Hey! They Don't Look Disabled!

My sister & one of my business partners, Allyson found this great article on an equally great website Invisible Illness.

Hey! They Don't LOOK Disabled!

Who Is Allowed To Park In those Disabled Parking Spaces, Anyway?

Have you ever seen someone get out of a car parked in a space reserved for the disabled, who did not LOOK disabled? Did it make you very uncomfortable or even upset? Did you let them know of your disapproval by giving them a dirty look or yelling something at them?

Well, you are not alone. Many people are very disturbed by the sight of a seemingly mobile person stealing the space of someone who is truly in need of it. After all, we want to protect the rights of people for whom these spaces are reserved!

However, in wanting to help those who deserve these parking spaces, we actually may be hurting someone who does have a legal right and a legitimate need to park there. How can this be true, you ask? Isn’t it obvious who is and who is not disabled? The answer is... NO.

The qualifications for the general accessible parking spaces include those using chairs, walkers, crutches and canes, as well as some whose impairments are not always so obvious to the onlooker. I refer to these impairments which cause disabilities that are not so apparent from the outside, as "invisible disabilities."

There are thousands of people who are forced to contend with serious illnesses, injuries and circumstances, which have left them with mountains to climb every time they take a step. Most people do not realize that a person can have hindrances that come from the inside and may not even be visible on the outside. Their restrictions may not be conspicuous at a glance, but their pain, limitations and inability to function normally is all very debilitating in reality.

Click here to read the whole article
by Written by Sherri L. Connell, BA
Copyright © 1997, Revised 2002
The Invisible Disabilities Advocate

Relief For Spasticity?

A product that helps take the edge off Spasticity? Well, it has for me! I posted a teaser on our message board about this because I have wanted to give it a fair shot. I didn't want to just try the product twice and tell everyone it's great or it stinks.

Let me tell you a bit of history:
I have MS - officially diagnosed last summer. I have been taking Tizanidine/Zanaflex for a couple of years now for tightness, etc. in my legs - primarily my left leg. Most recently - the toes on my left foot are really going nuts. So tight... sometimes I just think they will never feel right again. :(

A great friend of mine owns an online store and he sells vitamins and supplements for endurance athletes, which is something I am sooooo not! LOL! (He has been talking about creating a new area of his site for CAMs (Complimentary & Alternative Meds), which I am very excited about.)
... So, I was wandering through his site and noticed a product called Sportlegs. He had some info that Sportlegs has been known to help with RLS or Restless Leg Syndrome. Well, I do get restless legs...restless body really, but I thought what if this stuff ever helped with spasticity!?On his site, Sportlegs is described (in part) like this:

How's it work?
Taken an hour before sports, SportLegs gently raise your blood lactate level just enough to
prevent your muscles from making more lactic acid than they need. Elevated blood
lactate is the signal which tells muscles not to make so much lactic acid.
Researchers have discovered it's not lactic acid, but lactic acid accumulation,
which is the athlete's real enemy. The result: Your muscles don't make more
lactic acid than they need for you to perform at your very best, with less
painful muscle "burn" during sports, and less soreness afterward.

I thought "what the heck!? My legs burn and spasm!" So - I tried it. Let me also add here that since my insurance benefits have stopped and I have not hopped on the COBRA train yet, I have been OUT of my Zanaflex/Tizanidine for about a month. I was running to the mailbox every day like I was a kid expecting a personal acknowledgement of my letter to Santa from the man himself. I took 3 pills when I got them, and I kid you not - it was the most comfortable evening I have had in a long time. I realized my mind was not CONSTANTLY on the discomfort of my legs and feet, but actually enjoying watching some prime time TV! (probably CSI Miami, but that's another blog post for another day!)

I am not saying they always take the pain away completely. But they really seem to always take the edge off. I suppose it's like anything else - I guess some days my legs/foot bother me more than others, so some days the supplements will seem to work more than others. I can truly say that I have noticed a difference - and ESPECIALLY at a time where I am out of my other meds - I think that speaks volumes. Most of the time I will take them with some Advil.

I highly, highly recommend trying Sportlegs. We are adding a page for product reviews (products other than CC store items) for things like supplements, books, websites, services and other merchandise of interest for the Chronique. We will be sure to put Sportlegs up as soon as we get the page up and running.

Like I said to myself - what did I have to lose? I am really glad I tried it.

Stay Well & Happy Saturday!

The Importance of Living Well for the Chronique

I stumbled upon this great article that I think speaks to a topic we are all aware of, but one that we could all stand to be reminded of. Be Well!

Living with chronic illness impacts one’s physical, psychological, emotional,
and spiritual well-being. Living with chronic illness often causes one to feel
helpless and hopeless, discouraged and isolated. It can devastate one’s career
and financial security, friendships and love relationships, creativity,
concentration, motivation, and one’s very peace of mind.

It is important now and useful long-term, to remain as active, social, and productive as possible. That means focus on what you can do and let go of what you can no longer do. Create priorities for your body, mind, heart, and soul.

Ancient philosophers and healers recognized that the body and the mind were one. Modern research confirms this body/mind connection. In the last 15 years, Western medicine has coined a term for what the ancients knew: psychoneuroimmunology. Harvard Medical School now publishes a professional journal called Mind/Body Medicine. Studies show that improved physical, emotional, and spiritual well-being stimulate an innate healing response in the body. It is possible to create a healthier
lifestyle that will promote wellness. The key is to balance the physical,
psychological, emotional, and spiritual aspects of your life.

Improving and maintaining physical well-being includes proper nutrition, rest, and exercise. It means carefully selecting the activities in which you participate and the
people with whom you spend time to ensure that you are making good choices about
expending energy and making the most of each day.

Paying attention to the psychological and emotional aspects of your life includes becoming a good observer of your thoughts, feelings, and how/what you feel in your body. This is a time to allow yourself to experience, examine, and express your thoughts and feelings in an honest and forthright way.

Accurately expressing yourself is one of the most important aspects of living with chronic illness. No one will know how you feel and what you can reasonably be expected to do or not do unless
you tell people directly. Value yourself and take ownership of your feelings,
and thoughts, your resources and choices.

Honor and express your deepest truth and make what you say and how you say it match what you feel. Say your real “yes” and your real “no” and say what you feel without blaming or needing to please others. Don’t avoid saying what is in your heart or on your mind to say. Don’t hide your worries and concerns because you don’t want others to know you are not in control.

Accessing your spiritual nature can be as easy as watching the sunset or taking a walk through a beautiful garden. You might also consider meditation, yoga, chanting, or praying. Whether you call it God, the Universe, higher power, or “the force” a la Steven Spielberg, it is quite comforting and healing to experience the inner peace that is uniquely you.

Sitting in the quiet and allowing your attention to flow inward is very
foreign to men and women in the Western world. It is, however, a fundamental
practice if one is to develop and maintain health and well-being, inside and
outside.

Human beings are resilient and adaptable. When faced with seemingly
insurmountable tasks, we rise to the occasion. Chronic illness often motivates
us to re-evaluate and reconsider every aspect of life; to review and change
habits, goals, choices, and decisions.

This review includes everything from food choices, career/work, social relationships and recreational activities, to including naps and going to sleep earlier. Now is the time to create a more flexible schedule and intentionally pace yourself.

Determination and persistence will enable you to stay motivated through the tough times, and stay involved in activities that are meaningful and joyful. Maintaining your sense of humor is essential.

Invite people into your life who are kind, respectful, and compassionate. Stay away from well-meaning, well-intentioned people who have an agenda for you and can’t see you or hear you accurately.

This is the opportunity to create the changes in your life that will bring meaning to every day and cause you to choose and maintain a lifestyle that promotes and sustains your well-being: physical, psychological, emotional, and spiritual.

While chronic illness may close some doors, it will no doubt open others. Take good
care! You’re worth it. Remember, only YOU can make it happen!

Copyright
Dr. Jackie Black 1999-2005
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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: http://ezinearticles.com/?Importance-Of-Journal-Writing-To-Deal-With-Feelings-About-Chronic-Illnesses&id=476439

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!

Kim