needed to make more friends and wanted to spend some time out in nature. I definitely got out of it what I wanted and even more.
Check out more yoga retreat pics HERE!! 

Not only did I make friends and lots of memories, I was reminded that the battle I am fighting is a hard one, and that everything I have done and am doing is ENOUGH. I was asked to feel grateful for the challenges I have faced because they have made me who I am (and as those of you who have kept up with my blog all these years know, I do try to be grateful for all scleroderma, and lupus and everything else has taught me), but like acceptance, appreciation is also a daily practice.

It won't always be easy to be grateful for the bad shit that happens to me and that's ok too. But I know that if I can change my perspective on a situation, person, circumstance or experience even just a little and find something to be thankful for, it could ultimately change the outcome and provide me with just a little more peace.

Like the quote above says, gratitude can turn denial into acceptance, but for that to happen, I need to practice it on a daily basis. The more I can be grateful for, the more I can accept the things I cannot change.

Since the retreat and my ongoing therapy sessions I can say that I have a lot to be thankful for as the blessings in my life continue to abound - we just bought a house, my energy levels are high, I am excited about all the possibilities with my second memoir and all that 2015 will bring.(I'm sure many of the blessings were always there, I was just allowing my ONE problem- my health- to cloud all the great things that were already present). So, in the spirit of the Thanksgiving holidays and to honor all that I came away with during that awesome retreat, here are a few things I accept and appreciate:

1. I accept my family for who they are and the choices they make. I am grateful that they love me, are alive and well, and are willing to make huge sacrifices to try and help me. (Special thanks to my mom and dad)
2. I accept and appreciate my husband for his patience, love and understanding. I owe him my life.
3. I accept and appreciate the homebuying process. I am grateful my hubs and I were able to buy a new home even though it was stressful because we will truly appreciate this great blessing that so many can only dream of.
4. I accept and appreciate my friends for being in my life despite my flakiness and for always finding ways to help and support me in my time of need.
5. I accept and appreciate my chronic illnesses for teaching me how to live in the moment, find beauty in all things, and for helping me understand that life is fragile, life is short, and that we should take nothing for granted.

Right now, life is good. Not because I deserve it (as I once believed) but simply because that is how I choose to look at it and because their is an order and a balance to all things.

I will continue to practice acceptance and appreciation on a daily basis because I have to, because I choose to, and with that, I anticipate more awesomeness and "alegria" in my life.

What do you accept and appreciate in your own life? Be sure to make it a daily practice.