December 26 2017

What do a failed MRI, a wrongly ordered CT, and a completed CT scan have in common? Part One!

Me.
If you have ever had an MRI what is your secret? On Friday when all the craziness was happening, nobody actually mentioned to me what an MRI entailed. Full disclosure, I never asked, either. They said MRI Enterography, and for whatever reason…I heard CT. And having had enough of them, I didn’t think to ask for more information.
I am extremely claustrophobic and not a huge fan of being rendered immobile.
We arrived at the clinic and I downed the almost 60 ounces of prep mix like a college girl gone wild.


I don’t know if the prep hits everyone the same way but it was making my insides go crazy! I had used the restroom 3 times in the span of drinking the prep and heading back to the table. After a lot of internal debate and embarrassment, I finally asked the tech if they had a Depend. Not an ideal situation, but I was determined to get through this test, whatever the cost.
For those unfamiliar with an MRI, you drink the prep mix, get strapped to a table, IV’d up, and then “torpedoed” into the machine. They had me run through breathing exercises but essentially I couldn’t move, and it felt like the machine was closing in on me.
This machine uses magnets for imaging instead of radiation. It shook with vibration and was extremely loud. Apparently, they usually have patients wear headphones with music but they were not working.
Sometime in, they pulled me out of the machine and had a doctor came in to inject a shot into my arm. I am guessing it was intermuscular because it still burns. Whatever it was, its purpose is to slow down the small bowel for a clearer image.
The anxiety kept mounting until it became too unbearable. I had a panic attack unlike any other. I started heavily crying and begging them to get me out. I knew I had to be close, I just couldn’t handle it. I needed to stand up, breath unrestrained. I kept thinking, “You’re in the homestretch,” “Think of the kids,” all to no avail.
The tech was awful and kind of rude, asking to be pulled out just seemed to make her more frustrated. I tried asking for a timeframe, getting some insight into what to expect, all while trying to calm myself. She basically said, “Are you in or out?” She asked mid freak out which left me no choice but to concede. Not even a minute after she lowered me, I steeled myself and asked to keep going. She snapped and stated that she was insistent on my answer because once I am lowered the test is over. To say I was disappointed would be an understatement.
At some point the tech informs me that they never injected the contrast. I guess that is one of the last steps for the last images they take. I cried the entire time I redressed. I cried all the way through the building and had a near fall-to-my-knees crumbling session in the parking lot.
I made it 30 minutes only to fail right at the part we needed the most.
Have I mentioned the preliminary culture results? During one of the several exams on Friday they swabbed my belly button to see what type of fluid was leaking. Cultures came back as staph and strep. Another hurdle in a sea of many.
I felt like I was in a fugue state of self-hatred. Infusion team seemed more frustrated that they would have to start the process again to get me in STAT for a CT than they concerned for me. Although they did seem truly sorry they didn’t ask if I was claustrophobic or explain the procedure of an MRI. They were so focused on getting me in that they forgot the other parts. Sedation might have made this week completely different.
The trick after the dust settled and the necessary calls were made, was to figure out how to get home. There was a massive train derailment impeding traffic. (It was all over the news and the accident closed down I-5.)
In over an hour, Jon and I had moved a mile. We were over 30 miles from home. I could tell he was frustrated; over the failed test or traffic, I never asked. I was internally beating myself up and trying to figure out how to deal with the knowledge that I would likely be drinking more prep and doing another test.
You can’t punish yourself forever though so together, Jon and I decided to take a little us time. Something that with two toddlers never happens. We turned around and got a hotel! It was the first time since the kids were born that we were alone overnight without them.

Stay tuned, the fun is only just beginning!
 

December 22 2017

Are you prepared for your biological drug to stop working?

When I started Remicade 3.5 years ago, I steeled myself for the possibility that any infusion might be the last. Easy enough in theory; you tell yourself it won’t matter, you have options, that every day on the meds is a unique and blessed opportunity.
What you don’t do, is actually prepare for the day the meds no longer are an option.
Although to be fair, I don’t truly know that Remicade isn’t an option; I don’t actually know much of anything right now.
I walked into my appointment on Friday and before I could even sit down, the nurses had me cornered, telling me no infusion would happen because I had an infection. They asked to see my belly button and explained that my PAC would be in soon to do an exam.
My GI arrived, too. They asked me all sorts of questions: did I have a fever? Chills? What kind of stuff was draining from my belly button and how much?
I can be honest and say…I wasn’t really sure what all I was being asked. I sort of became something outside myself.
The concern: to infuse or not to infuse.
If I do, in fact, have an “infection,” an intracutaneous-something, a pocket or an abscess, the meds could make it worse. If I don’t, well then I’m just playing a game of Risk with my antibodies and myself.
Both the PAC and the GI were insistent on my having an MRI. They actually ordered it STAT. I thought that was only something they glamorized in the movies, and on tv. They wanted me to have a specialized type, MR Enterography. It is a type of imaging used with contrast to get visuals of the small intestine.
The potential pocket is somewhere between the skin and my small bowel.
The Infusion team tried to move heaven and earth to get me seen on Friday. Insurance told them they would call me with an update; however, they didn’t give a timeframe. I live an hour+ away from the clinic and have no cell service at home. Essentially, I couldn’t go home and run the risk of not getting the call. Not to mention, if they were to schedule me, I wouldn’t be able to get there in a timely manner.
Red faced and overwhelmed, I walked myself to the end of the third-floor hallway and sat at the bay window, to wait. To wait, and cry.
Angel
I had to try and pull myself together.
One of the nurses found me and asked if I was okay. I tried to explain my predicament without sounding like a miserable burden. A few minutes later, another nurse and my PAC came out to get me. They told me to relax at my infusion chair; It was an incredible display of compassion that gave me a small semblance of dignity.
I had no idea that I would be waiting 7.5 hours.
At no fault to my team, the insurance company wouldn’t play ball. The best they could do was Monday.
This whole “ordeal,” might be a new beginning, but it’s the end too; one I’m not ready for.
I am supposed to be hydrating, but each sip of water burns with what-if’s. I don’t know how to turn my brain off and not stress about the unknown.
I keep going over every worst-case scenario. What if I need surgery? What if I have to spend Christmas in the hospital? What if the infection is really bad, and I knew all along? What if I have to stop taking Remicade? What if…what if…what if.
My sense of validation is being over shadowed by my tangible fear of what might be.
In addition, I didn’t get my infusion. I am tired, rundown, existing (it feels) to serve the never-ending headache. I look at my kids and I cry.
I know that it doesn’t matter what the results say, it’s what I do with them that matters.
 
 
 
 
 
 
 

December 6 2017

Who would you be?

If you had the opportunity to invent yourself, who would you be?  
People tend to see what they want to see. They assume that because you tag yourself at the park with your kids, you were faking being sick the night before. They imagine that your arrival at work means you aren’t actually sick. They tend to disbelieve you, because well…you don’t look sick.  
I might not look it, but I sure as heck feel it. 
It is no secret that I take on too much. If I am not focusing on myself and my illness, it isn’t real, right? That age-old adage, “out of sight, out of mind?”  
It never actually works. I mean yes, I am able to lose myself for a time in other projects. I am able to trick myself into believing I am capable of more. Sometimes I can go days without thinking about doctors’ appointments, blood draws, or medication.  
You know what these extra projects actually do? They force me to make choices. Work or kids. Sleep or bedtime stories. Laundry or the park. It forces me to continually give.  
I discovered something about myself recently, (nothing that would shock anyone) and something I probably have known all along, but only really started to explore during Mediation training. 
I spend all of my time worrying about what everyone else needs. What the kids need, what Jon needs, what my co-workers need, etc. Rarely do I ever think about that I need. 
In the rare moments that I do focus on myself, I feel guilty. I think of a million other things that I could be or should be doing.  
I look at my kids and I wonder how they see me. Do they picture me weak? Do they see me crying, even when I try so hard to hide the tears? Can they hear my yelps and screams of agony at night? Do they wonder where I go when I am at appointments, labs, infusion centers, and pharmacies?  
I wonder if they see how hard I am fighting to be an example for them. 
I wonder…who I would be without this disease? 
Find Away
What is the use of thinking this way? I am ALL of these things. A wife, a mother, a career woman, and a chronic-illness warrior–scars and all. If I could be anyone, I would be her:
IlleRX. 
IlleRX 
She is my ideal. She is the girl I pretend to be when my breaths come in harsh and the pressure builds. She is my “Who I would be.” 
She is Intrestinal Fortitude strong.