Most Surprising Emotion of My Diagnosis

One big surprise on the emotional rollercoaster ride of diagnosis for Crohn's disease patients

There is one emotion I have experienced that has surprised me the most out of all the emotions on this rollercoaster ride. That emotion is anger.

I have never been an angry person. I’m usually always pretty positive and happy. Even when I’m having a bad day, my first inclination is towards sadness not anger. It really takes a lot for me to get to the point where I am angry. I very much consider myself an introvert, so I tend to bottle things up and then I need to let it out every so often. Blow off some steam. Not gonna lie to you–that is where curse words can be therapeutic! A lot of you may not understand that, and that’s okay. But it has always been quite a therapeutic tool for me. And when you are in a flare, you gotta curse at something man! It’s just how it is!

what it really looks like when a patient is trying to cope with an invisible illness.One thing I have always been is hard on myself. I hold myself to unreasonably high standards. I’m a perfectionist in certain aspects of my life. I always tend to beat myself up first before assuming anyone else is to blame. Needless to say, when I was diagnosed back in 2015 and I started experiencing this very real anger inside myself…I didn’t know what to do. It was very new to me– and it felt unhealthy. I was honestly worried about what was going on with me. I was ashamed that I couldn’t put myself above it or let go of it easily. I expected better of myself. I did NOT like it and that made the anger even worse. Anger is not something I happily invite into my life, but apparently it was something I needed to go through at the time.

What do I mean when I say “anger”? I mean I was angry at myself and blaming myself for everything that was wrong in my life. Why didn’t I do things differently? How could I have stopped this from happening? Did I make bad choices and this is karma biting me in the butt? Do I deserve this?? I forgot to take my pills! I can’t do anything right! Why do I suck at life?? And I was just angry that I had to deal with this disease in the first place! I didn’t want it!

It didn’t stop there. I was angry at the outside world too. Here I thought I was dying and no one seemed to really notice or even care! How dare the earth keep spinning!!!

The world stops for no one and everyones lives kept going forward, while it felt like mine had come to a halt. People were having babies, getting married, buying houses, getting new jobs. The list goes on, while I felt stuck in a medical trap. How was I supposed to move forward ever again? I would never have a normal life again! It didn’t seem fair that everyone else got to just go about their daily lives like normal, like nothing even happened! I felt like all the people around me were taking the simple things in life for granted. They are lucky and they don’t realize how blessed they are to be healthy and have normal people concerns. I wish I could have those concerns again! So I was angry at the world!

Tensing up my body in reaction to my anger and frustration with my chronic illness.Sometimes the emotions would literally surge through me and I would have to physically let it out. I’d want to punch a pillow or just throw something across the room. However, I would usually just tighten my muscles, mainly the legs and feet! Sometimes I’d ball up my fists really tight too. I don’t know why, its just my thing! I would tense them up as hard as I could and then release the tension. Usually followed by teary eyes and a very audible “RRRRrrrrrrrr” sound out of frustration. Loss of control at its finest.

One night I’d just had enough. A ton of little things had been going wrong all day. I was at my breaking point and then I received a text message from family. They were very blatantly giving me a guilt trip, because I wasn’t doing what they wanted me to do! That was the final straw. I actually smashed a small nightstand to pieces in the basement. (A cheap little piece together item made of chipboard, but still!) I was completely ashamed of my behavior, but I felt better getting that bad energy out of me. Afterward, I just curled up in a ball in the corner and cried. My husband just quietly came downstairs to the basement to see if I was okay and then grabbed a broom and dustpan. He cleaned up the mess. Once he saw I had calmed down he said “Ya know, if you didn’t like the table you could have just said so.” Ha ha ha!! Of course I laughed with tears and mascara running down my face as we hugged it out.

Looking back now, I know it was just a part of the process. I was grieving. My entire life had just changed and I didn’t have one bit of say in the matter. Old Jana’s life was gone. This new Jana was being re-born and she had to figure out what was going on! What was this going to mean? How exactly was my life changing? And that is all something that just has to be figured out as you go. Especially since this disease effects everyone differently. But I can say with certainty that I never in a million years thought that I’d see myself go through anger like that. It’s amazing what this disease will bring out in us. Just know that you are human, and it’s only normal to have an emotional reaction to a big life change like a Crohn’s disease diagnosis.

I would just like to say that I actually sought professional help when I felt things got too hard emotionally. I was in therapy to work through a lot of the feelings like this that came up during my diagnosis. If you experience anything similar to what I have mentioned in this blog post, I strongly recommend seeing a medical professional and/or mental health professional. You don’t have to do this alone, and you shouldn’t! You deserve a better quality of life!

What is the most surprising emotion that you have experienced during your diagnosis?

This story was published on The Mighty.

I’m in limbo with another diagnosis

Today was harder than most days. I had 14 tubes of blood drawn in hopes of getting some more answers. My rheumatologist ordered the blood work since I’ve been experiencing a lot of joint and back pain. We want to see if there is another autoimmune disease present along with the Crohn’s disease. In my appointment today, I learned that having Crohn’s disease makes me a candidate for spondyloarthropathy. Arthritic pain in the back, hips and feet that is specifically linked to inflammatory bowel disease. I’ve always known that joint pain was just one of the many complications that comes along with this disease. However, knowing that it’s a possibility and actually dealing with it are two completely different things. 
Sigh. I wasn’t ready for this today. Real talk–I won’t know for sure till all the blood work comes back if this will be yet another thing added to my plate. So I’m NOT trying to jump the gun and say “OMG I have arthritis now too!!!” Not at all. What I am saying is–it feels a little like I’m getting diagnosed all over again. Getting the Crohn’s diagnosis was a BIG DEAL! And I remember the “not knowing for sure” phase that came beforehand. That is where I am at right now. 

I’m in limbo. 

Things are getting REAL again. And all those familiar emotions are flooding back. You know, the ones that I thought I had already dealt with. Yeah those! They are back again!
So, when I got home and all my back pain set in, my anxiety levels spiked. I don’t want another chronic condition!! I just can’t deal with it! I mean, yes I will do whatever I have to do! I will always continue to fight for a better quality of life! I am a warrior! But Seriously?!? I just don’t want this too! When I feel like that, I am just done with the day and I want to go to bed. Of course hoping that everything will be better tomorrow.
I know that I am genuinely doing my best. And each day my best looks like something completely different. Today my best was doing my physical therapy, seeing my rheumatologist, getting 14 vials of blood drawn and then just resting at home, because the pain was too much. My hubby and I had plans to go out to eat and get a few shopping errands done. That didn’t happen. I couldn’t even have dinner ready for him when he came home after work. I couldn’t move off of the couch. I felt really useless and like a disappointment. I felt like I couldn’t even take care of myself. I was ashamed that I couldn’t do better.
It is extremely frustrating to know that you have no control over what your body is doing, but it is a reality. In turn you can get angry at yourself or at the world around you, but that is a blog post for another day. I have no problems admitting that on this occasion I had to cry out my frustration. Sometimes crying just helps you release those emotions in a physical way, and you feel better afterwards. 

It’s like an emotional reset button.

The stress or tension builds up in you and you have to let it out by crying or hitting that reset button for your emotions. It levels you back out, because we can only hold so much tension in our bodies.
Crying has always reminded me of rainstorms. Humidity builds up in the air until it can’t hold it anymore and releases itself in the form of rain. If you go outside after a rainstorm, you will usually notice there is less tension or humidity in the air. 
I think the same applies to us. After I let out my tears, I feel like I can breathe again and my tension significantly lessens. Allowing me the ability to finish tackling my day instead of just giving up on the day! Which actually lead to me writing this blog post right now. So perhaps a good thing came out of my day today after all.

When Your Brain Decides to Shutdown

The things I have to deal with!

As I’m writing this–it’s 3:30pm and I’m beyond exhausted. A normal person would be excited to get off work soon and go home to do whatever they want. I’m curled up on my couch feeling like I can’t even move or keep my eyes open. How is laundry going to get done? The dishes? How can I take a shower? Or even just move myself to the bed, so I can rest! All of those tasks require energy that I just don’t have within me. I don’t have the spoons guys!!!
{Jana what are you talking about? Spoons?! Click this here link, it explains everything.}

I woke up today at 9:30am to my neighbors dog barking straight for over 30 minutes. I wanted to yell at the dog to shut up, or yell at the neighbor for just letting it go on that long. But instead I just accepted that I needed to get up! So I started my day feeling like I hadn’t even slept! Even though I went to bed around 11pm.

So now at 3:30, I can barely compose a sentence in person. I mix my words up, just can’t seem to get the correct words out, or I physically can’t think to actually have the words come out of my mouth. I can’t focus or concentrate. My husband just called me on his way home from work, as he usually does. But I had to keep asking him “what!?” or “what’s going on?” “Are you coming home?” And poor guy, he just gave up and said “Omg you are too tired! I can’t talk to you right now.” And he was right. I was trying so hard to listen and hear what my husband was saying, but I just couldn’t. No matter how hard I tried.

It’s as though my mind is literally shutting down or putting itself into “low power mode”.

It is really frustrating because you know you have all these things that need to get done, but boy is it hard to get anything done, when you can’t focus! My brain is basically saying “Nope, not allowed. We don’t have enough power for that.” But it still needs to get done! Power or not! What am I supposed to do brain!? The world does not stop moving for us, simply because you don’t have enough power!! Suck it up, brain! Lol

There is no good answer for the question–“What am I supposed to do?” You essentially have to ask yourself, do I want to push through this and pay for it later? Or do I want to rest up and feel a little more human tomorrow? Maybe then I can accomplish some things! Either way, there isn’t going to be a fix! It will happen again tomorrow, just a matter of when!

Would diet make a difference? No, I have to watch what I eat so I don’t trigger a flare. And I have actually taken to eating healthier and counting my calories. Doesn’t make a difference to my brain. I am also on prenatal vitamins as well as a number of other vitamins and minerals to make sure that my levels are normal. As sometimes anemia (which I’ve had in the past) can cause you to feel fatigued or tired. If you aren’t getting enough nutrients that can happen! But I’m getting an abundance and my labs look good! So…I don’t know! I have tried some other natural supplements to increase my energy, and I’ve had no luck. There’s just no real answer here. Nothing I’ve seen so far has fixed this issue with fatigue and brain shutdown. This is something I face daily and just have to deal with. Even my husband and my mother have clearly figured this out about me. They have both had to get off the phone with me because I couldn’t get my brain to concentrate enough to actually think and have a conversation.

I will certainly let you know if in the future I find something that helps with this, but I’m not holding my breath. There is a reason why this disease has no cure. If food or meds or supplements could fix this disease…then that’d be a cure wouldn’t it? Sometimes these things can take away a symptom, but they don’t fix the underlying problem. Which is not the same thing as a cure. I think a lot of people have a different idea of what the word “cure” means.

KP dog illustrates how I feel. Although I don’t look nearly as cute as her! ❤

Do you ever experience this level of fatigue where your brain goes into “low power mode” and just doesn’t want to function? Please share your experiences, I’d love to hear them!

This story was published on The Mighty.

Let the Creativity Flow

The ONE thing that gets me through the day is—putting what energy I do have into something meaningful that requires me to be creative.

Now obviously everyone is attracted to different things that exercise their creativity. I love puzzles and fitting all the pieces together. I love coloring and focusing on keeping it in the lines. {Just ask some of my Origami Owl team members, they have received hand-colored cards from me before! Ha ha ha.}

I enjoy playing video games that immerse me in their stories and challenge me to think outside the box. I love sitting outside in the warm sun and doing home DIY projects– like painting an old piece of furniture to revamp it into something more my style! I also have my Origami Owl jewelry–I can’t get enough of designing lockets for all different fun occasions. There is just something about how meaningful it all is, that makes my heart fill with joy like nothing else.

Especially when I’m designing for others, because I get to know the person and then turn their heart and their happiness into a beautiful piece of jewelry. It’s just so cool! And a really special way of making friends! 😊

Now obviously I switch up what activity I do based on how well I am feeling. I can’t always be painting furniture outside, because sometimes I don’t make it out of bed all day. But playing a game on my computer, coloring in a book, coming up with inspiration for locket designs– or even just blogging on here, are all things I can do from bed, even when I feel like pooh on a stick!

All of these creative activities are GREAT for your mind, Why? 

1. You are focusing your energy on something positive.
2. You are giving your mind a JOB.
3. You feel you are accomplishing something, not matter how little or big it is.
4. You are distracting your mind from the unpleasant stuff going on with your body.
5. You are finding a way to stay happy!
6. You enjoy it!!!!
Now, you can’t control what your body is doing to itself. There is no cure for IBD yet. So we know that this is something we will have to live with for the rest of our lives. What you CAN do is choose how to focus your energy! That is something you have control over.
But Jana– I have so many doctors appointments and blood work, testing to be done, insurance phone calls to be made…. 😰
Yes, obviously you will need to make sure your health is the priority. That is always first and foremost! You absolutely need to make sure that all medical related things get done. What I’m saying is don’t focus your energy on WORRYING about those things. It will get done, when it gets done! Look at it as just something on the checklist of things to do, just like laundry. Ask for help if you need it or if it’s too much to juggle. But be kind to yourself because you are doing the best that you can! My husband has to make calls for me all the time. Sometimes I just can’t deal with it, and that’s okay. Y’all–we are doing our best!

Tell me about your creative outlet and why you love it! Leave some comments for me, I love hearing from my readers!

Wanna see more of my locket inspiration? Click the ‘DESIGNS’ tab in this blog and it will take you to my Instagram where I share pictures of all my Jana Owlf Designs. If you’d like to create a locket of your own, reach out to me and I’ll help get you started! 😊
OR… Begin exploring Origami Owl jewelry now

I feel like my choice was taken away

This is a very hard topic for me to discuss, but I feel very passionate about it! Since it does weigh on me, I feel it’s important to share for the sake of others with similar feelings or concerns. Before we dive in– I just want to make it really clear that I respect all my mom friends out there and their choices. You will likely disagree with what I have to say, and that is okay. Please know that these are just my personal beliefs for my own life.

After my diagnosis sunk in and I accepted that this was going to be my life now…I was hit with the realization that I may never have children of my own.

For most of my life I have never wanted to have kids. Anytime someone would ask me, “Do you have kids?” I would say “Umm NOOOOO…NO!!”And I would almost kinda laugh, and think, are you crazy?! I don’t know why, I guess it just seemed like an absurd thought to me. I will admit that I used to be terrified of childbirth–but after experiencing the pain of a stricture and bowel stasis, that fear went away REALLY quickly!
{Side note–Any IBD moms out there that have also experienced the pain of a stricture? I would love to hear your thoughts on the pain similarities! My ER nurse said there isn’t much of a difference, except that in birth there is a hormone released that kinda makes you forget the pain. I’m thinking that is bull malarky, but you tell me! Enough of that tangent. LOL}
Once my sister in law became pregnant with my nephew a couple years ago, my view on kids changed completely!! I mean we are talking 180 degree turn ladies! I was in love with this miracle of life. I was amazed and fascinated with all aspects of her pregnancy and just wanted to experience it myself and bring life into the world so badly! I had the baby fever y’all! I know you know what I’m talking about! I went into full on auntie mode. I was buying all the baby clothes! I mean my husband actually had to cut me off! Ha ha ha! You can imagine I was not very happy with him about that! I had spare diapers at my house incase the bro & sis in-law dropped by! I laid awake sleepless and anxious at night, when the baby was due–wondering how my sis in law was doing and if the baby was coming! Would I have to hop in the car at a moments notice?
Ha ha ha…omg you guys– it was bad…but in such a good way!
Unfortunately, this was all around the same time I was just getting diagnosed with Crohn’s disease and I was put on a high risk drug for treatment. My disease was pretty severe at the time and manifesting itself in numerous ways. So we needed to get things in check fast. Not what I wanted to focus my energy on at the time, but it needed to happen. Looking back…maybe that is why I was kinda living vicariously through her and her pregnancy; because I was going through a scary journey and didn’t want to think about it! It was a way for me to kinda push that out of my brain and just be super happy with everyone else about the upcoming baby! But when I’d get home at night, I’d cry because… I wanted to have a baby SO BAD…but I couldn’t.
My doctor has told me multiple times that if I want to become pregnant, we would absolutely need to change my treatment because it’s not safe for pregnancy. He has communicated to me that I have to let him know beforehand, so we can change my medication and actually get it into my system. However, my current medication seems to be working okay, so who knows what another treatment would even mean for me. It could simply not work. Or I could possibly have another allergic reaction. Nothing is just a simple thing. I’ve learned that about this journey of mine so far. But to have a child…worth the hassle? Yeah, I’d do it.

Not a year later, after my own diagnosis, I get a message from my brother in-law saying he is diagnosed with IBD now too!! What are the odds?! Spent my whole life never knowing anyone with Crohn’s disease and within a year… Blows my mind! It took a while to sink in, but then I realized— that means the genetic susceptibility for Crohn’s disease doesn’t just come from my family alone, but from my husbands family as well. Gotta be honest–that really scared me.

That was the game changer for me.
I don’t know that I’m comfortable bringing a child into this world and possibly passing on this disease to them. I do not wish this disease on anyone!!! Most certainly not my own child. I just don’t think I could bring myself to knowingly do that. At least, right now–I can’t reconcile it in my head. I’d have to be okay with giving my own baby something they will live with for the rest of their lives, and they have no say in it. I’d have to be okay with giving them a harder life to live. No, I want better for my kids than what I’ve had to go through; I think all parents do. I know myself–I would feel forever guilty that I passed this on to someone, knowing I have Crohn’s and the genetic component with this disease. It would feel selfish. And yes there is the possibility my child could also NOT have the disease, and that would be amazing! But just because they don’t have it, doesn’t mean their kids wouldn’t. And I would feel responsible. To me there is a big risk here, that I just don’t think I’m willing to take.
Now the facts are– it’s not inevitable that the disease will be passed on.
If one parent has IBD the chances of the child having IBD are 2-9%. Not bad. I could live with that.
If both parents have IBD, the risk is as high as 36%. SAY WHAT!?!?!?!!?! Nope, nope, nope! Not having that! My husband doesn’t have the disease himself, but it’s present in his family more than once. That percentage is simply too high for me. No ifs ands or buts about it! I spoke to my doctor about my concerns as well and he confirmed that there is indeed a higher risk that my child would have IBD since it’s in both mine and my husbands genetics.
This makes me sad, because I think… if I didn’t have IBD, would I be having a child right now? I can’t be sure, but I’m leaning towards yes. That is the natural progression of life. You settle down, get married, buy a house–then have kids, right? But for me it was… settle down, get married, buy a house…then have Crohn’s disease. And boy does that mucky up any and all plans!
My doctor did also say to not let that be the deciding factor. In other words, don’t let that risk deter me from trying to having a kid. But seriously?? If not that, then what? That is a pretty big deal to me. Not something to consider lightly, because IBD is lifelong.
Also, just considering where I am at with my own medical journey–I can barely manage to take care of myself and my dog most days. Some days I can’t make it out of bed. A kid seems pretty much out of the question. That’s not fair to a child, and I don’t want that situation for me either. Heck, I don’t think its fair for my dog!
I know there are plenty of women out there that have IBD and children, before and after diagnosis. Totally their choice and they know themselves and what they can and cannot handle! And these women are somehow rocking it! But to be honest, I look at them and think–there is absolutely no way I could do that. I just don’t see that for myself. And I’m learning to be okay with that, granted it is a process. And despite all my battles with IBD, I gotta admit I’m content with my small family the way it is–me, my hubby and my fur baby KP.
So, while I feel like I have come to the conclusion that I may never have kids–I also feel like this decision isn’t wholly mine. I feel a bit like it was decided for me, because of the way things played out in my life. I’ll say it, it feels unfair. But instead of basking in that feeling, I am choosing to be grateful for all the children that I already have in my life. All my nieces and nephews bring me plenty of joy! 😊  And I’m so blessed to have a lot of them! When I’m around them I forget about what I was robbed of–I just feel happy!
Again, I respect that others may have different views and opinions on this matter. This is just mine at this juncture in my life. Like all things, it could change, but this is how I feel right now. I knew this would likely be a somewhat controversial subject, but I felt very strongly that it should be discussed.
As always I would like to hear your thoughts if you have ever felt similar, whether you have kids or not. Have you ever been worried about passing on IBD to your children? What are some of your concerns when it comes to pregnancy?

My Nose Woes

I’m experiencing another extraintestinal manifestation of my Crohn’s disease. Or as we call it in my house…”extraterrestrial”, ha ha ha! Meaning, my disease is essentially inflaming other parts of my body, outside the gastro system.

In this case it is the skin on my face…YAY!  I’ve got seborrheic dermatitis around my nose, basically a red
rash that rings around both of my nostrils. It is raised and bumpy in some areas. Sometimes it will blister or flake away. It has also has given me itchy flaky scalp, dry itchy skin all over my body, and weird acne in my eyebrows, at the hairline, on my scalp, my upper back & neck and behind my ears. Soooo yeah! This has been going on for months now!!
BEYOND FRUSTRATING!! I just want this off of my face already!!! I’ve been really fighting this rash but it just REFUSES to go away!!

 doctor who angry david tennant frustrated yelling GIF

I’ve had this redness around my nose a few times before, but it’s always gone away on its own. This time it won’t budge. I have been treating it with two different creams twice a day for over two months now. Just last week, I noticed it getting worse, exactly where I have been applying those creams. My nose became riddled with tons of tiny little white heads! It looked so gross, like I was having acne breakouts super concentrated on my nostrils!! Weirdest thing! Of course my natural inclination is to get rid of the white heads, but that just starts blood and then I can’t stop the bleeding!! Ugh!!! {Another fun side effect of my crohn’s medication–I bleed a lot easier than normal. If I scratch a bug bite, things turn into a mess real quick!} Needless to say–Frustration city!

I just don’t want anyone to see me like this but…I literally do not have control over this and I have to get things done. I feel like I have tried everything at this point. I’ve tried washing my face more and I’ve tried washing it less. I’ve tried changing my diet. Obviously I’ve tried a number of different cream treatments. I’ve tried switching up what skincare products I use on my face. I’ve tried not using products on my face. But NOTHING seems to work! I was even given specific shampoo and bodywash to help with the itchy dry skin and scalp situation. This whole thing genuinely makes me feel like I’m dirty and gross all over my body. Like I have bad hygiene, even though I know I don’t! It’s just the itchiness and the ugly redness and acne–ugh!! So of course I have isolated myself–because when you have this unclean feeling all over your body, you don’t want to be around others.

Phew…. This is incredibly embarrassing for me, Guys this is really hard for me to share all this so openly. I do not usually share this side of myself, I tend to keep it inside. I’m a little anxious because I’m afraid I will be judged for how I look or think. But I’m just gonna push through this.

I legitimately feel like I’m relearning a life lesson from my teen years. “What you look like, is not who you are…it’s just what you look like. Who you are is on the inside.” I’m 31! I know that my personality is me, not what just happens to be on my face! However, I keep having flashbacks to when I was a teenager, when zits felt like the end of the world. Back then I was always scared I was attracting the wrong kind of attention to myself, so I would try to hide it because I was ashamed and embarrassed. I’ve been reliving those same emotions, which feels like regression. Leading to feelings of disappointment in myself and failure.

I honestly didn’t expect this to impact my self image and my emotional state. I suppose I expected more from myself at this stage in my life. THIS on top of all the other symptoms I have to deal with right now, just feels like too much. Since this isn’t one of those invisible symptoms and I’ve had to look at it every day for months, my emotions have been down in the dumps. I don’t feel like my full happy self. And unfortunately that is just part of this journey sometimes. That is a reality. It will get better, I know that.

But right now– 

I have to accept where I am
Recognize how I feel
Know it is a normal reaction
Don’t let it consume me 
And just move on with doing the best that I can.
Because that is all I can do.

This week the nose situation has calmed down a bit, who knows why, but I will take anything that looks like progress! The pictures included in this article are actually of the rash in it’s calmed down state, only because I didn’t think to take pictures when the rash was at its worst. But I figured I better take pictures now so I can share with you. AND Just in case my nose decides to be miraculously cured by the time I get to my dermatologist appt next week! Ha ha ha! That is just my luck!

I can’t believe I’m posting these completely unflattering pictures of my rashy nose on the internet!! Ha ha ha! But I really want to share my journey with you guys, because I don’t see too many people talking about these weirder side effects that can occur. I hope it helps someone else know they aren’t alone in their frustrations. Or perhaps it just educates friends and family members about what some of us are going through. Either way I hope you get some value out of this! If you’d like me to update y’all after I see my dermatologist, let me know!

What frustrations have you experienced from Crohn’s disease that just drove you nuts? Have you ever isolated yourself because of your symptoms?


Buzz Kill

I was recently at a baby shower and was chatting with a new friend. It was lovely because it was the first time I was able to get out of the house in weeks! I actually felt WELL! Woohoo!!!! Anyway, we were chatting about what we do for a living and I mentioned starting this new blog about Crohn’s disease in conjunction with my Origami Owl business. The SECOND I mentioned I had Crohn’s disease I saw her mood change. I felt like I had just put a damper on the situation even though I was talking about this really cool meaningful thing I wanted to do with my business to raise awareness. Essentially turning my struggles into a good thing to help others! It didn’t seem to matter though. I got the sense from her that she was now uncomfortable or it was just “too real” to talk about. Which is just a shame.

This isn’t the first time I have experienced this either. I have noticed this on a few different occasions. I feel immediately disconnected or like I’m an alien all of a sudden, because they don’t understand how to relate to me. And all I did was answer a question they asked me! What their reaction really shows me, is that everyone responds to things differently based off of their own life experiences. I’ve come to understand that some people just don’t know how to react when confronted with serious issues like chronic illness. Perhaps they just haven’t had to deal with something like this before, so they are unsure or uncomfortable about how to proceed. And you know what– that isn’t a problem for me, it’s a problem on their end. I know I’m perfectly comfortable with the fact that this is my life now, so it certainly isn’t a problem inside of me. I don’t like it but I’ve accepted that I will have Crohn’s disease for the rest of my life, and I have no problem talking about it because well… it’s part of me now. Just like my big toe is a part of my foot. It’s fact…it’s there and it isn’t going away.

Do I get uncomfortable every time you talk about your 3 kids?! No. I’m not a mom, but I am happy to hear about that part of you and your life! And I’m happy for you and your accomplishments! Why should it be any different when applied to my life? Just because I have a very different life that involves a chronic illness and my world revolves around managing symptoms? It’s my life, none-the-less. I can’t control that. This is just the hand I have been dealt and I’m trying to make the best of it.

Sadly, it makes me want to talk less about my Crohn’s life, because I don’t want to feel like a buzzkill. No one does. But this is me y’all! Crohn’s is a big part of my life whether I like it or not. This is what I want to do with my new lifestyle is share! I want to spread awareness and help other women! Part of being an advocate for women with Crohn’s disease means I will run into people that can’t handle “real talk”. And that’s okay. That’s on them, not me.

So NO WAY will I quit sharing what I am passionate about! Sharing helps me get through my struggles and it helps others know they aren’t crazy or going through all this stuff alone! What really counts is when I share my story and my words fall on someone that GETS IT!! I’m doing this for those people! For YOU! So it’s totally worth it!! Even if it is just one person that reads this blog and I never even know about it—it’s worth it!!

Anyway, I think the lesson here is to LET GO of any feelings that you are the problem, ladies! That is not the case at all! Instead surround yourself with people that get it! You will see that there is nothing wrong with you at all. You just need to be surrounded by people with like minds, going through the same journey as you! Engage with other women that have Crohn’s disease and you will be amazed! You are always welcome to reach out to me! I also invite you to join my brand new Facebook Group that is an online community just for women with Crohn’s disease. We will share, laugh and keep each other thinking happy thoughts!

Bottom Line–We can’t go through life isolating ourselves or de-socializing because we don’t feel understood by those around us. That’ll drive ya crazy! And we deserve a better life than that! Connect with the online IBD community on Twitter, Instagram, Facebook, wherever! Ongoing support from people that get what you are going through is crucial in coping with this life.

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