#HAWMC Day 1: Getting Started

Today’s Prompts:

• Why you write – tell us a little bit about why you write about your health online and what got you started.
• Why HAWMC? This is our third year of the Health Activist Writer’s Month Challenge – why did you get involved this year? Are you a newbie to #HAWMC or a veteran?

 This year marks my second EVER participation w/#HAWMC. Last year I was very hesitant about participating because a.) I'd never written about my health, and b.) to do so for a whole month felt beyond overwhelming. Yet, not only did I do it, I'm back for more! Last year's participation turned out to be very therapeutic for me. It was challenging to gather the strength and energy to write on a daily basis, however the prompts proved rather helpful (yes, even those to which I felt a bit resistant). I found the prompts to help me remain on point, and I sometimes need that structure, especially on those days in which I have writer's block.

The only reason I ever got started writing (and continued to do so) was because of my #chronicallyawesome superwoman mentor, Jules (check out her blog, or follow her on twitter) This woman is ah-mah-zing! really and truly! love her! Jules not only gave me a space on her blog for my #HAWMC posts, she provided me with endless support and encouragement. Without her mentorship and support, I don't know that I would've made it as far as I did. But I didn't want to let her down, so I blogged away. And she was right to encourage me to do so, because writing proved to be very cathartic. It helped me look at my life in regards to living with Crohn's Disease, Fibromyalgia, and PTSD. And by that I mean, it validated my existence, because I was able to reflect on what it was like for me to overcome so much on a daily basis. Because let's be honest, I am my own worst enemy, and don't give myself enough credit.

Through my participation with last year's #HAWMC, my writings became not only a part of the health blogging project, but served as my online journal and even led to the creation of this blog . I enjoyed my participation w/#HAWMC and was sad when it ended. I was able to keep up my writings on my blog for about a month or two, and then.... I don't know what happened. I got lazy, I slacked. I will not make up any excuses. Life happened. A lot of changes have taken place since last year, and I'm hoping that by participating again this year, I will be able to get out of my writer's block, and also reflect on and process all my experiences from this past year.

Whilst I don 't consider myself to be a newbie, I'm far from a veteran, though when it comes to my health experiences, I am a veteran, complete with battle scars! In the year since I last participated with #HAWMC there have been many changes where my health is concerned. In some ways things have changed considerably, and in some ways, things feel as if they are the same. #HAWMC serves as a great platform to help me self-reflect and process, as well as record, all my experiences. Stay tuned.

**********Spoiler alert: I survived***********

that awkward phone call

That awkward phone call


that I just received
from a friend
I've had since the 5th grade.

Not said out right,
but clearly implied,
was,
" I miss you".

The irony,
that just hours earlier,
I wrote a piece
about being missed.

So the phone call
was very awkward
and uncomfortable.

 It ended awkwardly
with
 "let me know when you are receiving visitors".

Ouch! That really stung.

I was tense the whole time.

She brought up facebook
(on which I have gone M.I.A.
since summer of 2011!
at which point
I ran away to twitter)

You can run, but you can't hide.
 Life exists, and it is calling.

How much longer
can I stay
down this rabbit hole?
I like it down here,
in my world.
It is safe.


But my world
includes the people
whom I've excluded
pushed away
Hurt.

Because I am cognizant of how much I've hurt people.
And I feel so much guilt and shame over it.

I owe so many people apologies.

My departure was very sudden.

The onset of depression
crept over me
caught me unaware
so that it was a very
gradual process
that overtook me
in which I lost interest
in everything

Speaking to people
began to feel like a chore

So many questions
about how I was doing
every
single
day.

As if my pain
and my condition
miraculously improved
in the course of
24 hours

Then there was the energy
which I did not have
to reciprocate
and get involved
in their daily lives as well
to ask questions
to engage in conversations

I couldn't engage in life

engaging
was so difficult
that I withdrew

so many unanswered calls
texts
emails

so many people
with whom I lost touch
people
who care about me
and must be feeling
hurt
confused
shunned

when they did nothing wrong


It's not you, it's me
 it really is me.
Or my depression

Depression
that is like a
captor
that has me locked away
from reality
imprisoned

but eventually the captive
must be freed
if not by will
then by force

I have to fight back
I am fighting back
daily

I give myself credit for that
slowly I am coming out of it
that depression

I am not the person I was a year ago

the person who "ran away" from facebook
and the person I am now
are two completely separate individuals
and yet they aren't

Is this a lie I am telling myself?

Is it that I am someone different
or that I am denying
and repressing a part of myself
the part
that is too painful
for me to acknowledge

There is a world out there
that I do belong to
whether I choose to accept it or not

While it is safe to be
down the rabbit hole
I can't stay here forever
it is not therapeutic

I can't hide behind
my diagnoses

And I realize now
that it is
 exactly 
what I've been doing

Yes,
I have PTSD
but how will I heal
if I don't address my fears
my triggers

Because the people,
places
and things
which I am avoiding
are
the people
places
and
things
which I need in my life

Maybe this call was a reality check for me
a reminder that I am missed
because I am wanted
and because I want it too.

I want to rejoin the world
I have changed
each day I grow
I've met new people
but I can't erase my past

Most importantly
I am not alone
I belong to a community
to my family
my friends

Even though I get in my way
though I lock myself up
and don't allow anyone else in

I can't blame the depression
it is not the captor
rather
it is me

I need to work on
bringing myself out
of this cage
and destroying it
to prevent myself
from feeling tempted

because once I lock myself up
it is so tempting
to throw away the key
and never
let myself out

yet that is no way
to live 
and it is not what I want

#HAWMC Day 24: Health Mascot

#HAWMC Day 24: Health Mascot: Hipster Alice

For today’s prompt – give yourself, your condition, or your health focus a mascot. Is it a real person? Fictional? Mythical being? Describe them.


Bonus points if you provide a visual!


Rather than choose a mascot for a specific health focus, I’ve chosen to give myself a mascot, which will represent my blog. This makes much more sense, as my blog focuses on more than one health concern: 

Crohn’s/Fibromyagia/Depression/PTSD

and also, because it is a more holistic approach. I’d like to be seen as more than the disease/illnesses I have.






I have chosen the theme of Alice in Wonderland but with a few twists. I have a tumblr blog (which I need to update) which I titled “Alice in Crohnsland”. Thus, it makes sense
that my Health Mascot would be Alice. I also have a twitter account: @hipsteralice.

Therefore, as a way to unify my tumblr, twitter account, and this blog, I have chosen to utilize the picture from my twitter: Hipster Alice. In this way it is much more consistent, as I am recognized on twitter by both the Hipster Alice name and picture.


Do you think the creation of a mascot will enhance your blog and your writing? Did it help you to visualize your role as a Health Activist better?

It will enhance my blog in that it will make it recognizable to people who already know me and follow me on twitter.

@hipsteralice
April Blogger in Residency
Alice in Crohnsland for

http://www.whatthejules.com/april/338-hawmc-day-24-health-mascot-hipster-alice

#HAWMC Day 20: There is No Miracle Cure

#HAWMC Day 20: There is No Miracle Cure

Write a news- style article on a miracle cure. What’s the cure? How do you get the cure? Be sure to include a disclaimer.

*Le sigh*

THIS is NOT an article I am interested in writing. Here’s why. I am not a doctor nor am I a scientist. I can’t just conjure up a miracle cure, out of the blue. I am a perfectionist. In order for me to even entertain the notion of “finding” a miracle cure, I would need time to do extensive research, because I would want this miracle cure to be as realistic as possible. I could take the easy route and say one day, I’m walking in the woods and stumble upon a bottle, which contains a magic potion that is the cure to Crohn’s Disease. Or as Alice, once I’ve dusted myself off after having taken my tumble down the rabbit hole, and wandered around in Wonderland, I arrive at the Mad Hatter’s Tea Party. At the party I drink tea and eat cake and I am miraculously cured of Crohn’s. It would be fun to take the time and daydream, imagine and create the perfect fantasy setting, in which I would not only find the cure but experience it myself. And having found it, I am thus the heroine who saves the day, and cure all my fellow Crohnies and IBD sufferers.

How can I come up with a miracle cure when I have not yet healed myself? How can I find a miracle cure? Wouldn’t it make sense to first find the cause of Crohn’s Disease, which to date has not yet been found? How can I find the solution without first taking a look at the cause?

I can’t do this. I can’t do this to myself. To pretend “what if” I found the cure. Because it’s not going to happen. I’m not trying to be negative, rather, I’d like to be realistic. Also, I don’t see how this particular exercise would be of benefit to me. Maybe I’m being too close - minded? Or maybe it’s the fact that I have two upcoming appointments tomorrow (with my therapist and with my primary care provider). I have PTSD worksheets that I need to work on. I am feeling anxious about going to the doctor, as well as having TWO back-to-back appointments! It is a lot! And these appointments ALWAYS make me SO anxious! Why? Because they trigger my ptsd.

I have to write because I am having so much anxiety right now that I need an outlet for it. I have completely gone off topic, but it is what it is. I have not completed my PTSD worksheet like I was supposed to which makes it pretty evident as to where I stand with it. I am still so raw and vulnerable, I’m so scared to open up those wounds, to re-live memories which I’d rather put out of my mind. People tell me that I have courage because I’ve shared so much on my blog, yet I feel like a complete coward. I plan on sharing my blog posts with my therapist, so that she can see that I am doing some work, to have evidence that I’m not completely avoiding my ptsd work. To validate myself, as I am doing work on myself, yet maybe not the work I should be doing. Or is it that I need to take my time to get there? Am I stalling and avoiding? Or am I leading up to feeling strong enough to work on things that require further exploration?

As I write this I’m feeling so self-absorbed!  Is this something that is normal for people who are in therapy? I know it’s good to do work on myself to overcome my ptsd and depression, yet I can’t help feel that I am very egocentric. I look on my twitter stream and see real issues: social injustice, wars, poverty, and then I look at myself and my concerns seem so trivial. It makes me feel ashamed and guilty, because my problems are nothing compared to what other people are suffering. I wonder if this is my depression talking or if it’s me? I acknowledge that it is important to address my mental health, yet sometimes I feel guilty. Because my depression, pstd, and anxiety have over-taken my life, thus preventing me from feeling like I have an active role in society.

Displaced. That is how I feel. Both physically and mentally, displaced. I don’t know where I fit in, because there is nowhere for me. I get lost in my wonderland (my head, my world). I’m so afraid. I don’t know what is in store for me in the future. I’ve got so much guilt. I feel guilty because I’m home bound and there is so much I could and should be doing (Gah! There I go, using two words which I don’t like! I don’t like that last sentence. At all.) I’m in mourning. I grieve for who I was and the life I led before it became disrupted. The before. It’s as if my life is now divided in half. The before: when I was working. Yes, I was sick and in pain, yet my life had value. And the after: the person whose life fell apart and is left having to pick up the pieces, left to accept that her life will never go back to what it was. The person who finds herself having so many thoughts that are running amok in her mind. I don’t know. And it’s this “not knowing” that leaves me feeling so powerless. Afraid. Stuck. Unable to move forward. Which then causes me so much anxiety.

This is how I feel right this very minute. These are the thoughts that torment me. I know I’ve got so much work to do. I have to be gentle with myself. I have to have hope. Yet I feel I’m in a dark place right now. It’s ok, because I’m feeling these feelings. Yes, they are making me uncomfortable. But I know that I will find my way back out. And I’m not alone. I have so much support.

Healing is a process. It is not linear. I will take one step forward, and two steps back, yet the importance is that I keep moving. And I am. The day will come when I can once again find my place. I’m not there yet… but I’m traveling. I refuse to give up.





@hipsteralice
April Blogger in Residency
Alice in Crohnsland for

http://www.whatthejules.com/april/331-hawmc-day-20-there-is-no-miracle-cure

#HAWMC Day 19: Dinner Guests

HAWMC Day 19: Dinner Guests

Who are five people you’d love to have dinner with (living or deceased) and why?

1. THE Chronically Awesome Jules (my chronically awesome mentor <3 )
2. Frida Kahlo (Artist)
3. Dr. Burril Crohn (for whom Crohn’s disease was named)
4. Dr.Rachel Naomi Remen (Fellow Crohnie, Doctor, Author, and an Inspiration!)
5. Marian Keyes (Author of fiction, who like me, carries a diagnosis of depression)


Jules is someone who I just *clicked* with immediately. She is truly such an inspiration to me and is also someone whom I look up to. Because of the challenges she has faced and overcome in her life, she is tough, she has a take-no-prisoners approach, she tells it like it is, and doesn’t tolerate b.s.! She is also someone who is not afraid to open herself up and it is reflected in her blogs. She is a tough cookie with a heart of gold. I LOVE that about her. In the short time I’ve known her, she has shown me so much kindness, support, compassion. I see myself in her. She is helping me gain confidence in myself. Were it not for her encouragement and support, I would most likely have flaked on participating with HAWMC. But for whatever reason, Jules felt it was something I should try. She didn’t push me, but she made it possible by creating a safe place for me on her blog. It has meant so much to me, as I am new to the blogging world. I hope this is the beginning of a beautiful friendship with Jules. I have a feeling it is. And I treasure it. It’s an honor to meet someone as special as Jules! I have hopes that one day we WILL meet because she is awesome and I want some of her awesomeness to rub off on me! <3 (Also: Denny and Truman would be guests . They are so cute and I want to cuddle with them and give them belly rubs! That is all! It would be a playdate because of course, as Bella would be there. What? Like I would have a dinner and not bring MY furreh babeh dog? As if! )


Frida Kahlo is someone whom I greatly admire. For who she was, for what she overcame, for what she created. I have visited her house/museum, looked at her works of art, read about her life, watched movies and documentaries about her. Yes, I sound like a crazy-obsessed fan. Yes, I am. ;) I would have liked to have known her in real life, to have listened to her speak. To hear her thoughts about life, about being a strong woman. An individual who overcame the betrayal, of not only her body, but of the man whom she loved. She faced so many challenges, hardships and heartbreak, yet she never gave up. She lived life, on her terms, to the fullest. She was fearless. She represents the woman whom I’d like to become. But there is more to her than what I have listed, what she is known for, what is idealized. I want to know how she got to be so fearless. She had SO many hardships in her life, yet always moved forward. That is the Frida we think we know. But deep down inside, what were her fears, her doubts, her insecurities? Most importantly, how did she overcome them? What made her the strong woman and artist I so deeply admire? What advice would she give me? ( Upon further reflection this is a question which I’d ask all my female dinner guests)


Dr. Burril Crohn is the doctor for whom Crohn’s disease is named, therefore it goes without saying that he’d be a guest at my dinner. I’d like to learn first hand about how he discovered this illness as well as what his thoughts are on how far we have advanced with treament. I have no doubt that my fellow dinner guests and I would pick his brain! And my first question to him would be why he couldn’t have chosen a nicer name for this disease. I know that diseases are sometimes named after the doctor who “discovered” them but couldn’t it have been something that sounded nicer than Crohn’s? Like, I don’t know, ” La maladie de Renoir” (Yes, I KNOW it sounds a bit, I dunno, pretentious, but I like how it rolls of the tongue. Also, apologies to Renoir for naming a disease after him, no offense meant, I hope). Other name options which I’ve considered are: “La maladie de Monet”, “La maladie de Cezanne”, “La maladie de Matisse.” I realize I have spent much too long in my pursuit of renaming my disease (as I write this it I am in the midst of a bout of insomnia and it’s 3:30 am, therefore, I have the time to entertain these thoughts! Haha!) but I really wish there was a more glamorous term for this disease. Yes, I KNOW I’m sounding vain and whiny here, but it is MY fantasy, so this stays! I would hope that Dr. Crohn is not too intimidated by the fact that he will be the only male present at my dinner (oh, my bad, that is not true because Denny and Truman will be in attendance!) I have no doubt however, that Dr. Crohn would be quite entertained by the women because they are intelligent, witty and funny. He would be very pleased! ;)


Dr. Rachel Naomi Remen is someone who I look up to and whose work I admire. How I came to know of her was quite serendipitous. I was in a Goodwill store scouring the book section. I had walked by the store that day and something pulled me in. Anyway, I *always* go directly to the book section (books are MY drug! My life source!) and while browsing, I randomly picked up her book, My Grandfather’s Blessings, read the sleeve and thought it sounded interesting. I started reading it when I got home and immediately became engrossed. It wasn’t until a few chapters in, that I got a major shock when Dr. Remen revealed that she has Crohn’s disease. She went into detail describing not only the pain and suffering she experienced at the hands of living with Crohn’s, but showed the strength and resilience of a human being, determined to overcome this huge obstacle. She did not let the diagnosis of Crohn’s prevent her from her dream of going to medical school. And she did it. Even though it wasn’t easy. She became gravely illl and had many flares along the way. She battled the darkness of depression that those of us who are chronically ill experience. But she did not let that stop her from living, from realizing her dreams. At the core, is a very strong, very compassionate woman. (We ALL are! ) Oh, by the way, this would not be my first meeting with her. In another stroke of serendipity or fate, I learned that she was having a book signing, and also reading passages from her book, My Grandfather’s Blessings. OF course I went! And afterwards I stayed and she graciously signed my book and even gave me the most beautiful inscription. She told me I was a blessing. She encouraged me to not give up. That I have a purpose. That I am special. Isn’t she a sweetheart? Doesn’t she sound like someone you’d like to meet? She is so sweet, very soft spoken, yet she has such a presence. She truly cares about people. She would be a very special dinner guest.


Marian Keyes is an author of fiction in the genre known as “chick lit ” (which, by the way may have the connotation that it’s about romance and happy endings. I am NOT the type to read those books!) but her books have a twist to them. Marian incorporates parts of herself into her characters, and in that sense makes them real, they are flawed, vulnerable, they experience challenges, hardships, which lead them to grow. Some of the books have “happy endings” and others don’t. But they are real. Her books have made me laugh and cry. So if her books are “chick lit” they are “dark chick lit”. After all, not only do her characters experience difficulties, but Marian is a feminist and her characters are strong women. I have always found a character and a story with whom I identify. And even beyond the characters in the books is the author herself, who also suffers from bouts of deep depression. She is very open and honest about discussing both her diagnosis of Clinical Depression and that she is a recovering alcoholic. Here is someone else, who like Frida, like Jules, like Dr. Remen, has experienced and embraced the darkness in life, who has fallen down the rabbit hole of depression. She is very open and honest about it. I’d like to meet her because if she is anything like the characters she writes about (which I have no doubt that she is) then she too would be someone who is not only a lot of fun to be around (as she is very witty, funny and has a good dose of snark) but is able to channel her pain and suffering creatively. She did recently take a break because her depression was so severe that it left her unable to write, but she is now back. I recently found her and started following her on twitter. She lives in Ireland, but I’m sure she would make the trip to the United States to meet one of her greatest fans! ;) (Wait, what?! Why should she come to us? Why not us go to her? Or better yet, compromise! We could have the dinner in Spain! (Tapas, Paella and Sangria Dinner! Nom nom! Yes, please!)


I now really, really want to make this dinner party happen! *shakes fist at #HAWMC for making me fantasize about this dinner* Hmm. It could happen. I could invite the Long Island Medium (I forget her name, but her show is on TLC) so that she can channel both Frida and Dr. Crohn, I’m sure she could give me a two-for-one deal! Also, this would then free up one seat at the dinner table…and I could then bring my date, Johnny Depp! Perfect! ;)





@hipsteralice
April Blogger in Residency
Alice in Crohnsland for

http://www.whatthejules.com/april/329-hawmc-day-19-dinner-guests

#HAWMC Day 9: Keep Calm and Remain Hopeful

#HAWMC Day 9: Keep Calm and …

As someone who is battling an incurable disease, along with depression, it is so easy to feel hopeless. To feel down. Yet I’ve learned that no matter how down I may be feeling, it gets better. What I’ve learned thus far and have found to be a recurring theme in my writing, is that I have hope. The ability to remain hopeful may sometimes be great and other times not so much. Therefore, this poster, ” Keep Calm and Remain Hopeful”, will serve as a reminder to not lose faith in myself and in my ability to make it through whatever challenges I may encounter.







@hipsteralice
April Blogger in Residency
Alice in Crohnsland for


http://www.whatthejules.com/april/308-hawmc-day-9-keep-calm-and