Unconditional Love

Last weekend I was exposed to my first Body Building Competition, thanks to my 18 year old muscle bound brother. It was his first competition and he had dubbed me as his “assistant”. What this job would entail I wouldn’t find out until it was too late.

As we entered the small high school auditorium in Westerly, Rhode Island I viewed the stage area and the swarm of hard bodied competitors both male and female, most of which looked like they could squash me with their pinky finger. Mind you this is a “Natural Body Building Competition” as my brother pointed out. They are required to complete a polygraph test and sign some documents stating that no illegal substances were used in an effort to “bulk up”. Well if this is the case I’m not sure I ever want to see what the non-natural competitors look like, roids and all.

I sat with my family as we watched them set up the staging area. I was then instructed to go to the car to get my brothers food, which consisted of brown rice, a banana and some sausage. When I looked around I noticed the rest of the competitors all seemed to be eating the same thing – rice. I then learned as I offered my brother some water that it is customary to not drink any fluids prior to the competition. I guess dehydrating your body aids in making the muscles appear more defined. Now I’m worried that my brother may pass out on stage.

Both my brother and his 2 friends who were competing with him and against him all had their legs up in the air resting on the row of chairs in front of us, odd.

“What are you all doing with your legs?” I asked.

“We have to keep them elevated otherwise the blood pools in the legs and your calf muscles won’t really appear as defined as they could” He replied gruffly.

Suddenly I was running outside after my brother and his two friends.

“Come with us, and bring those vinyl gloves I told you to bring”

What happened next I try not to give much thought, but really it is the point of this entry, unconditional love. I put the gloves on as my brother handed me a spray bottle full of tanning fluid. He took his shirt off, and right there in front of the main entrance to the high school I started spraying some instant pro tan concoction and then spreading it evenly as to not leave a streaky appearance. The stuff dried fast and suddenly we were running late according to my brother so I was like a robot, spray then rub in, spray then buff, spray then distribute. Suddenly I notice his friends getting in line and taking off their shirts. What?! I was not aware I was assisting all 3 of them! After I get all three of them rubbed down from the waist up we are running backstage to finalize getting them stage ready.

I enter the backstage area and witness all of the hard bodies standing around in their speedos and stringlike things that pass for bikinis, red speedos, neon green speedos, gold speedos, sparkly speedos. They were doing pushups and lifting weights and posing in front of mirrors, all the while rubbing themselves down with instant tanning sprays and gels that look something like chocolate pudding. I could taste the tanning sprays as soon as I entered the backstage area. The smell assaulted my nasal passages, throat and mouth. My lungs were getting a tan that’s for sure.

Once we got to our area I could tell the boys, who were new at this, were a bit shy.

“Drop your pants boys no time for being shy we are on a time schedule!” I yelled. Who was this person?!

“Don’t ever doubt my love for you again, you owe me big time.” I remarked to my brother.

Now instant tanner needs to be rubbed into the legs, yeah I’m talking ass, thighs, right down to the feet. I’m a robot now, my brother is first in line, then I move on to his friends, I tried not to think about what I was doing and just focus on getting the job done as quickly as possible.

My brother’s 40 something year old mentor comes over after we had finished prepping and observes my handiwork.

“Where did you find this girl Matt, I can’t even get my girlfriend to do this?” He asked.

“He is lucky I’m related to him, this is what you would refer to as unconditional love.” I answered with a smile.

My brother went on to place 1st in the Debut category and 2nd in the Teen category, which made it all worth it, tan lungs, hands and all.

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.

Disconnect

August 2007
Following my colonoscopy I was trying to come out of the haze of anesthesia they had put me under, and process what my doctor was telling me.
“As I suspected, you have Crohn’s Disease.” She touched my arm in a sympathetic manner, and I could feel my mother sitting to my left, inhale deeply as she heard the news. I nodded as she explained the pills she would send me home with. Ten pills a day, wonderful.

On a scale of 1-10, with 10 being the worst my doc had seen, I was a 7, fantastic. I then asked for saltine crackers as I hadn’t eaten in almost 30 hours. I inhaled the crackers and watched as my mother asked the questions. Thank god she was there to bear witness because I had checked out at that point. I was anemic, with internal bleeding in my ileum, tired, weak, drugged and hungry.

At the moment I got the news all I could feel was a huge sense of relief that at least I finally had a term for what I had been going through. I wasn’t imagining it all, it wasn’t all in my head that I could barely make it through an 8 hour day at work without collapsing from exhaustion. Six doctors and one year later I finally had a term, which meant people would now believe me, and take me seriously. Finally there was an explanation, which meant there had to be hope.

It wasn’t until an hour later, while sitting and waiting for a sandwich that the gravity of my situation hit me like a ton of bricks. I assume this is when the meds wore off. My mother was standing at the counter waiting for our food, and I was seated in the middle of the deli. Suddenly I was sobbing uncontrollably; I had no concern for any of the other customers who were there. I was having some sort of tunnel vision, it seemed like an out of body experience. I couldn’t believe what was happening to me, what I would have to endure. It seemed I was outside of my body watching myself when I took my mother’s advice, pushed past the onlookers and walked towards the car.

I'm Taking Steps in White Plains for the CCFA. Visit my page!

http://online.ccfa.org/goto/JenSantiago

A very worthwhile cause! Soliciting for donations on my blog, yes I am shameless.

The Morbid Admitting Department Followed by More Morbidness

April 2009

After 10 minutes of catching up on my smut reading in the Admitting holding area at Greenwich Hospital I’m called into one of the offices to begin the admittance process. Basically I sign my life away and make sure they know who to call if I die.

Upon entering the room and sitting down I glance around to take in my surroundings. What is the first thing I notice? A list titled “Funeral Homes” in boldface with contact numbers tacked up next to the telephone, nice. I’m not sure about anyone else, but this is the last thing I want to see as I’m having a wristband with my name and own personal barcode slapped on. Not to mention the question “Are you sure your mother is the only one you want to list as your next of kin?” Thanks lady, why not wheel me into the morgue right now?!

Just as I started to settle into my hospital bed and was concentrating on putting all of the morbid thoughts behind me, I observe a stream of very distraught people moving in and out of the room across the hallway. Normally I wouldn’t take notice of such things, however on this particular visit, I had been placed in the Medical Oncology department, AKA cancer ward. I usually don’t bother the nurse with keeping my door closed as they have to monitor my vitals every 15 minutes, and tend to forget about me which leads to the damn machine beeping uncontrollably until they come back. In an effort to stay on their radar I keep the door open. After this particular visit I will have no problem asking them to close my door in the future.

I’m no longer focused on my reading and I’ve turned off the TV, my attention is now focused on the show that is taking place directly across the hall from my room. After watching 10 or more people move in and out of the room looking visibly shaken, the priest shows up. He appears to float across the hallway and into the room with his floor length black cloak and white collar. I’ve done this hospital thing long enough to know what he was there for. He was there to administer “Last Rites” to the patient, the sacrament of the dying, or as Wikipedia would call it “Anointing of the Sick”. This is when I pressed the nurse button and kindly asked them to close my door. Jesus Mary and Joseph get me the hell out of here!

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