The Art of Finally Accepting a Prognosis and Relenting to Doctor’s Orders

It’s a humbling experience.
It being the realization that one can no longer be the sole decision-maker when it comes to one’s own health. To realize that it is time to relent and finally say “Okay, doctor, you win. We’ll do it your way.”
It’s especially humbling when this realization took three years and a whole lot of denial, in addition to being a stubborn pain in the neck with the professionals.

My previous treatments for my Crohn’s disease have not helped. In fact, my Crohn’s is worse than ever, and I have been suffering dangerous reactions from my medications. (Low white blood cell count, wacky liver enzymes, as well a slew of unfortunate side-effects like debilitating fatigue.) After learning the results of my most recent colonoscopy, endoscopy, and MR-enterography (my 3 strictures are significantly worse; my intestines are in a constant state of being partially blocked by undigested food; I’m at risk for growing a fistula, which is life-threatening; I will almost certainly need to get surgery after the active-inflammation in my intestines start settling down) my doctor said “I’m sorry to say it, but we’re going to have to twist your arm. You need to begin Remicade.”

And so, yesterday was my very first Remicade (infliximab) infusion treatment.
Since I was diagnosed with Crohn’s Disease in 2012, I have refused to be treated with Remicade. Why? Well, it’s a disgusting medication. It’s risky, extremely intrusive, has awful side-effects, puts your already-ailing body through a lot of stress, and it has the potential of fatal complications. It also makes pregnancy a very tricky proposition. But I don’t even want to get into that now. It’s an anti-TNF drug, (anti-tumour necrosis factor). Super short and concisely, from the Crohn’s and Colitis Foundation website, “[Remicade] is a chimeric monoclonal antibody. In other words, it’s a hybrid consisting of 75 percent human and 25 percent mouse protein sequence. It works by binding to and preventing the activity of TNF-alpha. It is given as a drip via intravenous infusion.”

Basically, I sit in a big comfy chair for 2-3 hours every two weeks (then eventually every eight weeks, depending on how my body responds), I get an IV stuck in my wrist, the medication drips into my veins, the nurse takes my vital signs and temperature every 30 minutes, and I read.

There’s clearly a lot more to it, but I can’t for the life of me muster up any motivation or enthusiasm to go into more detail.

Nothing wrong or abnormal happened to me during my first infusion. Obviously that’s very good, but unfortunately, a lot of people don’t exhibit adverse reactions until their second or third infusion. But so far so good.

Afterwards, I felt like I had been run over by a truck. I could barely lift my head for the rest of the day. Every bone in my body hurt, I was dizzy, and my head felt as though it weighed one thousand pounds. I was warned, however, that this is to be expected.

Today I am feeling significantly better than that, but still not great. My body aches, my head is throbbing, and I’m still quite exhausted. If I feel this way tomorrow, I have been told to alert my doctor. Here’s to a better day!

At this point in the game, I am just desperate to feel better. Being in so much pain every day is incredibly trying, physically (obviously) and also mentally. My moods suffer, and I feel like a terrible wife. I want to be better.

Oh how I hate to have nothing but sickly, complaining things to say. Oh how I just want to write about lovely things. And since I don’t have only lovely things to say, Oh how I wish I had some great big wonderful profound moral of the storySome clear-headed, uncomplicated, truthful, meaningful thought to express about what it means to be sick, what it means to relent to doctors, and what it means to try and live a life worth living, when it feels like you cannot.

Maybe I’ll think of something tomorrow.

 

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A Small Hiatus and Some Rather Cute Cat Photos (Plus a Shiny New Tea Kettle)

Hello Reader,
Things have been a little slow going around these parts lately. It is safe to say that March two thousand and fifteen will surely not go down in history as the best month I have ever lived. Hopefully it will be the only month in my existence that I can utter these words: Migraines are taking over my life! 

Is that enough said? I think it’s enough said.

Instead…let’s bring on the cat photos! Those are always welcome in my book.

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And as promised…New tea kettle! It suits us.0

I hope to write more very soon! Many things to be reported…

Blessings and a happy Saturday!

How Daylight Enlightens Me and MR-enterographies Enlighten Doctors About What’s Inside Me

Hello Reader.
With the exception of yesterday’s stormy weather here in Bellingham, these past several days have been as sunny and enchanting as anyone could ask for in early March.


And what does that do for our moods, you ask? Well, it makes us extra adventurous, of course. (Bear in mind, “adventurous” to Adam and me might probably have a different definition from yours. We are not bungee-jumpers in this household.)

Instead, we do things like try to suck every last bit of daylight out of the sky when Adam gets home from work. I think we still are recovering from living in Alaska (or at least I am, anyway) where daylight was scarce and sometimes literally non-existent.

Monday morning was my MR-enterography. It was very trying on my body and my mind. I spent the rest of the day recuperating, but when Adam got home, we decided it was high time that we saw some sun and got inspired by something.

And so, we loaded up Juvenaly in the car and embarked on one of our favorite activities: discovering cute old neighborhoods and oggling the houses and deciding which one we want to live in.

But before that, photo-shoot on the parking garage, yes?

Look at Juvenaly’s big rabbit feet. It kills me.

A quick intermission of boring stuff:
I’m still waiting on confirmation from my doctor, but it appears now that I have four strictures in my intestines instead of three. That there is some fierce scar tissue. Clearly this is not pleasing news, but we’ll know more after the rest of my procedures this month.

Also, I got another migraine. (And subsequently a chance to try out my new migraine meds. Result: Inconclusive and frustrating.)

Symptoms started Tuesday evening but I naively did not think it was going to turn into a migraine. I’m still learning about this migraine game. By the quite-early hours of Wednesday morning, I was desperately fumbling in the dark for the migraine pills. I was still essentially incapacitated until about 1:30pm or so, but it was definitely not the worst migraine I’ve had. It eventually turned into more of a dull pain, so I decided “Why not? Of course I should go to Pre-Sanctified Liturgy tonight at church.”

We were about halfway there (20 minutes into the drive) when I realized that I had perhaps made a terrible mistake. By the time Liturgy started, the pain was so bad and so debilitating; I don’t even know how to explain how I felt. A deep concern that I would be carted out of there in an ambulance? I was really scared, honestly.

(Have I mentioned lately that Adam is a saint for taking care of me?)

The point of all this: Who the heck knew that migraines existed. I mean, of course everyone knows what a migraine is and that people get them. But I had no understanding and no appreciation for what a migraine was until I started getting them myself. How is it that this is a thing for people? When it comes to my weakling body, migraines feel like the entire right side of my brain and neck are simply shattering. Completely breaking down. It’s terrifying and surreal. Using the charming term my mom suggested: I have now decided to be prayer warrior for every sick person and migraine-ridden person in the world. Just let me know, and I will wage a prayer war for you.

Intermission over and back to fun stuff.
Adam and I also spent a lovely Saturday afternoon browsing our local bookstore, Michael’s Books. It’s one of those huge used bookstores that looks like a tornado hit the place and that every book is a precarious domino that is about to cause the entire store to come falling to the ground.

That’s a tad exaggerated. But Adam and I love the place. They also have boxes and boxes of free books that sit outside the store everyday. That’s right; I said free.

We scored with these lovelies.

All but the top book were freebies. They have an endless supply of freebies, it seems, so we don’t feel too bad about leaving with five!

We don’t really know what A Touch of Danger is yet, but Adam insisted on it.

I’ve wanted to read The Elegance of the Hedgehog for a while now, so when I found it at Michael’s for cheap, it was a no-brainer-purchase. I’m about a third of the way through. It’s translated from the French, so it’s written kind of oddly. But in an amazing way. The language is so bizarre, so thoughtful, so whimsical, and often an enigma.

The story itself is incredibly cynical right now, and it’s all about social classes (which isn’t my favorite topic, but it’s French so I can forgive it. heh heh…). But I happen to know from a very good source (my librarian-mother who knows exactly what kind of books I like) that I will love this book. So I’m excited to see where it goes. I do enjoy it already.

So, to end this post in a way that it seems many bloggers do, I will leave you with this:

Currently Reading: The Elegance of the Hedgehog, also Jane Eyre (gosh darnit, I love it so much it hurts), and reading out loud to Adam as a bedtime story: Coraline (a favorite of mine, and I’m telling you, Adam suggested that I read it to him. I didn’t force it!)

Currently Listening to: a heck of a lot of Sharon Van Etten (click name for a great song!) and Frightened Rabbit (click name for another great song!)

Currently Watching: Let’s just say I am now obsessed with the film, The Hours. Let’s be real, this is probably going to get its own blog post, so I’ll leave it for now.
Also, Adam and I are still making our way through the Wes Anderson films (I only have 2 left to show him!), and the Hayao Miyazaki films. More on that later!

Happy Thursday! Many blessings to all.

On Avoiding the ER–and unrelatedly–Exposing Adam to the Works of Wes Anderson

Well Reader,

It’s been a difficult week of doctor appointments and other less-than-pleasant things.

Yesterday, we nearly went to the Emergency Room, but praise the Lord, my amazing gastro got involved and ordered me all the tests and x-rays needed (as well as prescribing meds) to keep us from spending the night in the ER.

I guess I should explain.

One of the many gifts my Crohn’s Disease has granted me are three strictures throughout my intestines. Basically, due to so much inflammation and excess scar tissue, three areas of my intestines have narrowed into such teeny openings that oftentimes, food cannot pass through. Many people wonder why I can’t eat things like berries, nuts, popcorn, most raw vegetables, etc. That’s why.

Sometimes, it seems that it doesn’t matter what I eat; this stricture blockage will still occur. The pain is unquestionable. When this starts happening, I know what it is. I also know that it will typically last up to 12 hours. My usual reprieve includes hospital check-ins and morphine through an IV. The pain is truly unbelievable and unbearable.

I also know what the doctors always tell me: You have to go to the ER when this happens to make sure nothing is rupturing.

And/or other less-than-ideal things.

Let’s speed things up a little bit…I contacted my gastro who saw me immediately and ordered x-rays and blood work to be analyzed stat. (No morphine though…sigh). I did not end up having a full-blown blockage. Praise the Lord (again). The pain was debilitating, but not as bad as I have experienced, and since I didn’t have a blockage, we managed to avoid the ER. By the eleventh hour of pain (10pm), it stopped. Thank God for a peaceful bedtime.

I describe the pain as “contractions”. Yesterday, for example, it would come about every 5 minutes, last for about five minutes, give me a 5-min break, and so on. It’s been my experience before that the “contractions” will start to get closer and closer together, and that is when it seems that morphine will indisputably be a part of my imminent future. Luckily, we didn’t get to that point yesterday.

Today, it is so peaceful. Like the aftermath of a storm, I say, acknowledging the cliche. My abdomen is quite sore, but really that is nothing at all.

I feel that’s enough medical-talk for today. I won’t bother going into detail about this past week’s appointments. I do feel I should mention that I have an MR-enterography on Monday. It is one of my least favorite things. I have to drink 3 bottles of barium and lie in a ridiculously claustrophobic machine for 45 minutes while I hold my breath to the beat of ear-splitting beeping. ‘Nuff said. Prayers always welcomed.

On a more exciting note:

Adam is finally seeing all of the Wes Anderson films! Huzzah!
Some have questioned how I am married to someone who has never seen even one of my dearly-esteemed Mr. Anderson’s movies. To that I say: Who cares. He’s seeing them now.

We are going in no particular order. We watch one, I witness his reaction and take it into account, and I then choose what I deem to be the next appropriate one to watch.

It has been exceedingly helpful to have this great place next door:

Some may say that I can look a tad like a tourist when we go on walks with my Instax camera. Said unnamed person mentions this fact with love. To which I respond “Well, Adam, what the heck else is this for?”

Anyway, Film is Truth is a really excellent local movie store in Bellingham. We’ve been frequenting that place like crazy lately. They also happen to have every Wes Anderson film ever made. I sadly only own The Darjeeling Limited and The Fantastic Mr. Fox, which may or may not be but probably are my favorites.

It may be possible that the reason I never insisted on Adam watching any of the Wes Anderson films before is because I kind of thought, just maybe that he wasn’t going to like them. Perhaps I was thinking that these films do not contain quite enough plot, and a bit too much whimsy, clay, and kind-of-unlikable-characters-who-still-manage-to-be-sort-of-likable for my dear husband.

Turns out, I was wrong. Drum roll. He does like them.

We have three films left for him to watch. This has been the order so far:

I tell you with a certain level of surprise that his favorite thus far has been Moonrise Kingdom. Who woulda thought that the one about the boy scout and the girl in the cute dress with the imaginary books would be his favorite?

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We’ve still got The Royal Tenenbaums, The Life Aquatic with Steve Zissou, and Bottle Rocket. We’re both kind of thinking he’ll like Steve Zissou the best. We’ll see.

We also rented one of Adam’s favorite movies since childhood, Princess Mononoke. Considering my absolute disinterest in anime, I wasn’t sure how I would feel about this. People have told me that I would like Spirited Away (same director), so I was definitely intrigued. Incredibly enough, I liked Princess Mononoke a lot. It certainly had it’s slightly-obnoxious, cartoony tendencies, and it was even a bit gory for my tastes, but it was made beautifully. I couldn’t believe how much I loved some of the scenes. They were really quite endearing.

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I think I’ll say goodbye for now. I’ve just realized that my hands are feeling rather like icicles, and this apartment has gotten much too cold AND quiet. Quiet? That’s suspicious. What is that little Juvenaly doing… (Honestly, quiet is good. The cat is probably finally sleeping and done terrorizing things. I better go find the sleepy thing and bury my face in his soft belly.)

I hope that everyone is having a beautiful day.
Until next time!

Sick Days, and Other Things I Grudgingly Write About

Hello dear ones,
Today I write as a form of discipline rather than pleasure. This has been a rough week (as many are), but it’s been seriously preventing me from finding much pleasure in my daily life. For that reason, I haven’t written much. But in reality, I feel it might be most important for me to write in these circumstances.

I have mentioned that I have Crohn’s Disease on this here blog, but I have not yet written much about it. I frankly do not like to talk about it, much less write about it. But here we are.

I am seeing multiple doctors right now; my main one is a gastroenterologist. With her, we are working through starting me on a new medication because my current one is not working and is in fact doing me (particularly my liver) more harm than good. I also get blood work done regularly, and I find myself suddenly under the orders of having even more procedures done and others things that I’ll write more about when the time comes.

I see my gastroenterologist tomorrow to further discuss the new medication. This one, Remicade, is one that I’ve tried to avoid from day one. It is quite an awful drug. It’s an infusion, so I’d have to go to the hospital every two months to have it given to me through an IV. I would be on very serious medical-watch because it can have many severe, sometimes fatal, side-effects.
But then again, the meds that I’m on right now have severe side-effects as well, which is why I have blood work regularly done. I guess what I am trying to say is that I am scared about this.

I saw my primary doctor yesterday. My gastroenterologist sent me back to her to deal with all of the excess “sick stuff” that I deal with due to my auto-immune disease. The main topic of this appointment was my chronic (daily) severe headaches, and my occasional, volatile migraines. We also spoke about many other issues, which, for the time being, I’d rather not delve into detail about.

Currently, I am taking an uncomfortable amount of drugs. Since I’ve been diagnosed, I’ve spent so much time trying to avoid drugs, and I now find myself taking more than I ever would have wanted. The fact of the matter is, I was getting nowhere without the western doctors. I was doing too much of my own scheming and planning and avoiding western drugs, but all the while my Crohn’s was worsening. Not to mention the fact that Crohn’s can have very critical repercussions if it goes untreated. Cancer, rheumatoid arthritis, osteoporosis, blood clots/strokes, bowel obstructions, fistulas, etc.

So in a sense, I’ve kind of surrendered and turned myself over to the doctors as of late. I’m still doing a lot of thinking, learning, and worrying, but even so, I am now far more apt to comply with doctor’s orders.

I am so sick of dealing with pain every day. I am so sick of hurting. I hate how it hurts and I cry and that Adam wants to fix it and he can’t. It makes me feel so selfish. I’m sick of how I never feel good and my moods show it. I wish I could be better for Adam. Pain and fatigue are my constant companions, and I fear they will never give me a moment’s rest until I am in remission. And I may just need Remicade to get there.

And really, I must admit to how much it hurts my pride to answer the question that I hear particularly often, since I live in a new place with new people: “So what do you do, Diana? … Do you work? … What do you do during the day?”

I used to try and dodge the question or make light of myself. I’d laugh and say “Not much!” or “I’m hoping to start working towards my degree again soon.” I got so sick of beating around the bush, and honestly, answering that way got so old, and I just felt embarrassed. Now, I don’t skip a beat with my answer. I’m brutally honest. I’ve come to the point where I tell people immediately: “I have Crohn’s Disease, and I don’t have it under control yet. Doctor appointments take up a lot of my time. And I really don’t have energy to do much right now.”

You know what they say: honesty is the best policy.

Well, there you have it. I haven’t gone in to much detail, but I have at the very least urged myself to write a brief summary of my current situation. It’s quite all right if you have a question for me, and I’d be more than happy to answer.

For now, I do my best to pray ceaselessly.

O Lord Jesus Christ, our Saviour, Physician of souls and bodies, who
didst become man and suffer death on the Cross for our salvation, and
through thy tender love and compassion didst heal all manner of sickness
and affliction; do thou O Lord, visit me in my suffering, and grant me
grace and strength to bear this sickness with which I am afflicted, with
Christian patience and submission to thy will, trusting in thy loving
kindness and tender mercy. Bless, I pray thee, the means used for my
recovery, and those who administer them. I know O Lord, that I justly
deserve any punishment inflicted upon me for I have so often offended
thee and sinned against thee, in thought, word, and deed. Therefore, I
humbly pray thee, look upon my weakness, and deal not with me after my
sins, but according to the multitude of thy mercies. Have compassion on
me, and let mercy and justice meet; and deliver me from this sickness
and suffering I am undergoing. Grant that my sickness may be the means
of my true repentance and amendment of my life according to thy will,
that I may spend the rest of my days in thy love and fear: that my soul,
being helped by thy grace and sanctified by thy Holy Mysteries, may be
prepared for its passage to the Eternal Life, and there, in the company
of thy blessed Saints, may praise and glorify thee with thy Eternal
Father and Life-giving Spirit. Amen.

And I thank God for his holy, wonderworking saints, the unmercenary physicians, Saints Panteleimon, Cosmas, and Damian, and I ask them to pray to God for me and my soul and body.

Adam got me this icon of Saints Cosmas, Panteleimon, and Damian for Christmas. It is one of the greatest gifts I have ever received. It is so beautiful, and it has helped me to feel closer to these three saints than ever before. Icons are also called “windows into Heaven.” Humans are visual creatures, and even though the saints are always with us, having an icon which was painted (“written” is what it’s actually called) in reverance depicting the saints helps us to realize how near they are. Standing in front of icons are truly like taking a peak into Heaven. Glory to God for all things!

Wishing you all a happy Tuesday. And a blessed Clean Week to my Orthodox friends!