Neither an Ambush, nor an Intervention but a Friendly visit.

 

(originally written on Thurs, June 7th)

 

 

 

 

I am feeling so good right now. And also quite guilty.

My friends just left. It was such a great visit. My first thought is that I am so blessed to have such amazing, supportive people in my life.

Upon seeing them, my first reaction was happiness followed by tears: of guilt, of happiness to see them because I had missed them so much.

The visit consisted of catching up, as it's been a long time since I've seen them. But the main message that I got was that they are here for me. That I am not alone. My friends offered to support me to doctor's appt's. They even offered to drive me. How lucky am I?

I told them about my PTSD, of which they were supportive and understanding.

I am just so beyond honored to reconnect with these amazing individuals. To receive their love and support is very humbling. Because a part of me feels that I don't deserve it, after how I've treated them. Yet, this is, again, distorted thinking. I do deserve their friendship. I am worth it. We all deserve to have people in our lives who care about us, support us, LOVE us.

I discussed with them, what I've been thinking about lately, which is surgery. It's been on my mind all week. Anyway, I've got an appt. w/my NP tomorrow. I plan on discussing this with her. I finally feel ready, both physically but most importantly, emotionally. It has taken me a long time to get to *this* place. To finally say, I am ready to take the next step. My decision is further validated after today's visit w/my friends. One of them, who is a very take charge kinda gal, offered to go to my GI and Surgeon appt's. I would normally wave it off, with the excuse that I can handle it on my own, and that I don't want to bother anyone. But I am no longer going to deprive myself of my needs. Instead, I thanked her and I *will* take her up on the offer. Because I do need the support. I am moving forward. Today's visit was a small step forward, but it was a step. As such, it must be acknowledged.

I was not looking forward to this visit. At all. I felt so resentful because I felt threatened. After all, it meant stepping out of my comfort zone. I had to step out of my cage. I contemplated calling them last night to ask them to reschedule, but I didn't. I honor my commitments and hate cancelling -- the only exception is if I'm really in a lot of pain-- therefore I allowed myself to do something of which I was afraid.

I felt guilt and shame, because by avoiding my friends, I hurt them. Seeing them also meant confronting my past, because they witnessed all that I went through whilst hospitalized. My fear was that in seeing them, my PTSD would be triggered. I was afraid that I would have flashbacks.

What I learned from the visit was that I am loved. How could I resist that?


I also agreed to meet w/them on Tuesday evening, to go to a support group. We'll most likely go to dinner before or after the meeting. Making these plans is a big deal for me. I am once again going to step out of my cage for a bit.

I must destroy this cage, because this is preventing me from connecting with people who can help me.

I am healing, which is such a slow process. Yet why rush it? As I talked with my friends, I was able to reflect on what has kept me away.

My commitment to them is to make myself available, as opposed to hiding. I own the fact that I push people away when I most need them.

Not only are they my friends, but one of them is a fellow patient. All of them are connected somehow to my disease.


Today was a very good day. I am so glad that I faced this fear and overcame it. I know I've got more things to do as I work through my PTSD and Depression. I can and will do this. At my own pace. I have already begun taking steps.

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.

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 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