The Most Obnoxious Patient

When I was diagnosed with Crohn’s disease my doc suspected that I had been living with the condition for 2-3 years. I have a major problem with this. Why had none of the bazillion doctors I had seen in the past 2 years made the connection?! I’ll tell you why - doctors are not gods, they make mistakes like everyone else, and for the most part are overwhelmed and uninterested in doing any extra research.

According to Healthgrades.com, a reputable healthcare quality company, an average of 195,000 people in the U.S. died due to preventable, in-hospital medical errors in each of the years 2000, 2001 and 2002. I will not be another statistic. Had my condition gone undiagnosed for much longer it is very likely that I could have died from complications of my disease.

Unbeknown to me my GYN had Ulcerative Colitis. When I was seen for my annual visit she took one look at my bloodwork and told me to immediately see a GI doctor, only then did I receive the proper diagnosis. Never mind the hematologist, the 3 rheumatologists, the sports injury specialist, the chiropractor, and my general physician that I had been seen by over the last 2 years, all of whom had my bloodwork and knowledge of my ongoing symptoms; which were all red flags for IBD.

I am proud to admit that I am now one of the most obnoxious patients a doctor will ever come across, why? Because I research, I ask questions, I come to appointments armed with detailed notes on what I can argue with my doctor about on any particular visit. I’m not going to let my doctors slip up, I’m going to make sure they are paying attention.

It is so very important to become an active part of your own treatment team, become a helpful partner in managing your own health care. Many doctors will be threatened by this, most doctors don’t like when you question their particular form of treatment. If this is the case, find a new doctor!!

I am now an informed patient who takes full responsibility for MY health agenda. I am the only advocate for my body and if my doctor has a problem with 20 plus questions – NEXT!

After all we are the ones living with these diseases, not them.

The Cards I Was Dealt

I have an arthritic condition called Ankylosing Spondylitis - yes, say that 5 times fast, and Crohn's Disease. It took a slew of incompetent doctors 6 years to figure out what was wrong, which to me was 6 years of misery, of feeling like shit with no answers.

One might think the diagnosis of a chronic incurable disease would be heartbreaking. By the time I received my diagnosis all I felt was relief, relief that I wasn't losing my mind, and that there was a reason behind why I was constantly struggling and feeling horrible, and there was some form of treatment. No there is no cure for either condition, but just the knowledge that there were drugs that could help me manage my symptoms was the light at the end of my tunnel.

Dont get me wrong, in the 6 months following my Crohn's diagnosis I went through all the stages of mourning. I was in denial for a while, questioning my doctors knowledge of the disease, seeking second opinions, I was angry, I was depressed, and you know the rest. I had to mourn the death of my healthy self, because at the onset of my diagnosis, when I looked into the mirror, I didn't even recognize the pale, skinny, pathetic looking person who stared back at me. Dark circles under my red swollen eyes, cheekbones that protruded because of the weight I had lost, and a look of hopelessness in my eyes. Who was I? Was I going to let this change me? Why is was this happening to me? What had I done to deserve such a thing?

I threw myself my own personal pity party for about a year, then as the meds started to kick in and I started to gain my strength back, I started to remember who I was prior to becoming sick. I volunteered at a local homeless shelter to force myself to open my eyes to others, that YES, could possibly be worse off than myself.

Four years after my AS diagnosis and two years after my diagnosis of Crohn's disease I am finally able to say I've made peace with the cards I've been dealt, and even better I can say that it has taught me some very important lessons.

Everyone is fighting their own personal battles, no one is free from pain, despair, or hard times. I cannot say it any better so I will quote one of my favorite pieces of literature. "Accept misfortune as the human condition" - Tao Te Ching Once you are able to do this, you gain acceptance, and by that action alone, you gain everything, you have the ability to take control of your life once again.

I will share a piece of poetry that I've written. I hadn't written a poem in at least 10 years so be warned, but the process was very therapeutic to me and I hope you will enjoy. At the very least I hope this can help at least one person out there who is trying to come to terms with a chronic disease.


Enjoy, be well, and most importantly, be strong.


Affirming My Strength

My reflection in the mirror

Paleness and fatigue is all I see

I look but don’t recognize

My body has betrayed me

You say you can’t cure me ‘It’s chronic not deadly.’

Blue pills, yellow pills, too many pills

These strangers are trying to break me

Hospitals and needles; can you inject me with faith?

The physical pain I can take

It’s the helplessness that kills me

I keep pushing, keep breathing

Please give me my space

I focus on strength, not fear

Watch me endure, no more fighting back tears

Finally I’m in a place where no one can touch me

I’ve found acceptance and THIS is what saves me