LIFESTYLE: I Have Chronic Illness, but I Don't (and Can't) Let it Define Me.


I felt the need to write something a bit personal, because it has weighed heavily on my mind as of late. And I feel that if I share a little about my journey, I may help and give hope to others. I think it is because the past 6+ months I have been surrounded by friends, family and associates discovering they have a chronic illnesses. Maybe it's my age group now, and it is something expected that comes with all the mid-life crisis party gags? Either way, it has made me ponder a lot of things lately. Particularly when I lost a dear friend of mine to Lymphoma late last year. She was, shockingly, only in her mid 40's.

The loss of my friend, a vibrant mother of a 7 1/2 year old who's life force could brighten a room, was a sobering moment for me. She had struggled with Rheumatoid Arthritis since her mid 30's (an autoimmune disorder similar to my own) and thought the drug Humira was a blessing. It allowed her to function again, pain free. But as all things in health care, it's give and take. Humira was probably the cause of her Lymphoma years later, and we lost her.

The reason why I tell you this sad story is to honor her memory and to also help tell about my own  journey with Crohn's Disease. The doctors recently told me I should get on an autoimmune drug similar to Humira. I had been holding them at bay for the past couple of years, and my friend's experience with Humira has proven to me I should try and wait as long as possible. I am a frustrating patient at times. They have suggested other treatments for me, and after I do research I show up with print outs and a printed list of my questions, and I either agree or go find a new doctor. My Crohn's disease is an old friend by now. I have had it since I was 27, and the many twists and turns with various doctors and treatments I have dealt with has taught me many things, and some learned the very hard way. (an article I wrote a few years after I was diagnosed is here, about ways to holistically deal with it, among other personal insights, that have worked for me.) But the absolute, most important thing I learned is this; YOU are in charge. It's YOUR body and it's YOUR life. YOU need to decide what quality you want it to be. The doctors are your guide (some good, some not). They know a lot, but they only know you for the 15 minutes they are allotted to you per visit (unless you get a REALLY good one that will take more time). You know your body best, and you know what your family can take depending on what each treatment will mean, even for them.

Chronic illnesses are with you forever. They never go away. It's all in how you "manage" it. And this is the next important thing I learned. If it is always there with you, you need to find a way to not let it run your life or BE your life. You cannot let it define who you are. You have to find that balance of 1: managing it that works and 2: allows you to still be all you need and want to be in your daily life.

I have been inspired and amazed by people around me that have done just that. My brother -n-law just found out he has RA and he is managing it with lifestyle changes and some holistic approaches first. He own his own business and is the father of a 4 and 2 year old. He does not have time to live at the hospital to get transfusions of Remicade. If that's the next step for him to function, he will have to make that choice. But right now it's working and he is managing it. And he can still be a father, husband, son, recreational hunter and business owner without skipping a beat. I have an associate that found out he has Parkinson's, and you would never had known it. They are figuring out right now what he should be on, but he has not missed a meeting of ours and still is active in his leadership role in his organization. I have an old high school friend who has battled cancer and is now struggling with Sarcoidosis. In between visits to the mayo clinic she is still modeling and getting roles in plays and movies, not to mention a single super-mom! She is not letting it slow her down one bit. The list goes on and on. And it is their strength and courage that gives me the same. And sometimes, I am not sure if doctors quite understand. And if they don't you need to make them.

My recent appointment with my GI last year had to do with just that. I had made huge lifestyle changes in my diet, where I took out refined sugar and flour, and I was still on a maintenance dose of Asacol-from which I have no side affects. So I was really in a good place. My Crohn's was quite for a while and I was doing fine. But she still suggested that my problems I had after the birth of my daughter was because Asacol was not strong enough, and that I should get on Remicade or Humira. Then she explained I would need to be at the hospital for a bazillion times before we start, then get transfusions every 2 weeks at first, and monitor, then move to every 4 weeks. Then I asked how much it was per treatment and I almost fell out of my chair! (I thought Asacol was expensive! Holy Toledo!) Well, I explained to my doctor that, "I am and have been feeling good. I can't spend that much time at the hospital focused on this! I run an ad agency, I'm a mom of a young child, brownie leader, lifestyle blogger...the list goes on. I'M BUSY!" She just looked baffled. "Why couldn't I fit it in one day a week. Couldn't I come in late for work one day a week? Isn't my health that important?" But she agreed to wait it out and see, which I appreciated. A doctor who listened and worked with me (not against) is a doctor to keep!

YES my health is important! I made lifestyle changes to accommodate it and it's working. I am feeling good right now. I am managing it. And I have stayed the course for over a year and it is still being managed. You see, I know eventually I will need to get on something stronger. It's in the cards. But I see it as, until I really need it to function and have a life, I am not going there yet. It's give and take-and every year I can put it off is possibly another extra year on the back end. Autoimmune suppressants have a lot of side affects-my dearest friend in heaven, God bless, can attest to that.

I am due to see the GI for my annual next month. I know I will get scolded for not coming in sooner. I know I will be lectured about getting on something stronger. But I know I am still OK. I know what a flare up is, and I am not dumb enough to let it go. Too many people are relying on to be responsible with my health. But as long as I am doing fine, I am going to...as the late Elizabeth Edwards said while she was battling cancer, "GET BUSY LIVING v.s. get busy dying." If you have a chronic illness, I urge and pray that you find a way to do the same. Thank you for allowing me to share.

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