#HAWMC Day 3 Wordless Wednesday

Today’s Prompt:

• Post a picture that symbolizes your condition and your experiences.

 
Frida Kahlo, Without Hope, (1945)

To label or not to label? That is the question.

“What labels me, negates me.”
― Friedrich Nietzsche

I've currently got my health diagnoses listed in my twitter bio. I've included that I've got: Crohn's, Depression, Fibromyalgia. I did this to help others with similar conditions to find me/follow. It's a great way to connect and is how I met the numerous Crohnies as well as others who are chronically ill. And as I'm learning, twitter is all about connecting/networking. It's a great tool and I love the many people I've met, many of whom I follow for my varied interests (amongst which is health related, but it's a very interesting and eclectic group)

Anyway, lately I've been thinking about my twitter bio and whether or not to remove the labels which identify me as someone who is chronically ill. On the one hand, it is a large part of my focus and what drew me to twitter in the first place. On the other hand, it brings me down each time I look at my bio, as it is a constant reminder of my illnesses.

The twitter bio is the first thing people read when choosing whom to follow (at least, that's what I do, I read bios, cos I'm nosey like that, Ha!) anyway, I don't just want to be thought of as someone who carries SO many illnesses. It's a wonder more doctors and pharmaceuticals don't follow me. Haha.

Though I follow A LOT of people I try my best to interact as much as possible. It's a great way to bring myself out of my moods and also to distract myself from my pain.


To label or not to label? That is the question.

It's all about how I identify. I am chronically ill, but that doesn't define me. Hopefully by now, people who follow me have seen beyond that. The fact that they continue to follow, must say I'm not all that bad? lol

I don't know where I'm going with this post. Feels more like a ramble.

I have to think about this more in depth. To get to the bottom (NO pun intended, Ha!) of what is bothering me about the labels/bio. Hmm. I feel it's too limiting. And the bio is essentially a person's first impression of me. It's not until they (hopefully) interact with me that they can get a better idea of who I am. It's not like I spend the majority of my time tweeting about my illness, symptoms, etc. I *could* just leave the #ChronicallyAwesome hashtag, which encompasses the illness but what goes beyond it. Hmm. I'm so tempted to go and remove those labels. Something to ponder.


I came across the Nietzsche quote as I was writing this:

" What labels me, negates me."

This is exactly where I was going with the post. It perfectly encompasses how I'm feeling about labeling myself as someone who has SO many chronic illnesses. Because in doing so, I feel that the illnesses overtake me.  And in doing that, I take away from who I am (whomever that may be).



For now I'm just Kat. aka. "Alice". 
A girl who fell down the rabbit hole,
got lost in Wonderland.
 and is trying to make sense of things.

#WegoHealth: "You think you know, but you have no idea..."

 

 

 

 

 

 

You think you know what it's like to live with Crohn's Disease; a chronic, invisible,  incurable illness, but you have no idea.

 

You think you know what it's like to miss me, but you have no idea what it's like for me to miss myself.

 

 

 

Those 3 dreaded words:

 

 "I miss you." 

 

They make me feel resentment and sadness.

Because as much as you may miss me,

I miss myself even more.

 

Most people would feel some kind of relief at being missed by their loved ones and friends. It signifies we are important to that person. That our absence is felt from their life. Because of the positive impact we left on them.

 

But what happens when you suddenly become chronically ill, and who you are, becomes who you were?

 

It's even more difficult when the chronic illness is also one which is invisible. Outward appearances are deceiving,

yet it is so difficult for so many who know me to grasp.

 

 

My outsides don't match my insides.

I may look the same

 but inside,

I'm a mess.

 

During this past year and a half I've been through a lot.

Much like a soldier who has gone to combat

 and returns a shell of him/herself,

I too feel the change in me.

I am no longer who I was.

 

 

I miss who I used to be.

 

It's horrible, because I know I can never go back.

I have a hard time looking at pictures of myself,

because I see a stranger.

It's almost as if I disassociate because,

I know it's me,

and at the same time,

she couldn't be more of a stranger.

 

 I grieve for her.

The Kat pre-surgery.

Whose life was about to change drastically.

Who was about to undergo

the most traumatic experience of her life.

 

A part of her died.

She was altered

fragmented

into

the before

and the after

 

So when you say you miss "me"

I feel sad and also afraid

because I don't want to disappoint you.

You may think I'm strong

brave

courageous

cheerful

 but inside I'm doing everything I can

to hold myself together

because I'm falling apart.

It's hard to pretend I'm ok

when I'm not.

 

So I end up avoiding friends and family.

Because it's too much work

to be pretend to be the Kat they know.

The one they are comfortable with.

The Kat who no longer  exists.

 

 I don't want to worry anyone

or let anyone down.

I don't want anyone's pity.

So I retreat into myself

and shut myself away.

 Because it's so much easier

than putting on a fake smile,

and say I'm ok.

I hate being fake.

It's not in my nature.

 

You think you know

what it's like

 to miss me,

as if I'm intentionally avoiding you.

 

When in reality,

I am protecting you

from seeing me fall apart,

from giving you the burden

of feeling you have to help

put me back together.

 

 

You think you know

what it's like

 to miss me,

 but you have no idea

Because as much as you may miss me,

I miss myself even more.

 

#HAWMC Day 27: 5 Challenges & 5 Small Victories

#HAWMC Day 27: 5 Challenges & 5 Small Victories

I am not a good list maker. Especially when it comes to listing “challenges” and “victories”! I understand the therapeutic value of this exercise. It is so much easier for me to list my weakness than my strengths (because I don’t want to feel like I’m bragging!). Yet at the same time, I’m struggling with listing “challenges” because it makes me feel like I am complaining. I am not a whiner, I don’t give myself pity parties. I don’t like to focus on the negative. I approach my health “challenges” by taking them in stride.


With that in mind, I am focusing my “Top 5 Challenges & Small Victories ” on health (both physical and mental) as that is what I’ve written about in my blog.


5 Challenges


1. Living with Chronic Illnesses


a.) Crohn’s, fibromyalgia, depression and ptsd (See how indecisive I am? I couldn’t just pick one illness/disease! Ha!)


b.) taking medications: side effects contribute to my fatigue/make me so sleepy and feel like a zombie


2. PTSD: causes me to avoid: people, places and things which are triggers.


3. Fibro: constant pain/fatigue


4. Depression: and with it the tendency to shut people out and withdraw.


5. Not being able to go to work due to my health condition (I know this is only temporary)


5 Victories


1. Allowing myself to be vulnerable. (this one is a crossover as it is both a challenge *and* a victory)


2. Starting therapy: addressing my ptsd & depression. Getting help. Admitting that I can’t do this alone.


3. Joining Twitter (yes, this IS a victory… and an addiction! Ha!) : feeling comfortable speaking with others about my health conditions in such an open forum.


4. HAWMC: blogging daily is a great accomplishment NOT a small victory, rather a great one.


5. The discovery that I am Chronically Awesome: that while I may experience illnesses, there is more to me than that.


Tell us what surprised you about these items, what you expected (or didn’t expect), what excites you.


What surprised me is the ease with which I am stepping outside of my comfort zone, by opening up to others, via twitter and my blog.


What I expected and what happened, was that it was very easy to list my challenges, yet difficult to list victories. I wasn’t surprised to find that I struggle with letting people in; due to my unwillingness to be vulnerable. Another reason is that I don’t want to be a burden or a “Debbie Downer”.


What excites (hmm. I don’t know if that’s the right word? Maybe a better term is ” What gives me hope” or “What motivates me” ) about this is knowing that what I’ve listed as “challenges” are obstacles which I can overcome.






@hipsteralice
April Blogger in Residency
Alice in Crohnsland for

#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 23 Health Activist Choice #2 Personal Responsibility

#HAWMC Day 23 Health Activist Choice 2: Personal Responsibility

“If I get through this year, kicking my demon when it comes up, I’ll face the field of life, instead of running from it the minute it hurts.” - Sylvia Plath


At my doctor’s appointment, which took place last Friday, I learned that I have Fibromyalgia. While it is one more diagnosis to add to my trilogy (Crohn’s, Depression, and PTSD), it is a relief. I have an answer as to why I have been experiencing so much body aches/pain and fatigue. And having a diagnosis means treatment. I was started on Gabapentin, which I began taking on Friday and to date has brought me relief. It is so reassuring to now have an explanation for why I’ve been feeling so horrible these past few months. Of course, it also means one more obstacle to overcome.


My doctor and I had a long discussion about the courses of treatment to help me treat the Fibro. While it’s not a life threatening illness, it is a chronic illness, which can be triggered by stress. As we discussed my treatment plan, my very perceptive doctor, addressed my need to not only take personal responsibility, but to face things which I’ve been avoiding. I have been avoiding so much lately. I’ve grown too comfortable by staying home (due to my anxiety about going out), yet by not challenging myself, I won’t grow. By not addressing my fears, I am not giving myself the opportunity to overcome them. I am letting my fears control my life. And in that sense, I am creating a block for myself. All the while that this discussion with my doctor was taking place, I was feeling increasingly nervous and resistant. I even felt resentful towards my doctor: how dare she push me towards something which makes me feel unsafe and uncomfortable! Ha! The nerve of her suggesting something which would be of benefit to me! ;)


I have had all weekend to reflect on this. I must hold myself accountable for all the things I’ve been avoiding. I have been hindering my growth. It’s so easy for me to choose to stay home, rather than go out and increase my anxiety. My anxiety set in last Thursday evening in anticipation of my doctor & therapy appointments on Friday! Even though I was able to get out of the house and drive myself to my appointments and afterwards to the pharmacy, the anxiety was my companion and it was very high. When taking my blood pressure, the nurse remarked on high high my pulse was. My hands were shaking (in part as a response to the coffee I’d consumed) out of my anxiety. Yet, for all the anxiety I felt, I got out of the house, went to my appointments, drove around for a bit, came back home. The point is that no matter how anxious I felt, I took myself out of my comfort zone, and I survived! While the worst of anxiety makes me feel as if I’m going to die (not being melodramatic here, a panic attack is awful) I didn’t! I survived it! And it was nice to be outside of the house.


My doctor made a good point. I need to challenge myself more. To take myself out, even if it’s for a drive, start out small and gradually build up to something larger. The point is to get out. So that I may re-join society rather than avoid it. Because that is what I’ve been doing all this time: avoiding. Running from myself. From my friends. Hiding in fear. But that is no way to live. To be in a constant state of fear. Prior to my surgery I was a highly functional person. I miss that. I want to go back to that. I know I’ve got it in me. But the key is to take the first step towards getting back to that place. I refuse to let my “limitations” prevent me from living as full of a life as possible. I would be lying to myself if I said that my “limitations” are defined by my illnesses. That is not true. My only limitation is myself. I get in my own way. I am not holding myself accountable.


My goal for the week is holding myself accountable for things I’ve been avoiding and what I need to do.


Per my newest treatment plan for my Fibromyalgia, my doctor has suggested I look into: yoga/meditation/acupuncture classes. Per my therapist, my goal for the week is to follow up on a referral to a psychiatrist who specializes in pain. I am also to set up treatment with a therapist who specializes in Cognitive Behavioral Therapy.


It’s a reasonable goal as most of it consists of making phone calls. I have a particular clinic (where I feel safe & comfortable) that offers acupuncture. My goal is to go at least twice this week to receive treatment. It will be good for me as it will not only get me out of the house, but acupuncture always leaves me feeling very relaxed and pain free.


There is a lesson here. Much like the Sylvia Plath quote I’ve included, my lesson is that I must stop running from my fear and anxiety. Most importantly, I must stop running from myself. Only then will I be able to gain the strength, confidence and courage to live rather than hide. To let myself out of my cage and live life. It is time. I acknoweldge it is a process. I’ve got a long way to go. It won’t be easy. But I believe I’ve got it in me to overcome these obstacles.






@hipsteralice
April Blogger in Residency
Alice in Crohnsland for

http://www.whatthejules.com/april/337-hawmc-day-23-health-activist-choice-2-personal-responsibility