When Government Makes Good Things Happen

Before we all go off and celebrate, there's one final thing to add to the list.

The passing of House Bill 5046, the Restroom Access Bill. Otherwise known as the Bathroom Bill, the bill provides access to bathrooms in retail spaces, providing certain measures can be met by the establishment, to those of us with medical conditions.

The LSJ's John Schneider did a piece this morning about it here. I'd like to thank John personally for his advocacy on the issue.

A Christmas gift to those who gotta go when they gotta go ...

There were plenty of things state legislators should have done, but didn't do, in last week's lame-duck session.

But, in the words of Julielyn Gibbons - a Lansing woman who suffers from Crohn's disease - senators exhibited remarkable "common sense" in passing House Bill 5046, the restroom access bill.

In the wee hours of Friday morning, the bill was pronounced dead. According to Gibbons, a champion of the measure, it was resuscitated around 9 a.m.

Megan Brown, a spokeswoman for Gov. Jennifer Granholm, said Monday the governor intends to sign the bill into law.

And thus compassion and decency - as it applies to this one aspect of human existence, anyway - will be the law of the land.

Introduced as a bill by State Rep. Andy Meisner (D-Ferndale), the law will require retail establishments with employees only bathrooms to open them to people with illnesses that necessitate immediate access to toilets.

Those folks will carry written proof from their doctors, and present it in emergencies.

The law, which also protects retailers from liability, will take effect in 90 days.

It's meant to help people with Crohn's, ulcerative colitis, inflammatory bowel disease, pregnant women, etc.

Said Gibbons: "I think it's a real victory for those of us with medical conditions that kept us at home. It's another step forward for civil rights."

Last month I wrote about a woman with diabetes who suffered a humiliating accident after a clerk at Williams-Sonoma at the Eastwood Towne Center refused to let the woman use the store's bathroom.

A big thanks also to all of you who called and emailed on behalf of the issue, and to the Lansing-based Rossman Group, for their pro-bono work on the effort.

This is why those of us in politics keep doing what we do, because every so often, something good happens as a result.

Happy Holidays to you and yours!

We've come along way, baby

Ten years. Some short, some long, some tired, some sad, some exciting. But it's been 10 years and I'm still here.

April of 1998 found me in one long hospitalization following 40-50 previous stays in the couple years before. My immune system practically gone, my veins shot from all the tests and IVs, my digestive tract resembling something you might see on Mars. My high school classmates thought me moved, sick with leukemia, or just - gone. My parents, my siblings, my doctors feared for my life. I thought I was terminally ill, but damnedably determined to graduate that year with the rest of my class, even if it took my dying breath.

I had just played guinea pig for the last time, trying out the latest chemical cocktail approved by the FDA, only to nearly die from an allergic reaction. It was official. The doctors were out of options, afraid of what would happen if I got any sicker.

The first time they spoke to me about ostomy surgery I cringed outwardly and inwardly. My own idea of what it was so horrid, so different, so opposite of what it really was. I knew that it was my only option, inside I knew I wouldn't get better without it but I couldn't handle the thought of living with it outside of the fact that it could keep me alive. Honestly I didn't care, I just wanted to graduate, and if that meant having a "temporary" ileostomy, then sign me up.

My coping mechanism was convincing myself that it would be reversed, and I'd go back to being "normal", which meant no ostomy. I suspect that I always knew that it'd never be the case, that I was just too sick, and that I was playing a zero-sum game with a horribly diseased colon and rectum. One of us was done, and it wasn't going to be me.

Obviously, that wasn't the case. I had the temporary loop ileostomy without having any organs removed. Follow that a year later with a partial (four and half feet of the six) removal of the colon two days before my birthday, and six months after that, the total procto-colectomy with the remaining colon and the rectum out.

After the inital surgery it took me literally years to be able to look at myself in the mirror, to accept that was who I was, and too many more years to embrace who I am. I'm still not completely over that hill yet, but without a doubt, there's a light at the end of the tunnel.

Ten years ago I would have barely recognized myself now.

All that I am has been greatly influenced by being an ileostomate these last ten years. I'm proud of who I am. I'm passionate, political, witty, geeky, funny, smart, loving, involved and many other things that make up who I am today.

Ten years has been a long time, a tough road, and while I'm still a bit surprised I've made it that far, I wouldn't change a thing, especially the fact that I live with an ostomy. It truly is a badge of honor.

Takes one to know oneself

In all my years of living with a chronic illness, there's been several saving graces, and chiefly among them, I've never had to deal with the C-word.

If I hadn't had my colon removed eight years ago, my risk for developing colon cancer would have been five-times higher than most of the rest of you. Don't forget that colon cancer is the third most common form of cancer and the second deadliest of all the different types of cancer, so make sure you get that colonoscopy, because it's almost the most preventable of all the cancers. (Take it from a girl who's been through enough colonoscopies to keep her doctors fat and happy for the rest of their lives, they're not that bad.)

All that aside, because of some of the medicines I was on and complications/side effects of the disease, I'm now at an increased risk for other types of cancers like lymphoma and cervical/ovarian cancer. Go figure.

But I digress.

I've been following the blog of a fellow Michigander that despite having never met, I feel quite a bond with, and need to thank. Jodi Wilson was 26 when she was diagnosed with breast cancer last October. She's also a page designer over at the Detroit News and bravely decided to share her entire journey with us from start to what we all hope will be victorious finish. Her blog over at the paper is appropriately titled The Breast Monologues.

Jodi's been brutally honest with her readers, and for that I applaud her. It's not easy bearing your vulnerable side to the exhibitionist world we live in, especially when you're talking about losing various parts of your body that society still hasn't completely come to term with. Trust me, I know all about it.

Sometimes it's darn right hard for me to read her words, because flashbacks of my own days of pain and hospital stays and depression often rush back in a way that make my head spin and my heart race. I try to put a positive spin on it just to keep things balanced - remind myself how far I've come, how I've now had almost 4 years hospital-free. How long ago it all seems, and yet like it was just yesterday.

She recently opted to have a mastectomy and as expected, it brought an awful storm of memories back. My surgeon warned me for months that I'd be better off if I just decided to completely remove my then partial-colon and rectum and at the ripe age of 20, I couldn't even begin to imagine what life would be like physically un-whole. It didn't matter that I was in the hospital multiple times a month, or that I had a deeper relationship with my doctors and nurses on 6 North than I did with my best friends. I was 20 years old, and if I wasn't whole, what life could possibly exist for me out there in the big scary world?

Obviously logic wasn't part of my thinking, and those wiser than I knew that it was a decision I had to come to on my own. I was actually more worried about meeting Mr. Right, getting married and being loved by someone else than I was living, and looking back now, that terrifies me.

It took nearly spending Christmas in the hospital (I got a 24 hour reprieve) before I finally woke up. My then-boyfriend literally had to tell me that he'd still love me despite my missing organs before I was ready to sign on the dotted line and go under the knife. I think about it now and it breaks my heart.

Looking back now at the many scars that line my abdomen and various other parts of the body and what those scars represent in both physical and emotional pain and victory, it's amazing to think that I was that insecure person so long ago.

It's easy for me to go through my daily life and occasionally not really remember everything I've undergone. My scars and my ileostomy are my only real daily reminders. All of my other physical reminders like my weight, my fatigue, my daily pain from the chronic kidney stones, I've just grown used too. I don't like them, I try hard to remedy what's able to be remedied, particularly my weight as of late, but I just deal, because in the end, I'm alive when I probably shouldn't be.

But when I read a post of Jodi's and I'm thrown back into a different time of my life, a personal Mt. Everest that I'm still attempting to climb, and it terrifies me in a way that I need to experience every once in a while. It reminds me of what I've overcome, how much further I still have to go, and my duty to keep paying it forward to others. It's one of the reasons I still blog and despite working in a field that can get nastier than most, it's why I stay true to myself and others. Because in the end, it really does take one to know oneself.

Before you judge...

There's something that's been on my mind lately, and this blog seemed to be the perfect place to get it off my chest. I know it's something I've been guilty of, others certainly have, and there's even a chance you have been too - being a little too quick to judge.

Having a chronic illness, I some how seem to find and befriend others who also deal with health challenges on a regular basis, sometimes more so and quicker than others. Call it a sixth sense if you will. I'm sure that it's a common thread that runs throughout societies, because it's human nature to bond with those in similar circumstances.

Recently I was speaking with a friend who falls in this very category. While she doesn't have Crohn's Disease or a similar digestive illness, she does have an auto immune disease, just like my Crohn's. She was feeling frustrated because people around her were giving her flack for not being her usual energetic self while she experienced some health issues. She complained that because she didn't have a visible physical disability, people just wrote her off as lazy, even though she would have given all the riches in the world to be up and at 'em like she normally is. Boy, do I know that feeling.

For the most part, you can't see all the physical scars that my 35+ surgeries have left me with, and most days I'm glad for that. Some days, when others give me grief how much I am or am not doing, I wish you could. Not because I want you to feel sorry for me, on the contrary. I don't want anyone's pity. What I and thousands and perhaps millions others like me would appreciate is a little pause before you rush into judgment on what we are or are not capable of.

Since falling ill with Crohn's and being placed on steroid therapy, I've been on the overweight side of the scale. It's not something I'm proud of, and it's a battle I've constantly lived with since. Years and years of taking 60-120 mg of steroids a day would make even Twiggy look like the Stay-Puft Marshmallow Man on her best day. While I haven't been on steroids in years, thank goodness, I still live with the nasty side effects, one of them being my residual weight. I go to the gym, I workout, I swim, I watch what I eat, and slowly, I'm winning that battle. But I also have to deal with my body, one that has been riddled with a ferocious disease and aged with the residual effects, and will continue to be so until the day I die.

It's hard to understand for most people on the sidelines, and I don't blame you. I've lived with this illness for over 13 years now, and I'm still figuring it out. I'm lucky that I've been in "technical remission" since 2001, meaning that my digestive tract no longer shows physical symptoms of the ulceration caused by Crohn's. That's a wonderful thing, and I thank God everyday for it. But as far as the rest of my body goes, it will never be the same.

I always fatigue much more than normal. Because I lack a colon, I require almost twice the normal amount of fluid each day to stay hydrated. If I don't get it just right, it only adds to my fatigue. Also because I have no colon, I also struggle with nutrient absorption, which can add to my fatigue problem, and has now lead to chronic kidney pain and stones. The rheumatoid arthritis that's been here since I was 16 causes constant pain in my hands, knees, ankles and hips. Because I have an ileostomy, I have to be sure that every time I eat, the food is small enough to pass through my now-narrowed small intestine and won't cause a blockage that could send me to the hospital. My ostomy also means that I'm monitoring my skin around the site to prevent serious infection, and that my very expensive ostomy products are never too far away. Thanks to some truly nasty reactions to the chemo and other serious perscription meds I've been on, the laundry list goes on and on. Despite this, most days I don't really notice anymore, because it's my life and thanks to some accommodations I've had to make, and it's better than the alternative, not being alive. It's also just become part of my daily routine to watch out, check for, and treat accordingly all of these symptoms. But for all anyone knows to look at me, I'm just an over-weight woman who won't work out enough.

The days on which I can make it to the gym, make it through a typical work day, or not wake-up feeling like I've been run over with a semi-truck are the really good days that I'm very thankful for, because I know how few and far between they can be. There's millions more like me who may deal with different diseases like Fibromyalgia, Lupus, muscular dystrophy, diabetes, depression, arthritis, and a myriad of other illnesses, but to you, whether you're a friend, a co-worker, a neighbor, or whomever, they're just lazy.

I've done it myself, judged others without thinking, without pausing, because it's just so easy to do, and frankly, it's easier than taking the time to think about what the real cause is. But the next time, in that brief flicker before you curse them under your breath, think a terrible thought, just stop, think and consider that there maybe more than meets the eye. Perhaps, one day, they might return the favor before judging you to be too old, too fat, too slow, too skinny, or just too darn lazy.

Making the Good News

If you've been to MichLib much lately, you know I've had some serious concerns with the state of the media here in Lansing. While I don't have much to say about the Lansing State Journal as a paper, there are several fine individuals (unfortunately not in managerial roles) who are part of the LSJ team.

Let me also say this, while I have concerns about the media industry as a whole, I generally have a whole lot of respect for most of the journalists that I've come to know, both at the LSJ and particularly within the Capitol Press Corps. That's not an easy industry to work in, and it's clear that only the finest raise to the top.

That being said, I'd like to thank one journalist in particular. It's very easy to only focus on the negative, to report all the bad news, and goodness knows I do a good job of it on my own as a blogger. But when it's something other than the negative, boy is it refreshing to see.

Derek Wallbank writes the Capitol Journal blog for the LSJ. On Wednesday, Wallbank asked for some good news from his readers out of the Capitol to report. Seems as if I was the only one to respond (not sure if that's bad or good) and I offered thanks to the House who passed Rep. Andy Meisner's Restroom Access Bill. The bill would allow people like me who suffer from digestive diseases to have access, by way of a prescription, to those bathrooms in retail establishments normally reserved for employees only. There are measures built in for the security of both the business and the customer, and most everyone was on board with it.

Because I was the only one to respond, Wallbank was kind enough to make it the subject of his post. Obviously I'm pleased as punch that my email was featured, but I hope that he will consider making this Good News piece part of his regular bit, goodness know we could all use it!

While I'm fighting the Stone...

I'll also be fighting for others, and I sure could use your help.

Tuesday morning at 10:30 I'll be testifying before the House Commerce Committee about the Restroom Access Bill, HB 5046, introduced by Rep. Andy Meisner, and co-sponsored by Mid-Michigan Representative Barb Byrum. The bill is designed to provide restroom access to people with eligible medical conditions where a public bathroom might not specifically be available, i.e. retail businesses.

Rep. Meisner introduced the original bill two years ago, spurred by a constituent with Crohn's Disease who would no longer shop outside of her home because of an incident where the retail establishment would not let her use their private bathroom resulting in a very embarrassing situation for her.

This is no joke. When you have a digestive disease such as Crohn's Disease, Ulcerative Colitis, Irritable Bowel Syndrome (IBS), etc, there are times where you need immediate access to a bathroom. Being denied it, especially as an adult, is incredibly humiliating and embarrassing. Certain aspects of your entire life are controlled due to your disease.

For instance, for the 10 years that my Crohn's was particularly bad, there were certain restaurants and stores that I refused to visit because they either did not have public bathrooms or they were less than hygienic to use, and that I knew should the sudden and terrible urge hit me, I would be left in a very undesirable situation. I know this to be the case of most others who suffer with these conditions.

These businesses lost out on my business, and in turn, the state lost out on much needed revenue in the form of sales tax. It was a losing situation for all parties involved.

For those of you thinking that it's just common sense for people to make their bathrooms available to someone with a medical condition like the ones described above, I'd agree with you. Unfortunately reality dictates that common sense is not always so common.

The bill works because it gives responsibilities to both the consumer and the business.

The customer provides the retail establishment with a copy of a statement on a prescription form that indicates the customer suffers from an eligible medical condition or utilizes an ostomy device, signed by a doctor.

Protections for the business include -

Two or more employees of the retail establishment are working at the time the customer requests use of the employee toilet facility.

and

The employee toilet facility is not located in an area where providing access would create an obvious health or safety risk to the customer or an obvious security risk to the retail establishment.

Many of us know someone who lives with either Crohn's Disease, Ulcerative Colitis, IBS, and/or lives with an ostomy. We also know probably know of the pain, the embarrassment, and trials they have been through to carry on with their lives. As you support them in their goal to live a productive life, also support them in their quest to be have the same privileges and rights you would want if you were in their shoes.

Take three minutes out of your day and ask your state representative to support HB 5046, the Restroom Access Bill. Make Michigan the supportive state we know it to be, in our communities, in our health, and in our commerce.

Gone Fishin' ...

...for a kidney stone. No joke.

A trip to the local Urgent Care last night revealed the biggest kidney stone the doctor had ever seen lodge in my lil ol kidney. Actually, if you want to get technical, the body is only capable of passing a 4 mm stone. Mine is a whopping 3 cm. Fantastic, huh?

I spent most of the YearlyKos Convention trying to pass one that was nothing compared to this. For those of you who've had kidney stones, you know how bad they are. For those of you who haven't, imagine childbirth, or so I've been told by mothers who've had the stones.

Tomorrow I find out if it's going to get lasered to be blown up into smaller pieces that my body can handle, or if I have to have yet another surgery to have it removed.

So, I might be out for a couple days, but hopefully not.

The pain's terrible, the prospect of another medical procedure, much less a surgery is terrifying, and I'm reminded again of the realities of life with Crohn's Disease.

While my Crohn's is in remission, and there's no active disease within my body, the absence of my large intestine (colon) makes it very hard for my body to absorb nutrients and minerals, particularly calcium. For some reason, calcium has always been hard on my body since my ileostomy surgery 9 years ago. I've grown used to the calcium forming these stones in my kidneys several times a year and then my body trying to rid itself of them. Problem is, this is the first time the stones have been so big I can't physically pass them.

The problems my forever-weakened immune system now face are a serious kidney infection, and my blood count being too high and too low, all at the same time. If left unattended, this particular stone has the potential of causing permanent damage to my kidneys, and my body's not quite equipped to deal with that or a serious infection, after a previous infection years ago nearly killed me.

I'm not complaining, because I'm still alive. This is just another day in the life of a person who lives with a chronic illness and the frequent reminders of how precious the good days really are.

This maybe not what I have ordered, but it's another opportunity to learn to appreciate what you have and to continue to make a difference in the lives of others, because in the end, that's what life is really about.

Rest in Peace, Miles

A couple months ago I highlighted the story of Miles Levin, the 18 year-old from Oakland County that was fighting a rare and often deadly form of cancer.

Since his story was told in the Detroit News, I've been following his fight and journey on CarePages, a great blogging tool made especially for those in hospital or fighting serious illnesses, something they didn't yet have when I was so sick.

About a month ago, doctors made it clear that Miles would not beat his cancer and while those of us following along knew the end was near, many of us still hoped for a miracle.

Each time as of late that I received an email notifying that Miles' page had been updated, a sense of dread loomed over. This morning it was confirmed, Miles passed away.

I can't imagine what his parents and sister must be going through, but I bet for him personally it is a relief and a blessing, or at least, that's how I would imagine it after my long experience with a serious illness and pain.

Often times when my body was racked with pain and the illness seemed to completely consume every part of my life, I prayed for an end to it all.

Sometimes that meant death, other times it meant a deep, unconscious sleep that lasted for months until my body could heal itself. I never quite tolerated painkillers very well, and my threshold for pain was so high, that often times I was just left to deal with it, despite the doctors and nurses best efforts.

Miles described his last couple weeks as full of pain, something that reminded me a lot of my pain, mind-numbing and all-consuming. While I don't believe that anyone really sets out to die, given his experience, his pain, and his revelations on life and dying with dignity, I believe that Miles was ready to move on from this earthly life to something better. Here are his words, courtesy of the Detroit News, on death and dying -

If my struggle with cancer galvanizes actions of goodness, I can rest assured that even if I succumb to the rogue cells I will leave behind a legacy of victory. Dying is not what scares me. It's dying and having had no impact.

Miles will be missed by many of us who never met him. The thousands and thousands of lives he touched through his blog, his interview with CNN's Anderson Cooper, his caregivers at Beaumont Hospital, and of course his friends and family can never quite be counted. His impact on all of us, guiding us how to live and die with dignity in a most uncontrollable situation will be forever felt.

Rest in peace Miles, God knows you've earned it.

Update: The Detroit News' Laura Berman has a touching memoriam to Levin here

Crash and Burn

Fido Immortalized
Originally uploaded by wizardkitten

I like to pretend that I'm superhuman.

Actually, I just like to pretend that I'm healthy and that I really don't live with a chronic illness. But all it takes is a couple weeks of spinning my wheels in 14 different directions without a whole lot of rest for reality to smack me in the face.

Case in point: Now.

Between my trip to NY for the bike ride, and an intense week in D.C. where we were going from 8am to midnight nearly everyday (that doesn't account for social time, by the way), my birthday, and all the hustle and bustle that happens in between them, I've once again run myself ragged.

Logically, I understand that I generally need a solid 8 hours of sleep, and when it's particularly hot and humid, I need to stay low and drink plenty of fluids, and that too many days and nights without sleep and rest can only lead to one thing - crash and burn.

I've spoken before of the drive within me. It's a passionate, intense drive that I battle with day after day. In the fight of body vs. mind, the mind usually wins. As a result, my body suffers, and there's usually a day or two where I'm good for nothing more than lots of sleep and resting. This would be one of those days.

I realize that everyday I'm here is an added bonus, and that I should be taking care of myself. I may be pushing 30, but my body often feels twice that.

I also realize that everyday I'm here is an added bonus, and one more opportunity to do something worthwhile that needs to be done, to make an impact, to influence change. What's a little ache and pain when the results benefit many?

Somewhere, there's a balance between the two. Each day, I get a little better about dancing around it a little closer, and the periods of crash and burn lie farther and farther apart.

I measure my life not by ordinary standards, but by the change that I affect. I honestly account that for the sole reason I'm still alive when by all other standards, I should have been dead years ago.

So if one day my body wins over my mind, which at this rate it is sure to do, and that passionate drive within me is extinguished, does that mean my job is done?

It's a scary thought, one that my youth isn't quite prepared to deal with. So for now, I'll just go on pretending I'm superhuman, that is, until the next time I crash and burn.

Many thanks to an extraordinary blogger/photojournalist and good friend, Wizardkitten, for this photo.

On the eve of the trip...

Dear Friends -

Many, many thanks to all of you for your support both on and off-line as I gear up for the ride.

With this as my second year, there's a little less anxiety involved, more excitement, and a bigger stock of pain relievers going with me on this trip.

I'll be the first to admit, I'm not nearly in shape like I was last year. Through my friend Robert's tragic death, moving to a new place, getting settled into a new career, and life in general, I'm grateful just to be able to go. I may not ride all 210 (218 to be exact) miles, but I'm proud that I'm going, have raised a good deal of money for a great cause, and will be there to show myself and the world that living with Crohn's Disease and an ostomy doesn't mean your life is over.

I'll be staying with a friend/fellow blogger, Lipris from The Albany Project (think the NY version of MichLib) in NYC for a couple days before the ride to see the sights and have some fun before the big ride that starts next Friday morning at the crack of dawn.

You can follow the 79 other riders and 50+ crew and I as we ride here at LLP - I'll be updating at the end of each day.

Despite a less-than-fabulous forecast of showers and storms Friday and Saturday, I'm excited. I'll be seeing a beautiful part of NY for the first time, and will be taking in all the sights. I've heard nothing but beautiful things about the Hudson River Valley.

Check out the website to follow the path we'll be taking, or if you're feeling the need to help me get a little closer to my goal of $15,000.

Be sure to look for the pictures when I get back!

Thank you again, from the bottom of my heart. Your support never ceases to amaze and humble me.

~LL

A Pollyanna kind of Acceptance

After viewing my most recent appearance on OTR, I was informed that I was "such a Pollyanna". My first reaction was to get offended, but as quickly as my temper began to ignite, I realized it was neither meant as a criticism nor should I take it as an offensive remark.

For those of you unfamiliar with the term, or the Haley Mills movie of the 1950's, let me share with you what it means for me.

I'm definitely what you would call an optimistic person. I see the good in everything, and for the most part, everyone. Even the things that I don't like or agree with, I do my best to see the positive side of it.

When many people hear the story of my journey with Crohn's Disease, and all of the battles that consumed my life for over 13 years now and continue to do so, they look at me in bewilderment. How can I possibly be so happy, positive, optimistic, sunny, etc ? I explained a bit last week, but let me venture a little further down this road.

First off, I really thought my life was over at the age of 15/16 when I first received my diagnosis. Many, many times as the angry red seas of pain consumed me I was so desperate for relief that I really just wanted to die. I wasn't suicidal, but I wanted out of my trapped body, and death seemed to be the only way. I cursed God, my genes, the doctors, the nurses, my family, and anything else that made for an easy target of my frustration and utter agony.

I was too much of a fighter to let this disease take it all away, and if nothing else could be said for me, I was a bit of a control freak. I had worked too hard to stay alive and have a good life to let some ridiculous disease end it all.

Somewhere along it all, I realized that 90% of my battle was really about attitude. I begrudgingly accepted this broken down and aching body was mine, and there was very little that I could really control, except my attitude.

It all boils down to a coping mechanism. My 'Pollyanna attitude' is how I cope. Why did I get so sick? Why do I still live with the very real threat that in an instant I could be plunged back down that road of hospitals, tests, and pain should my Crohn's flare back up? Why do I have to live daily with rheumatoid arthritis, constant fatigue, abdominal obstructions that sideline me for days, bizarre allergies, and a body that bares so many scars from my 35 surgeries?

Here's what I think - I think my body serves as a reminder of what I've survived, what I had to endure to get to this point, and precisely what made me the person I am today. I think my aches, pains, and fatigue remind me that as much as my mind would prefer, I am not invincible. It's a trap that we all fall into, especially the young. I'm lucky that time has erased many of the vivid moments of pain, but the haunting memories will forever stay.

I don't know why I survived, but I can guess. I realize everyday that I'm living on borrowed time, and I believe that it's only because I'm supposed to make something good out of that extra time. From the very essence of my core, there's a burning fire within me to change the world.

Wow, how many times have you heard that in a beauty pageant, a young child, or from someone else and just rolled your eyes? Yeah, we all have.

But it's true. If I can be a part of something good, then another piece of the puzzle that is my life suddenly finds its home, and I take one more step forward.

I take the lessons I've learned along the way and do what I can to help out. My life unraveled and here I find myself in the intricate world of policy and government. There's so many possibilities that exist for a better change out there, so many ideas, so many fantastic people working so hard, it makes me want to run in 15 different directions and solve all the world's problems with one fell swoop. But then I wake up, feel the aches and pains, and am reminded that I'm limited to only one or two.

My mother likes to remind me what my life's goal is - balance, between the emotional and physical, the wants and the needs, and reality and the dreams of my future. I believe that I'll never quite achieve perfect balance, but each day I creep a little closer. Until then, there will be more days like this past week on the campaign trail, where I willingly endure the physical pain to accomplish something that gives me peace of mind.

I'm unashamedly part dreamer, part optimist, and part believer. Besides, if it weren't for the Pollyannas in the world, who else would you have to roll your eyes at? :-)

210 Miles, 3 Days, and a Life Dedicated to Making a Difference

Why?

I've heard that question so many times in the last 13 years of my life.

Why do I blog? Why am I so politically active? Why am I so positive, up-beat, and passionate?

There's many ways and words in which I could answer those questions with, but I think it all boils down to these few -

I survived.

I've recently been a lot more open about my life, and the circumstances that played into the making of Liberal Lucy. Let me really give you the full scoop.

I grew up in Metro Detroit, the oldest of three, the daughter of an auto-worker and a teacher. I was the girl who was involved in everything. I was a varsity swimmer, traveled to Europe as part of an honors choir, participated on the Debate Team and Model United Nations, founded my high school's first Students Against Driving Drunk chapter, acted in school plays and musicals, active my church's youth ministry program - you get the picture. Classic over-achiever, all-American girl with a great life.

And then I got sick.

And So It Begins

I first developed the strange, embarrassing symptoms at the age of 14. Wrapped in the blissful ignorance that is youth, I decided that if I ignored this interruption to my life, then it would just go away. Of course, reality smacks you in the face and you quickly realize that's not the case.

Being sick wasn't convenient to my busy schedule, and in part fear, part anger, I worked even harder to hide my symptoms from my family over the next year, and more importantly, myself. The downward spiral continued to get worse until my parents started noticing a drastic change in the bundle of energy that was their eldest child. I spent too much time in the bathroom, I was losing weight, my energy level was drastically reduced, and I was barely eating. I don't think anyone will forget that fateful day when I finally had to come clean and tell my parents exactly how sick I really was.

That first visit to my pediatrician led to an appointment with a pediatric gastroenterologist the very next day at Mott Children's Hospital at the University of Michigan, which was followed with the first of many colonoscopies, Upper and Lower GI's, X-rays, blood draws, hospitalizations, steroids, and worst of all, unbearable, excruciating pain.

After an original diagnosis of Ulcerative Colitis, the real culprit turned out to be Crohn's Disease. Not just any case of Crohn's, but as doctor after doctor solemnly informed us, one of the worst cases they'd ever seen in anyone, particularly someone my age. My large intestine (colon) and rectum looked like a bloody war had raged for years.

That would be the story of my life for over the next decade. With no known cause or cure, those of us with Crohn's Disease and Ulcerative Colitis, collectively known as Inflammatory Bowel Disease, are left to the medical profession's highly paid guessing. I never responded to any of the medications and traditional treatments. Painful new complications and side effects popped up at an alarmingly increasing rate. I developed rheumatoid arthritis, strange food allergies, super-bacterial infections, fistulas, and quite a few close calls where my life literally hung in a perilous balance.

Not an End, But a New Beginning

Despite mind-numbing pain, long periods of deep depression, over 70 hospitalizations and a whopping 35 different surgeries and procedures, I somehow managed to graduate high school on time, go to college, date, fall in love, have my heart broken, travel, lobby Congress and our state Legislature, be a leader within the student government, and have fun. It wasn't easy, and looking back, I know there's a simple explanation for how I did it all.

I didn't give up, I kept fighting, and I believe that God had other plans in store for me.

Ultimately I made a decision that changed my life, and at the age of 19, I decided to have my colon and rectum removed, and live the rest of my life with a permanent ileostomy. While it took me several years to come to terms with this new adjustment, it's a decision that I now celebrate. That surgery finally put my Crohn's into remission, and my body was finally allowed to start healing itself. I can now do more with my ileostomy than I ever could without it, mainly because I can finally live my life, no longer around the auspice of a crippling disease.

I believe that my life is supposed to be more than just that of a chronically ill person. I deal with my illness, the incredible pain, and all of the other terrible things by believing that all of it, the good and the bad, can be used to do so much for others. My life is about making a difference for others. After many years now I believe that I have been blessed with my Crohn's Disease and ileostomy.

I don't measure my life by how many friends I have, the degrees I may or may not attain, or the money and publicity that I may find. I measure my life in the difference that I can make for others.

It is with that spirit that I advocate, blog, and even when it's hard to do, stay positive and up-beat.

Getting My Guts in Gear

It is also with that spirit that for the second year, I ride. For three days next month, I will join others who have Crohn's/Ulcerative Colitis and their friends and family and ride 210 miles in three days.

Fondly known as Get Your Guts in Gear, the ride is designed to educate, advocate and raise money for the millions of us who suffer, and even more tragically, the millions more who will join us with their new diagnosis in the coming weeks, months and years.

Last year I raised over $21,000, despite setting an ambitious goal of $10,000. This year I'm aiming for $15,000. I humbly ask you to support me on this endeavor.

You can visit my ride page online, where you can read more about my story and others, Crohn's Disease and Ulcerative Colitis, and donate securely online. You can help by spreading the word, and informing others. Chances are pretty good that you know someone yourself with one of these illnesses.

Change can begin on a blog, in the home, on a bike, and always in the heart. Thank you for being a part of this incredible journey.

Thank you, Sen. Stabenow

I got an email from a friend last night telling me he heard Sen. Debbie Stabenow mention my name on the Senate Floor. When it was clear he wasn't joking, I decided to do a little digging.

I had emailed Senator Stabenow's office about six months ago, urging her to continue to support stem cell research. My stake in this debate is a bit more selfish, as I've nearly died more times than I've care to count as a result of one of the most severe cases of Crohn's Disease ever seen by many of Michigan's doctors. In fact, for full disclosure, being so sick with Crohn's is what inspired my foray into blogging and politics in the first place. At last count, I've been hospitalized over 70 times and had 35 surgeries. Needless to say I'm lucky to be alive.

There is no known cause for Crohn's and no cure. Those of us with Crohn's are just stuck with it, subject to the medical profession's highly paid guessing. There are some who manage their disease through medicine and diet, and others like me, who must have major portions of their digestive tract removed and learn to adapt to life despite our permanent disability, as the government classifies us. Then there are others, too many, who die.

Living with Crohn's for almost 13 years now I know more about it than most doctors. I can tell you the latest medicines, treatments, theories, and the famous among us (including Dubya's younger brother) who suffer. I can also tell you that the only promising future for curing this incredibly destructive disease lies in stem cell research. My life's struggle in staying alive, staying active, and staying focused on the future and living the rest of my life with this disease also means fighting for a cure.

Day in and day out, I write on these blogs asking you to get involved in your government, making it work for you, and engaging our public servants in serving the us, the people. Today, I offer you one more piece of proof why I so firmly believe in the power of civic engagement.

From Senator Stabenow's Senate Floor Speech:

As co-chair of the Senate bipartisan Parkinson’s Caucus, I’ve received letters and calls from people all across our great nation on how important stem cell research is to them, how important this legislation, this opportunity at this time is to them and their families. I’ve met many Michigan families who deal with chronic health issues every single day.
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Another bright young woman who visited my office several times is Julielyn Gibbons. For over 12 years, Julielyn has lived with Crohn’s diseases - a disease that causes intense abdominal pain. For her, stem cell research offers the promise of not only curing this life-long, debilitating disease, but also the hope of being able to live a normal life. She emailed me, ‘I want to be able to bring children into the world knowing that they won’t have to suffer as I have and that possibility best exists through stem cell research.’ S. 5, a strong bipartisan bill, is an important, in fact, a critical step forward toward giving Julielyn and Kate that hopeful future that we all want for our children.
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Hopefully we will not have many more people that will be seeing their lives deteriorate or lose their lives before we are able to actually begin to do what needs to be done with this research. It’s for them and for all the families I’ve met that I will cast my vote this week: a vote for life, for hope, for a bright future. I know that the cures won’t come tomorrow, but they may never come if we do not act now.

Last night, the Senate passed the bill 63-34.

Thank you, Senator Stabenow, for fighting for me, and for all those who suffer like me. Thank you for reaffirming my faith in my government, in my state and in my country.