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 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.

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!
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
- 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 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.

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 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?

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.

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.

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.

Sunday, November 23, 2014

30 New Things

17 days ago I turned 30. Wow. Even I can't believe it. I definitely don't feel 30. Though I'm not sure what that's supposed to feel like. All I know is, that I'm incredibly glad and grateful to be out of my 20s.

I learned a lot during that gut wrenching ("soul-sucking"), life altering, tumultuous decade and I am truly grateful for all that it taught me. However, it is about damn time that my "real" age caught up to my "soul's" age. Anyone who's known me for longer than 5 minutes knows I'm an old soul. And I wear that label proudly. Most people in their 20s give me a headache. I was fortunate enough to not suffer with the delusion that I was awesome, infallible, and invincible for too long. Chronic illness and pain will slap those delusions right out of you in an instant.

While my 20s were anything but predictable and "normal" I was able to experience a wealth of situations and opportunities that I know will guide and inform me as I move into this next phase of life. Do I think that things will be dramatically different in my 30s? Probably not. Will I still have really bad days with lots of pain and fatigue? Probably so. Will everything in my world become "magically delicious" just because I'm 30 and not 29? Absolutely not. But I do have a deeper wisdom, understanding and appreciate for things and people I know I took for granted in the past. And I also have a greater awareness and acceptance of the things I can control and the things I can't. And with this wisdom, I hope to inspire, motivate and encourage others to embrace their life with illness and make the most of it, feeling proud and happy that their lives matter just as much (if not more) than everyone else's.

That is the major difference between the journey of my illness in my 20s and the journey I am on in my 30s. At 22 I was unexpectedly thrust onto the road less travelled by and had no choice but to cope with and manage chronic pain and invisible illness. It was all about me. Sure, I reached out to others and tried to find support, but only in an effort to understand myself better. At 30, I intend to choose the road I walk down (I'm sure there will be potholes, speedbumps, cracks and more) and share my experiences with others so that they can understand themselves better. So that they can live life with a little less fear, a little less hesitation and a little more control.
To celebrate my 30th birthday, I embarked on a 30 day challenge. Try 30 new things for 30 days. I'm pretty sure I did more than 30 and I had a blast doing it and even though those 30 days were also fraught with anxiety (as I awaited the diagnoses of possibly another life-altering condition), I embraced what life had to offer and the uncertainty of the next 30 years. (You're never too old to try something/learn something new)

Here's a look at the 30 things I tried:

Photo Gallery by
1. Modeling
2. Doing model's make-up
3. Mercer Arboretum w/Lupe
4. New brunch place: District 7 (yum)
5. New lunch place: Low Brow (yuck)
6. Italian Soda
7. World Market Shopping
8. New candle scents (mmm)
9. Hot lemon water (mmmm hmmm)
10. New shrimp recipe (delish)
11. New coffee drink at Boomtown (yes)
12. New job title: Director of Learning Strategies and Design (pay raise!)
13. New book: Truth and Beauty by Ann Patchett
14. New dessert Recipe: Apple upside down cake (not bad, not the best)
15. New outfit from Target (of course!)
16. New dinner place Black Co op in Austin (yum)
17. Meeting new friends (Amy and Rob Crowl- LOVE YOU!)
18. New tapioca drink flavor- passion fruit (tart but tasty)
19. New lesson w/ESL students (so much fun)
20. New reading and writing habit (...not as successful as I'd hoped, but still working on it!)
21. New coffee shop- Blacksmith, good drinks, bad food.
22. Finger looks like "new"- scabs came off, healed completely! (win for me!)
23. New look on my website and blog
24. Saw the lunar eclipse for the first time
25. New music- Ed Sheeran (best. choice. ever.)
26. Learned something new: creating your brand (still working on it!)
27. New dessert place: Ooo la la Bakery (mmhmmm)
28. Art Opening - read poetry, found out about Spring St. Studios (awesome space!)
29. New brunch place 2: Cook & Collins w/bestie and her beaux
30. New doctor- pulmonologist (not. fun.)

A few other "new things"- bought a pumpkin for the first time, that we still haven't carved. read some new poetry for high schoolers at UH, got a new driver's license, went to South Padre Island for the first time, attended my first ever Jewish wedding ceremony, visited a new bookstore and gelato place, ate a new flavor of cheescake, went to a RAW artist show in Houston, and made homemade Halloween decorations for the first time.

It was a fun, eventful, interesting and rewarding experience. I value learning and trying new things and I want to be sure I do it more often. Some new experiences (like new tests and procedures) are scary and nerve wrecking while others are fun and exciting. Regardless of what life throws at me or what I choose to do, like I tell my husband when we get lost on the road: "It's an adventure!" (He always rolls his eyes) So let's see where this road will take us.

Sunday, November 16, 2014

What Dreams(.)(?)(!)

“If men only felt about death as they do about sleep, all terrors would cease. . . Men sleep contentedly, assured that they will wake the following morning. They should feel the same about their lives.”
Richard Matheson, What Dreams May Come

What dreams....

The way that sentence ends could lead you to a thousand different conclusions.

What dreams? Is different from…

What dreams! Is different from…

What, dreams? Is different from

What dreams.

For me, it is an ever changing punctuation mark. Because of course, it depends on what dreams you’re referring to. My actual literal dreams that haunt my pshyche if and when I actually get to fall asleep? Or my metaphorical “dreams” that have been deferred and left to fester like a sore only to run away time and time again?

I used to have what dreams!

But lately it feels more like what dreams?

Perhaps this post got off on the wrong foot. I am currently at a gratitude yoga retreat (which I will blog specifically about at another time) and I realize how negative and ominous I am sounding.

So, let’s try this again, perhaps with a little more gratitude and optimism.

The best way to make your dreams come true is to wake up. - Paul Valery

My dreams have changed. My life has changed. It is a daily struggle to accept both, but I am learning to be grateful for the insight it has given me. 

I have put a lot of thought into dreams and dreaming lately because my literal, physical dreams bully me on the playground of my pillow and because I’m playing a game of tug of war between my metaphorical dreams and my reality and I still don’t know who’s going to win.

My Literal Dreams:

“Na-na-na-na Boo boo!” Is what I hear when I wake up after a very vivid dream of holding my newborn child in my arms, or taking my kids to school. 

“Psych!” Echoes in my temples as I pull my hands up to my face in the dark and realize, that yes, I’m still missing a fingertip even though five seconds ago, in the dream world, my hands looked like they used to.

It is a slap to the face. It is sick butterflies floating around and rotting in the pit of your stomach. Realizing that you’re only dreaming while you’re dreaming is probably the worst part of it all.
I tell myself in my sleep “this is just a dream, this is just a dream” really believing that it will soften the blow when I wake up. But it never does.

I try not to interpret my dreams. I just let them happen. But I know what they mean. I know what my dreams are telling me. I understand that I am still in the process of accepting my reality. I know it’s not going to be easy, hell, it HASN’T BEEN easy. But I really don’t know who ever lead me to believe it would be.

My Metaphorical “Dreams”

I had dreams once. Big dreams. I still have them. But I don’t approach them or anticipate them with the same na├»ve hope as I did before. My dreams have lost their luster, their appeal, their magic. My dreams are tethered to my reality and I have yet to decide if this is the natural and wise progression of what happens to us as we mature and experience life, or if it is, at the end of the day just another one of the great tragedies of human existence. After all, don’t we tell children to “dream big,” and “reach for the moon?” Aren’t we supposed to want the most out of life? What does it say about us if we settle for mediocre dreams that only mimic our reality and don’t push us in new directions?

Books I've been published in....
Perhaps it is because, in retrospect, most of my dreams have come true. Getting published. Teaching. Finding love and getting married. Having a job I love. Performing at the Nuyorican. Acting professionally.  (Not very exciting dreams to have, but they are mine and I believe in them) Of course, I have  fantastical dreams also: win some great literary prize, be on Oprah, travel the world, own a bookstore, be remembered for my writing and talents. 

But I have always dreamed those with caution. Knowing I would be thrilled if they happened, but never investing enough time, energy or talent to actually see them through. If I don’t try, I can’t fail.

And yet, there are dreams “post sclero” that I dare to dream that I know I can and only WILL fail at:
Being “normal.”
Being “healthy.”
Being “whole.”

It is these dreams that I have to talk myself out of on a daily basis because I know what it feels like to have your dreams deferred. And I am here to tell you that not only does it stink, fester, dry up, rot and explode, it also implodes on itself and on you….leaving you all alone to gather the rubble with nothing but your bare hands and a prayer.
It is these metaphorical dreams that become literal nightmares, waking me up in the middle of the night, reminding me of all that is wrong with me, all that I can’t control.

But what am I getting at with all of this? In the context of my illness and in the recent transition into my 30s, why do my literal and metaphorical dreams matter?

On the one hand, because as I’ve mentioned before, my illness changed my dreams. Rocked me to the core and made me believe that nothing was possible anymore. (And on really bad days it still does that) But, when I finally began to see and understand how these new dreams could be more powerful, more amazing and more fulfilling than anything I ever dared to dream “pre sclero,” I accepted the loss of my former dreams and began to embrace the new journey I was on. It still isn’t easy, by any means. These new dreams scare the hell out of me. But I truly understand now (after several near death experiences) that I’ve already been through “the worse that could happen,” and I’ve got nothing to lose.

On the other hand, my physical, literal, put your head on a pillow and fall asleep dreams juxtapose my current life and realities with my former self and my “what could have been self.” They haunt me and taunt me because they feel so real. 

I see a pregnant me. And then I wake up. Hollow and childless.
I see 10 pretty fingers, shaking someone’s hand, writing a new poem, baking cupcakes. And then I wake up, still partially amputated, still not whole.
I feel joy at hearing a doctor say I don’t have PAH. And then I wake up. Out of breath. Unsure of what the future holds.

It’s like the movie Vanilla Sky had a baby with Inception, implanted itself in my brain and left me feeling like Eternal Sunshine of the Spotless Mind.

Both my literal and metaphorical dreams change just as often as my reality changes, and I’m learning to accept that also. And acceptance, like gratitude and good health is a daily practice. 

Dreams are hard. Life is hard. But if and when you’re lucky enough to have them meet, count yourself lucky, hold on tight, and enjoy the bumpy, thrilling, unpredictable ride.

Friday, October 10, 2014

Little Happies: New Things

"Don't fear failure so much that you refuse to try new things. The saddest summary of a life contains three descriptions: could have, might have, and should have."- Louis E. Boone

It's been a minute since I did one of these, and I am trying to force myself to write as often as possible...and I'm getting nowhere with my memoir right now (mostly cause I'm having a flare up today)...SO instead of focusing on the negative and what I can't do...I thought I'd share all the goodness that's happened in my life GOES!

1) My finger is HEALED! Can I get an AMEN?! Scab is off. Physical and Occupational therapy is going well, and the Raynaud's attacks are becoming less and less painful and less frequent. Joy to the world!!!

2) I have decided to embark on a month long journey of trying new things. I will turn 30 in less than a month (November 6th) and decided in late September to spend 30 days trying 30 new things. I'm only on day 15 today and I think I've tried over 20 things, but I lost count. My goal is to try at least one new thing a day...and so's been a A LOT of fun...even when it doesn't go so well. 

A few things I've tried:

  • Modeling
  • New dinner and dessert recipe
  • Bought a new CD (Ed Sheeran-A-MAZE-BALLS)
  • New tapioca tea flavor (Passion fruit- tart and tangy but good)
  • New experience with the hubs (Mercer arboretum) 
  • New coffee shops 
When it's all said and done, I will dedicate a very long post to how it all went and all the new things I tried! For now, I'm just having fun experimenting with new things big and small. :) 

3. We are house hunting! After my car got broken into AGAIN last week, I took it as a sign from God that it was time to finally get the heck outta dodge. I'm actually super excited to go through the "stress" of finding and buying a house. Probably because we are not also trying to make a baby. So all my energy is on the house hunt and it's been fun so far! We also got pre-approved for more than when we were house hunting the first time, so that makes me REALLY excited! Wish us luck..will keep you posted!

4. I've started writing again- my memoir that is. I have a concrete plan of action, a good outline, chapter titles and a clearer vision of what I want and how it's going to end. This is a great leap forward for me! I want to try to write almost everyday, but it's proving to be quite the challenge. However, I have vowed to at least work on my writing career that could mean anything from updating my website and blog- which I did- notice the new colors and layout? (I'm trying to keep my "brand" consistent) Or it could mean researching writing residencies or workshops. Or, on really good days, it could mean actually writing a chapter or two. Regardless, I am committed (that's my therapist's word) to my writing career and to achieving those goals. 

5. The CellCept-despite my aversion to it- is actually working. (I knew it would- always does) I feel so much better. Stronger. Healthier. No fatigue (except on flare days). No pain. I hate that it makes me feel so good, so normal and yet can be so dangerous. But this is the "pill I must swallow" (pun intended) if I ever expect to get healthy enough..for well..anything. I'm happy I feel better overall and am looking forward to a much better decade ahead. 

Well, that's it for now folks. Just wanted to share a quick update and let you know that I am well and hoping it stays that way for awhile. I deserve a break! Be well everyone.

Hugs and Chocolate!

Friday, September 26, 2014

Let's Talk

The other day, while chatting with one of my sclero buddies, I came to a rather funny and yet stark realization:
The conversations I have with my chronically ill friends are usually quite different than those I have with my “normal” healthy friends.  I mean, I guess I’ve always known this and I’m sure it makes common sense for this to be the case. After all, one’s normal healthy friends can't fully understand what we go through. But I also found it very interesting how different the tone of these conversations can be even when you talk about the same situation.

For example, when a healthy friend asks me about my recent hospital stay or surgery the conversation might go something like this:

Heatlhy Friend: So I heard you were in the hosptial recently and had surgery?!
Me: Yeah, just trying to heal this finger already.
HF: How’d it go? How are you feeling?
Me: Oh, it was fine. As far as hospital stays and surgeries go. I’m feeling alright. No more pain, so that’s good.
HF: Yeah! That IS good. look great! (cue half smile and sad eyes)
Me: Thanks.
(Awkward silence, I change the topic) 

Now, to all my healthy friends, this is not to say that I don't appreciate your sympathetic inquiry and kind comments. But the truth is, you will never truly understand what it's like unless you have to go through it yourself. Which is why, I may never talk to you about my medical and chronic illness experiences the same way I do with my chronically ill buddies. 

See, one of the major differences I noticed in the conversations between my healthy friends vs my sclero friends is that healthy friends want to know so they can provide you some kind words of comfort. Your sick friends want to know so that they can compare war stories and help you find the silver lining. 

Sick Friend: Hey! So good to see you out of the hospital! How'd it go?
Me: Ugh, it was awful! I was there for 5 days and they had to give me 7 different IVs! I look like a freaking heroine addict. Look at these brusies!
Sick Friend: Girl I KNOW! Last time I was there for 2 weeks and by day 5 I had been poked 12 times! I finally broke down and told them to call my doctor to get a PICC line.
Me: Yeah, it's like they don't get it, our skin is tight, you can't treat us the same as everyone else.
Sick Friend: For real.
Me: The food was good though.
Sick Friend: What hospital were you at?
Me: Memorial Hermann
Sick Friend: Oh yeah, their food is awesome. 
Me: I had the turkey burger for like three days.
Sick Friend: Yeah! I always get the baked chicken.
Me: It's good, right?!
(Laughter ensues- they continue to ask REAL questions about my experience)

How were the nurses?- And we talk about how awful or how wonderful they were during that particular stay. How you know more about your disease than they do and how you can always tell who's new at their job by how badly they draw blood and how nice they still are. 
Did you get any REAL sleep?- The answer is always NO. Which leads us both into a tirade about how a hospital is no place to get better.
Do you have to go back?- The answer always an uncertain one because we all know how quickly being well can change to being ill. 
When do you see the doctor again?- It's always too soon.

You see, there is a certain level of cynicism and humor that comes from living with a chronic illness that only the chronically ill can truly appreciate and understand. We compare war wounds like soliders in battle because it helps us feel less alone. We try to "out sick" each other not because it's cool but because we have to share our stories (even if only to each other) to survive and to give others hope that "hey it could always be worse" and "if I made it through THAT, you'll make it through THIS." Our lives are a never ending dark comedy that only we are truly allowed to laugh at because after all, what else is there?

"We have to laugh to keep from crying"- Ntozange Shange

Again, this is not to say that my healthy friends' gestures and words are not truly appreciated, they are. And I am supremely grateful for anyone and everyone that cares enough to ask me about my health. But I don't feel as comfortable telling you (with sarcasm in my voice) about my bruised veins while I laugh about how my underwear got stuck on the IV pole when my husband went to go help me take a shower and we had to leave it there until the nurse came to change my painfully infiltrated IV for the 3rd time in 4 hours.

The conversations the chronically ill have amongst themselves will always be different than those they have with the healthy. Because the story about how your sister/mother/brother/uncle/past distant cousin had cancer and is now in remission so you "understand" what I'm going through- just isn't really true. Appreciated, but untrue.

I am fortunate to have an awesome support system- healthy and sick warriors. When I first got diagnosed I knew no one else with Scleroderma and it was hard- very hard. The internet is a wonderful thing for connecting people and for that I am grateful.

Truth is, no matter who the conversation is with, I feel that if at least I can find some comfort, peace, or laughter in the situation then that's all that matters.