Mighty Mouse Juice

I have pretty much lived my entire life in fear of one thing or another. One of my biggest non-philosophical, non-existential, and downright irrational fears is mice. I have hated them and been afraid of them for as long as I can remember. So color me disgusted.
Last week I was reading up on possible liver problems associated with Crohn’s Disease and I found out that Remicade has a patient street name of “Mighty Mouse Juice.” The drug is literally made with mice protein. My brother started singing the Mighty Mouse theme song–and with my husband’s help–re-arranged the lyrics to make it: “They became Remicade….” I know, great support!
mighty mouse
I find it ironic though…the one thing that scares me the most is also the one thing saving my life. Now isn’t that just a metaphor for my life?
In other news, me latest liver blood panel came back flagged high–again. I submitted a portal on Friday to see what they wanted me to do next, but so far I have not heard anything. While waiting I decided to try to detox my liver. Sometimes I really think I have good ideas… until I have to execute them. In this case it was roasted dandelion root tea. I can assure you, it tastes as awful as it sounds.
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I did get a few good laughs with the tea though. One co-worker was insistent that we were going to get through this cup of sludge together and was very motivating. I have been forced to drink some pretty unbearable things in my time as a crohnie so I was punking out, majorly. However, my co-worker’s insistence was the key to success. I brewed a cup and the next thing I knew there was a ring of us standing around playing the sip-sip-pass game. Okay, it was more like them taking a sip and trying not to blanch too hard. One girl said it tasted good, but I had to ask her if her face knew that.  
I had another flair this weekend; they are all starting to blur together. I know I have said it before, but the pain isn’t my undoing. It’s the emotional stuff: my kids’ faces and the words they say. I actually missed donuts-and-park day this week. I have not missed that Sunday tradition in months. The whole point of the day was to let the kids know that no matter how bad things got, I would always be there. We would always have these days, these moments…and I ruined it. Or so it feels like.
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Hydra Demon

Well that didn’t take long; a few hours after posting my desire to be a better advocate for my health I got a voicemail from my Digestive Health Clinic. After glossing over my clean biopsy results the nurse wanted to talk to me about a medicine my PA wanted me to take. Riddle me this Batman, how is it that the same PA one week can scare the piss out of you by telling you your liver is having issues and to stop all Tylenol/pain-relieving options, and the next prescribe T3 (Tylenol with Codeine)?
Also, why does adulting for me always require bodily fluid of some kind? Moreover, why do phlebotomists always scoff when I say I am a hard stick? Do they honestly think I am being coy for their benefit? Do they really think I work all day, drive my happy ass in the opposite direction of home and wait in the lobby for my number just to stroke their ego? In the words of my four year old, “How about no?”
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There was a third bandage, but it was removed.

Results should take about 12 hours, so hopefully by tomorrow I will have some sort of answer. Though with each new answer I receive, seven more questions arise. Take for instance the exchange I had with my pharmacist. She seemed to be confused about my prescribed “creams;” she said to her knowledge they would cancel each other out. In essence, I get to write yet another portal (online messaging system for GI Clinic) tomorrow, all in the interest of self-preservation I suppose. I dodge doctors’ offices, appointment schedulers, and nurses’ calls like they were damn debt collectors.
If radiology calls me one more time about scheduling my bone density scan I might actually make an appointment! Now wouldn’t that just make the Hydra happy?

BeYOUtiful

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Biopsies came back benign; no cancer. It is hard to put into words how I feel. In truth, I can best describe it as an episode of “Deal or No Deal,” without Howie Mandel’s uproarious stage presence. The million-dollar case is still in play and the benign results knocked the one-dollar case out…yet the banker (doctor) still refuses to call with an acceptable answer.
Acceptable for me, I guess. Jon and everyone I talk to seem to think I have done all that I can. Me, I feel like I need to be a better advocate for myself; I know my own body. While I cannot always differentiate between a bad stomach pain and a bowel obstruction, I can tell when I am having flair symptoms and everyday symptoms.
My last hope is figuring out the deal with my liver. After the issues last week with lab orders, I have yet to go back. Part of me knows it has to do with my exhaustion but the other part wonders if I am scared to be left in the dark. If the results come back fine, then I truly am out of options for feeling better…because to the doctors and everyone who seems to matter, the labs don’t lie.
I am not trying to be a martyr. I just feel like in a world with so much uncertainty and having a disease with so much uncertainty, a little validation would be nice. In the end though, I guess it is all just words.
If health cannot bring about the happiness I seek, I will continue to look elsewhere. In friendships, hobbies, books, and work. I want to live a life outside of the fear and frustration. I want more than this dual personality heart. I want to be me, always; whoever that is.
I am standing up for myself in ways I was never able to before. There was always a silent contender in me, always a version of myself that strives for the impossible. A version that felt defined by her ability to succeed in a world that never thought she could. Yet, the most successful I have ever felt is when someone talks about my kids.
I have not figured out what all that means, other than I have spent so much time trying to be more than my disease that I have lost the ability to be happy. Admission is the first step, so maybe change is coming.

Spider

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My mom used to have this saying (I hate it as much now as I did then), “Let life be a surprise to you.” As a meticulous and methodical planner, I HATE surprises. Oh sure, show up with lunch, gift me some flowers or chocolate, but never, ever spring ANYTHING on me. It won’t work out how you think it will, that I can guarantee. So imagine my–for lack of a better word, surprise–at the story I am about to tell you.

I commute an hour to work, leaving the house by 6:30 a.m. (on a good morning) after dressing as fast as the Tasmanian devil. I have a hard time getting up; I rarely ever get a full night of sleep, and the nights that I am lucky enough to get more than 5 hours, it is usually broken, restless, and pain-filled.

I like to drive with the heater blasting on my feet and the window down, I know how weird that sounds and I am rolling my eyes at your semi-distaste and confusion. Yesterday I am driving to work in said typical fashion, though I will admit yesterday was an emotional day for me and I had no pre-conceived notions about having a good day, let alone an easy Monday.

Anyway, as I’m driving my pant leg is swaying which I assume is due to the heater/window combo so I just ignore it. For the first five minutes. Then I get annoyed and try adjusting my pant leg. Then adjusting my boots. Finally, I pushed my leg against the seat to stop my pants from moving altogether. That worked, as I thought it would, so I gave it little to no other thought. I had already processed and dismissed the idea of it being a bug (I had a hell day with winged creatures some odd numbered weeks ago and didn’t think I could be THAT unlucky).

HA! Well, I have been wrong before and yesterday was no exception. I got out of my car and I kid you not…the biggest freaking brown spider, yes I said SPIDER, came crawling down my leg and scurried off my boot. I am talking the Aragog of freaking domesticated (I hope) spiders. Are you kidding me?!!? I am standing there in a mixture of shock and horror, smashing this eight-legged freak to bits, shaking in disgust rethinking my entire commute. This…thing was basically caressing me for the better part of an hour and I had no clue. I am still itching and seeing bugs that are not there in my periphery. I feel all sorts of violated. So…check your shoes closely ladies and gents, ’cause eww.

At work I am regaling my tale of woe with one of the corrections deputies (I work at a court house) who is oddly focused on the fact that I am wearing boots in July, like keep up, there was a SPIDER. Of course I am shook up and dramatically playing the what-if game: what if it was poisonous and it bit me, what if my final words are going to be something stupid because the venom is pumping through my veins, what if…another CO chimes in with, “What if you become spider man?”

So to that, should I become SpiderSpears (not a girl, not yet a woman) along with my lame web-spitting hands “super power” (batman household, sorry Peter), hopefully I also genetically create the cure for Crohn’s.

 

Prep, scope, action!

Crohns
This week progressed like a day in the Sims 3; some actions were normal speed, while others happened at ultra-speed. The colonoscopy prep was one of the tamer options on the market, a simple Gatorade and Miralax combo. Not getting assigned the half-lightly or go-lightly prep option was a HUGE win.
To start off you take two Dulcolax tablets (stool softeners) and then wait a few hours. Around 5pm you start the prep mix, drinking half the pitcher; 8 ounces every 15 minutes until you complete all of the nighttime prep. Two more Dulcolax tablets before bed all while rushing to and from the bathroom like having a bad stomach virus. The prep always gives me that queasy, liquid-sloshing-around feeling that makes life super unpleasant. Naturally, sleep was elusive. My head was pounding and despite drinking so much liquid, every food commercial on Hulu made my taste buds yearn for sustenance.
For the second half of prep, the same 8-ounces-every-15-minutes rule applies, however now you also have to be weary of the clock. Your completed pitcher most be drank at least 3 hours prior to the scope. NO throwing up. Pretty much, may the odds be ever in your favor.
I was hating life but doing okay…until the last 8 ounces. I decided to attempt a nap and then down the final few gulps before we left. Seemed like a solid plan. I had my forms printed, my prep down, and my sweatpants on. The clinic is about an hour and a half drive from the house, so I allotted enough time for a bathroom stop or two. Jon, bless his heart, was trying to get me to laugh and enjoy the day; Iwas not having any of that. I was hungry, cranky, sloshing, my head was pounding, and I felt like I was moments away from crying.
It happened without warning; like a key turning in a lock, slow and then all at once. I started throwing up like an extra from The Exorcist. I was so hell bent on not puking that I put my hands up…like I was trying to catch it, but it actually backfired and acted more like a shield. I hit everything: the windshield, the back window, the center console, and the child seats. I was drenched in a putrid lemon-lime bile concoction. It was in my hair, down my shirt, soaking my pants, and even between my toes.
Jon, in all of his infinite wisdom, pulled over to the side of the road and was attempting to clean up with baby wipes. Baby wipes–I can still smell the mixture. I immediately say, “This isn’t even the worst of it.” Jon looks at me and says, “Did you shit yourself?” Ha!  Good guess, but no. Actually, I was worried about being able to move forward with the procedure. Puking is a non-starter. So here we are on the side of a busy road, Jon trying to find anything that can double as a shirt, and me trying to call the clinic without getting bile all over my phone and attempting to clean vomit from my feet/flip flops with a bottle of water.
I was thankful for my Crohn’s in this moment, because I use the bathroom so frequently there isn’t much the prep needs to clean out. The clinic asked a few questions and then determined it was fine to come in. When we got there, I stood in the parking lot staring at the building for a minute. So much was going through my head: anticipation, fear, frustration, hope, and a whole lot of buck-up Kayla, you’ve come this far.
IV went in, routine blood pressure check completed, and then it was time. They got the oxygen mask on, I’m cracking jokes, and the anesthesiologist does her thing. Next thing I know, I am waking up in a curtained cubicle asking to get up. They bring back Jon, who asked the nurse to let him leave (driver isn’t supposed to go anywhere after check in) so he could go buy me a new outfit. New outfit he bought: bra, underwear, even new shoes!
After you get dressed the doctor comes in and lets you know the preliminary findings, but the biopsies take about a week. According to the doctor, scope was damn near perfect. The doctor was excited by this, Jon was excited about this…me? I guess there was a sense of relief. Short lived, but there.
This is the way I see it: my intestines were always good, we just didn’t have the pictures to back it up. The idea that we just stop looking because my scope came back good annoys me. I deserve better than “residual pain from a prior surgery.” My surgery was over 7 years ago. These are new problems I am having. I get that I had part of my intestines and colon removed, I get that my insides don’t match everyone else’s, but a clean scope doesn’t stop the symptoms.
My PA wanted more blood work to check on my liver, but the clinic didn’t want the liability, so even though I had a perfectly good IV, I was told to go to the lab. As you can imagine, I was done with the day. I decided to just go to the clinic on Friday after work, since I had prescriptions to get as well. Apparently the bloodwork order never made it to the lab, nor the prescriptions to the pharmacy. Talk about needle anticipation wasted on a ten-hour work day for nothing!
So in short…I am no closer to remission than I was before.

Now the liver?

prep
Colonoscopy- cause who doesn’t want an evening spent drinking Miralax, playing a bathroom dance of doom, and praying you can keep it together long enough to not to throw up the prep drink? My pre-camera date was scheduled for August 4th. (Yes, WAS being the operative word.) My PA wanted the scope results ASAP but my doctor was booked out past the 20th. I can’t say I am super excited for this procedure, but I know the stress of the unknown will eat me alive, so I called to reschedule. Originally I picked the FIRST available Friday, that way I could work an exhausting but full 40 hours, and then have the weekend to deal with the aftermath–whatever that should be. For the reschedule, I said Thursday. Not really sure the logic there, just went with my gut.
I have IBD–don’t trust MY GUTS! As luck would have it, an un-reschedulable opportunity presented itself…for, you guessed it, the new re-scheduled date! Of course I’m panicked; how am I going to make it all work and still keep my full 40 hours?
It turns out that my doctor wanted to be involved. He went from being booked solid to “I’ll fit you in next week.” My gut reaction is that he is concerned and looking for something, but again…how much can we really trust my guts? Hopefully my GI is just embracing his amazing reputation and being involved from beginning to end.

I received another call, several actually; it seems in addition to the other problems, my liver enzymes are up. Not fatty-liver up (though I have that as an issue as well) but higher-than-average range. What does that mean exactly? Quite frankly, I have no idea. I was asked a series of questions: are you itching, do you have any rashes, and is your skin or eyes yellowing? I asked if I was looking at liver failure or just a liver problem and the lady on the end of the phone said we needed more tests to be sure but it is not likely liver failure. I was told to avoid taking pain meds, Ibuprofen, Tylenol, etc., and to head to the ER if I noticed any yellowing.
As a pale white girl living in the land of florescent lighting, the mirror has been my friend. I keep thinking, asking, and looking to see if I am ACTUALLY yellow, or if it’s in-my-head, bad-lighting yellow.
This flair is different in so many ways. I feel an unease and a sense of foreboding that I don’t recall with my others. It probably has less to do with my flair and more to do with my anxiety and fear of managing this disease with a toddler audience.

Pie in the sky

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I have often have these daydreams about what my life would be like if I could do or say whatever I wanted. Less like a vision and more of a fantasy.
This week I keep wondering, what if I just said no? No, I will not continually ask you how high when you tell me to jump. No, I will not re-work my entire schedule to get in for a colonoscopy because you and your fancy degree have deemed it “urgent.” No, I will not offer another blood or fecal sample. No, I will not take your plan, whatever letter we are on now, meds. In this week’s flipped reality, I am a girl emblazoned with a mission.
Except…treatment isn’t a forgone conclusion. To be a warrior, to be a fighter, to be a survivor, this is how the game is played: they demand and we give — until there is nothing left.
After all, we need the cure. We need the help. We need the meds. We need the answers. We, we, we… Usually, this is the point in my pie-in-the-sky musings where the top spins off the table and lands with a sickening crack.
I have spent so much time feeling like I need to keep it together; to be strong for the boys, for Jon, for my co-workers, for my family, but really I think I need to stay strong for myself. Because if I fall apart, that’s it.
Well, if there is one thing I have learned through this flair, hiding your pain doesn’t make you noble, it makes you a coward. And I am tired of being a coward.
So world, here I am. All messy, tired, puffy-eyed, sleep-deprived, worry-lined, me. I will tell you I am fine, but really I’m not.
I will be though. I’ll allow myself tonight, to dwell, to cry, to believe my worrying changes everything.
Tomorrow, well tomorrow is a new day.

Swing and a miss

It has been quite a week.
I should probably mention results from last week’s blood test came back; cortisol levels are high, but within “normal” range. Swing and a miss. Also, can I tangent and say how frustrating it is to be waiting on potentially life-changing information and not get a phone call? Everyone is cooing over the digital age, but what insanity is this world becoming? I got an email (an email!) that a lab chart had been updated in my online medical account. No real explanation as to what my levels meant, just an email that new labs were in. Cool. Gone are the days of bedside manner, I suppose.
I got my cortisol results Monday or Tuesday but had treatment on Friday. I can pretty much say I knew what was coming: test time. Test time and more new pills. Thankfully no CT to schedule, just a colonoscopy (which, I would do twice a month to avoid having a CT scan… barium is no joke).
The request to go back on Prednisone, as it seemed to be the most helpful thing lately, was circumvented. They want to try Entocort (again) or another new drug that I cannot recall the name of. First though, they need to track the progress of my insides. I have always had lower GI-ileum issues, but my last scan showed upper GI inflammation. Not much, but enough that made my then flair make sense. PA wants a full road map before she determines a new course of action. As for fissure…well that seems to be a non-starter. PA wants me to continue (re-start) taking the cholestyramine (bile binder) and add in 1-2 Lomotil pills (used for diarrhea), up to 8 a day. Basically, they said that until I get the bile under control, there is truly nothing they can do to help.
Yay! For me that means constant pain and backwards pads to contain the “leakage.”
At treatment, they were able to get the IV hooked on the first attempt, but got no blood return. After a three-hour infusion I had to walk across the building to the lab and get blood work done; they wanted to check my CRP levels after the round of steroids and increased Remicade dosage. Why they couldn’t check that last week when I had to make a special trip in for blood work, I don’t know.
It isn’t that I am ungrateful or determined to be unhappy, but sometimes I just want to scream. After treatment I get pretty tired but this weekend we had house guests. I was able to nap but I wanted to spend time with my visiting family. We sat around a board game and it was like I was playing from somewhere else; the entire exchange felt forced. It was like I couldn’t get out of my own head long enough to appreciate the little things, the laughter, the smiles, the genuine conversation.
You might not know this, but sometimes I have no idea what is going on. Like muscle memory, I am keenly aware that some motions, tasks, and conversations are effortless and thus, the only way I survive.