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Making Some Tweaks

My mission around here is to help fellow IBD patients, whether that is through tangible tips or validation by sharing my own struggles with Crohn’s disease. I was never looking for pity, sympathy, or sad faces for what I’ve been going through. And I feel like I’ve gotten a great deal of that. I understand that I have a lot of friends and family who check out my blog for updates, so I know it comes from a place of caring about me. But at the same time, I want to make my purpose very clear here, this blog was started to help others. So, I’ve decided I need to go back through my work here on the blog and better hone in on my intentions with each post and better organize my work.

In short, I am George Lucas-ing the shit out of this blog! I will be making tweaks here and there and everywhere! Some of those tweaks will include bringing more of my personality into my writing. Warning!! That may include cuss words from time to time. You’ve been warned, right here and now, if that offends you!

Thanks to all of you for reading and showing an interest regardless of why you are here! Means a lot that you take the time to read my words!

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Remission & Denial

Well, I’m in clinical remission y’all. No active inflammation in my gut. I still have the stricture, so I do have symptoms related to that, but all pretty minimal right now. All things considered, I’m doing really well! The best I’ve been in years. I’m doing more things I enjoy, I’m earning a little money with my dogwalking/sitting work and I’m able to help out around the house like normal again. Yay! I’m finally able to contribute to the housework again! I never thought I’d hear myself so excited about doing house chores, but it does feel good to pull my own weight around here once again!

The only problem is… as things have gotten better and better with my Crohn’s disease, I’ve been feeling more and more denial creep in. Surprisingly it’s pretty easy to forget that you have a disease, when things are going good. That can be good and it can be really bad too. Remission can fool you because it doesn’t last forever. It lasts for right now. And you never know how long that period of time will be… weeks, months, years… no one knows.

I don’t want to live in denial and just pretend that nothing is wrong when I’m in remission.

Talking & Listening

I’ve noticed as I’ve been feeling better, I don’t want to talk about the disease as much. And I have to get out of that mindset. It’s honestly why I haven’t blogged in such a long while and I feel really bad about it. If I don’t talk or write about my inflammatory bowel disease, it isn’t real. I can pretend that I’m not living with a chronic illness anymore… at least while my remission lasts. But I don’t know if that is healthy. I want to continue to educate others through my journey, remission or sickness. It’s all part of the journey. I can’t do that if I’m not talking and not blogging about it.

I’m not proud of myself for living in denial these last several months. Running my local support group usually keeps me pretty centered and humbled. I get to see and hear about the many effects of this disease up close and personal. But it can be difficult to listen to all the struggles when I myself am doing well. So much so, that I’ve considered canceling the group meetings and moving on with my life.

I gotta say I never saw that one coming. I can understand feeling like I don’t need the support because I’m doing great, even though I know that isn’t true. But I never thought I’d want to deny the reality of this disease, just because I’m in remission. It feels selfish and completely unreasonable.

Dear Brain, It’s also important to help others suffering with IBD. Support is needed through the good times and the bad times. That’s why it’s called ongoing support. So, we will continue to listen & share!

Ignorance is Bliss, Isn’t it?

I’ve tried eating trigger foods recently too, just to see if they still cause me issues. Some things I can eat now without a problem. However, that just adds to the denial; thinking I can eat what I want without reprecussions.

This disease is uncertain. It’s unpredictable and deep down I know I should always keep that in mind. I’m not in control, my body could decide at any moment that it wants to act up and I’d be at its mercy. Yet, I can feel my brain wanting to ignore all of this logic, because it thinks ignorance is bliss. It’s like my brain says “I don’t want to hear about what could go wrong, when things are going right. Can’t we just go on our merry way and enjoy the good while we’ve got it. Why do we need to hear about the bad things?”.

Dear Brain… life isn’t that simple. It’s smart to know what could and couldn’t happen with this disease. Pretending like there is nothing wrong will only harm us in the long run. In this case ignorance is not bliss. Knowing is wise.

I’m not sick

I recall my grandmother always struggling with taking her medicine because she didn’t think she needed it. She had a different illness, but I fear living in denial could lead to that kind of thinking, period. The general population takes medication only when they are sick, not when they are well. Unfortunately, I need to stay on my treatment even during remission, to better my chance of staying in remission and keeping the disease at bay.

We can’t see inside our gut and we can’t always feel what’s going on, so we need to keep up with the disease management, and that means all the time. I don’t want the denial to get to that point where I feel like medicine isn’t needed because that would surely be detrimental. I’m already stuck with a stricture for the rest of my life. I don’t want things to get worse.

Are we wired a certain way?

I think I’m beginning to see that our minds are wired a certain way. At least, mine. IBD is one of those “out of the norm” things that leaves our brains puzzled because it doesn’t 100% fit into the category of sick or healthy. I believe our brains are wired to think in very simple terms. “When I feel bad, I’m sick. When I feel good, I’m healthy.” Yeah… it’s almost funny how much IBD doesn’t fit into that line of thinking. Talk about a complicated mess of a disease! Sheesh! Chronic Illness fits somewhere in the middle between healthy and slowly dying, and it lives there in a very gray area. It will never be simple. That you can rely on!

So, I guess in the future I just need to be more aware of how my brain tends to think things through. It’s part of the coping process for the mind. The brain tries to put things into categories it understands, and Crohn’s disease just doesn’t easily fit into anything. But it’s all just a normal response to an abnormal life.

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What does your Best Self look like?

Everyone, regardless of being healthy or not, wants to put their best self out there. On social media all you see are pictures of smiling faces and perfect white teeth, makeup to hide the imperfections, etc.

I think it’s only natural to want to look and be at our best. Especially when it comes to public settings. But what do you do when you can’t put your best foot forward every day?

What can you do when putting your best, optimal self out there is NOT an option? Like, NEVER an option or even listed as a possibility.

Below average is all you get, at different and varying degrees- each day- and you never know what the day will bring. What do you do?

Do you risk weird looks from strangers at the grocery store? Do you avoid the public as often as you can? Is it worth it to push yourself to look “presentable” when you don’t have any energy and risk the consequences later? Or do you just say “Oh well, this is what I’ve got to deal with today, we gotta get stuff done regardless!”?

My idea of being at your BEST looks like this – – It is easier to tackle the days challenges at home or at work because you look and feel well. You have a clear mind to accomplish tasks, so you are productive. You picked out your clothes the night before, put on some makeup and fiddled with your hair so it looks purposefully done. You look put together! You are feeling capable and you appear healthy!

As you work your way backwards from your best, it becomes harder and harder to tackle the day. We are talking– lack of sleep making you tired, maybe you didn’t eat a proper meal or you feel dehydrated, you’ve got dark circles under your eyes and you start risking added sickness. Things can start to snowball and your BEST begins to fade away into the distance. Your mind doesn’t feel focused or clear because it’s so exhausted from all the physical mess going on with your body.

It takes energy you don’t have just to get in the shower and put clothes on. Washing your hair and shaving your legs may be out of the question. The pants you wore for only a couple hours yesterday, will do just fine again today. You likely know what I’m talking about!

When you don’t feel well, you can’t ever be at your BEST. At least this is my experience living with Crohn’s disease.

When I physically don’t feel well, I notice I tend to care less about how I appear on the outside. How I feel on the inside gets my full attention because I have limited physical energy and effort to put into other things. So I choose to focus my efforts on what I think is most important. And in my brain, that will always be trying to heal my insides, both body and mind.

To answer the question, what do you do when you can never put your Best Self forward?

I say, Don’t!

When your best isn’t an option, because you are struggling with a chronic illness, there is nothing you can do about it. You cannot push yourself further than what you are actually capable of. If best can’t happen because well can’t happen, then so be it.

Here is what I suggest instead– re-define what your best self looks like! So basically taking your ‘below average’ and slapping a ‘best’ label on it.

What are you capable of, most days? Putting on pants, washing your body, smiling, hair in a messy bun? Okay great, that can be your new BEST to strive for! If there is something more important you want to include in your new BEST SELF, prioritize it and know that you may have to sacrifice something to make that happen. We have limited energy so we can’t do it all. For example, some days I wake up looking like a zombie and a smile isn’t gonna make that passable in public. So, I put makeup on because I don’t want to scare anyone, but on those days something else gets put to the wayside. And that’s okay. Figure out your priorities for what means the most to you– on a day to day basis if necessary.

BUT when this re-defined Best Self doesn’t happen one day, know that it’s because you are struggling with the illness. And at that point your only focus should be on taking care of yourself, healing, resting, whatever needs to be done. Go into your cocoon and heal up so you can later re-emerge as your butterfly self. It is allowed and you don’t need to feel bad or guilty about it!

Honestly to struggle is one of our rights as a human being. We don’t have to get everything perfect and right all time. NO ONE has all the answers. We are all just learning as we go. So it’s okay! You are allowed to struggle, be kind to yourself. Remind yourself it’s part of the human condition, and that’s something we all deal with.

 

What does your “Best Self” look like now-a-days? Does it look different than it used to? Or do you push yourself to look put-together every day? I’m really curious to hear your stories!

IBD & the Perfectionist

It occurred to me recently that a lot of the issues I have coping with this disease may stem from the fact that I am a perfectionist. It feels as if my Crohn’s disease and my inner perfectionist are constantly butting heads each and every single day.

In this blog post I want to cover the different aspects of being a perfectionist and how that has created coping problems for me personally. Identifying the problem is a huge step in solving it. So I’m hoping by sharing my struggle, that someone else might have an Aha! moment like I did and begin coping a little easier. So let’s get into it.

Expectations

Expectations can be a major buzzkill for almost anyone, but for the perfectionist it’s usually more intensified. You want things to go a certain way and they so often don’t!

I thought life was going to be pretty straight forward. I figured that by age 32, I’d not only have my path figured out but I’d be set. You know like set it and forget it! Smooth sailing. And it was for about the first 30 years of my life until IBD happened. Having Crohn’s disease completely upset my expectations for how I thought my life was supposed to go. I couldn’t work my dream job anymore, no matter how I rearranged my work schedule. I had to cancel a lot of social events I said I would attend. I spent most of my time in the bathroom, visiting the doctor, getting labs done and sorting out all the logistics of disease management.

I started beating myself up for not living up to my own expectations. I didn’t know what to do to get my life back on track, get back to work, get off the toilet and so forth. I was constantly shooting for perfect– but I didn’t realize I was inadvertently shooting for perfect health.

Perfection includes being in perfect health in order to achieve that higher standard.

In my opinion, it’s impossible to achieve perfection, always has been and always will be. When you live in a weakened state all the time, like with a chronic illness, how much more impossible does perfection become? Talk about placing an unreasonable expectation on yourself!

Logical Jana wants to shake the Inner-Perfectionist Jana and yell – – “Wake up! You have a chronic illness! We don’t have a cure yet, and until we do, you cannot expect perfection and you cannot expect perfect health!

My unreasonable expectations cause inner turmoil and that can & will manifest itself physically. You’ve heard people say “You’ll worry yourself sick”. Well it absolutely does happen. My worst flares that put me into the hospital were products of too much mental stress. I have to adjust my expectations before it gets to that point.

So, Logical Jana set some expectations that are actually realistic, given all the challenges set before me with my IBD. Reasonable expectations and a conserted effort to stick to them!

Control

When things are going as planned, you tend to feel like you are in control. Keyword– feel. I got the job I went to college for and I was happy as a clam doing my thing for about 8 years. Like I said before, smooth sailing. Then a tornado came through by the name of IBD and messed it all up! It felt like everything I’d worked so hard for was just tossed aside like trash. It’s almost as if someone, somewhere decided– “Hmmm she seems pretty content with where she is…Psh, we can’t have that! Give her a real challenge!” My very literal life’s work was taken from me and I had to start over and re-think what I wanted to do. I essentially had to start from scratch.

All the other trials I have faced during my 32 years of living were just mere child’s play compared to the storm that is IBD.

Now, such a situation can be hard for any person to digest. No pun intended. And I mean that all inclusively. So many people think they have the mental fortitude of a superhero and then boom, they get a reality check. It’s normal to find it difficult to cope! It’s no fun when you have the rug pulled out from underneath you and you’re laying there on the floor wondering what the hell just happened! I know, I’ve been there. BUT… we do find a way to cope. It just takes some adjusting.

The problem here for me was thinking that I was in control from the start. I was not and I’m still not. I strongly believe that no one is in control of their lives, they just think they are. Something could happen at any given moment that could completely change everything {A car wreck, a diagnosis, a death, a new family member, a cross-country move, a job change}. That’s exactly what happened to me, and likely it’s happened to you or someone you love since you are reading this.

So, for me, life dictates that we are not as “in control” as we all think we are. We can make plans and have great intentions, but at any given time, something could come up. Managing my disease has taught me this fact over and over again. My body decides when it needs to go to the bathroom and I need honor that. Nausea, vomiting, abdominal pain–all those things are something the body does that I don’t have control over. There is no arguing with the body, if it needs to get things out of the system, it is going to make it happen when and where it needs to.

Blame

Naturally, I’ve always been really hard on myself, comes with the perfectionist territory. I have high expectations and standards because, you guessed it…it needs to be perfect! Or at least as close as humanly possible. I expect things to go smoothly, and when they don’t, it’s my fault. I always blame myself for not seeing the possibility of that disruption. I should have known or I should have thought of that!

See if this sounds familiar to you:

“This could have been avoided… If only I had done (x) ahead of time I would have been prepared and this never would have happened!”

“I’m such an idiot for not seeing this coming. I should have known!”

Overly focusing on the past doesn’t help. It’s true that we can learn from our mistakes, but we shouldn’t dwell on them to the point where it causes us severe anxiety. That stress, which you are essentially putting on yourself, can have physical consequences as I mentioned before. I say this specifically because I know for a fact that stress triggers flares for me. Not everyone has the same triggers, but I have a feeling if you are a perfectionist it definitely plays into your disease. Naturally, avoiding stress (to the best of my ability) helps me manage my disease best. Life is already stressful enough so why make it worse, right?

If the stress and anxiety weighs you down, and actually interrupts your day or ability to get things done (like it does for me)…that is a serious issue. This is when I go to a professional and get help. By myself, I have never found a way to just quit blaming myself. I can say I’m gonna stop blaming & beating myself up, but then my brain doesn’t listen. It’s like the brain just gets stuck on repeat. Old habits die hard. So I seek professional help when this becomes a problem (ie. psychologist, therapist, counselor). I find that it helps me to talk it out with someone and get to the root of the issue at hand, which may be different for each person. I tend to blame myself for things out of my control…which goes back to my previous point on ‘control’! I helps to know why your brain works the way it does. I know, I know… it sounds like psychological stuff you likely don’t want to explore, but believe me it really does help! Once you figure out the cause of the problem you are closer to fixing it. Which is a great segue….

Problem Solving

Being a perfectionist, I’ve found it’s harder for me to get past the cause of my uprooting. I find it real easy to focus on what isn’t going according to plan because of my disease. “Why me? If it weren’t for this dang disease…. everything would be fine!”

The disease is the poopin’ problem! Literally! And when I know the problem, I want to get rid of it, solve it and move on. Don’t we all? But with IBD, I can’t chuck the problem, because it’s here to stay for the rest of my life. And I can’t solve the problem because there is no cure. So I have to change, I have to adapt. Instead of cussing at my Crohn’s, I could be using my energy to find ways to adapt to my new situation and make the most of it. So that’s what I started doing as soon as I accepted that the problem wasn’t going to go away. I’m still in that process, it doesn’t happen overnight, but I think I’m doing pretty good considering it’s only been 3 years since my diagnosis.

Here is how I look at it now: Okay, so I can’t work my old job, what else can I do? I turned my focus onto other ways I could be supporting my family. I really enjoy spending time with dogs…so I started dog sitting when I had the time and felt well enough.

Another common problem– Okay, so I’m stuck on the toilet again for an hour, what can I do about that? Well, I could be reading a book to learn some new things, since I’m essentially sitting for an hour! Make the most of it right? And it kinda takes your mind off just sitting there on the pot.

Adopt a “What can we do” mentality, instead of “what can’t we do”.

And that’s where I’m at now. I try my best to put my limited energy into positive things going forward. I don’t want to waste my energy on negativity, judging myself too harshly or any of that. And I constantly have Logical Jana remind me of these new expectations that I set for myself.

Imperfection is Human

Getting down to real basics here – – as humans we are by nature imperfect. Expecting perfection out of something that we know to be imperfect is just ridiculous. It ain’t gonna happen! You are gonna get nowhere fast with that approach. I know from experience! I’ve spoken before about my thoughts on perpetuating the myth of perfection (our society seems to thrive off of this concept).

I’ve accepted that perfection will always be unattainable. My life experiences have taught me this, time and time again. Knowing perfection is out of reach, allows me to be kinder to myself because I’m not setting unreasonable goals as often. My standards are high, but they aren’t unattainable. Everything I expect of myself needs to be something I can expect of a human…not superwoman!

So, ladies let’s be honest with ourselves. In case no one else has told you, I’m gonna do it right now. You aren’t an idiot or stupid because you can’t predict the future. You aren’t to blame for every little thing that goes wrong in life. You are human! Moms are you listening?!? You don’t have to be superwoman!

You will probably never hear anyone else say this but consider lowering the bar a little. Put your goals and standards at a reachable level if you tend to classify yourself as a perfectionist. Adjust, tweak, change, but above all just be realistic with yourself.

There may be days where your only goal is to put on pants! Hey, that is attainable! Hahaha! And you are allowed to get excited over it too! I promise you the world won’t come to an end if the dishes don’t get done today and the laundry sits in the dryer because you spent the day running back and forth to the bathroom. It’s much more important that we care for our body and mind, so that all those other things can eventually get done.

 

Do you consider yourself a perfectionist? If so comment below! Let me know if you think it is a gift or a curse! Or both! I want to hear your thoughts!

The Reality of Chronic Pain

 

I never thought that at the age of 30 I would be diagnosed with a chronic illness that would force me to quit my dream job and start over.

I never once thought that something I couldn’t even see would be able to uproot my life so hardcore.

Guys, not every day is sunshine, puppies and rainbows over here. Okay well….there are always puppies in my life…but that’s besides the point.

Kaylee & Harper pups
My fur-babies — Harper & Kaylee (left to right)

I do my best to keep things positive but we all have those ups and downs.

Every day I wake up, I do not always think to myself, “What a blessing to be alive!”. I often ask myself, “Why am I here, and why is this pain something I need to continuously suffer through?”  No doubt you have often thought the same thing.

Unfortunately, for happiness and joy to exist, the flip side of that coin has to also exist–pain and sadness. Otherwise, we would have no frame of reference or appreciation for the good days. It’s just a part of the human condition, we just get to experience it more often that most. Unfortunately we are just lucky like that.

Each time my chronic pain gears up, it immediately triggers the same pattern of thinking for me, “What did I do to deserve this? Why do I have to wake up to this? No one should have to go through this. I don’t want to live like this. I just want to be happy!”

Without fail those old familiar feelings of depression come flooding back to me. It’s as if I’m conditioned to feel that way when dealing with the pain. I’ve noticed my motivation dwindles and I begin sleeping a lot because, simply put, I don’t want to be awake for any of those feelings.

Chronic Pain with IBD
Harper pup trying to cuddle with me so I feel better.

It’s as if I need to retreat into my cave, until I feel like a human again. Because why should I face another human being when I feel like the living embodiment of suffering? Who wants to be around that? It’s too much work to put up a facade, like everything is okay. Because obviously it’s not! I don’t have the energy to be “on” when my body is going through hell.

At the same time, I’ve noticed that after about day 3 of “cave status” I get fed up with all of it! I literally say enough is enough, and despite how I feel I get back to life! I can only take so much of feeling like a waste of human flesh. I put that very bluntly, but that’s what I feel like when I’m dealing with crippling pain. I feel like a waste and a disappointment because all I’m doing is eeking my way through existence. It’s a terrible feeling, knowing you aren’t able to contribute to your household. I just want so badly to be productive and feel like I’m actually living my life, not just existing.

Don’t get me wrong, It’s okay to have those hibernation days. Sometimes we just need to replenish ourselves, save up some energy and just recuperate away from the normal humans. I’m an introvert so I understand the tendency to want alone time. The problem is letting it go on for months. I know where that has led me mentally in the past and it’s nowhere good.

Prolonged isolation while dealing with pain and depression–That’s not a way to live, it’s a way to die. Nothing good comes out going it alone, longterm. I know from experience that depression does not discriminate. Whether you are naturally positive-minded or not, you can still be crippled. It can bring any of us down to an all time low. And what’s worse is the depression tricks you into believing that things will never get better, which is not the case.

Truth is– I’ve become accustomed to there always being some level of pain going on in my body. I’ve accepted it’s just “how it’s going to be”. In turn, I find myself thinking along these lines: Well if I’m going to be in pain anyways…why not be spending time with my mom while I’m in pain. It’s gonna be there anyways! And If it’s not going anywhere, well then, I’m gonna go somewhere and do what I want!

It’s sad to say it out loud, but you do get used to the pain to some degree. You figure out your new normal with the pain. You learn what you can and cannot do through trial and error. And you just keep on keepin’ on! And you do it in your own unique way, because we are all different.

If putting on a little makeup makes you feel a little more human and gives you that extra boost to tackle the day, do it! If running out to grab a Starbucks elevates your day and gives you something to look forward to, then do it! If you find comfort in writing or blogging, do it! If you feel at peace around animals, dog sit for a friend or volunteer at a shelter. If it brings you joy, gives you something to look forward to, gets you out of bed in the morning, makes you glad you are alive— focus your mind on it & make it a priority!

One hobby of mine is re-painting old furniture just to refresh the style. I love doing projects like this around the house. I feel like I’m contributing to our work on the house, I’m being productive and the physical act of painting is so very calming to me. So, Instead of sitting on the couch stuck to a heating pad for a sliver of pain relief– I strap the heating pad to my back and get to work painting. If I need to take breaks (so I don’t make the pain worse) so be it! Yeah, the project may take longer than usual, but I’m okay with that. It brings me joy, so it just means the joy will last longer! Win-win in my book!

Guys, what it all boils down to is this:

Purposefully find joy in your life despite the presence of your physical pain. And we are talking about chronic pain in particular. Since we don’t always have the choice to live without the pain…We have to find a way to live with it!

So even on those days where I wake up hurting, I know I can get through it. It’s always within my power to just make a conscious decision to be fed up and make my life worth living again.

I want, no….I deserve to thrive, not just exist. And you deserve it too!

 

Judging the Book…

Part of living a life with Crohn’s disease is being so often misunderstood. And more importantly figuring out a way to be okay with that.

There will be judgement from others along the way. Obviously we can’t control what people think about us and how we live our lives. Not everyone you come in contact with will want to understand your situation, or care. It’s just a truth that I have come to realize after many recent encounters in my own life. There is a time for everything. A time for educating people and a time to not waste your words on deaf ears. Or waste your spoons for that matter. For me, it can be hard when I can actually physically feel that judgement coming from others. It bothers me when I know people have the wrong idea about me and are judging me based on one piece of my puzzle. It can even get me to second guess my own decisions and life choices I’ve made, leading me to feel like I’ve done the wrong thing or like I’m a bad person because I don’t live up to this world’s expectations.

People will make assumptions, it’s just how they are wired. But, just because people do judge, does not mean that they have the right to judge. Always remember that! I have to remind myself of that constantly.

But… How are we supposed to not let it bother us, when we know there is going to be judgement? There is literally no avoiding it.

The problem is when people are judging a chronically ill person’s life based off of what a healthy life is supposed to look like. When you do that, it won’t make sense and you are absolutely going to get the wrong idea. For instance, people will assume things like… “oh she stays at home all day and does nothing, she is just lazy.” “she doesn’t look like she is in pain, so she has to be lying.” “she doesn’t do chores around the house, does she do anything to help support her family?”  “No one is ALWAYS sick, I don’t believe her.” “I go to work when I am sick, why can’t she?” When in reality we aren’t just sitting at home doing nothing, and having a ball. Ha ha ha. It’s more like a job in and of itself just managing a chronic illness and all the responsibilities that come with it. You and I both know that it is NOT the lazy vacation that they are all picturing in their heads. So you see, we have to find some way to be okay with people thinking whatever they are going to think, because we simply can’t control it.

If you are like me, you want to set the record straight and make sure people have the truth/right idea. I mean who wants people thinking they are a lazy bum and a waste of human flesh?!? No one! And who wants to be made to feel that way?? No one! But at the same time it can be very exhausting trying to explain your situation to someone! It’s complicated and hard to put it into words especially, short form. And not everyone deserves an explanation. And, I don’t know that it is truly possible for anyone to really know what we fully go through. Only we know our journey’s inside and out because it is happening to our body. We are the only one’s that live through it all, and feel what we feel.

I used to be a healthy person; So I know the perspective from which most people are coming. They just want you to be healthy and positive. Also, if you are working, providing for your family and have an active social life, then all is good. That is how your life is expected to be…that is our cultural norm. You work, sleep, eat, and socialize. But when you have an illness that makes it incredibly hard to do any and/or all of those things…Simply put, you don’t “fit the mold”. You don’t meet the expectations. That fact alone immediately lumps you into a category that is very hard to comprehend. People’s minds will immediately go to a place of: ‘why aren’t you doing things like the rest of the world…what is wrong with you?’

Ladies and gents, I am here to tell you that we have become accustomed to a foreign way of living.

“What do you do all day?”

“Why can’t you get a job?”

“Don’t you get bored staying at home?”

“Do you take care of all the household chores?”

“What is it that you DO do?”

“You should get out more.”

 “Have you tried exercising and eating healthier?”

“Do you have any big plans for the weekend?”

“What do you mean you aren’t feeling well? I just saw you and you were fine.”

“But you look healthy!”

Yes, the chronic life is a completely foreign way of living to the average person. Most people get sick and then they get better. We stay sick and people don’t easily grasp that concept. They don’t want you to be sick, because that is a negative and they generally get tired of hearing about it. Also, People expect to see sickness on a person. So when they don’t see that you are sick, they can’t fathom it. They may think you are lying or assume you are just lazy. Granted…in a lot of cases you can look at someone and know they are sick; like a cold tends to have very obvious physical symptoms. That is not the case with Crohn’s disease at all. The symptoms are on the inside for the most part. You can’t see what is going on inside the GI system and the effects that it has on the whole entire body; because mostly it’s all on the inside. And let’s get real, outsiders won’t necessarily see the worst of our disease, because personally we aren’t going to let them see it. Yes, there is a lot that goes on in the bathroom, but that isn’t what I’m talking about! I doubt any of us want to be around people when we feel and physically look horrible. So it stands to reason that people aren’t going to see it, unless we let them see it. We are either gonna stay at home or cover it up with clothes and makeup.

People will likely be confused when you are walking around “like normal” when you say that you are in a lot of pain. With all things that involve chronic pain… you get used to it. That means finding a way to go on living your life with that pain. I’ve found that my pain tolerance has improved over the years. I can be sitting and chatting with someone at a level 6 or 7 of pain. It’s just become such a norm for me, but the average person can’t understand how that is possible. To them, that level of pain might be what sends them into the ER. It’s an alien concept to a healthy person to just live with the pain, because that is counter intuitive. Yes, normally, you figure out what is causing it so it can go away. But when there is no cure…you gotta deal.

Another point I’d like to bring up– how Crohn’s disease looks and acts differently on each individual. Each journey with this disease is so unique. So there shouldn’t be an expectation for what Crohn’s “looks like”, at all. My inflammation may be in different parts of the body than yours, producing different symptoms and complications. Some patients have years of remission while others like myself may only experience small periods of symptom-free time. Some may be constantly hospitalized and need multiple surgeries, others may get away with a simple OTC medication. It is literally all over the board with this disease.

That being said, the general public will compare and expect our journey to look like their friend’s journey with Crohn’s disease. It’s gonna happen. When you don’t know how to understand something, you do your best by comparing it to something you already know, right? It’s just how it is. So again, educating people can be helpful at certain times like this.

After experiencing a lot of these judge-y situations recently, I have to tell you that I don’t have an answer for you on how to be okay with it. Perhaps it just requires time or a level of “not caring” that I’m just not at yet. Maybe I just still feel a lot of guilt over things that aren’t in my control. Perhaps the old Jana, “healthy Jana”, is being too hard on chronic Jana. Both Jana’s have been know to do this, ha ha ha! Either way, I have been struggling with this a lot lately and if you have struggled with this too, then at least you know you aren’t alone in your feelings. It is very much a part of this journey with inflammatory bowel disease and I’m sure many other chronic illnesses too.

While I can’t offer you an answer for how to be okay with the knowledge that people will judge us, I can offer you something else; a judgement-free zone. I started this blog to help provide ongoing support for fellow Crohn’s disease patients and others with chronic illnesses. Always feel free to share your own experiences here without fear of judgement. While you may feel that the outside world just doesn’t understand, that is not the case here. We are all just trying to make it through this journey in the best way we know how.

With that said I will leave you with these thoughts…

Be comfortable in your own skin. Don’t be ashamed of the life choices that you have had to make based on your illness and your health. No one can fault you for that. Know that you didn’t make those choices lightly and that there was good reason behind each choice you made at it’s time. Don’t let someone else’s expectations and opinions cloud your own sense of judgement about your life. You are the only one that has to live your life, so you have to do it the best way you know how.

If you have struggled with similar situations and have figured out how to deal with them, I would love to hear your comments below. Do you have a phrase that you use when people ask you certain questions about your life? Let me know!

The Cat Bite

Along my Crohn’s disease journey, I can tell you I have been forced to take a closer look at myself and how I live my life. I’ve learned to really listen to my body and become more mindful of how my life choices effect it. Often times I have to stop and really consider the tiniest of decisions before acting on them. Something I touch on in my blog posting, All The Small Things. But some experiences need to occur for us to truly get the message loud and clear about our body’s limitations, so you know to be careful in the future! I want to share one of those experiences with you today.

One night my grandmother’s cat got out of the house. Obviously she couldn’t go searching for him and my brother wasn’t having any luck. So, I came over to help. Turns out the cat was just in the neighbors yard. My brother & the cat are known to “not like each other”, so I figured I should try to grab him. So, I went to pick him up like I had done many times before. Except this time, the cat went straight for my hand. He bit down on my hand 3 times and then locked his jaw there. This all happened so very fast, I didn’t even have time to think or really understand what was going on. However, I managed to very literally rip his head off of my hand. Since he was being a total butthead and wanted to stay outside THAT badly, we decided to just let him. So we started walking back to the house. It was at this time that I felt blood start to stream down from my hand. It didn’t make any sense to me, because my hand didn’t really hurt. I thought maybe the cat had scratched me or broken skin a little, but not enough to warrant that much blood. Remember I was outside in the dark so I couldn’t see my hand, I could only feel the blood dripping off of it.

Back at Grandma’s house, I finally got my hand under some light and realized there were  actually multiple deep puncture wounds, not just a scratch or two. So, I washed my hand off, but I was actually bleeding profusely and couldn’t get the blood to calm down or clot. So my brother helped me get some bandaids on it.

When I arrived back at my house, my hand already looked swollen & started aching! Not gonna lie– I started crying hysterically. It hit me that I may have actually done some irreparable damage to my hand and it might never be the same. My hubby calmed me down and re-bandaged my hand with some sterile pads and gauze. Guys, I had a mummy hand! No lie! I figured the swelling was just because it was a fresh wound and needed a little time to heal. The next day my hand was actually quite painful and it looked and felt infected. Reluctantly, I called my doctor and they got me in immediately!!! Which was surprising to me, it was just a bite, what the heck? Once I got there, the doctor sat me down and told me that cats have all kinds of nasty bacteria in their mouth, so infection is almost a given if it bites you. That bacteria transferred into my hand when I was bitten. What’s more concerning is that my immune system is suppressed and I’m prone to infection due to the medication I’m on for Crohn’s disease. My doctor knew that and realized that my situation was serious. When he looked at my hand, I saw his eyes widen and a look of fear/panic went over his face. He was very genuinely concerned for me. Yikes!! So needless to say he gave me some antibiotics and he wanted me to follow up in a few days and keep him in the loop if anything else occurs.

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I will never forget the look on my doctor’s face that day! I didn’t realize exactly how much danger I was in, until I saw my doctor’s face. Yes he said “serious infection” but I didn’t know just how serious until his reaction. It could have been a life threatening situation if I hadn’t sought proper care.

Being the proactive patient that I am, I also called my GI specialist to let them know what happened. Obviously it’s not a gastro-related issue but I figured it was still a good idea that they know about a possible complication should things get worse. Just better to be safe than sorry, right? The nurse on the phone immediately reacted the same way, with utter surprise and concern. She also wanted me to keep them in the loop. Just wow! I didn’t even think that something bad would happen. I’d picked that cat up many times before and I’ve survived many a cat scratch in my lifetime…pre-Crohn’s. I grew up with cats since I was a tiny one and never ever knew this.

When I followed up a few days later, my doctor took one look at my hand and immediately exhaled a sigh of relief! He expressed how that was a really close call, and how it could have been really bad if I hadn’t come in (which I had honestly considered doing). Shew!! Guys, I truly dodged a bullet!

This whole situation was a very serious wake up call for me! I realized I can’t just do the same things that I used to do and expect to be okay. You can’t expect a normal body reaction from an abnormal body. I have an increased risk for infection, a compromised immune system & low blood counts, that’s a fact! It cannot be ignored.

My hand healed up very nicely, but I am left with a number of barely visible scars (I know they are there). To this day, when I look down at them I think– “Jana, You have limits. And that’s okay! Just don’t do anything stupid, alright?” Ha ha ha! Funny because it’s true! It’s a reminder to keep myself in check, be careful and make smarter choices. I mean let’s get real–In retrospect it was not a brilliant idea to try and pick up a cat that was outside in an unfamiliar environment, possibly hunting a mouse. Especially since the little booger of a cat showed up right at grandma’s door an hour later! Yeah…that happened. *insert eye roll here*

So I learned a very important lesson from that scary bite incident. I suppose some may look at it in a depressing manner and think, “Oh great, another limit! Is there anything I CAN do?” But I choose to see things a different way. If it keeps me safe, I’m okay with putting up boundaries. Even if that means I can’t cater to that side of my personality that always wants to be helpful and please people. My health and safety needs to come first. Is it hard? Yes. Is it an adjustment? Yes. Do I feel bad when I have to tell people “no”? Yes, absolutely I feel bad. But it gets a little easier with time and I know I’m making the best choice I can for myself, that is more important. And limits don’t mean that you can’t do anything, it just means, you only have 2 beers instead of 3. You go to bed at 10pm instead of midnight. You only eat 10 chips instead of the whole bag….*cough* JANA!! Ha ha ha!

My point is–it doesn’t have to be seen as such a negative thing. You have to make a choice how you want to look at things. 

I hope you learned something from this little story-time with Jana! It can be hard to accept that you have to make changes in your life because of your disease. But please know that we all struggle with it in the beginning and we find a way to keep going. If you have found this to be true, please open up and share in the comments so others can benefit from more experiences–

Have you ever had a wakeup call along your journey? Something that kicked you into high gear to make changes?

 

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