#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 Recap: It's not the End, It's only the Beginning

#HAWMC Recap HAWMC: It’s not the End, It’s Only the Beginning

I am sad to say goodbye to April because it’s been a great month. My participation with #HAWMC pushed me to go outside of my self. Pushed boundaries. Helped me expose myself. Feel a little bit more comfortable with who I am and who I am becoming. Gave me a tiny push that has set a change into motion. A process within myself that I feel is taking place. I’m learning to open up more, to be ok with showing who I am to others. It has also been a great platform to get me out into the chronically awesome and health bloggers community.


Writing has been such a great tool for me to cope with my health. I hadn’t kept a journal though it had been suggested to me by my therapist. Having prompts helped in that I had a place from which to start. I don’t have any particular “favorite” prompt. Some were a lot easier to write than others. For example, Day 1: Time Capsule, was hard as it was my first ever blog post. But once I got over that, my writing process was set in motion.


There were a few blog posts which were difficult to write, as they stirred emotions within me. But I never held back. I embraced the writing style which best suits me, which is “stream of consciousness”. I allowed myself to be vulnerable, open, honest. I wrote for myself, not thinking about who would be reading my blog.


Having said that, the most difficult blog post was the Third Person Post: Kat and Sophia. It took me all day to write, because I had to keep stopping. I was very emotional and I even had a panic attack. Lots of tears were shed as this piece was written. This only goes to show that my writing is a great way for me to process what I’ve been through. It has been a very cathartic experience for me.


Participating with HAWMC has taught me that I need to write. Because there is so much I’ve kept inside for far too long. By writing, not only will I start healing, but I will also grow. it is my hope that maybe my writing and my experience will help someone else, to help them see that they are not alone. That there is hope. But ultimately, I will write to help myself. First and foremost. And that is ok. Actually, it is more than ok. It is empowering.


I can’t write this without expressing my gratitude to Jules, for giving me SO much support. She set me up as a “blogger in residency” on her website, What the Jules. By doing this she made it possible for me to have a space on which to write, and she also mentored me. I had never blogged or participated in any type of project, such as HAWMC. When I agreed to participate, I had so many doubts about whether I would be able to do this! And I did! I wrote a blog daily. For a whole month! And it wasn’t as challenging as I thought it would be. Most importantly, I did something which intimidated me. I was afraid, yet I did it anyway. And I can now say that I faced that fear and I survived!


This marks the end of my participation with HAWMC but it is only the beginning for me. Now that I’ve faced my fear, I plan to continue writing.








” I write because there is a voice within me that will not be still.” - Sylvia Plath




I too have a voice within me that demands to be heard. We all have a voice, we all have our stories, and we deserve to be heard. I choose to use my experience as a tool to transform myself and grow. And each day I feel myself growing stronger and transforming into a chronically awesome individual who amongst other things, happens to have a chronic illness. I am discovering my gifts and talents. I have a chronic illness, but it does not have me. And that is a very powerful feeling.


@hipsteralice
Alice in Crohnsland
April Blogger In Residency for

http://www.whatthejules.com/april/353-hawmc-recap-hawmc-it-s-not-the-end-it-s-only-the-beginning

#HAWMC Day 29: Six Sentence Story- Broken Girl

#HAWMC Day 29: Hipster Alice’s Six Sentence Story

Broken Girl




The girl went to the hospital, where she was told they’d fix her.


But like Humpty Dumpty, once they took her apart, they couldn’t put her back together again.


After two surgeries they were able to patch her up, but inside there was a void that went untended.


The girl who was discharged from the hospital, was unlike the one who had been admitted, because she was now broken.


As the year passed she began a descent down the rabbit hole of depression.


The broken girl got lost as she wandered around, until she met kind people who helped her find a way out.










~~~~~~
@hipsteralice
Alice in Crohnsland
April Blogger In Residency for


http://www.whatthejules.com/april/347-hipster-alice-aka-kat

#HAWMC Day 28: The First Time I Walked Again

#HAWMC Day 28 The First Time I Walked Again

After being hospitalized for over 3 1/2 months, it was time for me to get out of bed and start walking again. Having been bed-ridden for so long, I’d not only lost muscle mass, but I’d lost the ability to walk. I could barely get up and move around my bed area. But part of treatment is making progress. I was in a skilled nursing facility and the goal was that I would be able to get moving again, by starting physical therapy. To prepare for physical therapy, part of the treatment plan included getting me up and out of bed. So that I would gradually build up stamina.


I remember the day, it was a Saturday. Two of my very good friends who had been very supportive of me during my hospital stay were visiting. The nurses suggested I go for a walk around the unit with them. I had a wheelchair and a walker. The plan was that I would walk as far as I could. I was very scared, but I felt comfortable with my friends. More comfortable with them than with my parents because with my friends I could let down my guard without fear of worrying them as I would with my parents.


Anyway the time came. My friends wanted to take me for a walk out of the unit down to the cafeteria, to grab coffee and chat. My room was at the very far end of the unit, which was on the opposite end of the entrance. I remember the fear and unsteadiness that came as I began taking steps. One friend walked next to me, and the other walked a few steps behind me, with the wheelchair, so that were I too feel unsteady, I could sit. I should add that one of my friends is a fellow Crohnie, and the other is a nurse. Needless to say, I was in good company. Safe. Anyway, I very slowly made my way down the hall. I was terrified. What if I fell? My legs felt very unsteady. I was pushing my walker and my friends were cheering me along. The entrance to the unit may as well have been in a different city, it felt I would never get there.


The nurses’ unit was the halfway point between my room and the entrance. It took all my strength, both physical and mental, to make it that far. By the time I’d reached the nurses’ station, I was out of breath and psychologically was near my breaking point. I was on the verge of a panic attack. I began to feel light-headed and dizzy. As I approached the nurses’ station, I made my way directly to the chairs that were in the area and sat down. My heart was racing quickly, I was shaking, my head felt light. The nurses congratulated me on having made it that far but inside I was an emotional wreck. It took all my strength to pretend I was fine and to act like the dizziness was the issue. I sipped water and chatted with my friends while seated in front of the nurses’ station. Then it was time to go back to my room.


I didn’t walk back. I was too weak and felt too unsteady. Of course, this raised everyone’s concern. It was agreed that it would be safest for me to be wheeled back to my room. I was very scared of falling. It’s natural to have that fear, as I wasn’t used to walking. It was as if I’d regressed to toddler hood and was once more learning how to walk.


That night, after my visitors had gone, I could no longer hold back the tears. Even though I’d taken some steps, I felt like a failure. I wondered if the day would ever come when I’d walk again. It was so frustrating to go from being so active, so ambulatory, to not even have the strength to walk down a hallway. I was afraid that I would never be able to resume my normal activity.


Eventually, I was able to walk further until I was able to ambulate with ease (and with the help of my walker). By the time of my discharge I was able to walk around with ease (with the aid of my walker). I remember going back a week later to visit my roommate. I will never forget the look of surprise and pleasure on the nurses’ face when they saw me walk in. I wasn’t using my walker anymore. And I was fine. It was as if I’d never needed a walker in the first place. It was a shared happy moment for all of us.




@hipsteralice
April Blogger in Residency
Alice in Crohnsland for

#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