A Writer's Life Interrupted #crohns #crohnsdisease

I threw in the towel and went to  see my doctor. The conversation went somewhat like this: 

"Have you been taking your Uceris?"

Uceris is an extremely expensive medication. Like around 3200 a month.

I answer, "I get it from Canada." 

"But are you taking it?"

"Sometimes." I am sensing his frustration and we are only three sentences into the conversation. 

"What is the longest you have taken it?" 

"Six months?"  I feel like I am fishing for the best answer. I like to get 100% on tests. 

"You were suppose to take it for a short time then you were to be weaned off it." 

"No way."  I am thinking in my head: Well, WTF. No one ever told me.

I am an incorrigible patient. My doctor is a really nice guy. I just hate being there and so I dislike him by osmosis. I don't even want to have this conversation, but I know I must. I really don't want to discuss my bowels, in my opinion they are no ones business but my own. If I tell him Crohn's is flaring then it is. I don't need second guesses or the third degree.

"So, you think Crohn's is acting up." 

I reply, "Well I'm bleeding out my you know what, I have horrible cramping, and I took a picture of what comes out after an hour of pain and effort. Wanna see it?"

"Uh, OK." 

I bring up the picture in my phone and hand it to him. 

"Hum. Are you running a fever?" 

This time I glare at him. I am thinking, I live on Extra Strength Tylenol and the only way I'm going to find out if I am running a fever is to stop. How do I tell this really nice person that to answer him would cost me a day's worth of agony?

I choose to answer, "No." 

"Well then you don't have an infection." 

*face palm*

Now, I have a choice to tell him about the Tylenol or just ignore him. I hate being here anyway. It reminds me of my vulnerability, my dependence on modern medical pharmacopia. I say nothing, which is never the right thing to do.  However, I have pretty awesome luck with Crohn's. Sometimes it flares and then completely disappears, but somehow I don't think it will this time. 

He leans in. "We really don't want to put you back on that medicine again, do we?"

I want to say: Shit no. Damn stuff nearly killed me. I don't want to be in three feet of that crap. I don't want to sit in a chair where they pump me full of chemicals that will slam my immune system into dust.  I just want to be normal.  "No, we don't." 

"Let us start out with the corticosteroid enema, Rowasa."

*big sigh* then "OK." 

"And I will give you something for pain. It just stops the cramping. Then I will see you back in 4 weeks or sooner and see how you are doing." 

"OK." I am beaten. I have to start small and go upward. This is going to take time and I will have to live with myself the way I am because I have no one else to blame but me.  I hate taking medication for Crohn's disease. None of it makes you feel good, you're either in lala land because of the drugs, or cranky and pissed off because of the drugs or in utter agony because you don't want to take the drugs. It is like he has told me a hundred times, "There isn't a good option." 

I head over to the pharmacy. The clerk behind the counter is bored and uninterested. "My doctor just scanned in a prescription." I smile sweetly and give her my birth date. I've always believed I can catch more flies with honey so this should be an interesting experiment. 

"Hummmm." She checks her computer.  I see that." 

"Can I get it filled today?" It used to be you dropped off your prescription and 15 or 20 minutes later you picked it up. Now it's a day or more. I'm in pain so I'm hoping for expedience. 

She peers over her glasses. "It'll take about 45 minutes."
 
I know, I know, I think. I'm am suppose to feel guilty here, but I don't. "Fine. Then I will take the flu shot to go." I smile again, showing even white teeth that cost a fortune. 

"I beg your pardon?" She blinks, her boredom broken for the moment with sarcasm.

I frown. Happiness and humor are not going to work. "It was a joke. Just sign me up for a flu shot. While I'm waiting I might as well do something constructive." She pushes the paperwork toward me to fill out. Once done, I hand it back. 

She says, "Now, go sit and we will call you." 

15 minutes goes by then 30 minutes then an hour goes by.  I am so done playing with my phone.

"Lucille Carroll?" 

I look around. Oh, hell. That's me. I get up to the counter. The same woman has a small pill bottle in one hand. Rowasa comes in a 2 foot by 2 foot box. The suckers are huge. "Where is the Rowasa?" 

"The what?" 

"The Rowasa. You know, the e.n.e.m.a."  By this time I am cranky and I don't care who knows it. "Rowasa is steroids in a bottle that you use like an enema to treat Crohn's in the large intestine." I figure I might as well be instructive if I'm stuck talking to her. 

She looks at me blankly. "Let me check." She leaves and heads over to the pharmacist where they confer for several minutes. When she comes back, she says, ""I'm sorry. You do not have prior authorization." 

"For what?" 

*blinks* "The e.n.e.m.a." 

At this point I will forgo the e.n.e.m.a. "OK. Give me the pills and the flu shot. My doctor's office will figure out the authorization issue." 

"You shouldn't get a flu shot if you don't feel well." 

Remember the cartoons where the character has steam coming out of its ears? "I have Crohn's disease. I never feel well." 

The pharmacist comes over. "Is there a problem?" 

Clerk says, "She doesn't feel well so she shouldn't have a flu shot." 

Pharmacist says, looking at me, "I am sorry you have a problem with the flu shot." 

Whoo hoo, I can feel the anger ratcheting upward. "I don't have a problem with the flu shot." I point at the clerk. "She does." 

The clerk says, looking at the pharmacist smugly, "Well, she has Crohn's disease." 

                                                                                   ******

By the time I get home I have a headache. I did get the flu shot and the pills. I down two of the antispasmodics and curl up on the couch.  I sleep most of Saturday and Sunday as well.  My hopes are for a better Monday, but today is Tuesday and I still don't have my medication. 

*taps fingers*

We seriously need a single payer healthcare system for the populace, including government officials. No extras if you have more money. Just the same. For all. I'd like to see our elected officials sitting around with a broken bum. Yeah, like that would last for long.  

In the meantime, I will sit sideways with one knee up. It seems to help even if it looks ridiculous.