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.
 

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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.
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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.
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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.
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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.
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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.
 

November 20 2017

What does it really mean, to be in bed all day?!?

People seem to have a common misconception about what being in bed all day looks like for the chronically ill.
It isn’t all Netflix and chill. 
I had to call out from work today, which is somewhat of a rarity for me! If I am calling out, my body is giving me the business. I made it (barely) through my shower, got dressed, and even managed to feed the animals. I was running late, but I made it to the door.
I found myself standing there, just standing. I have no idea if it was seconds, or minutes, but I knew I couldn’t go to work. There was no way I was going to push myself to drive an hour-long commute in the stormy, power-outage rain we had. If I could magically transport myself to work, yeah maybe…maybe I could have bucked up and gritted my teeth.
For me (I cannot speak for others) bucking up and gritting my teeth is a full-time job. I push and I smile through the pain; whatever pain it might be that day. (Or heck, whatever pain it might be that second, that minute, or even that hour.)
Symptoms come and go, often without warning.  
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My neck and head were pounding. Anytime I blinked, the pain came blinding and searing. If I tried to lift my head, the ache in my neck became unbearable. I took pain meds hoping to fall asleep.
Sleep and I are in a general relationship of oil and water; we just never mix. Often the meds will help, but even they can only do so much.
I laid there, in agony. We lost power so I was shivering and unable to force myself to get up and put on warmer clothes. Nothing offered me comfort, not my pillow, Jon’s pillow, or even no pillow. Jon had just taken a shower before leaving, so I couldn’t take a bath (we have the smallest water heater known to man, on a good day we can get the tub half full of water) or turn on the TV to drown out my thoughts.
Instead, I just laid there hoping the kids wouldn’t wake early. Hoping my co-workers were not mad I had to call out, hoping Jon made it to work okay. Hoping the pain would go away…hoping for things to be different.
There is a moment when I wake, a single breath of a moment, where everything is good. Until it all hits me. The stiff neck, pounding head, and realization that my “nap” did nothing.
I could hear the kids but I was in no position to be with them today. That hurt more than the pain in my upper body. I am extremely lucky to have my brother available who watches them during the day. He just took them as if I went to work.
In a rare moment of strength…I walked downstairs and regretted it. Jackson hugged me tight, exclaiming he missed me. He was sorry that I didn’t feel good and he never wanted me to go. The tears fell hard and fast when I told him I needed to go lay down.
This is what I meant by it isn’t all Netflix and chill. These tears are the reality of a day in bed. It isn’t TV and snacks. It is disappointment–your kids’ and your own. It’s regret, guilt, and pain.
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Lying in bed all day means staring at the clock. Feeling guilt like a second skin, and wishing for more.
 

November 11 2017

Flareplane

Sometimes I can foresee a flare before it happens. Little warnings fall and rise with each passing breath. I think of it as an internal airline flight; my body projects turbulence, flashes the seat-belt sign, warns me with nervous-looking flight attendants scurrying to their empty seats, yet…it isn’t until the eleventh hour, when the oxygen masks are dropping from the ceiling that I ever take notice.
Err, notice is hardly the word. I know the flare is happening–I feel it with every fiber in my being–I just choose not to acknowledge it.
The idea that you should help yourself before helping others never crosses my mind. It is my pride that keeps me burdened. I have an overwhelming sense of self-sufficiency, a trait that is shaping up to be both a blessing and a curse.
I wish I knew how to tamp down my feelings of inadequacy. I wish I didn’t feel like I have to take on the world by myself. I wish I wasn’t ashamed of being viewed as weak. Asking for help is an over-looked strength, and I know the last thing in the world anyone can call me is weak, but knowing and feeling are very different.
Of that I am sure.
You might remember from my last post that I was told to pray for both viral and bacterial infections. Well, I can’t say much regarding the bacterial (belly button) situation; it appears that the easy fix was neither easy nor a fix.
As for viral, I have a lot to talk about! (In great detail actually, but I won’t.) I will suffice to say that I got a viral infection. I was bedridden. I hated my body. I have a lingering cough, but I am on the mend thankfully. Going purely off of how bad I felt (with no insight into what the alternative issues could have been) I might not have hoped so hard for the infection; it kicked my ass.
Following the infection came a sleepless week of frustrated hell. My body demanded sleep, but my mind refused to allow it. Worse, my mind actually functioned better without it. I think in a 55-hour period I had managed a full 6, maybe 7, hours of sleep. It wasn’t just that I couldn’t shut off my mind, it was like I was living out a movie. It was as if I had developed the ability to astral project myself. I hated every second. I counted sheep, took baths with lavender, defused oils, and even spent hours staring at the wall–to no avail.  
Unrelated, I started receiving calls from medical imaging places again. I guess it is finally time to schedule that bone density test. I have no idea why of all the tests/scans I’m forced to do, this is the one I am avoiding. I could say it is the unnecessary burden and an undue hardship of having to figure out how to schedule ALL of these appointments while maintaining a job, commute, children, blah, blah, blah…but that just makes me sound selfish.
I am incredibly lucky to have a job that has sick leave, even if I burn it as quickly as I earn it. In fact, I am incredibly lucky even to be working. I know there will come a day when I have to quit. I could also say that of all the tests, this is the one that matters the least. Okay, maybe not the least, but the results of this test won’t bring about life-or-death decisions. They might bring about diet, medicine, or even lifestyle changes, but nothing detrimental.  
Is it the change that scares me? I would think I would be used to that by now. Is it the frustration of having yet another thing thrust upon me that is outside of my control? Is it the agitation of jumping through hoop after hoop, only to be left in the dark? Probably all of the above, and then some.
October 28 2017

Viral & Bacterial

This is one of the first moments I have had to let my guard down, to let the silent whispers of my mind ring loud. Infusion days always offer trepidation and a sense of comfort, however odd that may be. These feelings are two sides of the same proverbial coin offering little and giving even less.
I worry. I hate that I worry.
 
I have been having difficulty swallowing. Nothing outlandish or extremely painful; no fever, chills, or a cough, just a pain when I sip water or attempt to eat. I mentioned it to Jon but I tried not to complain. It probably seems to him that I complain often but I try not to. There never seems to be a point–he can’t fix it or me, so why make us both suffer?
 
Regardless, I mentioned the pain to my nurses. I don’t exactly have a great track record for my complaints being taken seriously, but I felt like it was important enough to mention. My PA offered to look at my lymph nodes with a light after my drug drip. Her compliance was actually less comforting than I had hoped.
 
My hand breathes tangible life into the phrase “blind faith.” There is an un-feel-able vein in my hand that has offered IV passage for the past two years. Yet, for some reason (probably because I needed bloodwork) the nurse decided to avoid the golden spot (permanently marked by repeated IVs) and go for the visible and bright vein above. To my knowledge, the useable vain has only failed once–to human error, no less–but I digress. For the record, the big vein failed.
IMG_4058
 
About an hour into a two-and-half- to three-hour treatment I got up to use the restroom. When I looked in the mirror, my eye was red–bright red. I remembered rubbing my eye but I didn’t think much of it at the time. Itchy eyes can be bad news bears during treatment. There is always a risk, an unspoken truth, that any infusion could be the last so I contacted the nurses. One nurse grabbed the PA and together they asked me questions. “Does it hurt to breathe,” do I itch… the questions you would expect to be asked during an allergic reaction. They ran my blood pressure and listened to me breathe. I had driven myself so they didn’t want to administer Benadryl right away. Instead, they turned off my drip and decided to wait a few minutes. My breath sounds were wheezy, but I assumed it was more to do with my lumped throat than anything else.
 
Fifteen minutes is a long time when you are thinking the worst. What happens now? Is this it? Did I really spend countless hours, pain, heartache, and years for this to be how it ends? What meds are still available and which one can I use after Remicade? Did I start with the medication that can move to any of the other biologicals or did I start with the wrong one? Like a clock hand, my mind spun and spun.
 
Thankfully, the rest period seemed to do wonders, and they were able to finish out treatment at a reduced drip rate. After the post-drip flush, one of the nurses walked me across the clinic to a patient room with a light and I felt something warm and sticky. It was an odd sensation; not unpleasant, just foreign. Blood. There was a certain beauty, I must admit, to the stark contrast as the bright red bloomed across my pale skin. My already anxious physique became even more so as the nurse helped me wash up. I noticed a mark, one perfect long scratch marring my unmarked arm. Looking more closely, I realized it was tracking along my vein. Thankfully, the mark seemed to ebb away just as quickly as it appeared.
 
After all of the excitement, the PA looked down my throat and, at my insistence, looked at my belly button. For a while now my belly button has been leaking. Sounds gross because it is gross. I mentioned it months ago to my GI doctor, but he either didn’t hear me or didn’t seem concerned.
I can’t take it anymore. Between the anal wound that won’t heal, the leaking belly button and everything else…I’m tired. I want answers. I want more than a pain prescription and a sympathetic look. I want control, I want my life back.
 
To avoid recapping the entirety of that experience, I’ll just relay the highlights. Basically, I need to pray for both a viral and a bacterial infection. Viral for my throat and Bacterial for my belly button.
Viral and bacterial, these are the best-case scenarios; the things I beseech.
 
There is a saying in Latin: “Aequam memento rubus in arduis servare mentem,” which translates to “remember when life’s path is steep to keep your mind even.” I allow myself to get bogged down with all of the things I cannot control, that I forget to breathe. I wear anxiety and fear like a pair of prized earrings. I allow them to hang from me, alter my appearance, and adorn my person. I would like to think I have gotten better, but if anything, I have gotten worse.
 
How does one go about keeping a level head, anyway?
 
 

October 16 2017

Practice Makes Permanent

These previous twelve days have passed in a blurry haze of rawness, exhaustion, and giving it my all. Tomorrow, if everything goes according to plan, I will have completed my 40-hour mediation training and will have taken a huge step in the process/commitment of becoming a state-certified mediator. The entire journey seems a little daunting, but I feel like I am making steps in the right direction. One of the things I was recently discussing with friends is how someone with a chronic illness is always forward-focused. Not to say we don’t linger and get stuck on the past, but rather that we always plan and think with our future in mind.
To explain further, Jon and I recently bought a car. We have talked about it for months, almost a year, actually. We wanted something weather appropriate, full family seating capacity, decent gas mileage, and with more of a physical appeal than, say, a mini-van. Although we had talked ourselves around and around, I was afraid of committing. I tried to explain to him that I spend 90% of my life in fear that I will wake up at home and fall asleep in a hospital. I continued on to say that I worry about what a poorly timed flair would do to our already tenuous financial stability, I worry about losing my job, and I worry about the insurance company making good on their threats to discontinue my treatment.
Naturally, Jon didn’t get it. I wouldn’t say he didn’t understand, he just couldn’t relate…which is actually part of why we work so well together as a couple. He is fun and lively; he forces me to live life and take it less seriously. Alternatively, my side of the relationship coin is to show him stability and the strengths of being prepared.
To steer back to my original and very convoluted story, I am excited about mediation presently, but also in looking at how it could potentially shape my future. If things take a turn medically, or the treatment stops being effective, and I have to quit working, becoming a mediator will allow me to work intermittently. Maybe not enough to support a household, but enough to bring a little something to the table without feeling like the burden I imagine I would become.
Mediation is tough and it takes real work. It guts you, it is emotional, and it is raw. A topic that I have heard repeatedly is that as a mediator you are not striving for perfection, but a sense of ‘good enough.’ It was framed as, Practice makes permanent. It really got me thinking about how I treat myself. I have always been extremely hard on myself, never feeling good enough, and never feeling like I belonged. Good enough though? Absolutely. I am not the best Suzy Homemaker that I wish I could be for the kids, but I realized that as a mom, I am good enough.
I often think that Jon could have fallen in love with anyone, but that he stayed or settled with me. Yet, that “good enough” thing got me introspective. I am good enough.
I am good enough. I need to let that sink in. I am a good mom, a good wife, and I have a good life.
Maybe I am not perfect, hell maybe I never will be, but I am good enough and that is okay with me.