I Made a New Friend

Anyone one who knows me probably knows that I don't make friends easily. Mostly because it usually takes a lot of work to build a new friendship. These are my same sentiments about dating as well. I just don't have the energy for it.  My friends are not high maintenance (well, my bestie could be considered high maintenance, but she maintains herself). This is awesome because my friends and I can go for periods of time without communicating or without hanging out and our friendship won't falter. 

When building a new friendship, I never know the appropriate time to bring up Crohn's. Whether I like it or not, Crohn's has a huge impact on my life. It's stressful to conceal it until I build enough trust to feel comfortable discussing it with someone new in my life. I've seen enough people walk away because they couldn't handle it. As if they are the ones dealing with this shitty disease, not me. Some people think my whole existence is disgusting. In which case, I will not pursue a friendship/relationship. Once I consider you a friend, all bets are off and you might end up wishing I wouldn't trust you enough to share so many details.

I was talking with my cubicle neighbor, Ashleigh, at work and she mentioned her Mom has Ulcerative Colitis, which is another form of IBD. I told Ashleigh I know what UC is because I have Crohn's disease and I inquired about what medicine her Mom takes. Next week, Ashleigh and I made plans to bring our walking shoes to walk laps inside the mall during our lunch hour and talk about life. She even has some other stomach issues of her own that she shared with me. She became my friend the moment we mutually agreed that we could fart in front of each other. This is like an unrealistic dream come true.

I think I'm in the right place at the right time and surrounded with awesome people in my life.

"I Find Myself in Love Racing the Earth"

I have a confession: I'm in love. I can't stop thinking about it. I can't stop talking about it. I can't get this cheesy grin off my face. Running has captivated me all over again! It's not easy, but I don't mind working hard and pushing the wall that I've currently been facing after mile three. I can't wait to push that sucker to mile 23 and beyond. Heck, I started incorporating speed work into my training plan for fun! Soon I'll be adding hill repeats because that's really the best breakfast this side of the Mississippi.

I've been noticing the little things during my runs. The lone yellow flower at the top of the bush by a mailbox. The smell of fresh laundry. My shadow doing its best to keep up. Outside of my speed workouts, I haven't been focusing on speed. Rather, I've been focusing on going as slow as it takes to eliminate the desire for intervals.  In fact, I ran four miles on Sunday without intervals. Surprisingly, even though I've missed a couple weeks of training, I'm still on track for my scheduled four mile run this weekend. Obviously, it would be easier if I hadn't missed any runs, but I'm so happy I'm not behind schedule.

This Friday is half-day Friday at work. After my Doctor's appointment, I'm heading down South to visit Taylor. I have two runs planned while I'm down there. Saturday morning, I'm meeting one or two ladies with the South Florida Team Challenge chapter at Hollywood Beach for a run/walk on the beach.  I met them when I ran the Napa to Sonoma half marathon with Team Challenge in 2013 (Geez has it really been that long ago?).  They're super awesome and I hope to pick their brains about Remicade. Sunday morning, Taylor will be taking me to a park around the area to get in more miles.  Hopefully, these runs will help me to keep up with my training schedule in future weeks as the miles start to increase.

Sometimes I wonder how I ever let running slip away. I feel alive when I run. This time around I just need this relationship to last until November 6th.

Insurance and Medical Bills

Have I told you lately that I strongly dislike adult responsibilities? My new insurance plan year started over on April 1st. That means I had no money toward my deductible before my surgery. I'm looking at a $4,550 bill, which covers the anesthesia fee, facility fee, and the doctor fee. It's so frustrating to work hard to save money only to blow it on health care shit.  I could travel the world or move out of my parents house (opportunity costs), but things like this make me apprehensive to spend money. The surgery was minor in the realm of Crohn's disease. Imagine if it was seriously a major surgery. Folks my age spend money on weddings, children, spouses, relationships, happiness, and independence while I spend my chunk on wellness. It hurts my financial heart to spend money for Crohn's crap.

I did manage to get refunded for my MRI, so I'm going to try to work my magic to hopefully at least get partially refunded for the surgery.

Humor, Medicine, Running, and SeaWorld

When I entered the family room, I nodded my head and raised my hand with anticipation of praise as I announced, "Thank you, thank you! I trimmed my own toenails." My dad smiled wide with pride and told me to get a sticker for my sticker book. Being an adult is hard.

In regards to my health, I don't feel qualified to make treatment decisions. The doctor tells me a list of options and then tells me to choose. In the moment, I may think I made a solid decision. However, after pondering my selection, I wonder what the hell I'm doing?  When did a biological medicine being infused into my vein become the best choice?  According to my nurse advocate, my insurance approved Remicade, but my co-pay is really high (she didn't tell me the amount of the co-pay). She will be mailing me paperwork for Remistart, which is a patient rebate program to help with co-pays. Eligible patients only pay $5.00 per infusion. I went ahead and scheduled my loading doses for May 3rd, May 17th, and June 14th. After the loading doses, infusions will be scheduled every eight weeks. The bad news is that the infusions take two and half to three hours and my nurse advocate only administers infusions Tuesday mornings or Friday mornings at her office in Ocoee, which is nowhere close to Sanford where I work. That means more time I have to "waste" taking off of work for my health.  I'm going to be lucky if I have enough time off left in November for the NYC marathon. Anyways, when I made the appointments, I didn't know where Ocoee was located. I'm going to call her tomorrow to see if I can request a location closer to Sanford. Either way, I'm going to have to talk to my supervisor to let her know I'll be needing more time off.  Hopefully, she'll still be understanding. If I do keep my Remicade infusion appointment on May 3rd, I will not have to do any more Cimzia injections.

My colorectal specialist told me to take two weeks to recover from what ended up not being as serious as we thought going into it. Technically, I should probably wait until my follow up appointment on the 29th or call her office to get approval to start exercising again. But you know me, I do what I want. I walked two miles on Monday to prove to concerned family members I really am ready to get moving again. On Tuesday, I ran one mile with my sister, Kelly, and then we walked another two miles. It felt good. I'm a little sore, but I'm excited to start training again.

My company is hosting a picnic for Employee Appreciation at SeaWorld this Saturday. I was allowed to RSVP for myself and one guest, so Taylor is coming into town to be my guest. After the picnic at Sea Harbor Pavilion, my company paid for everyone's ticket into the park. Bonus: For only $20 I can update the ticket to a fun card for the rest of the year! They've already distributed the free parking ticket. I'm excited because I haven't been to SeaWorld in forever!

An Update

It hasn't even been a week and I'm already getting antsy. I'm restless mostly because the New York City Marathon is on my mind. Don't get me wrong, I'm thrilled I'll be back pounding my feet against the pavement sooner than originally planned. However, it's still frustrating to wait it out because my hopes are high. I've been on Pinterest looking at a bunch of workout motivation. It inspired me to incorporate some cross training in with my marathon training once I start training again. I'm excited to feel my body get stronger and my mentality get tougher throughout the next few months.

I went to see my gastro yesterday to talk about medication options. It's a little scary knowing that there aren't a lot of effective treatment options available. The two options my doc recommended were to add 6MP to my treatment while continuing with Cimzia or stopping Cimzia and switching to Remicade.

I was on 6MP for years after I was first diagnosed with Crohn's. Now, looking back I wonder if my parents even knew what 6MP is. I certainly didn't know or care at the time. It's actually a chemo therapy drug.  Anti-cancer drugs are pretty common in Crohn's treatment, but I think it's a little harsh. It's really bad for the liver and frequent lab tests need to be done to monitor its affect on the kidneys and liver. There is also a higher risk of lymphoma when taking Cimzia with 6MP than other options. Isn't that ironic? My first treatment strategy was to exhaust all of my options with Cimzia before stopping it. Once you stop a biologic like Cimzia, you can't go back on it because your body will build antibodies against it and reject it.  I just don't think it makes sense to keep moving forward with Cimzia because it hasn't been very effective for a while now. Most of the medication options are frightening, but 6MP is a little scarier than other options in my opinion.

That leaves me with Remicade, which is an infusion I can't administer myself. I'm told this is a more potent treatment for Crohn's and most patients see better results with it than with Cimzia. Remicade is a TNF blocker like Cimzia with similar risks. It's way more expensive than Cimzia, so I'm in the process of figuring out if my insurance will cover it before I can make the switch. Thankfully, I have a nurse advocate helping me figure it all out. I'm surprisingly excited at the possibility of bidding Cimzia farewell.


In other news, Ticketmaster finally released my tickets to Halsey on July 6th at the CFE Arena! I'm super stoked about that.

An Exciting Crack-Patch Adventure

I woke up Tuesday morning pumped and ready to do my fleet enema to finish prepping for surgery. Once I was done washing my disastrous crack, I flexed my muscles in the mirror to remind myself to be strong before I got dressed in some comfortable clothes, and then my mom drove me to the surgery center. Upon arriving I didn't even hesitate to jump out of the car and make my way toward this exciting crack-patch adventure. It took thirty minutes to fill out paperwork, sign my life away, and charge such a ridiculous amount for the procedure on my shiny credit card that it brought a tear to my eye.  They let my mom come back with me where we were placed in a curtained off room and I was immediately told to strip. Normally, I would at least expect a conversation first or to be wined and dined, but since I was fasting for the procedure I can understand why they rushed right into getting me naked.  They can't get enough of me... they keep scheduling me for more appointments so that I can take off my clothes.

While I could hear my doctor/surgeon making her rounds with other patients a nurse came in and asked if I wanted to do a urine sample or sign a paper stating I'm not pregnant. By some miracle I actually had to pee, so I climbed out of the hospital bed in my butt-flap gown and "poop" socks with turd emojis all over them and proudly offered to give her a sample of my urine.   She tried to hook me up to the IV, but after rolling the needle a few times with no success, she called in the anesthesia specialist in to help her. I didn't yell at anyone because I know one of my callings is to be a pin cushion.  Gosh darn it, I was the best damn pin cushion I could be. A little while later I was informed I wasn't pregnant. Someone throw me a party to celebrate not being pregnant!!! My doctor came in to give us the break down of what she planed to do. She said it's common for the rubber seton she'll place in the fistula to have to stay for up to 20 weeks for Crohn's patients to completely heal. blah, blah, yeah, do whatever you think is best. I trust my ass in your small, cold hands.

Someone injected something special into my IV line and I started feeling dazed as they rolled me to a different room. I remember thinking this is a very cluttered operating room before they had me roll onto a different table onto my belly with my arms above my head... and that's the last thing I remember before waking up to my mom and a nurse rushing me to wake up to get dressed. My doctor came in wearing her surgeon outfit. Great news: she searched for the fistula she saw last week, but there was no sign of it. No drainage seton was needed! She finally removed a skin tag that had been bugging her for two years. She flexed a stricture for the sigmoidoscopy and found another stricture further up with active disease. Since there wasn't a fistula, I think recovery will be easy. I'm just sore from the flex and bleeding from where the skin tag was removed. I'm on orders to limit activity for two weeks until my follow up appointment on the 29th.

I shouldn't be shocked, but I am. I'm just not accustomed to getting good news regarding these kinds of things.

P.S. I completely lost my voice afterwards.

Fake It Until You Make It

I've been getting tons of good vibes from family and friends. It's great to know that people care. It's interesting to hear people's different thoughts about the procedure I'll be getting done on Tuesday. The common theme seems to be positivity. I'm constantly reminded that "it could be worse." From my point of view, I think, it could also be better.

Am I worried about Tuesday? No, I've always wanted an operation done on my ass. It's a dream come true, really.  That's sarcastic positivity at it's finest.

My mentality has improved since the beginning of the year. However, one of my concerns, going into surgery, is that my mental strength will slip away. I've worked hard to find happiness again. I'm anxious about the possibility of becoming depressed. I expect to struggle with it, but I know if recovery keeps me from training for too long, it will be difficult to fake positivity. Yes, some of my positivity is fake. See my sarcastic positivity above. Get over it. I fake smiles and I fake feeling well, so this shouldn't be a huge shock.   I fake it to make people feel more comfortable and to prevent my negativity from shading positive vibes. I fake it for myself, too. I will fake it until I make it genuine.

It all goes down at the Surgery Center when I check-in at noon on Tuesday, April 12, 2016.

Thanks, Universe, for Your Impeccable Timing

I ran the IOA Corporate 5K today with Wharton-Smith. Most of the employees got to our tent area pretty early so that we could find parking. It was great running into friends and meeting other employees. I got to talking to one of the guys from work. I've never had the friendly back and forth banter with a stranger like I had with this guy.  He told me a short story about his name and I told him a shorter story about my name. He made a funny comment about something and I said, "Whatever floats your swan boat." You should have seen him laugh. (We were at Lake Eola, so the swan boat comment wasn't quite as cheesy as it sounds... or maybe it was. haha)  This banter went on for a while until I said I was going to make my way to the start line and he followed me. As the race started he shrieked with excitement and I joined in with a high pitched "WHOO!" In that moment, his gaze was captivating.  I lost the witty co-worker in the crowd of 20K people once the race started. It's hard to explain. His excitement for the race was contagious.  It was innocent and fun. However, afterward I thought: The universe's impeccable timing decided a week before I get ass surgery is the time to meet a guy. STUPID!

I ran a decent 5K considering the week I've had. I finished in 34.12 and my company gave all of their employees that finished a Fitbit. I wish I felt better to stick around for the after party, but the antibiotics I'm taking had me feeling nauseous. After getting my Fitbit, I went back to the finish line for a little while before leaving. Finish lines are so inspiring!

Crohn's Sucks

Excuse me while I wallow in self pity. I went to my colorectal specialist today. The pain from my abscess is pretty much non-existent. It's only tender to touch directly.  I dropped my pants and my doctor poked around with her finger finding the abscess. The abscess was tender to her touch, but I didn't feel the pain I felt on Thursday when my gastro touched it. The colorectal moved her finger to another spot that I didn't realize was tender as well. She pointed out that it was a fistula.  She asked a few questions about possible side effects, which I hadn't experienced. That's when she said something like: For your bottom being such a disaster, you sure don't show a lot of symptoms. Even my doctor thinks my ass is a disaster. lol

According to the American Society of Colon and Rectal Surgeons, "An anal fistula (also commonly called fistula-in-ano) is frequently the result of a previous or current anal abscess. This occurs in up to 50% of patients with abscesses."

Apparently, even though the antibiotics are healing the abscess, the fistula makes it extremely likely for the abscess to return after my round of antibiotics are complete. My colorectal doctor was very concerned and recommended that I schedule surgery for next week. Next week, I will have my first Crohn's related surgery. She will be opening up the fistula and possibly the abscess to put a drainage seton in place to open it up so that it can drain and heal. She will also be flexing my stricture in hopes to being able to perform a sigmoidoscopy and she will be surgically removing a skin tag by my anus. She said recovery is one to two weeks. I'm so thankful that my supervisor at work has been understanding throughout all of this and told me today that "my health comes first" when I apologized for having to take off four days next week.

I feel like this song 'We Don't Have to Dance' by Andy, the lead singer of the Black Veil Brides band was written about my relationship with Crohn's.

Stressed Out and Unable to Run

I was doing some research and I found an article on Healthline that stated, "...abscesses occur in about one-fourth of people with Crohn's disease. Abscesses often need to be drained, or surgery may sometimes be suggested." Usually, I avoid doing research like this because the results stress me out. I find myself to be in the one quarter of patients with Crohn's disease that has had an abscess occur. Those aren't good odds.  It feels like I definitely drew the short end of the stick. 

According to CCFA "...up to 75% of people with Crohn's disease will eventually require surgery." I know surgery is a real possibility, but it doesn't change the fact that I'm in denial about that possibility. It freaks me out that an abscess may lead to needing surgery.


I haven't ran since my awesome three mile run last Saturday. The pain from the abscess has had me sidelined.  I know this won't likely be my only roadblock on my journey to the NYC Marathon finish line, so I'm taking it in stride. I listened to my body earlier this week and rested rather than pushing through the pain and going for a run. I'm listening to my Doctors so that I can get better as soon as possible. My motivation is still through the roof! Mentally, I'm feeling stronger than ever, so the abscess and antibiotics are not getting me down. Surprisingly, I feel postitive and I'm determined to get back on track once I feel better.