Post #77: I think I failed the support group quiz

I'm blogging 30 posts in 30 days for National Health Blog Post Month with @wegohealth.

Join me: http://info.wegohealth.com/nhbpm2012 #NHBPM

 

Why is this pic under "support group clip art?" Perhaps it's a group for big 80's hair and questionable facial hair decisions.

 

Today's prompt: Questions I have for other patients

 

Oh prompt. I have so many questions! It would be easy to ask these questions at, say, a gathering of other Crohn's patients. Like a support group! (sound of running down a hallway and slamming a door).

 

Ok, I'm back. I don't know why I am so adverse to the concept of a Crohn's support group. It has all of the things I say I'm searching for....but the idea freaks me out. I will happily share my concerns and questions with friends who have absolutely no idea what I'm talking about (TNF blocker whaaaa?), but ask me to sit in a room with 10-12 other people experiencing the same symptoms and possibly taking the same medications and I will cling to the door frame and refuse to leave the house. I write a Crohn's blog, but I am hesitant to talk about Crohn's in person. COMPLICATED!

 

To try to sort out my feelings about support groups, I googled "are you ready to join a support group?" which was like the 10th most popular answer after "are you ready to have a baby" and "are you ready to quit smoking." Here are some questions, adapted from here:

 

Do you enjoy being part of a group?  If that group bakes cookies and wears yoga pants and       watches "The Breakfast Club," then yes. If I am required to talk about FEELINGS, then no.

 

Are you ready to talk about your feelings with others? See above.

 

Do you want to hear others' stories about their Crohn's? No. Maybe. Scary. Run away!

Would you like the advice of others who have gone through different Crohn's treatments? Yes.

Do you have helpful advice or hints to offer others?  No:(

Would reaching out to support other Crohn's patients make you feel better?  Sure?

Would you be able to work with people who have different ways of dealing with Crohn's? You mean people who shun drugs and only eat south growing tree moss and think I'm DOING IT WRONG if I don't follow their strict moss recipes and refuse to CURE MYSELF with their forest based diet? Then no.

Do you want to learn more about Crohn's and treatment issues? Again, maybe. Scary. Run away to the forest for post group moss collection!

Ok! After taking this quiz I sense some ambivalence about the support group experience. Actually, let's call it what it is: fear. I am afraid of making the existence of my Crohn's any more real than it already is (i.e., by talking about it), or seeing someone who is struggling with advanced disease. That would be kind of devastating. I don't want to see what may or may not be in my future.

At some point, I think it would be a healthy thing for me to face my fear, put on my grown up lady pants, and make some connections with people who are like me-who have Crohn's. If/when I do so, here are some questions I would ask:

1.) How the hell do you hold down a full time job and deal with an unpredictable colon?
2.) How the hell do you hang out with babies (germy, germy babies) without getting sick? I always get sick from baby germs.
3.) How do you turn off the constant worry?
4.) What are your tips for being a better family member/friend when you feel like crap all the time? 
5.) Have you tried tree moss? Was it helpful? (kidding!)
6.) What do you think of delaying a taper off steroids so the decrease in dosage doesn't coincide with Thanksgiving, which would allow you to eat a greater variety of foods?

That last one is topical, but the rest are pretty timeless. Maybe someday I'll get a chance to ask them, in person, away from this blog. Face to face.



Post #76: Bear caregiving 101

I'm blogging 30 posts in 30 days for National Health Blog Post Month with @wegohealth.

Join me: http://info.wegohealth.com/nhbpm2012 #NHBPM

 

Dude, I would STEP AWAY.

 



Le Prompt: Write about your advice for someone caring for a patient with your condition

 

Oooooh, nice one daily prompt! I feel like half of these prompts are list making filler posts, and then BAM, they hit you with an emotional jab to the kidneys.

 

Remember yesterday, when I said I had a hard time accepting help gracefully? No where is this more apparent than in my relationship with my caregiver. When I'm feeling sick, I'm like a wounded bear-I don't want to see or do anything, I just want to hunker down in my bear cave and make piteous bear moaning sounds and be alone with my pain and discomfort. I don't want anyone calling the bear cave with cheerful life updates; I don't want anyone stopping by to have a chat and some bear tea. I just want to curl up into myself and shut out the sights and sounds of the outside world. If you poke me in this state, if you try to have a conversation or ask me if I'm feeling better or try to give me bear advice, I will probably growl at you and chew on one of your limbs. It's not an attractive quality, this lashing out, but it's all that feels right sometimes.

 

Doesn't this make me sound fun!? I'm not always like this, of course, just like I'm not always in the midst of a flare. But on my worst days, sometimes I just want to be left alone.

 

My caregiver provides me with many useful things: Gatorade, new magazines, emotional support....and, after an adjustment period, space. We use a lot of "I'm feeling______" statements to avoid confusion and frustration. In the beginning, I took the support I was receiving for granted, and didn't focus on the effect my diagnosis was having on my caregiver. With the perspective of a few months time, however, I can see that we share many of the same frustrations, and I can appreciate what a gift it is to have someone who cares enough to, well, care for this bear of a Crohn's patient.

 

If I were to give out advice to other caregivers, based on my experiences with my own, I would say:

 

1.) Get some support. Take care of yourself; find someone to talk to.

 

2.) Educate yourself. Ask to go to doctor's visits, if your patient allows. Understand what treatment options are available, and their risks/benefits.

 

3.) Be patient. We're going through some shit-we may need extra time to process all of our FEELINGS, or make decisions about our health. Our disease is unpredictable, and our emotions might be too. Give us the time and space to make the choices that are right for us and figure things out on our own.

 

4.) Don't feel the need to be relentlessly cheerful or uplifting. It's not your job to be Captain Sunshine.

 

5.) Be supportive, but don't nag or preach. Look, we know we need to take our B-12 supplements. Picking up some extra at drugstore so we don't run out? Supportive. Placing a variety of B-12 pills in our lunchbox? See bear attacks, above.

 

6.) Realize that as much as you can learn about this condition, you will never know what it's like. You can empathize, sure, but we are experiencing painful and unpleasant symptoms for which you probably don't have a frame of reference. Respect that, and don't try to minimize our experience.

 

7.) Take our lead when disclosing our condition. Are we shouting our diagnosis from the rooftops? Great, you can include it in the Christmas newsletter. Are we only telling close family and friends? Then you probably shouldn't tell your physical therapist, barista, bank teller, or dry cleaner.

 

8.) Take advantage of the good days. If we're feeling great, it's a good time to go on a field trip. Pick something you both enjoy and get out of the freaking house.

 

9.) Take time off. Look, no one signed you up for 24/7 house arrest. There is no one right way to be a caregiver, but neglecting your own needs is certainly not the best way to do it. Unless your patient is hospitalized or in dire need of your medical attention, taking time apart will be good for both of you.

 

10.) Tell us what you need. Really. Set some boundaries. Ask us for support. Ask for information.

 

That's not a comprehensive list, of course, but a good place to start. I think a lot of people hear the term "caregiver" and think of a mother taking care of her elderly mother, or a husband taking care of his elderly wife. That kind of care giving is all encompassing and often a full time occupation. 

 

The relationship I have with my caregiver is, for the most part, just a normal relationship, with the added bonus of some extra emotional support and encouragement. It's not all Crohn's, all the time. There are some physical needs, of course: I know this person will take me to get my colonoscopy in a month, sit in the waiting room, steer me towards the car, drive me home, and point me in the general direction of my bed. But on a daily basis, illness and Crohn's don't always even come up in conversation. What is vital is that I know that I have someone who cares about me enough to listen to my concerns, ask questions, act as a sounding board for difficult decisions, and sometimes just hold my hand. I am grateful for the unconditional support, and I offer it in return.

 

When I have the desire to growl and maim, I try to keep this in mind: I am lucky to have such a person in my life, and they deserve my respect and my thanks. That thought keeps the bear a little calmer.

Post #75: Fail better

I'm blogging 30 posts in 30 days for National Health Blog Post Month with @wegohealth.

Join me: http://info.wegohealth.com/nhbpm2012 #NHBPM

 

My strengths? Biceps and an excellent "Blue Steel." My weaknesses? Hair gel and, apparently, awkward posing.

  

Today's super fun times prompt: My strengths and weaknesses list post

 

Ha! I can't stop looking at that picture. It's like he's sexily inviting you to thumb wrestle. Getting back to business, I am a huge fan of making pro/con lists, which is really just another way of listing the strengths and weaknesses of a particular choice; so now I guess I'll make one about myself.

 

I started making the list, and I don't like where it's going (ha!). As a person or a patient, I don't think I fall so neatly into clean divisions: good/bad, strong/weak, right/wrong. I think I am constantly improving/falling behind, and I need to find new labels that encompass that movement. Thus:

 

I aspire to be:

A well informed patient. This means scouring the Internet (hellllllo, Dr. Google), scientific journals, books, magazine articles, podcasts....any resource that might offer new insights into this disease. It also means being organized for doctor's visits; keeping track of routine testing; and researching potential treatment options.

 

Patient. This is a tough one.

 

A good caretaker of my body. Even though my body doesn't always accept varied and nutritious foods, I keep trying. And I've been attempting to incorporate more exercise into my routine, even if it ups my nap time.

 

A strong medical advocate for myself. I've discussed this at length, but it's important to me to understand what is going on with my body, and what the potential benefits/side effects of any treatments might be. I seek out a lot of opinions, ask a lot of questions, and do a lot of reading, all to make the best, and safest, choices about my health. At the end of the day I am responsible for this body; sometimes, especially since my diagnosis, it often feels like an overwhelming and scary job. It would be easy (easier?) to just accept the directives of my doctor at face value, to take the drugs he recommends and ignore my misgivings, but I feel an overwhelming protectiveness that prevents me from handing the reins over to him completely.

 

Kind. To myself and those around me. Again, a work in progress; it's tough to maintain the social niceties when you are completely exhausted and depleted.  

 

I am working on:

 

Trust. Trusting myself and my doctor. I don't trust very easily. At our last appointment, he stopped what he was doing, and looked me in the eye. He poked my knee with a file he was holding, and said, quietly, "You need to trust me."

 

It's something I struggle with. I need to find a balance between blind acceptance and informed agreement, but fear is complicating and confusing every choice I make. It's not as easy as just trusting someone-or maybe it is. It's complicated. It's scary. I'm working on it. NEXT!

 

Humility. I don't know everything and I'm not the world's expert on, really, anything. Except my own body, which is why if you try to tell me I'm not experiencing something I am, I will head butt you.

 

Patience. How can this be on both lists, you ask? Well, there are good days and bad days.

 

Friendship. I have let this disease make me kind of a shitty friend. It's not an excuse; it's just the reason for my shittiness, and it's something I can improve.

 

Giving back.

 

Reaching out. This one links up with humility; I am not so good at asking for help or support. Giving it? Sure. Receiving it gracefully? Not so much.

 

 

Well, there you have it. A few of my qualities as a person and a patient. I feel like they could all be lumped together in one giant category titled: "Guess what? I'm HUMAN." but I'll stick with what I've got.

 

It's all a work in progress. Maybe what I'm getting at could be best explained by one of my favorite quotes, from Samuel Beckett:

 

 

Ever tried. Ever failed. No matter. Try again. Fail again. Fail better.

 

 

That has been my motto for the past couple years: try again. fail again. fail better. Suceeding is not the point; trying is. Call it what you want: persistance, strength, will, or pure stubborness. Trying again (and again and again) takes heart. Failure is just another opportunity to clear your vision, shake off the dust, and start fresh-the opportunity to test and prove that heart all over again.



Post #66: How do I mail this, exactly?

I'm blogging 30 posts in 30 days for National Health Blog Post Month with @wegohealth.

Join me: http://info.wegohealth.com/nhbpm2012 #NHBPM

 

If I got a letter from my colon, I don't think I would open it without gloves. Special delivery indeed!

 

Today's prompt: Write a letter to your health.  

 

Here goes:  

 

Dear AAC,

 

I'm going to keep this short and sweet, because I've already cried enough this week.

 

AAC, you were not the birthday present I was expecting last year.

 

You are not the birthday present I want this year.

 

In a deep secret place, I realize I can't blame my body for expressing a disease. I can be angry-I can fill pages and pages with ugly words of rage and hate, bemoaning this situation-but it's nobodies fault. That might be the most infuriating thing of all.

 

AAC, you are an easy target for my frustrations. But I hope you know that more than anything, I want to heal you. I want to let you do your job. I don't want us to spend another year struggling with the varied miseries of Crohn's.

 

I know there is no quick fix for our situation, but this year I hope we can find more balance. I promise not to flood your system with dairy products or high fiber vegetables. I promise to let you rest when you are tired. I promise to keep buying those moist bathroom wipes you like so much.

 

In return, I ask for patience as I try to find ways to give us both relief.

 

I hope we can figure all of this out, together, so that our greatest problem is when I stupidly eat way too many dark chocolate truffles during a random seasonal potluck because THEY LOOK SO GOOD. Remember the good old days?

 

Wishing you the very best this holiday season,

 

xoxo,

 

-other AAC

Post #31: Is there such a thing as colon yoga?

Annnnd push all thoughts about your ulcerated colon away......

All of the blogs/online articles/waiting room liteterature/books about Crohn's talk about stress relief. I think this is mostly because there aren't too many proactive things you can do about your Crohn's, so the literature throws us a bone: "Although it hasn't been proven effective in alleviating any of your symptoms, it hasn't been disproven either! So bust out the yoga! Meditate! Relax! It's not as though you have a chronic autoimmune.....oh right."

For a long time, when dealing with my anxiety, my body often clued me in to what I was feeling long before my brain caught on that something was amiss. My posture would change; my shoulders would ache from being clenched all day; I would find my hands curled into fists even though I felt calm. Back when I felt more attuned to my body, I would notice these postures, and recognize them for what they actually were: physical manifestations of emotional turmoil. Now, my body sends a lot of different signals all the time. It's hard to weed through the symptoms and pain and, think, aha! My body is tense. What is the source of my anxiety?

Of course, with the Crohn's, there are many obvious sources of anxiety, and scenarios that invoke worry and concern. Recently though, with the steroids still on board (yes, still tapering), I have been able to seperate, to some extent, some of the colon anxiety and some of the life anxiety. And as usual, the anxiety starts in my body.

Some examples: recently I had a super stressful hour long phone conversation. I realized I needed to divert my brain and blow off some steam, so I headed to my craft shack (dining room, whatever). I was sitting there, fiddling around, when I noticed that my ear was killing me. I thought, great, on top of all of this shit I now have a raging ear infection, and I'll have to take antibiotics, which will further piss off my AAC, SUPER AWESOME WHY IS THIS HAPPENING NOW. Scowling and muttering obscenties under my breath, I started to massage my ear when I realized......my jaw was clenched. And it had been since the conversation, an hour earlier. The pain from my jaw had travelled all the way up into my ear, and all the way down to my neck. As soon as I started to open my mouth and stretch my jaw, the pain went away.

When I fall asleep, I find that one of the most comfortable positions is to wrap my arms around myself under a few layers of blankets-and I stay in that position all night, holding on to myself, buried in sheets.

Since I started to notice these things, I also noticed that throughout the day my shoulders inch towards my ears, in a kind of perma-hunch, like an arthritic turtle trying to get back into his shell. It's been a constant new mantra: shoulders down, head straight. As I go to and from the bathroom: shoulders down, head straight. As I check email: shoulders down, head straight.

I think I might need to try some of this relaxation business.

Post #28: Crohn's is a GREEDY HIPPO

This guy obviously lives in his parent's basement, and maybe does bad things to cats.

Today was an ok day; better in the morning than in the evening, as is usually the case. I seem to have a new pattern: evacuation day, followed by a rest day. On evacuation days (this makes me think of an entire day spend doing fire drills, or stop/drop/rolling on the driveway) I am way more tired, like the act of creating normal poo completely drains all of my body's energy. I don't think this is a good sign, but at least there is something normal going on in colon town? Who knows.

Tonight, though, I'm feeling sick. My stomach hurts and has been doing some acrobatics after I eat. I'm nauseous and I think I may have a tiny fever. I can't seem to concentrate on any one thing-I feel like I've watched everything good on TV (horrors), reading seems like work, and I don't really want to learn about feelings in O the Oprah magazine. I should do laundry and pay bills and clean the kitchen, but I'm procrastinating here instead.

I thought the name of this blog, Angry Angry Colon, was a pretty clear allusion to the game above, but maybe I should explain. In my house, growing up, we never really had "fun" games or "fun" cereal or "fun" processed food. Sure, there was Monopoly, but there was no Mousetrap. There was NEVER Nintendo, and all of the cereals were high in fiber. My dad used to eat this one cereal that truly looked like bark, and we used to call it his "rabbit food." This is not to suggest that I had some Dickensian poorhouse style childhood (please sir, more high fiber gruel, sir!), but that my parents wanted everything to be educational, or at least not frivolous. If there is one word I would never use to describe my parents, it would be frivolous.

Naturally, "dumb" games and fake cheese snack products (Cheetos! because in nature, dairy products are NEON) were irresistible to me, and I used to love the game Hungry Hungry Hippos because it was quick, pointless, loud, and completely lacking in educational value. There's really no strategy involved-whoever has the greatest hand/eye coordination wins. Inevitably, one of the hippos would break from being vigorously pounded, and there were more white gumballs for the other hippos. It was the kind of game that was SUPER EXCITING for about 3 minutes.

I named this blog AAC because it kind of sounded like the game, and because the other alternative was more crass: before I was diagnosed, when I was undergoing all of the crazy testing and having symptoms and feeling like crap, my sister used to say I had MAD, or Mad Asshole Disease. It's kind of an all purpose diagnosis. I just didn't want the word asshole in the title of the blog, even though I talk a lot about it IN the blog. Asshole asshole asshole.

But AAC is really more applicable, because if you think about it, the ravening hippos are like the different parts of my life fighting for the limited amount of resources (energy, really) I have available to devote to them. One hippo is Crohn's, one is my social life, one is my personal life, and one is my work life. Right now, the kid playing the Crohn's hippo (stay with me here) has the most skills: that little bastard is hogging all the balls (ha). He's fast.

Hopefully there will be a time when the other hippos get a few more balls (ha) sent their way. When things balance out and every hippo has a fair shot at the prize. Unfortunately, right now, it feels like the other three hippos are muzzled.

While you ponder what board game best represents your life, I am going to go put an icepack on my face and try not to throw up.