Food for Thought

I have to say my most recent struggle has been with FOOD! My last flare of symptoms, which I spoke about in my post Mind Over Matter, was most likely an obstruction due to me eating some pistachios. Yep, you heard me…pistachios! *sigh* Sometimes I just have to pause and take in the full ridiculousness of my situation. Anyways, since then I’ve honestly lost interest in eating. I know I NEED to eat to survive and I do want to eat– but I would rather eat things that taste good and make me happy, but I can’t. I would be happy with something delicious and nutritious as well, but those options are very limited on a low residue low fiber diet. And since my flare I’m being extra careful about sticking close to that diet. This has honestly been a real source of frustration and anxiety for me lately. I’d rather just drink liquids and do smoothies.

I gotta say this is a new one for me! I’ve never had issues with food in my life until now. With the low fiber low residue diet, you can pretty much assume if it’s healthy for a normal person to eat it, you shouldn’t eat it! No fruits or veggies with skins or seeds, no nuts, no whole grains! Yet junk foods don’t really lump into a category, so “technically” it’s allowed. Well that is only because its likely fake or processed stuff. But at least it tastes good right?! This diet is incredibly counter intuitive and a real struggle for me lately!

I’m learning our emotions are heavily tied up with what we consume. I don’t think many people realize just how much our minds connect enjoyment with food. I certainly didn’t until recently. Think about it—we associate many memories with particular foods because our minds connect the dots between our 5 senses and imprint that on our brain. The term “comfort food” says it all. Everyone has a food that brings them comfort, but it’s different for us all. Frozen coffee drinks take me to my mental happy place. Popcorn has always been my favorite snack food because well it goes hand it hand with my love of movies! Deviled eggs remind me of family holidays and a fond memory of my mom teaching me how to make them for the first time. Hotdogs remind me of 4th of July cook-outs and fireworks. Foods invoke emotions when consumed. The problem is that the enjoyment gets lost when diet and nutrition are restricted and that leads to depressing feelings since we can’t consume what makes us happy or tastes good. Or honestly even what our body might need! I never realized that I would associate negative feelings with eating.

I hate feeling like I have to eat just to survive. Having to pick & choose and think through what I’m allowed to eat day-in and day-out, never eating too much of the same thing, always keeping things varied up. POOF–there goes the fun! When it becomes such a big chore just to figure out what you can eat, you just don’t wanna do it anymore! I dread the task of meal planning each day. It’s depressing to know you have to eat foods you don’t want to, just to get something in your system and sustain yourself. I strongly feel like that is just no way to live. Maybe it’s worse because i know there are better foods out there and I would rather eat those. So perhaps I have some coping to do and my anxiety over this will go away. I don’t know! I certainly hope it gets better down the road! But for now, this is my hurdle.

So the question is, why should the enjoyment get sucked out of this part of our life too? Don’t we already have enough problems to deal with?! I feel like there has to be an answer here that I just haven’t found yet. I will continue to look for a solution to this dilemma but in the mean time…

If you have experienced this struggle and have some ideas on how to follow a safe low residue diet, with little frustration, and still enjoy eating your foods–Please share by commenting or emailing me through my contact form to the left!

What’s it like?

Today is #WorldIBDDay and I wanted to do something a little different to raise awareness for this disease. I know a lot of us that have IBD wish that others understood what we go through on the inside, that you can’t see. I hear this a lot throughout the online community. So I thought today I would address this head on, from my point of view—

What is it like living with Crohn’s Disease? 

It’s waking up every day knowing you have to make this one REALLY count!

It’s planning out the best use of your time because you have very limited energies each day and they deplete rapidly.

It’s a mental weight you carry around that never goes away.

It’s a constant reminder of your mortality.

It’s completely unpredictable!

It’s knowing you will be managing this disease for the rest of your life because there is no cure yet.

It’s never knowing when your symptoms will hit and sometimes living in fear or anxiety because of that fact.

It’s redefining your idea of “normal”

It’s being okay with just existing some days, nothing more.

It’s coming to grips with the fact that the carefree days are over.

It’s pain that cripples you.

It’s numerous medications that need to be taken daily, all with different conditions on how, when, and with what they need to be taken.

It feels like the loss of choice and a loss of control over your life.

It’s actively deciding to carry on, despite all the challenges you encounter on a daily basis.

It’s finding a new will to live.

It’s being overly grateful for those very few healthy days you get.

It’s battling for your own healthcare!

It’s knowing all the nurses, receptionists and doctors by their first names at multiple medical facilities!

It’s being forced to face your fears, multiple times!

It’s realizing that we are never really in control, we only think we are.

It’s actively looking for the light amongst the darkness.

It’s grieving for the loss of your old life.

It’s finding a way to laugh so you don’t cry.

It’s a constant reality check, every minute of every day.

It’s a buzzkill!

It’s appreciating the smaller things in life and knowing they can also be the most meaningful things too.

Fellow Crohnies, based off your experiences–How would you describe living with Crohn’s disease? What is it like for you? I would love to compile another blog post with all of YOUR descriptions featured!

On The Other Side

 

Recently, my beautiful sister shared this video on Facebook and it just really hit home with me.

Will Smith has experienced exactly what we all go through on our chronic journey–BEING FEARLESS!! The only difference is unfortunately we kinda have no choice, right? We are forced to face our fears more often than the average person. Since I was diagnosed I have already had to face 3 of my biggest fears–needles, major surgery and extreme pain!

Fearless doesn’t mean the absence of fear. It means feeling that fear and doing it anyway! FACE the fear! It’s not going to be easy, but we ARE strong and we can get through it. Will Smith is truly onto something when he says “in maximum danger, we have minimal fear”. Once you have experienced the worst pain of your life and come out the other side—your fear is lessened, each time. I have been into the hospital twice with the most excruciating stomach pain imaginable. And both times I came out the other side, and OMG it really is BLISS when you finally get that good day and you are feeling healthy again!! It is the best feeling in the world! You feel like you are given life again. I really can’t think of any other description for it. That’s why we can easily appreciate what most others take for granted– having a job, eating a normal meal, active social lives, normal sleep patterns or just dancing around the house like a fool!! Because we don’t get many days where we experience these things! When you have to go through all those struggles to get to the good days, you cherish them so much more!

We kinda live our whole lives on the threshold of danger, am I right? I certainly feel that way. I mean just looking at the list of high risk side effects that come along with my Crohn’s medication…. DANGER Will Robinson!!! Now of course in Will’s case of sky diving, the result was an amazing fun flying experience. Yes, there is a possibility he could die skydiving but he is safe. With our lives it is obviously a little different. We aren’t having anxiety over a fun experience lol! Quite the opposite! Every time we experience a flare of symptoms, our natural reaction is to fear what is to come! I still get terrified every time I think I am going back into the hospital. The point is that it does no good–whatever happens is going to happen anyways. Worrying your head off about it, isn’t going to make it BETTER! It can only contribute to making it worse. So why put yourself through that? {I talk about this in my other blog post Mind Over Matter as well}

I don’t know about you, but here is what goes through my mind when my symptoms are at a severe point— “I’m going to die! This it it for me! I’m dying!” Each time I was in the ER for severe stomach pain coupled with endless vomiting, I absolutely felt like I was being tortured and that I was going to die. And in that feeling, my brain eventually just let go of anxiety. At that point, I was IN IT! I was free-falling from the plane like Will Smith. Nothing was in my control, so whatever was gonna happen, so be it! I mean you are already in the air, you are either gonna land on your feet or not! No in-between!

The truth is–it is really rare for someone to die from Crohn’s disease. That is a fact! {I’ve actually looked it up on the Crohn’s and Colitis Foundation website, to ease my mind in the past. click here for the Nitty Gritty} Yes, it does feel like you are dying when it is happening, but if you stick it out and hold onto that amazing feeling that you KNOW is coming when you reach the other side of it—it is BEYOND worth it! If you are reading this right now from home or in the hospital, feeling really scared about what is to come, wherever you are in your stage of diagnosis—I want you to know– You CAN get through this!!! You WILL be okay, so put that fear aside!! Will Smith is right, the best things in life are on the other side of terror! I’ve been there, so I know firsthand it is true! Pure bliss awaits you on the other side of this bad day that you are having right now–so fight your fear and I’ll see you on the other side!

I hope this inspires you to drop your worries and just take everything as it comes. Because once you do, you can really ENJOY the things that matter most to you and soak up every second of them!

Mind Over Matter

It’s been a long, slow couple days– feeling nauseous and unable to move much. I couldn’t eat any real solid food for two days. I’ve just been taking it easy on my system with liquids and a few BRAT diet items only. I feel pain on both sides of my abdomen that throbs with discomfort. I can hear my stomach isn’t happy by the churning noises its making. It was so bad yesterday it was borderline worthy of a trip to the ER. And I genuinely believe had I not been taking my medication regularly, my symptoms would have been much much worse! Phew!

This is exactly when my brain wants to go into panic mode. Having dealt with this disease for 2 years now, I know what could possibly come next, and I DON’T WANT IT!! I don’t want to end up in the hospital with excruciating stomach pain again. So it’s now that I REALLY need to calm my mind so that I don’t make my situation any worse by stressing over it, and creating anxiety.

Since I am in the thick of these symptoms right now, I want to share with you what I do to get through this, with LESS anxiety and LESS stress. Because those two things can and will make your symptoms worse! There is such a connection between mind and gut, but that is a blog post for another day, lol! I have listed below a couple things that I personally find effective and I have used these tips during the last 3 days to de-stress while flaring!

1–REASON with yourself! Are your fears actually legitimate? Or is your mind jumping to the worst case scenario? Find a phrase that works for you and repeat it to yourself. When I feel my mind going into panic or fear mode, I say to myself. “Jana, It is what it is! There is no sense stressing over it. Whatever happens we will get through it and deal with it as things come. This is not a permanent state! This too shall pass.” I had to say this to myself the other night, when I was thinking I might have to go into the hospital! Not gonna lie, there were tears involved, that’s how scared I was. But reasoning with myself calmed me down and my emotions subsided. Sometimes my husband has to reason with me too! But when I’m honest with myself, I know from my own past experiences that truly it will be okay. It can feel like things will never get better when you are in the midst of it, but it does get better! I know this to be true! If I have to make a trip to the ER, so be it. I’ve done it before multiple times and I can do it again! I’ve already been through SO much on my short journey with this disease, I know I can face what lies ahead.

2–Find an OUTLET for your mind! If your mind is causing you too much added stress, keep it busy! I will play video games, do some coloring, play with my Origami Owl jewelry and come up with some new locket designs! Just something that requires my minds attention, so it can’t wander and think about everything that is going on with my body. {Coloring actually really relaxes me, always has since I was kid! And those new adult coloring books are fun, it’s more precision work so it does focus your mind.} My husband and I like to build legos too, that can be fun to entertain the mind as well! {Yes! We are big geeks, so all my suggestions are gonna be along those lines, ha ha ha! But you get the drift, if you have a hobby that you can do sitting around the house, do it! Paint, write, watch some movies!}

3–Breathe Through It! Sometimes the pain or nausea just hits you and you freak out! You can’t help it! You are just scared of what is it come. When I feel that happening, I just literally take a couple deep breaths and exhale slowly through my mouth each time. It truly has a relaxing effect. Tuesday, the nausea was so bad I had to physically walk slower and just take a moment to breathe through it. I acknowledged how I felt, but didn’t freak about it! Whatever happens, happens. There is no need to work yourself up.

I have found through my own journey so far, that calming the mind is really half of the battle. If you spend time to work on your mind, you will notice that it’s ONE LESS THING for you to worry about! When you aren’t worrying about worrying, you can focus your energy on healing instead! And we all know that energy is heavily depleted for us, especially when we are flaring.

~ All that being said, I want to reiterate that I am very proactive in my own health and I am in constant contact with my team of doctors and my gastro nurse. They know what is going on with me at all times and educate me on the right course of action. I strongly suggest that anyone having a flare of symptoms be in contact with their doctor or nurse as well. This disease is different for each individual so please be safe and consult a medical professional! ~

 

How are you doing?

Okay am I the only one that NEVER knows how to answer that question?!


“How have you been feeling?”
Ha ha HAAAA!!!! Well…… The first place my brain goes to is an honest place, but since having Crohn’s disease….eeeeeehhhhhh. Maybe not the best idea! It’s considered uncouth to talk about poop in polite conversation. But a lot of my world revolves around the toilet, it is just a fact. Just yesterday my husband said “Did you see the gifts I left for you? I restocked the toilet paper and got more hand soap!” I of course responded with “Omg you know how to talk sexy to me!” Ha ha ha! {Sad but true–It did make my day that I didn’t have to worry about doing those chores myself. I’m sure you can relate!} There is also the intense emotional challenges that come with having a chronic illness that would just be awkward as hell to bring up in conversation, am I right? “Well ya know, I’ve been feeling like a waste of human space lately because I can barely move much less go to work.” Super buzzkill right?!? Who wants to hear that? But hey they asked! Yeah…I don’t know if that flies, ha ha ha! This is probably why I have never understood polite conversation. Polite and truth don’t always mix. But why ask if you don’t honestly want to know how the person is doing? And polite convo usually happens in passing at the grocery store or whatnot. Not exactly the place to get into your life story I suppose, ha ha ha!

Now–In all seriousness, how are we supposed to respond?  I feel like to truthfully answer that question “How are you doing?”, it would be a very long complicated answer every single time! For me, it’s never just a simple “Oh I’m doing great!” Oh honey, my life is just not that straightforward! Ha ha ha! I will never pretend that my life is perfect because that does no one any favors. However, what usually ends up coming out of my mouth is “I’m doing okay.” Or my most recent favorite “Well, I’m still alive!!” It is true and It is just easier than explaining how much life sucks that day! And I find it keeps me sane if I keep my sense of humor especially when it’s a bad day. And I think if they heard how I was really doing… they would run in terror! LOL, funny because it’s true!

I recently went to a convention where the speaker told us that we should always respond with “Unbelievable!!!” or “Amazing!!” when someone asks us how we are doing. Their reasoning was because it’s positive and it is refreshing to hear such an enthusiastic response. I see where they are coming from, but I disagree! To me what is refreshing, is honesty! When I ask someone how they are doing, I genuinely want to know what is going on with them. Just saying I’m amazing, whether I mean it or not, seems disingenuous or just fake. You aren’t going to make any connections with people by doing that and it’s just not how I roll.

Being raised in the South, I do have polite conversation drilled into me, so it is hard to part from that. However, every time some one asks me that dreaded question–I still freeze for a little not knowing how to answer! To be polite or to be truthful?? What to do! Ha ha ha!

How would you respond to the question– “How have you been feeling?”
 I want to hear your witty replies! The funnier the better!

It’s not pretty, but who cares?!

So, I have Crohn’s disease and it’s not pretty. There is nothing glamorous about having to spend most of your time in the bathroom praying to the ‘porcelain gods’. But it is a reality for me. I have to share some very intimate details about my body and my life with my doctors, get lots of tests done like ultra sounds, cat scans, MRI’s and colonoscopies… I mean seriously, thrilling stuff!! Lol. Needless to say, not much privacy there. But just because Crohn’s disease (CD) isn’t “pretty”, does that mean we shouldn’t talk about it? No– I don’t think any of us should be ashamed to talk about this disease and what it does to our bodies or our personal lives.

I’ve come to learn over the past couple years, that a majority of people, know very little about what CD is because no one is talking about it. The awareness goes as far as the name of the disease and then it really stops there. About 90% of the people I talk to know someone with this disease, but know nothing of what their friends, family members, or co-workers are REALLY going through. I myself, before being diagnosed, had “heard” of Crohn’s, but I didn’t know exactly what its effects were. I wasn’t prepared for what was going to happen to me, emotionally and physically.

I think we need to start talking about what we are going through– what exactly it’s like to be diagnosed with an incurable disease. If not for the sake of awareness, then for our own therapeutic purposes.

I obviously want to raise awareness for CD, I just feel like it is something I need to do. I know there are many people that misunderstand how serious CD is, including some patients even! I want to change that! Some still think, “Oh, but there are treatments for Crohn’s disease!” Yes, there are treatments, but there isn’t a CURE!! Not yet! Meaning there isn’t anything to stop this disease from flaring over and over again through our lifetime. It isn’t dissimilar from cancer. In fact, I am usually sitting right next to someone getting chemotherapy when I get my own infusions. Treatments, don’t necessarily make this disease something easy to live with. Actually it is quite the opposite, treatments usually cause a plethora of unwanted side effects, are high risk, don’t work or just decide to stop working! Nothing really easy about any of this unfortunately! So I want to share as much as I can about my own experiences to spread awareness and help others understand what we are going through!

Why should YOU talk about it though? Maybe next time you have to call off work, your boss will be a little more understanding knowing you are dealing with a chronic illness that is unpredictable. Or perhaps when you can’t make it to family dinner, you won’t get a guilt trip from your siblings or parents, as they know you are suffering. Maybe your spouse won’t judge why you have to get 10 hours of sleep every night! Ha ha ha–I said ‘maybe’!! Or maybe, your friends won’t take offense when you can’t go out to eat, because unfortunately you have to drink your meals while symptoms are flaring, lol!

So why not? Let’s speak up! Every time I talk about what I’m going through I feel like the disease has less of a hold on me. I’ve noticed the more I share, the more others do too! Nothing makes me happier than to see that happen! Once we have a conversation going, we have a support network! There is nothing more reassuring than just knowing you aren’t alone in this. It always puts my mind at ease when I hear someone else’s journey with CD, because I know they are facing the same challenges as me or worse. If they can do it, I can do it! And if I can do it, YOU can do it! If you can do it, so can your Aunt, niece, father or best friend!

I don’t want it!

The true nature of an invisible illness. She looks fine, but inside lies a battle of epic proportions.

Once I received the news of my diagnosis, my life view began to change. The disease was turning my life into something I didn’t want to live and me into someone I didn’t want to be. I had to call off work many times due to sickness. I was missing a lot of family gatherings and social outings with friends. I spent a lot of time at home just trying to deal with all the symptoms and side effects that each new day would bring! I was experiencing anxiety about just leaving the house for fear I would need a bathroom and not be able to make it to one. But what bothers me the most– I couldn’t keep my commitments or do the things I enjoyed doing. I’m a very independent, self-sufficient person to begin with and I value sticking to my word. HA! Enter Crohn’s, ready to teach me a life lesson– I’m not in control! (Anyone else feel like, as soon as they say they are going to do something, the universe immediately aligns so that you can’t do it? lol Or is it just me?)

Needless to say, Crohn’s was making me focus my attention on all things medical. Leaving little room for anything else. That can get really depressing really fast. (One of the reasons you will hear me talk a lot about keeping enjoyment.)

A memory that really sticks out for me–I remember looking into the bathroom mirror one day at work and I didn’t recognize who was looking back at me! I didn’t recognize myself at all, in fact, I was sure I was seeing someone else. My color was gone, cheeks shrunken in, and deep dark circles under my eyes. I looked like death! It felt like I was dying before my very own eyes and there was nothing I could do but watch! Almost an ‘out of body’-like experience. It was horrifying!

Truthfully, all I could think was, this isn’t what I asked for! This isn’t what I wanted my life to be like! Even when I was in the hospital, both times, with the most excruciating stomach pain ever, I remember saying out loud “I don’t want it! Make it go away!” Looking back, I laugh! As if for some reason, saying the words “I don’t want it!” really would make a difference. Psshh!! Like the inflammation in my body cares what I want!? Lol Silly Jana! But I realize now…those are fighting words! As long as I am saying “I don’t want it!” I know there is still fight in me and I intend on giving this disease a run for its money! Ha ha ha, as silly as that is! That’s all it takes is that one little ounce of fight in ya! 

So, I began spending all of my free time researching Crohn’s Disease so I could understand as much as possible about what was happening to my body and in turn, my mind. I wanted to learn everything I could in hopes of having a better quality of life! I used the CCFA (Crohn’s and Colitis Foundation) website as my go-to resource for everything as my doctor suggested. I requested all their materials on treatments, diet, etc. and I joined their online support group to hear from others about their experiences.

I saw something I didn’t want to see in the mirror that day and it was terrifying! But it took that scare and it took all that pain I’ve been through to get me where I am now. Its those moments that motivated me to seek knowledge about my disease and support! It also motivated me to be a more active participant in my own healthcare. I would call the nurse when I was experiencing symptoms or side effects and we would address the issue head on! I began working with my team of doctors, keeping everyone in the loop about my condition. And it’s the best thing I could have done for my health and my peace of mind too!

This disease may take us through a really rocky ride– depths of depression, breaking points of pain, it’ll even make you face your fears. I truly believe that it’s only during those ‘lows’ that we find our strength time and time again. So next time you feel those familiar feelings of sadness and disappointment that come with a flare, say to yourself “I don’t want it!”. You might laugh! Lol, which is good! But you might also find your fight! And that is something I wish for all of us! To keep fighting and pushing for that better quality of life that we all deserve!

This story was published on The Mighty.
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