#HAWMC Day 20: There is No Miracle Cure

#HAWMC Day 20: There is No Miracle Cure

Write a news- style article on a miracle cure. What’s the cure? How do you get the cure? Be sure to include a disclaimer.

*Le sigh*

THIS is NOT an article I am interested in writing. Here’s why. I am not a doctor nor am I a scientist. I can’t just conjure up a miracle cure, out of the blue. I am a perfectionist. In order for me to even entertain the notion of “finding” a miracle cure, I would need time to do extensive research, because I would want this miracle cure to be as realistic as possible. I could take the easy route and say one day, I’m walking in the woods and stumble upon a bottle, which contains a magic potion that is the cure to Crohn’s Disease. Or as Alice, once I’ve dusted myself off after having taken my tumble down the rabbit hole, and wandered around in Wonderland, I arrive at the Mad Hatter’s Tea Party. At the party I drink tea and eat cake and I am miraculously cured of Crohn’s. It would be fun to take the time and daydream, imagine and create the perfect fantasy setting, in which I would not only find the cure but experience it myself. And having found it, I am thus the heroine who saves the day, and cure all my fellow Crohnies and IBD sufferers.

How can I come up with a miracle cure when I have not yet healed myself? How can I find a miracle cure? Wouldn’t it make sense to first find the cause of Crohn’s Disease, which to date has not yet been found? How can I find the solution without first taking a look at the cause?

I can’t do this. I can’t do this to myself. To pretend “what if” I found the cure. Because it’s not going to happen. I’m not trying to be negative, rather, I’d like to be realistic. Also, I don’t see how this particular exercise would be of benefit to me. Maybe I’m being too close - minded? Or maybe it’s the fact that I have two upcoming appointments tomorrow (with my therapist and with my primary care provider). I have PTSD worksheets that I need to work on. I am feeling anxious about going to the doctor, as well as having TWO back-to-back appointments! It is a lot! And these appointments ALWAYS make me SO anxious! Why? Because they trigger my ptsd.

I have to write because I am having so much anxiety right now that I need an outlet for it. I have completely gone off topic, but it is what it is. I have not completed my PTSD worksheet like I was supposed to which makes it pretty evident as to where I stand with it. I am still so raw and vulnerable, I’m so scared to open up those wounds, to re-live memories which I’d rather put out of my mind. People tell me that I have courage because I’ve shared so much on my blog, yet I feel like a complete coward. I plan on sharing my blog posts with my therapist, so that she can see that I am doing some work, to have evidence that I’m not completely avoiding my ptsd work. To validate myself, as I am doing work on myself, yet maybe not the work I should be doing. Or is it that I need to take my time to get there? Am I stalling and avoiding? Or am I leading up to feeling strong enough to work on things that require further exploration?

As I write this I’m feeling so self-absorbed!  Is this something that is normal for people who are in therapy? I know it’s good to do work on myself to overcome my ptsd and depression, yet I can’t help feel that I am very egocentric. I look on my twitter stream and see real issues: social injustice, wars, poverty, and then I look at myself and my concerns seem so trivial. It makes me feel ashamed and guilty, because my problems are nothing compared to what other people are suffering. I wonder if this is my depression talking or if it’s me? I acknowledge that it is important to address my mental health, yet sometimes I feel guilty. Because my depression, pstd, and anxiety have over-taken my life, thus preventing me from feeling like I have an active role in society.

Displaced. That is how I feel. Both physically and mentally, displaced. I don’t know where I fit in, because there is nowhere for me. I get lost in my wonderland (my head, my world). I’m so afraid. I don’t know what is in store for me in the future. I’ve got so much guilt. I feel guilty because I’m home bound and there is so much I could and should be doing (Gah! There I go, using two words which I don’t like! I don’t like that last sentence. At all.) I’m in mourning. I grieve for who I was and the life I led before it became disrupted. The before. It’s as if my life is now divided in half. The before: when I was working. Yes, I was sick and in pain, yet my life had value. And the after: the person whose life fell apart and is left having to pick up the pieces, left to accept that her life will never go back to what it was. The person who finds herself having so many thoughts that are running amok in her mind. I don’t know. And it’s this “not knowing” that leaves me feeling so powerless. Afraid. Stuck. Unable to move forward. Which then causes me so much anxiety.

This is how I feel right this very minute. These are the thoughts that torment me. I know I’ve got so much work to do. I have to be gentle with myself. I have to have hope. Yet I feel I’m in a dark place right now. It’s ok, because I’m feeling these feelings. Yes, they are making me uncomfortable. But I know that I will find my way back out. And I’m not alone. I have so much support.

Healing is a process. It is not linear. I will take one step forward, and two steps back, yet the importance is that I keep moving. And I am. The day will come when I can once again find my place. I’m not there yet… but I’m traveling. I refuse to give up.





@hipsteralice
April Blogger in Residency
Alice in Crohnsland for

http://www.whatthejules.com/april/331-hawmc-day-20-there-is-no-miracle-cure

#HAWMC Day 18: Open Book

HAWMC Day 18: Open Book

Open Book. For today’s post, open the nearest book (or find your favorite and open that!) to a random page and point to a word or phrase on that page. Using that phrase or word as your inspiration, free-write for 20 minutes – to be sure, set a timer and see what you’ve come up with.


What book did you choose and why?





“You are always going on about quotes and words and how wonderful they are. And they are, but remember you can play with them. You can put one in front of the other and make them say anything. You can hide behind words, but you can’t hide from feelings. At least, not forever… But actions and behaviors always speak louder than words. ”

(From the book: Girl on the Couch: Life, Love, and Confessions of a Normal Neurotic by Lorna Martin)



I randomly opened to this page and it’s ironic and shocking how fitting this passage is. Nail meet head! I do this. I “hide behind words”, because it’s safe. It’s easy to tell someone I’m fine when I’m not. It’s easy to say that I don’t need help or support. It’s easy to say ” I’ve got this”, to say “I’m strong”, to say, “I will beat this”, to say ” I am strong, I am a survivor.”


But in reality, what I am hiding is that I am afraid. Terrified. Of being vulnerable. Of being hurt. Of being rejected. Of being alone. Of failing. Of not being good enough. Not being strong enough.


It’s so easy to intellectualize feelings. It’s a defense mechanism, which I put up as a shield by which to prevent anyone from getting too close to me. And in that sense, I don’t run the risk of getting hurt. I mistakenly think that I am in control. Yet I’m not. The only thing I’m doing, by keeping people at a distance, is preventing them from helping me.









It reminds me of one of my favorite quotes from the movie Breakfast at Tiffany’s in which the character Paul Varjak tells Holly Golightly:


“You know what’s wrong with you, Miss Whoever-You-Are? You’re chicken, you’ve got no guts. You’re afraid to stick out your chin and say, ‘Okay, life’s a fact, people do fall in love, people do belong to each other, because that’s the only chance anybody’s got for real happiness.” You call yourself a free spirit, a wild thing, and you’re terrified somebody’s going to stick you in a cage. Well, baby, you’re already in that cage. You built it yourself. And it’s not bounded in the west by Tulip, Texas, or in the east by Somaliland. It’s wherever you go. Because no matter where you run, you just end up running into yourself.’ “









I identify with Holly, because I too have put myself inside a cage, and I try to run from myself only to find that it’s not possible.



I use many mechanisms to do this, as stated above and as I am doing now, (Ha!) by writing about it, and by intellectualizing. But words are not substitutes for people. For actual physical contact. For actions. I can say I’m sad or depressed or scared but am I really allowing myself to FEEL my feelings? It’s so scary to open up wounds that hold so much pain. Yet lately I’m learning (through therapy and through my writing) that it is very important to learn how to recognize my feelings and sit with them, no matter how uncomfortable it may make me feel. Because for too long I have “felt” numb (yes, quite the oxymoron). The only way to promote healing is to feel.


Yet all these words I’m typing are useless if not put into action, and by that I mean, by stepping outside of my comfort zone, outside of my “cage”. I need to let down my guard and let people in. That is the true way by which I will really heal and grow. It is called living, which I don’t really think I’m doing much of right now. Sure, I interact with people on twitter, and it’s greatly beneficial to me. But I’m using twitter as a substitute for real- life interactions. I joke that I “ran away” from facebook to join twitter, because it provides me with anonymity. But how is that benefitting me? I have run away from SO many people! I am avoiding lots of friends and family members. I feel so much guilt because these were the same people who provided me with so much love and support during my most difficult times. Those who visited me daily when I was in the hospital. Who never left my side. Who visited me when I was in the I.C.U. I am avoiding them because they saw me when I was at my most vulnerable state. At my lowest, most weakest point. And they accepted and loved me and supported me.


So why is it that I am so afraid of letting them back in? Fear. Of what? That is my biggest issue. I don’t allow myself the opportunity to be authentic. I am living in fear. And it is such a lonely and miserable existence. I realize that part of my avoidance is driven by my PTSD. I am avoiding people, places and things, which remind me of that horribly traumatic time. Yet how can I truly heal, if I don’t overcome this fear? How long can I go avoiding?


What’s your reaction to your free-write?
My reaction is that I am a scaredy - cat who can talk the talk but is NOT walking the walk. All these words are meaningless if not put into action, and yet… I have to let down my guard. I am fully cognizant of that. I acknowledge that behind my words is at heart, a 16 year old girl, who is *still* coming to terms with the fact that she has a life-threatening, incurable illness, but at the same time, this girl is *not* alone. This girl is also no longer a girl but an adult who has so many resources to help her get past her fears. I keep writing about how I want to live and have strength and hope and blah blah psychobable blah blah. I must reach in and give that 16 year old girl who is terrified a huge hug. Then I must open the door to the cage and step out. Then I must find a way to destroy that cage. Otherwise the temptation to go back into it will be too strong. And do I really want to “live” my life inside of a cage for the rest of my life? On the inside looking out? Is *that* really living? No, it’s not. I feel guilt, because I was given a second chance at life, and I am not living as fully as I should be, as I could be. (I SO hate feeling guilt and also the words: should’ve and could’ve). I guess what I’m dealing with, in addition to my PTSD is “survivor’s guilt”. Now that I have identified what is “blocking me” I must find a way to move beyond that block. To find the power within.


What did you uncover that surprised you?
I uncovered that I hide behind words but it didn’t surprise me, as I am aware of how much I am avoiding. It’s ironic that that which I am avoiding is that which can help me heal. I’m bleeding and a simple band-aid won’t suffice. The wound from which the blood is spurting requires immediate treatment. I can no longer run from myself, from my feelings, from my pain. I am vulnerable. I am very afraid. But deep down, there is courage and strength. A will to live, on my terms (whatever those terms may be). I am afraid and I don’t know. This is me. Right now. And I am letting it out, and putting it out there, rather than suppressing it. It is both terrifying and liberating to make this admission. But it is honest.



@hipsteralice
April Blogger in Residency
Alice in Crohnsland for

http://www.whatthejules.com/april/327-hawmc-day-18-open-book

#HAWMC Day 13: 10 Things I couldn't live without

HAWMC Day 13: 10 things I couldn’t live without.

 

Here we go with another one of those difficult topics, writing about the top 10 things I can’t live without. I guess it’s good in that it helps me reflect on things that I rely on, on a daily basis, and which I may take for granted. As someone who is Chronically at Home (another term coined by the Chronically Awesome Jules) there are things I depend on to help me get through the day and which I may take for granted. In that context, I can then understand the purpose of this topic. Yes, I guess I am kind of rambling here because I am trying to make sense of this topic in order to facilitate the process of writing about it. I am THE most indecisive person. Ever. Therefore it it’s challenging to have to pick 10 things!


These are the 10 (plus or minus, I may cheat, just a tad, ha!) things that make my life ( as a Chronically Awesome Chronically at Home individual - say this 5 times fast, do it) easier. (Yes, I DID organize by categories, because I am anal like that, ha!)


Health Related:

• my meds (duh)
• coffee/caffeine (Without coffee and/or caffeine, there is NO way I can get out of bed, much less form a cohesive thought, I mean, look at what I’ve just written, THIS is *with* coffee, I rest my case!)
• water (It is ESSENTIAL that I remain hydrated, not only because of the coffee but also because of my meds and my stoma. A trip to the ER for IV fluids? Do.not.want.)
• *noticeably absent: food, because, I’m never hungry and I in fact, *can* live without it. *hangs head in shame* I know, I know, not good. *Kanye shrug* ha!

Educational/Entertainment/Coping tools:

• Coping/SupportMy familyMy Crohnies/IBD’ers/Fellow Chronically Awesome Peeps: THESE are the individuals who “get” me the most, with whom I can express myself freely because they are my peers. My support group. <3Friends (twitter & in real life)
• Service Providers (doctors/therapist)
• my dog (don’t know if she counts as a “thing” but I can NOT live without my furreh babeh)
• THIS should be NUMBER ONE!! Forget my meds, my furreh babeh, is my <3. That is all.

Educational/Entertainment/Coping tools:

• laptop (this is basically an extension of my body. A vessel, if you will, which transmits my thoughts) Pen and paper? What is that? o.O

• the internet- self explanatory
• twitter - oh this is where all my friends whom I dearly love reside! <3
• books- Because I love to read and I just *can’t* adapt to Ereaders. Not yet. Maybe never.

• art (beautiful things to looks at) - I really love works of art. I admire artists and wish I had that talent. This is something which I must try. Most def.

Comfort items:

• My dog (again, ha)

• cell phone (even though I may not pick up or return calls, haha)
• Oh, but I do text, and even w/new friends whom I’ve met on twitter! :)
• warmth items (squeezing this in, yes I AM cheating, ha) such as: loose baggy sweats/warm blankets (confession: I own a slanket, which is like a snuggie, but better, Do NOT judge Me!)

Evaluation:

I love that I am now evaluating my list. Ha. It looks like I went over the 10 items (unless I combine twitter/ youtube/soundcloud with the internet, in which case I am at 10). Ok, so this list is not anything fancy. But to ME these “things” are ESSENTIAL! It’s interesting that I do in fact take these things for granted but AFTER today I shall no longer do so. I don’t think that saying “take for granted” is the right phrase becasue I am fortunate and greatly appreciate not only having the ability to even list 10 things that I consider MUST HAVE and CAN’T live without, but actually DO in fact HAVE these things. I give thanks today, at this very moment for having these items, which not only help make me comfortable, but give purpose and value to my life.


PS: HOW could I forget one of THE most important things? Maybe because it is new to my life, but of no less importance. And that is, MY blog! Something new to me, that I would not have had, were it not for the support and encouragement that I’ve received from Jules! Although today marks day 13 of my blog, it has become a very important part of my life. It IS my journal and I can’t imagine *not* blogging, as I am benefiting so much by doing so.


Ok, I have now officially gone past 10 items, but whatevs. Ha.

@hipsteralice
April Blogger in Residency
Alice in Crohnsland for

http://www.whatthejules.com/april/317-hawmc-day-13-10-things-i-couldnt-live-without

#HAWMC Day 12: Stream of Consciousness

HAWMC Day 12: Stream of Consciousness

“As my sufferings mounted I soon realized that there were two ways in which I could respond to my situation — either to react with bitterness or seek to transform the suffering into a creative force. I decided to follow the latter course.”
— Martin Luther King, Jr.

Something that has been on my mind since I’ve been participating with HAWMC has been what makes a person creative and whether creativity is something which I posses. While I don’t consider myself creative, I greatly admire others’ works of art: paintings, drawings, music, writing. When taking a look at my blog, I see that it has become a vehicle for which not only have I been able to channel my pain and suffering, but my creativty. Thus, I have learned that I too am creative. This is of significance to me, because I need that validation. Something tangible to show for what I’m going through. Because as someone who is not only Chronically Ill but homebound, it is so easy to feel that I have no value. After all, prior to finding myself “disabled” I worked daily, and in that sense, I was in fact “producing” as a member of the paid work force. As a residential counselor, I contributed by helping others. I did work and my value was felt, not only through the thanks I received, but via a paycheck. Then I found myself unable to work, and instead have found myself at home, feeling worthless and envious of those who while complaining about it, are able to go out and work, everyday. I have found that I am not unique in feeling like an unproductive member of society. This is a feeling that is all too common amongst those of us who are homebound due to the disabling natures of our chronic illnesses.


It is when we are at our lowest points that we are given two options: to give up and complain (or as stated by MLK as quoted above, “react with bitterness”) or to use this as an opportunity from which we can gain strength, and take a look at our lives, and derive meaning from our pain and suffering. To use it for good. I choose the latter. I am not going to say that I have never given myself a pity party. I have my bad days, after all, I am human. And I’ve found how important it is to allow myself to feel, no matter how uncomfortable it may be. The important thing is that no matter how bad I feel, I acknoweldge the feeling, try to understand why I’m feeling that way, do something about it (if I can) and move on. It is crucial for my well being to move past feelings that bring me down, otherwise I remain “stuck.” I have found that this blog allows me a vehicle with which to allow myself to feel, to analyze, to grow.


By partaking in HAWMC I have been able to write about my experience, as someone living with Crohn’s Disease, Depression, PTSD, and Anxiety, and by doing so, I’ve become an active voice that is reaching out to others, mostly those with whom I interact on twitter. I am getting so much feedback and support from people who not only read my blog but who can relate to what I’ve written. I’ve learned that my experience has value. That I have value. Just because I am unable to go out and “work” at a “job” doesn’t mean I have any less value. It doesn’t mean that I then burrow under my duvet and watch T.V all day (nothing wrong with that, as I do this frequently, ha!), it means that I can do something as simple as blog about my experience, which not only helps me heal, but with the hopes that someone else can see that being sick doesn’t take away from our value.


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
April Blogger in Residency
Alice in Crohnsland for

http://www.whatthejules.com/april/315-hawmc-day-12-stream-of-consciousness