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.
 
 
 
 
 
 
 

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.
 

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 1 2017

Rise Above

I have dubbed this month an awful month. There are two concessions: a possible author meet-and-greet and a few days home with family. Otherwise, I am bracing myself for a long and exhausting whirlwind of a month. Week one and two consist of a typical Monday-Wednesday workday, a 7:30am-4:30pm/5-9pm Thursday, and a nine-hour Friday/Saturday. All of this is done with a two-hour-a-day commute. Week three consists of four 10-hour workdays with treatment scheduled Friday, and a 7-hour drive home. Hopefully now that I am on the increased dose, I won’t flat line during week seven (my flex week) and ruin everything; especially given that job performance (I was recently promoted) and a certificate licensing me to be a mediator is on the line.
Jon always asks me why I spread myself so thin, which often leaves me questioning myself: Why do I have an incessant need to be everything to everybody? The only thing I can think of as the answer is maybe if I do enough, say enough, be enough, nobody will see me. The real me.
So, I’ll keep digging and piling more stuff up, piling and piling until I am nothing more than a hand with a shovel. When you look at me, you won’t see the autoimmune. You won’t see the girl with dark circles under her eyes from lack of sleep, the girl who cries in the bathroom after puking, the girl crouched in the corner of the break-room staving off the pain with silent prayers. You won’t see the girl choking down pills or getting bloodwork done every other week.
No. When you look at me, all you’ll see is the piles.
I would like to think I prefer it that way. Keeping everyone at arm’s length has always been my coping mechanism. I believe it easy to romanticize what you don’t understand. As a kid I never felt like anyone believed in me, and in some small measure I know that I will always feel that way. The bad things people say are often the easiest things to postulate in any given sense. That said, I know that I will swim through hellfire to prove everyone wrong about me and with any luck, I’ll prove myself wrong, too. There is nobody in this world that deems me a failure more than me. Hell, my body practically demands it and my reflection offers little more than mockery to the contrary.
I won’t let it win though. The girl, the other me…the disease. I refuse to let them win. I refuse to let them whittle me down to medical charts and unfounded critic. Some days I think Jon and the boys are my hypothetical smelling salt, but that is an unfair burden to place on them. I have seen with my own eyes what that kind of guilt and responsibility can do to a person. It is too much, a Herculean task of epic proportions.
I don’t know how or when, but someday…someday I will rise above.

September 25 2017

Short Post/Update

Despite all of the bad days, the near constant pain, the undistinguishable and the distingishable symptoms, I have good days too. Usually when a good day comes my way I do not question it; instead I dive head first into a project or an activity, knowing full well that my carefully stacked wellness is a contingent life-like game of Jenga. Each exertion is done cognizant of the possibility that my good mood can shift. It is important for me to enjoy the good days but to do so with an open mind.

After a pain-filled week we decided to take the boys to the fair again. Somehow the fact that it was a Saturday and the final weekend didn’t occur to me. The whole day was a little frustrating. I woke up moody, but mostly in good spirits. I was experincing eye pain, but I wanted to give the boys some laughter and good memories.
When we arrived, the parking area was overflowing. The lines were incorrigable and there were so many people my anxiety went through the roof…especially when I pushed the stroller to the ticket window and looked back to see Jackson playing with someone’s discarded cigarette pack filled with the butts.
The bathroom lines were insane and I was way too warm, depsite the 60-degree weather. However, despite all of this, it was worth it. Any day that I can spend with my family is a good day. Standing with Jon’s arm around me as we watched the boys “carnival ride” with giant smiles was a sight well worth the aforementioned frustration. 

It is hard to have an invisible illness, to constantly have to explain why I look normal on the outside while complaining of anything but normal insides. It is a feeling carried by isolation and discontent. 

In other news, according to my recent blood work my liver enzymes are still high but my red cell count was low, even by my historic standards. I asked my infusion nurse why she wasn’t concerned and she stated that I am anemic. I have been iron anemic for as long as I can remember, my point was that I was complaining of blood loss and then my results came back lower than MY low. The nurse suggested a multi-vitamin with iron. I have no idea if I am supposed to notice a difference, but I have been taking it for a week now. I have also drastically decreased my caffeine intake. Something I am both happy about and deeply saddened by. With my schedule I basically survive on caffeine and inappropriate humor. Nobody has died in the last week but if I continue to wean myself off of caffeine, I make no promises of future body counts. 

September 20 2017

Proof is in the Pudding

The proof is in the pudding. Did you know that proverb actually has a second part to it? William Camden said “All the proof of a pudding is in the eating.” The full quote changes the meaning, but I like the original. To relate, all the proof of an invisible illness is in the experiencing.
Since you cannot experience this for yourself (not that I would wish that on anyone), I am going to paint you a picture. Bear with me if you can; I am about to show my underbelly.
Saturday I woke up with a headache. It happens; it sucks, but I’ve learned ways to handle it and move on. This headache though wasn’t going away. If anything, all of my attempts to alleviate the pain seemed to make it worse. It didn’t seem influenced by sound or light, it just hurt. A radiating pain of the searingly hot variety. I tried to hang but I was snappy and agitated. My brother took the kids so I could try and nap it off. Mind you, internally I was wondering if it had anything to do with my recent blood test/results. Then again, my internal mode is always set to “over-anxious anxiety.”
By the late evening I knew I needed to get up and handle my adult life, but what I did instead was move all of my stuff (Hydro Flask, blanket, Netflix DVD, and phone) from the bedroom to the downstairs couch. Which–for the record–I totally counted as a win. I was up, I was moving, and I was in relative proximity to my brood. Then my stomach started rolling. I felt feverish and the headache was still unrelenting. In the span of a few minutes, my temperature soared, as did my anxiety.
I climbed the stairs and managed to get to the toilet. However, all I could do was crouch down and cry; deep, can’t-breathe-screams-of-agony intermixed with wails of true debilitating despair. I had no idea what my intent was when I got up, but I was driven to move toward the bedroom and when I got there I collapsed on the bed, still screaming and crying. In the background I could hear the boys asking what was wrong with mommy.
I see Jon start to transition from no idea what is going on to action mode. He immediately starts asking me what is wrong, what hurts, and then telling me to take deep breaths. At this point, my entire body was on fire and my head was hurting so bad I was literally wishing it would just explode. My breaths were coming more aggressively making it harder for me to breathe. “Deep breath, deep breath, deep breath,” Jon just kept repeating it over and over, telling me I needed to breathe in and take slow breaths out.
It took a while. The snot was pouring down my face and mixing with my tears making it hard to see, but eventually Jon calmed me enough and I was able to explain that it hurt to breathe, my head was pounding and I couldn’t regulate my temperature.
Jon had me strip down and get into the purposefully freezing cold water of the shower. I was still in pain, probably screaming (and just as likely crying), so I hunkered down on all fours and just shook as the water beat down on my skin. At first the water was nice but then the coldness seeped into my bones, making me shiver in new ways. I tried heating the water but Jon turned it back to cold and told me to drink the cup of Pedialyte. My hair was sopping wet, my face was covered in snot, tears, and drool, and I was doing everything in my power to handle the shock my system was experiencing. I can’t tell you how short or long the “shower” lasted, but I can tell you it felt like an eternity. Jon helped me out of the tub, wrapped me in a towel and held me while I cried into his chest. He whispered, “I won’t let anything happen to you.” I know it sounds crazy, but I believed him. I knew, even while everything was happening, that he truly had only my best interest at heart. He is the one person in the world that has seen the deeply scarred and damaged parts of my soul and still wants to help heal the ugly.
You might think that’s the end of my episode; I mean really, how much can one person handle? But no. After I was dried off, Jon helped get me into bed. He said he shocked my system and I needed to let my core temperature return to normal naturally or all of that would have been for nothing, so I sipped at more Pedialyte (nasty-awful-salty-sweet drink) and tried to keep my shivering to a minimum. (Difficult to do with wet hair, no clothes and a fan on, but I was doing my best to let my body reset.) The headache was thumping terribly, but I was just happy to have stopped crying. Jon was dabbing at my head with a wet washcloth and mother-henning me in the best way possible.
Extreme dehydration sucks.
After my temp started to come back up, and the sips of water seemed to go down smoother, Jon laid down to sleep. Did I mention I hadn’t eaten much since dinner Friday night? Because, other than a few rolls, I don’t know that I ate anything. Which is only truly relevant when I talk about the puking. Oh my gosh, the puking. Basically, it was one extreme to the next, all the while my head was pounding away. It seemed the more I drank, the more I puked. If I took slow sips I would get too impatient with pain and worry and would try to over compensate.
All night, I sipped, I oiled, I medicated, and I even applied Icy-Hot. By morning, I knew Sunday would be a lost day and by that night I knew I would need to call out of work (something I try never to do). I think the part I am struggling with the most is that the kids had to witness the meltdown. I know they are young but I want them to stay young, stay innocent and full of life, spirit, and imagination. I don’t want my illness or my actions to take away from them the innocence of what childhood should be.
Can you relate? Can you see the image of what this illness is? If so, I am sorry.

September 13 2017

Pin Cushion Kayla

“How do you feel about this?”
Seems like an easy enough question, right? Maybe for some, but not for me. I have no idea how I feel–about anything–ever. In fact, I believe you would need to dig up Freud himself to figure out my idiosyncrasies. By now you’re probably wondering, what on earth I am talking about.
Friday afternoon I started having pain. Not the collapse-onto-the-floor-in-fetal-position pain, but the “maybe if I snap a rubber band or hunch slightly no one will notice my Kujo grimace” pain. In typical working-mother fashion, I pushed through. It was a Friday after all and I had the whole weekend to deal with it. The pain progressed most of the afternoon and far enough into the evening that I mentioned it (in a rather whiny form, if I do say so) to Jon. He said the right things and hugged me long enough that I felt infused with the ability to endure.
Saturday night, after a relatively calm day without the pain from the prior evening, I went to the bathroom. Blood. Lots of it. Enough that I asked Jon to come look. (For those who don’t know, Jon–to put it mildly–is a weak-stomached wimp when it comes to blood.) He asked if I wanted to go to urgent care. I knew he had to be up at 3 AM for work, but I also knew that if I wanted to go, If I wanted to load into the car, drive the hour-plus commute to the clinic, wait in the germy cesspool, get poked, prodded, and left wanting, he would.
While you are probably wondering why his work schedule crossed my mind… it was less of a factor and more of an excuse. Because if you need medical attention, you need medical attention, am I right? Don’t get me wrong, seeing the blood…seeing how much more there was than normal shook me. It made me break down into tears and clutch Jon while I mentally reverted back to my 13-year-old mindset. More then anything though, it made me angry. As I have mentioned before, one of the hardest parts to this illness isn’t the pain, it’s the mental/emotional stuff. I constantly feel like I need to prove myself–or rather my sickness–to others. To my doctors, to my co-workers, and even to my family.
This disease is one never-ending loop of Aesop’s fable, “The Boy Who Cried Wolf.” Sadly, there really isn’t anything I can do about it either; not any more than I already am. I know being upset about the things I am going through serves no purpose, but I also know that bad things happen when I keep all of my feelings inside. I want to be able to express my fears and emotions without having to look away or without crying.
Sunday had me in bed all day with a headache of migraine proportions, so I decided to send a portal to my Digestive Health Clinic asking for advice. Can you guess what they want? More blood work! Ever the pin cushion, I will be heading to the lab tomorrow. Side note, I wonder how much blood I have given over the years… heck over this year? I don’t really know what they are looking for, but hopefully it will result in some sort of light-bulb moment that will help with my on-again/off-again flairs. I could live without having another day like today.
When I told Jon what the clinic suggested he asked how I felt about it. Since life isn’t multiple choice, I guess I feel unsteady. I want there to be something wrong–even if it’s the smallest sliver of something–so I can feel validated; so I can scoff and groan about the time and energy I wasted. I also want this to be a flair, but I hate, HATE that as an answer. It isn’t acceptable anymore.
Wish me luck.

September 3 2017

Traffic Light

Much to my own aversion to the new meds, I started taking them Sunday night. That first night was extremely uncomfortable. A few minutes after taking the pill, I felt cumbersome; unyieldingly cemented in place. My mind was whirring away and I kept telling myself to move, to get up…but my body wouldn’t. I sat stagnant, swathed in a mental game of unrelenting resistance. I felt my eyelids grow heavy and still I forced myself to stay awake. I was playing an internal game of tennis; I wanted the meds to fail, didn’t I? Deep down I know life is a game of chess, not checkers. I can’t go into this disease looking for the easy answer.
It has been documented that getting too much sleep is almost as bad as not getting enough sleep. I do not know how accurate that is, but I definitely believe it after this week. I was taking the codeine as the doctor suggested, and even with my internal struggle against it, I have been getting a little over seven hours of sleep a night. Seven hours for me is almost unheard of; I have been living off of five, maybe six hours of broken sleep for years. Even with all of the extra sleep, I have felt more exhausted then ever.
Around the third day I started feeling off. Not bad-day off, but the-early-stages-of-depression off. I didn’t want to talk to anyone. Not family, not friends, not even co-workers. I was blasting whiny music insanely loud and still not hearing the words. I truly did not have a feeling or care in the world. It wasn’t until I found myself sitting in the dark atop our stairs with headphones on that I realized I might need to start paying attention.
I have had my varying mood swings over the years to which Jon is attuned…but this time even he was worried. Well, fake it until you make it, right? It took some effort and a long conversation with Jon, but I think I have finally crested the hill. I am hoping that it’ll be smooth sailing from here on out; especially since the meds seem to be helping. Sigh!
 
This pill struggle has reminded me of some stuff that I haven’t thought of in years. When I was a kid I had this fictitious boyfriend named Harry. He was the heir to the Bayer Aspirin throne. Yes, I really planned out my life with Harry Bayer-Aspirin.
I believed, as Cassandra Clare wrote, “to love was to destroy.”
I have since found the error in my adolescent way of thinking, but not without my own struggles. I lived in a world of books and fantasy. I imagined Harry would come to me, armed with bags of aspirin and offer to fix me. In those days, I had no clue what was wrong with me; no diagnosis, not even people who believed me. The doctors couldn’t figure it out and my parents wanted me to attend therapy. I felt alone. Despite my feelings, I was still young enough to believe in the magic of the world.
Before diagnosis I had this boldness about me, I felt like the world owed me something. Imagine that bucket of cold water to my ideals when the doctors finally figured it out.
A diagnosis changes nothing while changing everything at the same time.
In fact, it will change everything about you, if you let it. I fell prey to the change for years, but I am finally starting to sort it all out.
 
One of the times I was in the hospital I had a room with a view of a seemingly forgotten street. It was early March so the air was chilly and left visible plumes of white frosted puffs. In the center of my window frame sat a street light. For days I watched this abandoned road light turn from yellow, to red, to green. It was the only constant thought in my head; it was my first taste of metamorphosis. I go back to this memory from time to time, often when I’m scared or frustrated. The light is a symbol: even without cars, the light keeps changing. The world keeps going, and I should, too.