#HAWMC Day 4 – Sharing Resources

Today’s Prompt:

• Create a “care page” – a list of your best resources that someone who is newly diagnosed could go to when starting to advocate for themselves or a loved one. Remember to include sites that lead to successful self-advocacy!

The first and most beneficial resource for me has been CCFA, which is the Crohn's and Colitis Foundation of America. It is a great organization that not only has a website with a lot of information, it has webcasts and patient forums. In addition, CCFA has patient support groups, which meet once a month, in most cities.  About twice a year, CCFA organizes a patient education symposium, wherein doctors hold sessions to cover a multitude of isses, from medications and side effects, to symptoms, to the latest treatment, to nutrition. A patient education symposium is a great way to not only get geat, up-to-date information, but also to network and meet fellow patients.

Through CCFA, I have met fellow Crohnies who have become good friends, and have served as a good support system.

#HAWMC Day 3 Wordless Wednesday

Today’s Prompt:

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

 
Frida Kahlo, Without Hope, (1945)

HAWMC Day 2 – Introductions

 
  Me: Hi, My name is Kat, and I am an illness hoarder. (You: Hi Kat!)

Because I am indecisive and an illness hoarder, I carry not one, but four diagnoses: Crohn's Disease, Fibromyalgia, Depression, and PTSD. They are all rather lovely, and I coudn't decide, so I chose them all! Haha.

This year marks my 2nd participation with HAWMC, and my 2nd year as a health activist. I'm not a formal activist in the sense that I'm bringing about anything other than awareness to my illnesses, via my blog. My writing makes me a health activist.

I write about my health because it helps raise awareness about: Crohn’s Disease, Fibromyalgia, Depression, and PTSD,  from a personal perspective, that goes beyond the “textbook case” of the diseases, by humanizing them. These chronic, debilitating, life-threatening illnesses don't just affect the body, but the whole person, and even beyond the person, the person’s surroundings, loved ones, friends. So far writing has been a cathartic experience for me. The ease with which I have written these pieces has surprised me, as it tells me that I have kept my feelings bottled up for far too long. The fact that these pieces flow out of me so easily reinforces my decision to write about my health. I have something to say that needs to be told. I have been silent for far too long, which has affected my mental health. Repressing my feelings is one of the symptoms of my depression. It is my hope that I can begin the healing process by writing about my health, to help me get closure on what I’ve been through in the past, as well as to help me grow.



I write about my health because it helps me connect with others.  I’ve tried to be as open as possible, in the hopes that others can relate to what I’m going through. To help them see that they are not alone, to help ME see that I’M not alone. To not only raise awareness, but HOPE. The responses and support I’ve received thus far have been great. I’ve heard from fellow Crohnies who find something in what I’ve written to which they can relate, which then opens up a discussion. And by talking about what we are going through, we begin the healing process. We see that we are not alone, we help each other cope, we feel hope, we feel encouraged, and the healing process is set in motion.



Some of my old posts that I feel capture my  identity as a Health Activist and about my condition,
include the following:

• #HAWMC Day 2: Quotation Inspiration  - in which I reflect on my ability to "give myself good advice but seldom follow it." 

• #HAWMC Day 3: Superpower - Fearlessness - in which I reflect on what it takes to be fearless, and realize that those of us who are chronically ill, already are.

• #HAWMC Day 5: Ekphrasis Post - in which I reflect on having looked death in the face because of complications following a surgery to treat my Crohn's disease.  

• #HAWMC Day 18: Open Book- in which I reflect on being vulnerable, and why that is such a challenge for me. 

• HAWMCDay20: There Is No Miracle Cure- in which I reflect upon there being no miracle cure for my illnesses, specifically Crohn's Disease, and all the feelings that arise as a result of living with an incurable disease. 

 ” 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.

#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 30: Word Cloud

#HAWMC Day 30 A Hipster Alice Word Cloud

@hipsteralice: Alice in Crohnsland for



http://www.whatthejules.com/april/351-hawmc-day-30-a-hipster-alice-word-cloud

#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