April 23 2018

Updates

If you hadn’t noticed, I took a two-month long hiatus. I didn’t get sick or anything, at least…not sicker, I just got busy.
~
In my busyness I kind of lost my voice and reason for blogging. I wanted something that allowed me to unburden my soul and become a passionate/open advocate, but the more blogs I read the more I felt like I wasn’t cut out to be a blogger.
~
I don’t want to write each piece thinking about word content, layout, subtitles and headers. I just want to write what I feel and what I know. If this means a lack of subscribers or the inability to monetize, then so be it. This blog was meant to be a light in the dark–for me and for my readers.
~
It took me awhile to realize this, but I write for me. Which is my way of saying, “If you’re still with me, thank you!”
~
In medical news, I have stayed on Remicade, but at an increased frequency. I now get IV infusion Remicade every six weeks. So far, I haven’t noticed any changes. In addition, my belly button is still leaking, and my liver enzymes are not getting any better.   

Getting Remicade like a boss
~
Have you ever heard of step therapy? The concept is that the medical field can start with the most “cost-effective” medicine and move on to the more expensive medicine as needed.
*That is all well and good if health had any regard for cost.
*Which, from my vantage point, it doesn’t.
~
Let me backtrack a second…when I had surgery years ago, it messed with my digestive tract. I lost the section that helps with bile binding. This has led to being put on all types of medicine to try and decrease the amount of times I use the bathroom. (I am currently at 10+ times daily). Nothing has been working and to move to the next medicine that would work, I would need to first try (and invariably fail) the next
medicine on the ladder–a medicine that has been known to cause liver issues.
~
In order to counter this, my PA has decided to try a different approach; as in, she started me on pancreatic enzymes. I truly don’t know enough about the functions of the pancreas to say if this is a workable theory or not, but the idea of potentially screwing up a working organ, to avoid worsening another has me all sorts of anxious.
~
Thank you, step theory.
~
The only other medical news to report are my pending surgical/dermatological referrals. Apparently, my belly button is either something insanely easy like a skin issue…or something incredibly scary, like surgery.
~
Oh, I lied…I might have Lyme disease; MIGHT being a very key word.
~
You like how casually I bury the lead?
~
I had a tick bite as a kid that was actually a very traumatic memory. Picture a scary no-tell motel (okay, I have no idea if it was actually that bad, but we were mid move across the country and had taken up temporary residence at a local “inn”), a lit cigarette, and a burrowed tick into the scalp of a seven-maybe-eight-year-old me.
~
Fast-forward twenty years and color me shocked when my sister calls asking me about my knowledge of Lyme disease. Apparently, the disease can manifest and mimic other auto-immune diseases.
~
When I brought it up with the doctor, they were more surprised at my never having been tested than by me suggesting it as a medical diagnosis. Not sure what the test will say but I have a pending lab order. As always, I’ll be waiting patiently for the other shoe to drop.
~
I’ve been keeping up with my half marathon training, so keep an eye out for a post about my progress! I have a lot to tell you. As a girl allergic to exercise with an out-of-shape body, I hope you’ll be pleased with the progress I have made; I know I sure am!
~
Work is a topic I probably won’t update you on, for several reasons: the biggest being my frustration at pretty much everything career-oriented right now. It’s hard to wake up thinking you know exactly what you want out of life, only to face reality and realize you really have no clue.
~
Until next time…
February 5 2018

What are the next steps?

The next step to becoming a mediator was passing the written and oral exams. I submitted the written portion weeks ago and had my oral exam scheduled in December. More specifically, on the day of my last, last infusion–the one that went haywire and left me sitting in the clinic all day fearing the worst.

Obviously, I had to cancel the meeting. I rescheduled after the dust settled, or mostly settled as the case seems to be. With my busy schedule and the interviewer’s schedule, I realized my best option was to schedule it for the day of my most recent appointment. I had no clue the appointment would turn out the way it did.

More than that, I have no clue how I managed to drive straight from the clinic to the Dispute Resolution Center office and pitch the hell out of myself. I wanted to fall apart. I wanted to express outwardly the emotions I felt internally, but I could not. I was determined to get through this step. I was determined not to cancel again.
Shockingly, I passed.

I am not as unaffected as I seem. A few days ago, we got a toll ticket in the mail. We are never in the area the ticket is from and the license plate was to a car we recently traded in, or so we thought. After a call to the ticket information line and a call to DOL, the ticket proved to be valid. After my appointment I missed my exit. I was so focused on not breaking down, on compartmentalizing all my feelings, and on getting to my exam on time that I completely missed my normal route.

Thankfully, the ticket is only $7.00.

If you are wondering, the next step is observation. I have to view x amount of mediations before moving on to the step after that. It’s a long and lengthy process.

In other news, insurance has taken my tough choice away; at least, I am choosing to look at it that way. The truth is insurance denied the request for new medication. Oddly enough, I’m even more confused about how I feel. On one hand, I feel overjoyed! I can use this as a platform to bolster my case for staying on Remicade. I can pitch the idea that maybe I just need a higher dose. (I think we tried and failed to get a frequency increase in the past, but maybe given the evolved circumstances insurance will approve it this time around.)
I sent a portal stating my opinion and my desire to try and increase the dose, or frequency, or both! I mean really, what do I have to lose? I’m already signing appeal paperwork, so what could it hurt to try? Think about it, if it works: problem solved; and if it doesn’t, at least I can hang up the Remicade IV knowing I fought my hardest.

Then again, on the other hand I feel utterly demoralized. What an F’d up world we live in that I have to explain to a panel of non-doctors that I matter. That my life means something. Do they think I want to be on these medicines? Do they think I enjoy the harsh side effects? Or that I want to be so completely reliant on something? I guess I just don’t understand. Are they looking at my chart and saying I’m not sick enough?

Is it a money thing? Is it luck of the draw?

I can’t be sure, but I think my portal might have worked! I got a voicemail today saying the clinic wants to reschedule my next infusion sooner!

For the final, and lately all-consuming update: I have decided to rejoin Team Challenge. For those of you unfamiliar, Team Challenge is an endurance training/fundraising program through the Crohn’s and Colitis Foundation. img_6339

I will be training to run/walk a half marathon. I purposely picked the race furthest out so that I had ample time to train. Also, I wanted the furthest one out because I have a fundraising goal of $4,000. I know it’s a lot, but with my health issues, I am more determined than ever to fight back.
I’m trying to come up with ideas. Currently I have a bowling event (Bowling for Bowels) planned in May, that is taking up a lot of my time, but I need more.

If you have any ideas or suggestions, I am all ears!! I also will be raffling off a brand new Kindle Fire– every $5.00 donation (until 02/18/18) is an entry. I am also in talks with a Brewery, hoping to do a trivia night.
You can track my fundraising progress here!
As far as the training, I’m out of shape. I am secure enough in myself to throw that out there. Even still, I have been walking 2 miles after work, and even did a mini workout/punching bag session yesterday when the rain was overwhelming!

I haven’t been 100% consistent with the walking, but I have worked out/made an effort more in the last two weeks than in the last six months!
I figure, if this disease is going to keep taking my blood, sweat, and tears, it’s at least going to do it on my terms.

January 18 2018

What do I do now?

Tough decisions always come with a lot of emotional baggage, so let me be real with you. I am scared. Literally petrified that no matter which choice I choose, it will be the wrong one. 
At my most recent infusion, the nurses drew blood for a drug-level check and scheduled me for a follow-up appointment in two weeks. I left with the knowledge that I would likely be getting my infusions upped from every eight weeks to every six, pending insurance approval. 
21082989_10155710355078914_2886796457476833764_o
I spent the majority of the time prior to my follow-up pissed off that I had to return–again. It felt like a complete waste of time. No one has been hearing me, they don’t want to listen when I tell them about the blood, the pain, or the headaches and they don’t want to talk layman’s terms with me or give me the full picture. So why the need for a follow-up? As in, why now? Why not a year ago when I came to them with a butt that looked like scar face, or six months ago when I was STILL complaining of fatigue, bleeding, headaches, a leaking bellybutton, and insomnia? 
I predicted one of two things would happen: I would show up to learn that insurance, in a random act of benevolence, had approved the request for a dosing switch; or I would show up and leave just as frustrated and defeated as when I arrived. 
I never prepared for the third scenario. The one where the nurse decides to shut the door on Remicade. I started this medicine in June of 2014, one thousand three hundred and thirteen days ago. I want more time with it; I want more days. 
Why? Well, three and a half years ago I sat in a room with a nurse who advised me of the perils that go along with biologics. If you start a drug and it doesn’t work, you could effectively be cutting years off your life… or so it was presented. It seemed like a last resort, not a spur-of-the-moment whim. With less than a handful of FDA-approved drugs on the market, starting a biologic at 24 wasn’t what I had planned. But, as I said, I was never really given a choice; I picked my pregnancy and never looked back. 
I have never regretted the choice I made; in fact, I would do it over and over again. What I do regret is not reading the material and learning the full scope of the medicine. At that point, I was so focused on getting better and going into remission to protect my child, that I never saw a reason to get informed. 
Now that I am faced with the daunting realization that I am days away from getting a new med, I wish I had more scientific answers. The only ones I have are emotions and answers of the heart. 
I am afraid to risk the decent days I have now for the potential to have more. I’m 27 with two little kids; I am not ready to give up on this drug. I want to run the clock; I can take the 3 or 4 weeks of feeling like crap if that means I can stay on the meds. I want more than anything to see my kids grow up. Maybe that doesn’t make any sense, and maybe the new meds really will give me eight better weeks…but if it were your choice, your kid, would you risk it? Would you risk the manageable for an uncertainty? 
img_5623
All that being said, the nurse told me that meds have come a long way in the three or four years since that appointment. She agreed that yes, they told patients the same thing I was told, and yes that might have been true then. She said, “Things are different now, we have new meds now.” She proceeded to list a few and there was only one or two that I had never heard of. That would have calmed me down, had she not followed it up with the statement that she wanted to give me 12 weeks on the new medicine before she pulled it. 
12 weeks?! That hardly seems like enough time! That isn’t even two infusion cycles. How did she go from telling me not to cry, that there are more drugs available, to then talking about killing a second medicine – all in the same breath? 
I don’t know what to do. I don’t want to quit this medicine if there is a potential that my low drug level has to do with something else, especially when I don’t have any antibodies. I also don’t want to keep beating a dead horse. 
People tell me to do the research, but how? I’m not a doctor, I cannot read half the reports and studies, and the only thing everyone agrees on is that they have no idea how or why this disease affects people differently. 
What do I do? 
 
 

January 11 2018

What are your New Year's resolutions?

New Year’s — a time for making plans and rewriting the past. For me, I choose to look at it as a clean slate; you cannot rewrite your past but you can learn from it. I am who I am because of the things I have done and because of the things that have happened in my life.
I am a product of nature and my own environment.
I was curious about the history behind New Year’s resolutions so I decided to look it up. It led me to an article about the ancient Babylonians. I read that after a festival they crowned a new king and made promises to the gods. Should the Babylonians keep their promises, their gods would favor them in the coming year.
I have never been the religious sort but I am starting to understand the depths of its meaning and comfort. To what end, I am not quite sure. What I do know, is that you don’t have to be religious to believe in something. This year, I am choosing to believe in myself.
The act of making resolutions always seemed disingenuous to me. It felt like another opportunity to let myself down or to disappoint myself. False promises, if you will.
Playing it safe never built character, so I decided to go against my previous inclinations and make a few resolutions. Four of them, to be exact.
 

img_5705
K Kemp

 
Find familial fulfillment.
When all the scary stuff of the last few weeks went down, it wasn’t my career or more ambitions of grandeur that I was scared of losing, it was the wreckage of my family that ate away at my core. I was scared of what would happen to them. I was worried about how the kids would react or perceive me if I was forced to make uncomfortable decisions. This made me realize that my family truly is the most important thing in my life.
You’re probably thinking that is a given, right? It should be a given. However, I have spent so much time and energy trying to prove that I am more, that I am better than this disease that I put my work and my schooling above other things. Including my health. I don’t want to do that anymore. I should work to live, not live to work. My kids need to come first. My husband and our family need to come first.
Stand up for myself.
I never want to hurt anyone or make them feel as small as I have. Oftentimes, this leads to me keeping quiet or trying new medicine after new medicine, when all I really want to do is shout and exclaim that I am not being heard. Not standing up for myself seeps into every aspect of my life, not just when it comes to doctors. This year, I want to make every effort to be heard. To stand up and say the things that I am thinking.
Share my truth.
I have recently started to talk about the uncomfortable things that go along with having an autoimmune disease. I want to continue talking. I want to keep having those awkward and untoward dialogs. I want to share my truth with the world in an attempt to shed some light on often-ignored topics. My truths are mine alone, but maybe just maybe, they are someone else’s too.
Spend more “fun” me time.
I don’t know the actual numbers, but if I were to bet I would say a good 90% of my alone time is spent in service of something else. Be it commuting two hours a day for work, spending 40 minutes at the pharmacy waiting for a prescription, spending countless hours hooked up to an IV pole, cooking, cleaning, or just lying in bed praying the pain away.
I want to try and take some time for me. Time just for me that isn’t spent being in pain, being isolated, or angry. I want to shy away from linking alone time with the above-mentioned negative connotations.
I want every year to be better than my last, 2018 being no exception. Don’t get me wrong, I want to lose some weight, read more books, stop cussing, or learn a new language. These things all take effort and energy that I don’t necessarily have. While the resolutions I made also require effort, there is no way to fail in my pursuit of achieving them.
In my opinion, that makes them the perfect resolutions for me.
What are your new year’s resolutions?

January 2 2018

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

The roads were still an absolute mess getting home but we weren’t stuck for too long. Rather, not long enough that we turned around again but definitely long enough that I had never been so happy to be home!
It couldn’t have been more than ten minutes after we walked in the door that the phone rang. It was one of my Infusion nurses letting me know that they had an available CT slot for me. In three hours. In another city.
With traffic being redirected into my little corner of the world, I had to leave over an hour and a half prior to ensure I would get there on time. I really didn’t want to risk missing the appointment, even if my stomach hadn’t quite gotten over the previous day’s testing.
This time I went alone. Probably because I was too sensitive but definitely because I needed the space to fall apart. When you grow up dealing with this stuff alone you learn to stay that way. I never fully let anyone in or tell them my fears, not the real ones. Not the dark and potential reality fears. No sense in making others feel like they are also flapping in the twisted nether.
The tech (whom I later learned was in training) came out with three giant cups of water. I asked why I wasn’t doing iodine and she said that the particular test ordered could be done with either water or iodine. I was skeptical but I wasn’t going to question her.
Remember what I am always saying? Be an advocate!
I should have pushed the issue a little harder.
I wasn’t layered up much and between the AC vent above me and the ice-cold water I was pounding, I was shivering. Even the anger simmering beneath my skin couldn’t warm me.
When it was finally my time to head back (they usually give 45-60 minutes to drink the prep), I was escorted to a curtained area and told to put on the gown. I was more than ready to have this be done.
I should know by now that nothing ever is that simple.
I was lead back into the radiation room and was about to lay on the exam table when the radiologist came in and put a kibosh to the test.
As he tells it, there is light contrast (iodine or water) and dark contrast (barium, etc.). My doctor ordered light contrast but indicated that he was concerned I had an intracutaneous fistula OR an abscess. Apparently, light can tell the radiologist if there is an abscess, but only dark can see both a fistula and an abscess.
I didn’t exactly take the news well for several reasons. One, I was standing in a room full of radiation in a freaking half-open gown crying in front of two men–two strangers–two people who did little to earn the tears. Two, I had been sitting in that drafty tomb (that’s superfluous drama) of a waiting room sipping water in fear while they…what? Didn’t read my chart? Also, three might make me sound spoiled, but who does the radiologist think he is to overwrite my doctor’s orders?
Obviously, I wouldn’t want to have to do another CT even if my insurance would approve it, which it sounded like the radiologist was trying to avoid. He was willing to do the injection/scan but he said if it didn’t uncover an abscess, I would be no closer to figuring out what was wrong with me.
Given the hour I was not able to complete the test that night. Instead, I was sent home with two bottles of barium and instructions on how to prep and when to arrive.
img_5397
Barium is probably one of the worst things I have ever tasted. It’s slimy and viscous. In my experience, it is always better to go with unflavored prep, but I was only given the choice between vanilla, chocolate and banana. I absolutely hate banana, and I love chocolate, so I went with the one I would be able to stomach and not cry about not wanting to eat in the foreseeable future.
(During one of my hospital visits years ago I needed to down an ounce of some salt solution. The nurse on duty, for whatever reason, decided to drop the one-ounce salt shot into an ENTIRE 12-ounce can of Sierra Mist. WHY? I have always wondered why she didn’t let me chase it. Regardless, I was unable to drink Sierra Mist for years. It tasted like falling asleep in the ocean with Froot Loops in my mouth. True story.)
Barium is a liquid best served cold. On this particular day though, I had an hour commute to the clinic and I couldn’t sit and down the prep quickly before leaving. No, instead I had to drink the prep while driving. It was kind of awful. The first bottle went down relatively quickly and decently smooth, though the second bottle was psyching me out and getting warmer by the minute.
I was able to drink both bottles with only a few questionable burps. I was actually rather proud of myself… until I got to the clinic and was asked to drink another half bottle.
After dressing down and going into the radiation room I was asked to get on the table and raised up for the scan. Despite my abject terror of needles, I let the tech-in-training practice my IV.
I don’t know about most patients, but I am never one to turn away a student.
After the first two missed attempts, I gently advised both techs that I have a hidden yet magical IV spot on my hand. I told them they wouldn’t be able to feel it and 90% of the time they can’t see it either, but if they follow the dot (a permanent marking from 3+ years of IV infusions) they’ll hit the vein every time.
In typical fashion, they seemed hesitant to trust me or the spot. Three other failed attempts and visible sweat on the male tech’s forehead later, he was ready to try the hand. It worked like a charm. It always does.
img_5398
After I was done, I asked if I could buy the two techs coffee. It had been a horrible few days, but they were the only two that actually saw me for what I was: a scared human. Of course, they declined.
As I was getting re-dressed, the male tech called through the curtain asking me to stick around after I got dressed. I dressed slowly and with uneven breathing. I kept wondering…did they find something? I have had fast calls before, but never this fast.
When I pulled the curtain open the tech came to me with a coffee card in hand. “We don’t deserve coffee, but you do,” he said. I can assure you, I was not expecting that.
Knowing I had nothing to do now but wait, I decided to treat myself to lunch after the pharmacy. When I texted my sister of my plans, she decided to drive the hour or so up to come sit with me. It was a very generous offer. One for which I was more than excited.
While sitting at the restaurant waiting for my sister, my PAC called. Final culture swabs came in, in addition to the strep and the staph, I also tested positive for antibiotic-resistant Influenza. Awesome, right?
PAC called CDC and with their recommendation, suggested I take cephalexin for ten days. One 500mg tablet twice a day for ten days.
While on the phone my PAC also asked if I had been having any pelvic issues. I kept the snarky response in my head at bay and just replied yes, reoccurring “Bartholin cysts.” (The snarky response had to do with my coming to her months ago for a quick exam, to which she brushed it off and recommended anti-fungal medicine.)
She went on to mention that although the MRI wasn’t completed and had no contrast pictures, it was not a waste. From the report she was able to glean results that indicated perianal disease. Huh, imagine…after a year of me complaining, they ACTUALLY found something.
Hard to diagnose though it may be, I felt more anger than validation.
The plan was to pick up the prescription and wait for the CT results. MRI showed something that potentially could require attention but without the contrast they wanted corroboration from the CT results.
Corroboration they did not get. CT did not have the same results. In fact, it showed differentiating information. My team has decided to go with the CT results. I don’t agree with this plan but without a medical degree my opinion has mattered nil.
According to them I was fine to resume IV Remicade. I needed to wait 72 hours for the antibiotics to start working but I wouldn’t be hospitalized for Christmas; the only true win I have felt.
img_5514
At my infusion appointment I told them about the bleeding. The excessive bleeding. Would it shock you to know, I was dismissed? I was told that could happen. Of course, it can. I have lived with this disease long enough to know that, I was merely making mention that the blood was worse. Extremely worse.
Instead of being on the napkin or mixed, the blood looked like someone poured juice into the toilet bowl. I was feeling weak, more exhausted, and as a bonus, I am iron anemic.
I was sent home with an appointment two weeks out.
They drew blood for drug levels and now they are thinking I need MORE of the Remicade. We just doubled in May, and a week ago they were afraid the drug wasn’t helping…now they think I just need more of it.
Personally, I think they are taking the easy way out. I think they know I am un-winnable case.
Did I mention the disease progression? CT indicated obvious and apparent disease progression since the last CT scan a year ago.
Well…bawls!
 

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.  
 
November 28 2017

Do you love yourself?

Silly girl,

They love you,

You just don’t love yourself.

-H.S.-

Experiences change people. Music, movies, books, religion, culture, likes, and even dislikes; it all plays a part in who you are.
Some of my experiences still embrace me, like a bad dream.
I wake up some mornings and feel the fear of my past. The sting of rejection. The loneliness of heart. 
The other day, while getting ready for work I was venting frustrations over the various situations the doctors haven’t been able to fix—mainly—my butt. Not to get overly emotional, but Jon made a comment that seriously pissed me off. Something along the lines of, “The meds helped…you just stopped taking it.”
Okay, the “meds” that worked caused my stomach to cramp up. It fixed one issue (sort of) while forcing other parts of me to stop working. In fact, I was crying in pain and bleeding more than normal during bathroom visits.
I made a choice, not him. Me. So then why does he feel slighted?
The diagnosis came 10, almost 11 years ago. When will people trust that I know and understand my own body? Especially when the disease crashed into me long before that.
I have spent entirely too much of my life being told I was making it up, faking it, or not trying hard enough. Hearing Jon sound like them–all of the people I have fought against–caused a visceral reaction.
IMG_5015
Even knowing the depths of his love and his genuine concern, I spent the day in a piss-poor, bitter mood.
No matter how much time has elapsed, I am still that broken little girl. That child, standing in a field outside her parents’ house talking to the cow next door. (I named him Prince and I still think about him from time to time.) He disappeared one day. I have always imagined he was sent off on some great cow adventure. I know better; I have always known better.
“Objects in mirror are closer than they appear.”
I am constantly in a state of unease, worried that any misstep will take me right back. That another surgery, hospital stay, ileostomy bag, or bowel resection is imminent. It hurts to feel this way; to constantly be looking over my shoulder for a danger that exists inside my own body, inside my soul.
I keep hoping that one day I will let it all go. That the walls I have built and fortified will come crashing down. I want the gray clouds of long ago to dissipate. I don’t want to fear the rearview any more.
I want…I want to love myself.
Love myself the way that others do.