Playing the Field

Even though I am waiting to see what Dr. Second Opinion has to say, I am still taking steps forward to schedule surgery with my current colorectal. I am playing the field, the medical field. My current colorectal confirmed Wednesday, December 6, 2017 as my surgery date for bowel resection. Now, that date is only tentative on my end because I might cancel it depending on how my appointment goes with Dr. Second Opinion.

I finally received my current colorectal's notes from my appointment on August 22, 2017. I underlined the words and phrases that scare me the most.

• 8/22/17 Barium enema and MR enterography reviewed with patient. The BE did not show evidence of a fistulous tract, but the MR enterography did show evidence of a potential fistulous connection. Given the persistent clinical symptoms of enterovesical fistula and the MR findings, surgical options were discussed. She will discuss the findings with her GI physician and will possibly proceed to a laparoscopic, possible open low anterior resection and repair of colovesical fistula. The risks of surgery including a need for an ostomy which might be permanent were discussed. In addition the concern is that as she has a known anal stricture as well as rectal stricture, that her rectum may be diseased enough that an anastomosis may not be feasible.

When I read the notes, my heart sank. Despite already knowing everything in the notes, reading them took my breath away. This is real. This is really happening. When I see feces in my urine and pass gas through my urethra, I want to fix it. Would it be gross if I posted a picture on here? Do you understand what I'm dealing with? It's annoying and frustrating.  On the flip side, when I have bowel movements (which have been easy and beautiful), I wonder if the times I shit out of my ass are numbered, and then my desire to fix the problem diminishes. Soon, I could be shitting in a bag, which fucking sucks because my bowel movements have been amazing since I started Remicade in May of 2016. Today it was hard to accept and harder days are coming.  Unless Dr. Second Opinion has drastically different insight and results, my current colorectal plans are below:

• On Wednesday, November 29, 2017 at 1:00pm, I have a pre-op appointment with a urologist.
• On Thursday, November 30, 2017 at 9:45am, I have a pre-op appointment with my current colorectal, which may be followed by testing.
• I am awaiting a call to schedule my "tummy marking". I think it's where they tattoo dots on my belly to guide the doctor to the right spot...or maybe it's like a surgical version of connect the dots.
• On Wednesday, December 6, 2017, I have to arrive at 5am for surgery to start at 7:30am.

I Couldn't Answer It

I have a confession: I may have been a coward today.  Even though I have been expecting a call for 27 days from my colorectal specialist to schedule my bowel resection surgery , I did not have the courage to answer my phone when the scheduling lady called me. When I looked at the caller ID, my heart sank and my hands started to shake. I couldn't answer it.

Sure, I'm still waiting on a prior authorization from my insurance to get a second surgical opinion with the guy my new gastro referred me to. That sounds like a good plan to waste more time. Plus, I'm still waiting on the results from the drug level and antibody test. I can't schedule surgery without knowing how much time I have to let Remicade evacuate my body so that no medicine is in my system at the time of surgery.  I mean, I know my target surgery dates are far enough out for it not to matter yet, but they don't know that.

A part of me wants to call my colorectal office back to schedule the surgery and get it over with. BOOM. DONE. It would be a lot easier than having to wait around for the prior authorization that might never come or driving down to the Cleveland Clinic for a second opinion and possibly even surgery. It would simplify things by not giving me any more options to weigh.  If I scheduled surgery with my current colorectal and did not get a second surgical opinion, I wouldn't have to contemplate my options any longer. I think a lot of people would judge me for not getting a second surgical opinion. I also might regret not getting a second surgical opinion, and that's why I'm still moving forward to get one. When I schedule surgery for bowel resection, I want to be as confident as I can be about it.

I haven't cried about needing a bowel resection since the first 48 hours I got the news. As hard as I took the news I have somehow accepted it.   Don't let my brave face fool you, it still scares the shit out of me! But, there's no way I believe I'm a coward.

Rescheduled Barium Enema

SimonMed called me this morning to reschedule my barium enema appointment because their imaging machine was not working. Thankfully, they called before I started taking laxatives for the prep. They wanted to reschedule for the end of this week, but with work, the charity event, and Taylor coming into town, I rescheduled it for Monday, July 31st instead.

A huge sense of relief came over me after I rescheduled my appointment. I could breathe a little deeper...until anxiety hit me again. My nerves are on edge. I have that weighted feeling in my chest and gut that won't go away. I think it's fear. I'm afraid my self diagnosis is correct. I'm terrified the solution is going to require surgery. I'm worried surgery/recovery is going to interfere with my running schedule. I just can't shake the feeling that I'm going to have to say goodbye to the good(ish) days far sooner than I had hoped. I am mentally preparing for the worst and it's freaking me out.

I've started rationalizing the idea that I could postpone surgery, if surgery is required, until January after all of my races. This would also give more time to reach my out of pocket max and I get five more sick PTO days at work at the beginning of the year. So far, my doctors don't seem to be in any hurry to figure this shit out. If they can take their sweet time in figuring out what's going on, it must not be that serious. By the time I get "answers", it's going to be mid August. I know it's naïve to think I am actually going to get answers. With chronic illness, most of the time I think the doctors are guessing just as much as I am. 

The Unthinkable Happened

I had been feeling great for a while and it gave me confidence to start announcing how well I was doing... and then Tuesday happened. I started feeling pain between my down below cheeks. By the time I got home and mustered up the courage to grab a mirror to help me see what was going on, I had an unmistakable abscess. I felt more frustrated than concerned because I don't have time to be dealing with this shit. I want to be healthy to run. I want to be healthy to put my best foot forward at work. Hell, I just want to be healthy so that I can live my life pain free.

I tried to get my gastro or colorectal doctors to prescribe me antibiotics, but they guided me to make an appointment with my gastro first. On Wednesday, I knew I had to make an appointment quickly before my absscess got any worse. That meant I also had to request off of work less than two full weeks into my new position. Requesting off of work for health reasons stresses me out because it's often on short notice. I never wanted to have the difficult conversation with my employer describing my condition, Crohn's disease. It wasn't a possibility. I wouldn't even consider it.  I should write another post describing my motives behind my decision not to disclose my health issues with co-workers and supervisors.

Anyway, the unthinkable happened on Wednesday when I requested off for my doctor's appointment today. I told my supervisor that I needed to take some personal time and she was easy going about it. I apologized for the short notice and mentioned that if she needs to know more info, I would tell her. So, being a talkative gal she chimed right in and said, "Well, now you've peaked my interest. What more is there to know?" I pretty much wanted to crawl into hole and swallow my tongue. I closed her office door and proceeded to tell her I have Crohn's disease. I explained what Crohn's is and then she asked a few personal questions, but it was too late to shut up. She was understanding and supportive. The most impressive thing though was that I didn't cry at all during the conversation. I don't know why I usually get emotional when I have to talk about it, but not this time. It was like an out of body experience. When I walked out of her office, I felt like a huge weight had been lifted. Even today, she asked me more questions about it. 

Bring on the antibiotics: Flagyl and Cipro! I'll be feeling like shit for the next ten to fourteen days just so that I can feel better. I will likely poop myself before it's over!!!

This Ass-pect of My Life Sucks

I had another visit with my colorectal specialist yesterday. It was as terrible as my last visit. A painfully traumatizing experience. Once again I was in too much pain and the doc couldn't fully loosen my stricture with her finger, so we couldn't use the scope to see what's going on. I hate being weak and I hate not being able to handle the pain. My ass is going to be bleeding for days and I'm disappointed in myself because I couldn't handle more of the torture. Damn, my ass is so sore, yet I still think that I should have been able to be tougher. I feel like I failed.

At my specialist's request, next time I have to schedule my appointment at the surgery center because I need to be sedated in order to get my stricture fully loosened. To be kinder to myself, I have lasted over three years of appointments with my colorectal specialist before having to be put under. I guess that's kind of a win. The benefit of being sedated next time is that I won't feel the pain or the trauma in the heat of the moment. I'd much rather be violated when I'm knocked out for the count. The draw back of the doc being able to do more is that it can make the recovery time longer.

She only takes appointments at the surgery center on Tuesdays, which is an important day in my payroll week at work. I'll have to talk to my supervisor to figure out which Tuesday in May I can take off.  No one at work knows I have Crohn's, so I've never given too many details when I request a day off for Crohn's stuff. I feel like since I'll be sedated, I might need to give my supervisor more details in case something goes wrong. Nah, I'll just ask about taking a Tuesday off and hope my supervisor doesn't ask too many questions because talking about my butt issues at work doesn't seem very professional.

My Birthday Wish

Update: I finally got Cimzia approved through my insurance... again! Go me!!!

"How are you?" When that question is directed at me, it has got to be the most confusing question that exists in the English language. Family, friends, doctors, nurses, counselors, and co-workers alike inquire about my well being. All at different levels, of course.  Nonetheless, it's up to me to figure out how I am, which is tricky.

How am I? Would "I don't know" be an acceptable answer without leading to more inquisitive questioning?  How am I compared to what exactly? My "normal" seems to constantly be fluctuating. Most days, I'm not sure if my body is telling me the truth or if I am perhaps misinterpreting it all together. I don't trust my body. How can I? The bloody thing attacks itself. Hell, I was so used to constant pain in my stomach for a while that when I burned my hand pulling something out the oven a few weeks ago it didn't even hurt. It felt like a light pinch that went away quickly, but the blistering skin on my palm told another story. Burning your hand should hurt, right?  I just figured the pain the burn caused must have been minimal compared to the other pain I had been experiencing, so my body didn't have a big reaction to it.

How am I? In this very moment, I'm convinced that I'm doing better. What exactly am I doing better than? I think I'm doing better than I was doing over the past three months or so because I have more energy, my bowels have been somewhat okay (there's always room for improvement, but isn't that case with most things in life?), I haven't felt pain in about two weeks, and I actually want to hang out with people. I even went for a run this week and it was beyond amazing. Sure, I'm totally out of shape and I was breathing heavy, but I didn't struggle to breath like I did during my last attempts that made me swear off running for a while. Last month I was certain Cimzia stopped working, but now I'm unsure what to think. I'm supposed to be getting lab work done in February that will tell me how I really am.

How am I? I'm pretty sure I'm still anemic because I stopped taking iron pills. I can't wait for my dr. to lecture me about that. I just couldn't handle being constipated all the time. I'm pretty sure my stricture is still super tight even though I'm hopeful my appointment with my colorectal on February 12th goes better than the last time I saw her. It's to the point where I'm actually wishing the scope for the sigmoidoscopy will fit past my stricture so that we can take a look at the disease on the screen. In order for that to happen, my doctor has to be able to get her finger up my ass, which was an agonizing problem last time even with lube.  Yeah, so that's my birthday wish... being able to get fingered in the ass. Maybe I need to find a special someone that would finger my ass regularly between visits with my doctor to keep my stricture loose. Doesn't that sound like a good blurb to put on a dating website? I would do it myself, but giving myself enemas is nearly impossible as it is. It's traumatizing and I'd much rather someone else torture me than me having to do the horrific thing myself.  I've always said if someone likes it in the ass, that's a sure fire way to tell they don't have Crohn's disease.

Oh, by the way, my sisters say that I must be feeling better because my humor is coming back.

I've Been Busy; That's a Lie

Hi! Long time, no blog. I could lie and say I've been busy. The truth is I've been sleeping my life away. How am I feeling? I hate that question!  Honestly, I usually say I'm doing good until one day I wake up and I realize that somewhere along the way my 'normal' has changed. Yet, I'll still tell you, "I'm good."

I see my gastro on Thursday and my colorectal specialist on Friday, so I'll be haunting my doctors with my ass for Halloween. Thankfully, I haven't been experiencing pain. Two weekends ago, I shit so much in the middle of the night that I woke up with abs the next morning... I haven't worked out in months. Sounds like a dream, right? Go to bed, wake up 14 times to shit in the middle of the night, and then wake up with abs. My bowels have gotten back to 'normal' since then. I have been super tired. I slept for 26 hours this past weekend. My doctors and I have some talking to do... even though they still don't know about the incident in Texas last December and I don't know if I'm going to tell them.

Enough about that... When I'm not working, sleeping, or shitting, I've been reading "Blink: The Power of Thinking Without Thinking". I'm about a third of the way through the book and all I can is wow! It has been eye opening to the way our brains process information consciously and subconsciously. This is a book about psychology and so far learning about priming and thin slicing is so interesting to me. I can't wait to see what else this book has in it!

I've also been finding new music on YouTube. My current obsessions are with Halestorm and Halsey. If you're only going to listen to one of each of their songs, listen to Hold Me Down by Halsey and Love Bites (So Do I) by Halestorm. If you're going for a second song, go for Gasoline by Halsey and Apocalyptic by Halestorm. I'm surprisingly leaning toward more rock selections. The screaming parts are just the therapy I need. 

Lastly, I've been binge watching The Walking Dead on Netflix. I just got to season 5! All I can say is that I would not survive a zombie apocalypse. I'd be one of the first to turn and then I'd be attacking all of you healthy people.

Goodbye, September

I don't know what procrastination says about a person, but I do know I am an expert at procrastinating. If I had the energy, I would probably be stressed. I'm not stressed, just irriated that people can't do their jobs right. I have no trouble sleeping and I don't feel worried. Perhaps I'm depressed...

After leaving five messages with my nurse over a 9 day period to get a prior authorization for Cimzia, she still hadn't returned my calls or submitted the prior authorization like I requested. So, I sent my mom to the gastro office to get some answers. I sent my mom with a copy of my ID, new insurance card, and a patient disclosure form authorizing her to access my medical records. It turns out the nurse didn't call back because she didn't think the prior authorization was necessary since she gave a prior authorization for me last year. Can you believe that shit? My mom told her that she should have at least called me back to let me know she didn't feel like doing her job. Thankfully, my mom got the nurse to transfer the prior authorization from last year to my new insurance. I don't understand why the nurse couldn't just give a new prior authorization because that would last longer.

The pharmacy finally let me schedule delivery for my Cimzia, and said that insurance approved the prior authorization. Although during my first attempt today to schedule delivery, the pharmacy said that the prior authorization had been cancelled. Nobody seems to know what they're doing. I guess if Cimzia arrives when I scheduled the delivery, none of it matters.

In other news, while my car was getting leather installed they broke a bolt when they were putting the driver's seat back into the car. Now, they have to keep it in service to fix it. At least they gave me a free rental car. Plus, the leather looks and smells amazing, so it'll be worth it.

Switching Insurance Plans

At first, I wasn't concerned about switching off my parents' insurance plan and onto my own plan through work. However, I freaked out a little with the switch fast approaching. 

What if my current doctors aren't in network? What if my medication is no longer covered? What if I have to find new doctors and I go into a bad flare while waiting for "new patient" appointments? What if I have to find a new doctor and they want me to do a colonoscopy?

Those thoughts above are toxic. The negative and worrisome mindset is addictive and exhausting. I had to shut it down and go back to being nonchalant about the whole thing.  When dealing with insurance and doctors, I expect a crisis on the horizon. On the flip side, I am an adult and I probably have as much experience with insurance and doctors as your grandma. Plus, I have others with more experience in my corner. My plan is to take it one day at a time and handle any changes as they come because worrying about the "what if's" won't be beneficial.

Before I shut down the negative thoughts, I called my pharmacy to inquire if I had any refills available for Cimzia. To my surprise, I did. Wow, I got the refill without having to call my doctor to request it because the pharmacy communicated with my doctor! Anyways, I asked if I was cleared by insurance (still my parents') for a refill, or if I had to wait for my refill clearance to become available (I can only refill once every 3 1/2 weeks or so, so the refill window is sometimes tight). To my surprise, I was cleared for a refill. Long story short, my September dose of Cimzia was covered by my parents' insurance and will be here this week, which means I have a longer period of time to figure out my new insurance plan. It's a huge relief!

I'm Taking My Positivity Back

I'm taking some of my positivity back. My pharmacy didn't follow through with my doctor's office, so they aren't really helping me communicate any. My gastro's assistant didn't fax the prior authorization form to the pharmacy like she said she would, or at least the pharmacy didn't get it. So, the insurance still hasn't gotten the prior authorization from the doctor either and I still don't know if this month's dose of Cimzia, which I'm supposed to inject on the 13th, will be covered by insurance or not. 

There has to be a better way for doctors, pharmacies, and insurance companies to communicate on behalf of their customers. Would other patients hire me to be their advocate, get things done, and keep track of who is slacking on their behalf? I would totally pay someone a monthly fee to handle these kind of issues, keep me updated, and most importantly to make sure things are getting done in a timely manner. It's so annoying and stressful.