Pursuit of Healthyness

   "Be kind, for everyone you meet is fighting a hard battle." 

I think one of the greatest, most isolating, frustrations with fighting a UC flare is that most people around you are unaware of the extent of the battle you're in.

I just keep feeling like Will Smith - and not just because I look like Hitch when he has an allergic reaction, thanks to my steroids - but in 'Pursuit of Happyness', as Chris Gardner. 

Every day is a struggle for survival.

Each day takes more out than it gives.

Each day throws more at him that knocks him down.

Yet, each day, he gets back up.

Each day, he finds new resolve.

Each day, he determines to get to the other side.

All the while, those all around him - both in passing and those with whom he interacts regularly - seem to have no idea of the struggle. The daily struggle. The battle to even remain where he is, let alone get where he wants to be. 

That's where I've lived for the better part of this year. (Since Jan 8, to be exact.)

2016 - The year of survival.

When you're in a flare, people can see the days that you're a mess. 

They can see when you're an emotional wreck.

They can see you lose exorbitant amounts of weight.

They might even see the frustration and despair on your worst days.

But, they have no idea of the struggle.

Thankfully, after nearly 6 months of fighting it on my own (and losing), I've finally been afforded a reprieve from this latest flare. But, even my 'healing' has come at a cost.

And I just keep hearing (from well-intentioned folks) "Well, I sure am glad you're better now. We were worried about you. You look so much better now; you've got some weight back on you and some color to you... That's awesome."

And I want to say... "But, I'm still such a wreck."

But, I don't want to sound like a broken record. Or someone just looking for attention or sympathy.

Yes, I managed to pack on 20+ pounds in about 2 weeks' time. 

But, I don't have any more strenth to carry it than I had to carry the 87 pounds.

Yes, I've gotten a couple decent tans that make me look healthier.

But, that's just my skin.

Yes, the steroids have managed my inflammation (and I am SO glad).

But, they have also caused me to retain so much fluid in my legs that by the end of some days, I can barely make it up my stairs. And they've made me look and feel like the Michelin Man. With juvenile acne. 

This weekend, I've experienced sharp pulsing pains in my feet, ankles and knees. Not sure why. May be due to my extended lack of vitamins and minerals. Or the drugs. Who knows.

I've still got a heart that feels like it's going to pound out of my chest; especially at night when I lay down.

I still have little to no energy or stamina. I typically have to sit down and rest a minute each morning, at some point, while getting ready for the day. From sheer exhaustion. This morning, I had to sit down after my shower, simply because I stood in there just a minute too long.

My body undoubtedly began to break down my own muscle as a means of obtaining any energy it could. How I now build that back... I'm not sure.

So, yes, I am fatter. And tanner. And SO glad to be able to eat again.

But, the battle isn't over. 

I'm still surviving each day.

One day, I hope to reach the other side. 

Until then... please just know, that the struggle is real. Even when it's not evident.

71 days... But Who's Counting

 This is how long this current UC flare has lasted... so far.

And I'm tired.

Physically. 

Mentally.

Emotionally.

Spiritually.

Tired.

People don't realize what a toll an IBD flare can have on someone.

In fact, there's quite a bit that people don't realize about Crohn's / Colitis, unless they've had to endure it themselves.

So, in an effort to spread awareness and shed a little light on these diseases (and maybe garnish just a little sympathy)  :)  ...

How the Ulcerative Colitis journey looks for me (though everyone's journey looks a little different):

I have been dealing with this chronic disease since January, 2004. Twelve years.

Thankfully, the first 10 years, I had a good run of maintaining on drugs that kept it under control. Every couple of years, eventually each drug would run its course and no longer be effective, but then I was able to just change meds and each subsequent one would work. Yay!

Until Fall, 2013.

By this point, all that was left was the heavy-duty, costly biologics; Humira, Remicaid and the likes. 

I have not yet been sold on their effectiveness outweighing the risks and side effects, and even in the best case scenario, I'd still just be buying time until they lost their effectiveness as well.

So, that's when I decided to take treating my colon into my own hands and adhering to a very strict SCD / Paleo lifestyle.

And it's worked remarkably well.

For a time.

Unfortunately, it doesn't matter how diligent you are, you can still find yourself in a flare. It's just the nature of the beast.

I had a good run. Over a year, meds-free, with no flare.

Until January 8th of this year.

Even though I had my ups and downs with UC since my diagnosis 12 years ago, I never fully understood the battle until I had to continue fighting a flare on my own, where meds had failed.

I have been bleeding (from my colon) for the better part of 71 days.

I think, oftentimes, people liken IBD (Crohn's / Colitis) to IBS, and though they do deal with the same part of the body, they are entirely different beasts. IBD is not simply having an upset stomach, as most people are familiar with. IBD is like having one or more volcanoes in your gut that erupt unpredictably and unmercifully, and during a flare - quite consistently. And with each eruption, your gut cramps up and instead of molten lava... blood.

And, this may be a little TMI, but in the spirit of full-disclosure and awareness ~ Just like a volcano builds up pressure, so these fissures build up air, which results in great urgency.

I never fully understood this before. When I was first diagnosed and read online about people lobbying for potty passes and talking about having an extra set of clothes with them, I thought they were just being dramatic. Now I know for myself. All too well.

The struggle is real. And relentless. There have been times when the bathroom door at work, which closes hydraulically, just about took 2 seconds too long to close before I could lock it behind me.

And during a flare, you can have these 'eruptions' up to 20 times or more a day.

This much blood loss often leads to anemia in IBD patients. 

Thankfully, this time around, I decided to supplement with iron, which has helped me tremendously, just to be able to function and not fall out during the day.

However, people tend to forget or just don't realize, that just because you look okay, doesn't necessarily mean that you feel okay.

The iron may be helping me pull myself out of bed in the morning, but I am still incredibly wiped out. One trip up my flight of stairs at home makes me feel like I've done an entire leg workout. I had several heavy bags of groceries one night and dropped my keys on the ground and I just looked down at them, wanting to cry. It took all I had to bend down with the groceries, pick up my keys and actually stand back up, with everything in hand. I may as well have been asked to take 12 steps in a Navy Master Diver uniform alongside Cuba Gooding, Jr. 

IBD flares don't only affect your gut. 

Due to my colon not functioning properly, my body is not absorbing the nutrients it normally would, that I need. I supplement with vitamins, but am still extemely depleted.

I have had countless foot cramps in the last couple of months. Undoubtedly, due to my lack of magnesium and potassium. And I feel certain that I'd have more energy if I retained more Vitamin B. 

Sleep deprivation is very common when in a flare. And not for a lack of being tired.

I had a couple nights this week, where I hardly got any sleep at all.

Wednesday night, the eruptions had me up every hour, on the hour. Nine times in nine hours.

Thursday night, I was a bit luckier; only up every couple of hours.

Let's just say, I live for the weekends at this point, to where I can just rest. And sleep, if needed.

And in the midst of all of this... I still have to cook. Daily.

The absolute last thing I want to do, after dragging through another day at work, is grocery shop. And cook. And clean dishes. And empty / load the dishwasher. Ugh. Let alone preparing and eating the same 5 foods that I have consumed for the past 70 days.

I would love some good comfort food. I still have an appetite. And all the same foods still look and smell and sound good. I just can't have them. Instead, I get to cook / eat one of 5 things. Again. Hamburger, Chicken, Zucchini, Sweet Potato or Bacon & Eggs. Ugh. What I wouldn't give for a Chick-fil-A chicken biscuit or a pound cake.

All of this to say... Please, if you know someone with Crohn's or Colitis, be merciful. 

Try not to judge their car that's long overdue for a washing. Or their floors that are long overdue for vacuuming. 

Try not to take it personally if they're cranky or moody. If their looks could kill or if they cry at the drop of a hat.

Try to refrain from phrases like "What's wrong with you? - Oh, you're still dealing with that?" or "What do you mean, you can't go _______ ?" "Do you have to be so strict on your diet? Can't you just splurge every now and again?" and my favorites "I didn't get the donut I wanted" and "What - donuts aren't on your diet?" (What the heck kinda diet do you know of that allows donuts?!) I swear, by the gods, if I had more energy, I would lay some people out for some of the stuff they say.

But, that's just the UC talking.

 

Lessons in the Descent

Back in October, I discovered a few documentaries on Netflix concerning food. How what we eat really does affect our whole body more than most of us realize. I was just coming to the end of yet another flare with my Colitis and ready to try whatever I could to lessen the toll this stupid disease has on my body and hopefully avoid any further medicinal measures. Next up being bi-weekly injections of a drug that strips your entire immune system down. 

There's got to be a better way.

So, I spent the next several weeks spending every spare moment of my time scouring the internet, for information about any holistic options that were available out there. And I was SO encouraged! It was a great comfort and surprise to me, to come across so many folks out there who have actually been able to manage their UC simply with their diets. 

I was desperate and just determined enough to follow suit.

I purged my entire kitchen of all its glorious contents, save a bottle of olive oil and jar of cashews. Ordered a few cookbooks to further guide me. And I indulged in one last heavenly breakfast from Chick-fil-A. 

I went all in.

And I did pretty well, too. For the most part. I enjoy cooking, so though it was a challenge not to have my usual go-to items to work with, I was still able to enjoy many dinners at home. And a smoothie every morning was not all that bad. 

But then, just a few weeks into it, I felt overwhelmingly deprived. And incredibly frustrated.

I hit a wall.

Chicken broth for lunch while co-workers walk in with Wendy's bags. Passing up on all my favorite sides at a holiday get-together. Going out to lunch and coming away dissatisfied because although I had a perfectly fine meal, I couldn't get my 'usuals'... my favorites. Turning my Dad down for dinner because I couldn't take the blatant reminder of all my new restrictions. 

I broke down. Couldn't take anymore. 

The Wednesday before Thanksgiving, I had had enough and went to Publix after work and quite shamelessly purchased a family-sized bag of fried chicken, mac-and-cheese, a sack of Tastykake donuts  and a bottle of Moscato.

And it was good.

Man, was it good. And thus began my slippery descent back into all that was processed and Specific Carb / Paleo illegal.

From there, I just decided to 'ride the holidays out' and get a fresh start in the New Year. Like so many of us do every year. And, as such, have been completely gluttonous (funny, how that sounds so much like glutenous). All my favorites. Sausage and rice. Fajita nachos. Teriyaki Salmon. Lasagne. Donuts. Cheesecake.

And although I don't see the immediate repercussions, I know my body is paying a price. With every self-indulgent decision that I make.

Funny how weariness and a sense of deprivation can lead us away from what we know is the absolute best for us, isn't it? And leave us shamelessly wallowing in a place we don't belong?

And I can't help but notice the spiritual parallel in this struggle. 

It resonates all too clearly for me to miss.

Time to get determined once again.

But, you'd better pray for me. Those Tastykakes sure are good.