Friday, June 8, 2007

Journaling for the Chronique

Well, my last blog entry was 5/18 and I had made a comment prior to that that I was going to make a real effort to utilize this blog as a journal of the ins & outs of all the ways chronic illness touches my life. The good, the bad & the ugly. Clearly, I have not been speedy in getting to my next post - especially once I decided it should be on journaling. I think by the time you read this, you will have a better understanding of why.

First, to discuss the obvious pros of journaling and why we should all learn from my own hang ups and journal anyway! Keeping a journal of some sort is really important, particularly for those of us with a chronic illness - or any other life-changing event that will continue to change-life as time goes on. Kristi Patrice Carter wrote:

Many doctors will encourage you to journal details about their illnesses. You see, this gives them a better insight into what you are thinking, enduring, defeating or struggling to defeat. It also allows them to take rare look inside your mind that they otherwise would not see. After all, doctors cannot monitor every one of their patients 24 hours a day, but a journal allows them a window into the personal life of their Chronic Fatigue or Fibromyalgia patient and this journaling experience can serve both you and the doctor as they become more intimately connected to your experience...

Journals also serve as a therapy for some people....

...Lastly, journals allow you to track your illness through cycles and document whether your treatment regimen is working. To read the entire article, follow this link:

Now, a little personal history on Kimberly Flynn & journaling. Specifically, journaling when asked to do so by a medical professional. I "had" an eating disorder. That statement is one for another blog entry - another blog alltogether! In a nut shell, I had some very bad habits and we will leave it at that for now.

Back then, I was seeing (or being seen by) an amazing counselor named Marilyn who specialized in eating disorders. At that time, I was living outside of Boston and her office was in her apartment smack dab in the middle of down town Boston! She was as a BONE and had posters of BALLERINAS in her bathroom! - I am not sure if she was entirely "cured" of her obvious eating disorder, but she was a blessing to me, nonetheless. I knew she really, really understood where I was coming from. That part of it I dug.... she would practically finish my sentences for me. But then....there was HOMEWORK! Marilyn asked that I start journaling everything I ate, when I would exercise, if I would "fall off the wagon" and "uneat" anything, etc. This while also tracking my weight changes and so on.

My sister - and without question my best friend - wanted me to get better or, better said, not "practicing" my eating disorder. She bought me a small journal with lined pages just for the purpose of fulfilling Marilyn's request. I was very excited about this journaling thing for about one day, maybe 2 tops! ;P

Here is what we found out about me:

On a day that I did "all the right things" and ate what I perceived as "good", etc. I kept the neatest journal you have ever seen! I mean, perfectly shaped letters, plenty of info; was I full after eating?, how did it make me feel?, etc.

....Then there was the flip side to this type of day.

Let's say I had a slice of pizza or two instead of a 1/2 cup of couscous, 4 oz baked chicken and some fresh veggie to go along side - then what would my entry look like then? (without delving into the unhealthy though process of an individual with an eating disorder, this pizza scenario would be considered a complete and utter failure and there was no excuse, in my mind, to justify this action)
Literally - if i even wrote stuff down at all - it would typically not be in a timely fashion. I wouldn't make a note immediately after eating pizza, when i still felt so "dirty". ;) I would wait and rely on memory to make my journal entries for that day. An entry like "2 slices of pizza" would be written not perfectly within the lines of my nice little journal - but slanted across lines or written in the margin as if I were making a quick note to myself regarding some minute detail. A day like this "pizza day" might have started out with a 1/2 cup of Grape Nuts with skim milk and some strawberries for breakfast. That entry would be neat, legible and written within the lines of the journal. If my day went off the tracks (as believed by yours truly) and lunchtime is when this pizza catastrophe took place - it would be the lunchtime entry that the visible difference in my journaling could be seen.

This all seemed quite normal to me ..... it was the workings of my mind and my innermost beliefs, subconsciously transformed on to paper. Looked like acceptable journaling to me!

So, my next appointment with Marilyn came around. I hopped on the Red Line to the Green Line and made my way up Newbury St. (via Starbucks, of course) with my journal in hand for my meeting with Marilyn. It took her only glancing at the pages to come to the following conclusion:
I am only likely to journal something that is fully acceptable to me - something that showed success, not "failure". All entries that I was loath to identify myself with would be messy, outside of lines, in margins and un-legible. A stark contrast to the neat entries I was proud of that would mark not just the hour, but even the minute that I enjoyed my 1/2 cup Grape Nuts! ...Then some random scribble that looked something like "burrito" but no one could be really sure what it said ..... & it was any ones guess on what day this "burrito" even took place! Well, after Marilyn brought this to my attention I felt quite exposed and decided I didn't like journaling one bit!

This brings me to present day and our topic of journaling. Everyone told me to keep a record of symptoms, medications, etc. when I was diagnosed with MS. The same before diagnosis was very important to keep new symptoms straight and note when I became aware of them. Once I began treatment, the good people at Shared Solutions, the patient resource for Copaxone users, sent me a great little planner with spots for journaling, symptoms, meds and a record of when I do my injections. Apparently they don't know me too well to believe Kim Flynn would want to keep a written record of when she self injects medications daily! ;) I hate needles....we won't even "go there" right now! The scenario was similar to the one years ago in Beantown in that a day where I did my shot would be well documented, but admission of missing a shot would never be admitted - which becomes more missed shots - which becomes a VERY EMPTY JOURNAL.

I suppose too, I would prefer to not write it all down, as in Boston, because the preference is to "not admit I have a problem". It was an eating disorder then and it's MS management now - and whether I write it down or not - it's not going away! I am sure my MS specialist at the Maxine Mesenger MS Clinic in Houston thinks I am crazy when I whip out a bank deposit slip in his office with whatever new symptoms or issues I wanted to discuss with him scratched all over the back. ...This list carefully jotted down, of course, on the car ride to his office! Hopefully Dr. Hutton shares the insight Marilyn had years ago. If not, I am certain he must believe Multiple Sclerosis to be the least of my problems and that I am the most disorganized screw ball to ever set foot in his office! ;)

So where does this leave us? I suppose I owe anyone who has read this far in this post a "happy ending" or solution to this story. We'll see if I can oblige -

Here is what I have recognized lately in myself that might help anyone out there with hang-ups like mine:
I appreciate the effort on the part of the folks at Copaxone to put a journal in my hands in hopes that I use it, and I am sure that particular journal comes in very handy for many people. For me, in the interest of separating myself as much as possible from the reality of why I am being asked to keep a record, I recommend a "non pharmaceutical grade" journal. It's much more "mentally pleasant" to have an adorable little (or big) journal that makes a statement about YOU rather than a statement about the drug company that issued it, or Mead or whoever the manufacturer is. Why would I look forward to "special alone time" each day with a journal that literally "matches" the "look & feel" of my SYRINGES?! Or a plain notebook that has the personality of a dial tone and takes me back to all the joys of note taking in high school?!

Make YOUR journal about YOU in more ways than one - inside & out. This can be done on any budget. Been to the grocery store lately? School supply aisle - there are the "dial tone" notebooks and there are the cute notebooks that you can only see yourself journaling in if you have a cute pen to match! Which, by the way, I highly recommend! Target is a goldmine for such things. (Love Target-again, another day-another blog! People like me go into a Target store and come out hours later having no sense of the time or money they have just spent. A fugue that I am sure even the world's finest doctors of psychiatry can't explain-The Target Fugue!) For those of us that slip into Coach or Kate Spade or Juicy Couture fugues, there are day planners and journals put out there by all the big designers.

At Chronique Couture, we also offer a few journals that fit the bill and look more like you would imagine the story book cover to your life's biography to look! Elizabeth Friedl, owner of Little Miss Perfect has handmade some very fun journals exclusively for CC, of which she is also co-owner. We also have some other fun journals you should check out!

I think this journaling issue goes even more hand in hand with the overall concept of Chronique Couture than we knew. I also do think it's important to keep a record of this "stuff". It's important. We are speaking of illnesses for which there are no cures! Let's do our part and jot things down if it will ultimately help solve the puzzle behind these diseases and offer cures to the many who will be diagnosed in the minutes, hours, days & years to come.

A quick note to Marilyn: I probably never thanked you then as you were more the "enemy than friend" at the time (or so was my perception) but I do credit you for probably saving my life. I also credit you for the 20 lbs. I can't seem to shake .... but living, still with major hang ups regarding "eating" but hang ups I have found it much easier to live with - is certainly preferable to not living at all. Thank you.

And finally - to anyone that has actually read this entire post: First, I commend you for an attention span that far surpasses my own and I apologize for rambling on such ultra personal "stuff" to which you might not be able to relate at all. But, truth be told, I am just kind of proud of myself for "putting it down on paper" in the first place. ;D

Happy Friday & Chronique Regards!



Anonymous said...

Hi I live in Hul,Ma I use to love Newbury St seems like someone elses life now! Thank You I make collage if interested and pretties.I posted a collage on and it sold that weekend!!

Kimberly, CC said...

Pink Paris is a member of Whimsy Business too! I will definitely check out your site.

I LOVE Boston. I am in Fort Worth, TX and it's great here - but I miss the city. I would walk Newbury, Boyleston .... then Quincy Mah-ket :), and how 'bout that North End!?