#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 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***********

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.

A friendly visit, an Intervention, or an Ambush?

Yesterday I received a call from some friends whom I've not seen/talked to in over a year... whom I've been avoiding. Anyway, they called to tell me they are coming to hang out with me today. To. tell. me. I feel so violated: it feels more like an ambush or an intervention, than a visit, by the way in which their wording was phrased. I was not included in the decision. I didn't get to say, "Sure, come on over." Because I wasn't given a choice. I was told. As a control freak, THIS is not easy for me to accept. The loss of having any say in the matter, leaves me feeling so unsettled.

I am feeling so many emotions right now. I'm feeling major anxiety as my PTSD is being triggered, as well as a loss of control (or the illusion that I even have any control to begin with). I have avoided these particular friends for a reason. And now, to see them, after all this time... is in fact triggering my PTSD. Big time.

I did not speak up for myself, out of guilt. I feel I owe it to them to have them visit me. I have been selfish in avoiding them. Yet, I feel resentful, because I don't feel ready. I also feel overwhelmed, because it's not one friend coming to hang out w/me, but THREE!!! Holy space invasion, Batman! THIS is why it feels like an intervention/Ambush. The guilt is furthered by the fact that I know my friends' intentions are good (then again, "The road to hell is paved with good intentions", but I digress).


My thinking is so distorted. It's to be expected, as it is part of my PTSD, but that doesn't make it ok. Though my initial response is resentment, at the core, is fear. Because the visit will lead to the inevitable question of why I've been avoiding them. I will have to expose myself, and once again, become vulnerable. But of what am I afraid? These are my friends, who love me, who care so much about me, who visited me frequently whilst I was hospitalized. My friends, who continue to love me, despite how badly I've treated them. Who still care about me, though I did my best to push them away. I should be excited to see them, yet as I type this, I am in tears.


The impending visit upsets me because I will have to expose myself and be vulnerable. I will have to be honest, by letting down my guard. I will have to lose the pretense that I am strong (only a pretense which I put up for others, not for myself). I fear that they will see my weakness. I can no longer hide. I am being pulled out of my comfort zone, against my will. I am fully aware that being vulnerable, that letting down my guard, does not make me weak. But I have yet to fully accept this. *Le sigh* I am my own worst enemy. I hold myself back. I know I do this, yet it is my biggest challenge.


Their visit will inevitably lead to my wounds bleeding once more. These wounds which barely have a scab over them, will once more become open. Or will they?


I am dealing with an internal conflict right now. I am cognizant that I must first acknowledge and identify my distorted thinking. Here I must practice some Cognitive Behavioral Therapy( CBT) tactics on myself. My distorted thinking is leading me to catastrophize the whole thing: I am focusing on the worst that can happen. Thus it becomes a vicious cycle that perpuatates the feelings which further arouse my PTSD. Now that I've identified where my thinking is taking me, the next step is to work through this. What is the worst that can happen? I break down and cry in front of them. And then what? They comfort me. And show me the support I need and which I've been too proud to accept. THIS!!!!

The next step is to acknowledge how great of an ice-breaker this visit will be. As it will be an exposure to one of the things which triggers my PTSD. Because my triggers are: people, places and things which remind me of my hospitalization. Therefore, it makes perfect sense that I would avoid people whose presence takes me back to that time. But for healing to take place, I must fully participate in overcoming that trauma  (hmmm. I dunno if that is the term I'm looking for. Can PTSD be fully overcome? Ever? Must further look into this) . Or, if not fully overcoming, at least take a step in that direction. Because by avoiding, I have been holding myself back. And keeping people out, which is not fair to them. Or to me.


One of the techniques used in CBT, is Aversive Conditioning, whereby an individual is exposed to his/her triggers (as many times as necessary) until that trigger becomes "normalized" thus decreasing any response. For me, this will be achieved through resuming contact with friends, as well as through getting comfortable with hospital environments. It  means accepting my fear/aversion to certain people, whilst also  acknowledging  that no harm will come to me.

 

Can I focus on the positive, rather than the negative? Instead of feeling dread and resentment towards my friends' impending visit, can I instead feel excited and look forward to it? I have the choice that will affect how I make it through the rest of the day. I choose to acknowledge my fears yet also look on the bright side. Today's visit will be significant because it will help me re-establish connections with my friends. It is time. I have been stalled for far too long. I choose to look forward to today with excitement (albeit nervous) . It will be a good thing, for me and for them.

 

On a lighter note, to borrow from some of my favorite Twitter hashtags: #GirlsGotIssues thus I shall be #ForeverAlone. Obvious attempt at using humour as a defense mechanism is obvious!

I am label free. In other words, a generic version of myself.

  Rant alert.

 Should you choose to proceed and read this , you have been warned. lol. sigh.



I reject The Spoon Theory and any concept which has me focusing on what I can't do and  which leaves me feeling like a failure, because of my "limitations" (lack of spoons). And I can't with the concept of losing a spoon for tomorrow.
It doesn't give me any hope to know that tomorrow is going to suck because, I'm already "lacking" the usual number of spoons I need to get me through the day. WTF kind of negative thinking is that?

 Rather than "lose a spoon" for each task I'm unable to complete, I choose to instead give myself credit for all of the little things I can do. That is much more therapeutic for me.






 I acknowledge how ranty this may come across to some. Who am I kidding? It is ranty. This is how I'm feeling, and I own it.  In no way do I mean disrespect to the creator of The Spoon Theory or anyone who follows it.  I am cognizant  that many people do find the spoon theory beneficial, and kudos to them. Whatever works for each individual. The last thing I want is to come across as close minded or intolerant. That is not supportive of those of us who are chronically ill. And we need the support and understanding. So much. Especially from each other.

But I have to go with what works for me. And "The Spoon Theory" doesn't.


"I am myself and I am here." - Sartre

That is all.





*Update

This is now like the millionth edit (maybe I'm exaggerating a bit, yes I tend to do that. Shocking. I know.) Anyway. Yesterday I wrote from a place of frustration, and published it. Once it is out of mind, it is out of sight. I forget that people sometimes read the blog. On rare ocassion, I suppose. Haha. Anyway, upon reading the comment left below, I wondered if I'd been too negative. Which would be ironic, as I was complaining about how negative I found the Spoon Theory, and in doing so, I too was being negative. Here I go again, ranting about a rant. How meta. I really need to work on a filter. lol.   

Also, I worry that I may have been to simplistic or one-sided in how I presented the Spoon Theory? This is highly probable, because what do I know? I live in a perpetual state of confusion. lol



As I recently told someone when describing my blog,

" It is like I vomited my emotions all over the place."

Did I really just quote myself?! *facepalm*

Like everything in life, we take what we we need, what is useful. I don't completely reject everything about The Spoon Theory. I do like how it uses the metaphor as a way of helping those who are not ill understand a day in the life of a chronically ill individual. I also identify with the "But you don't look sick" concept, wherein the fact that I may "look" well doesn't negate the fact that I am sick and may be feeling it. Looks are deceiving. Especially for those of us living with "invisible illnesses."

I have many twitter friends who identify as "spoonies" and the last thing I'd want is to offend any of them. I am grateful for them and how supportive they've been. I reiterate, that for now, I really am not labeling myself, because I already carry my diagnoses, and that is more than enough, lol.