Marie’s Chronic Illness Journey: Finding My “New Normal”

Marie’s Chronic Illness Journey: IBD and Crohn's disease

IBD, Perianal Crohn’s Disease, Abscess, Fistula complications, Sepsis, Crohn’s Arthritis, Pyoderma Gangrenous, DVT, blood clotting disorder, low blood pressure, Tachycardia and an irregular heartbeat with palpitations, Migraines, Body Dysmorphia, Depression, Anxiety, Agoraphobia, PTSD, hair loss, insomnia, self-isolation.

No, you didn’t just read a list of side effects from a newly FDA approved medicine. What you did read are just some of the things I have to battle with and continue to overcome daily. It’s unfortunate, but I can continue on with that list for quite a while. Being diagnosed with a chronic illness at 27 is utterly perplexing, as I am sure it is at any age. You live this life and you have your plans, goals, aspirations, and, at the flip of a switch, that all changes. I was completely blindsided and continue to be with every new diagnosis.

Finding my “new normal”

Once I was diagnosed, I would hear from other IBD patients and medical professionals about the importance of finding your “new normal”; a phrase I found to be so true and necessary, as I myself was discovering what that would mean for me. My struggle came into play when I realized no one around me seemed all that open about the process that preceded this new life I would be creating for myself. With the daily challenges associated with chronic illness, figuring out how this new life looks can feel as if you’re driving at night in a rainstorm, with your headlights off, just praying you’re on the right side of the road.

I had never really been exposed to the chronic illness lifestyle. Even though it has now been 2 years, the chronic part is still something I struggle with regularly. It’s easy to forget that this illness is for life. It definitely doesn’t help when the “able” ask you if you’re better yet. Especially, when after every procedure, that thought passes through your own mind, only to disappoint you again because you know that “better” will never be a permanent option.

I was beyond lost at the beginning of my chronic illness journey. I was scared and I felt alone. I was the only one in my world who could speak my language and everyone was staring at me like I was a circus clown. As if the chronic pain wasn’t enough, I was now facing emotional turmoil as friends, who I considered family, began to drop out of my life. I was left to fend for myself the same instant everything I knew changed; with only a few true friends remaining by my side to help navigate the most difficult challenges I’ve ever faced. True colors began to shine in moments of crisis and I was seeing rainbows.

Highly medicated and awkwardly positioned in my hospital bed, I felt as if I was being tested. I can only describe my time in my post-op, shared-room as a character-building experience. I squinted one eye shut to combat the drug-induced, kaleidoscope vision so I could begin to research how to achieve this “new normal”.

Finding support

I stumbled across the Crohn’s and Colitis Foundation and sent them an email. Once discharged from the hospital and successfully escaping the grips of my home nurse, I managed to make it out to a few events. I started meeting people, people like me, only they were more informed and experienced with their place in their chronic illness journey. It was through these gatherings that I became connected with my mentor, who now is my closest and dearest friend.

We began going to support groups together and she got me to see a psychologist who specialized in IBD. I had a connection with my mentor-turned-best-friend that I’ve never experienced before. I wasn’t aware that relationships like that were real. I finally wasn’t alone on my planet where no one could figure out what I was saying. I was the least lonely I had ever been, and we were in our very own world where we finished each other’s sentences, showed up for surgeries, and answered the phone late at night just because the other couldn’t sleep. We support each other in every aspect of our lives and I slowly began to realize the steps needed to be taken to get to my “new normal”.

It was through our relationship and her perpetual support that she encouraged me to stop hiding behind my fears and do what I love. Out of this came The Lemon Blog, my passion project. The Lemon Blog is a place that supports all abilities and provides encouragement, mentorship, community, advice, an ear to listen, or even a shoulder to cry on when needed.

Starting a blog when coping with IBD and Crohn's disease

I cannot stress enough the importance of having a solid support system. Sadly, not everyone has that available to them, which is why The Lemon Blog has become so important to me. Not only have I made amazing connections with these warriors, but we check on each other regularly, we cheer each other on, offer support when needed, words of encouragement when down, and have some pretty good laughs along the way.

People like Meena at The Unchargables help pave the way for the rest of us and I am honored to be writing this for their site. Thank you for asking me to share my story. I encourage everyone to share their own; you never know who it may help. I’d love to see you over at thelemonblog.com or shoot me a direct message through our Instagram @the.lemon.blog – we’d love to have you be a part of our Spoonie Community and help you to discover you own New Normal.

About the Author:

Marie is a chronic illness warrior who runs The Lemon Blog, which is her passion project. Marie created this blog with the aim of supporting fellow chronic warriors and helping them find their own “new normal”.

November 23, 2019November 21, 2019

It’s Only One Day, (But You’re a Superhero!!)

Thinking about things like upcoming holiday gatherings with large crowds of people can bring on anxiety for people who don’t even usually have anxiety issues. Face it, the holidays are stressful. When you have bowel troubles, being in crowds, coupled with food to which you simply cannot say no, and a sketchy or unknown bathroom situation can make the already “standard level anxiety” explode into a world of unknown possibilities that would make Willy Wonka’s world of pure imagination seem dull. I spend the holidays with Crohn’s disease and anxiety together, and it always makes me wonder if I am on Santa’s naughty list. I seriously wish I would just get a lump of coal instead.

I spend the holidays with Crohn's disease and anxiety together, and it always makes me wonder if I am on Santa's naughty list. I seriously wish I would just get a lump of coal instead.

Christmas Before Chrohn’s Disease

When I was a little girl, we always spent the holidays at my grandparents’ house. It was a huge, old, three-story home, complete with a creepy basement. There were lots of wooden pillars between each room and a beautiful wood and marble tiled hearth, with a mirror around the fireplace. The stairway was located down the hallway between the family and living rooms. The stairway “secret passageway”, as I remember calling it, mysteriously somehow led into the kitchen, the basement, and the upstairs area where the bedrooms were, all behind the same magical door.

The bathroom was upstairs, also. The one bathroom. The one bathroom in the whole great big house. The one bathroom that all of us, and there were over fifty people, had to use when we gathered for the holidays at Grandma and Grandpa’s house. There was even a little couch on the landing area just up the stairs that sat outside the bathroom, because you were inevitably going to have to wait for it to be your turn. As a child, this didn’t bother me at all. I used the time to explore the upstairs bedrooms and look around at all of the things I wasn’t allowed to touch. I was particularly interested in my Grandpa’s ship in a bottle – I still don’t know how that thing got in there!!

Crohn's Disease child adult focus chronic illnes holiday strategies

Christmas with Crohn’s Disease

Now, if I had to go to a one bathroom house for any kind of get together, I would panic. There is no way I would be able to negotiate any kind of celebration with that many people and only one bathroom. Even if there is a super comfy couch to sit on and wait my turn. Because of Crohn’s disease, I can’t wait. When I have to go, I have to go immediately. And the thought of just being somewhere that I don’t have immediate access to restroom facilities creates a level of anxiety that freezes me in my tracks and keeps me from doing so many of the things I want to do. Even if the people are family and understand my situation, it doesn’t make the anxiety stop – not even a little bit. It does make me wish I just got a lump of coal instead, though.

Holidays & Social Anxiety

The feelings of “what if this,” or “what if that,” happens regarding my bowel issues are one thing – and a horrifying thing at that. But then there is the social anxiety that I have to contend with on top of bathroom anxiety. I don’t like large crowds. I don’t like loud noises, especially sudden or startling noises. I don’t like to hear small children or babies crying uncontrollably. It is very difficult for me to make small talk, even if it is with people I know and genuinely enjoy being around. It’s actually terrifying for me. And I cannot explain what it is, or why it is, in any way that makes sense to someone who has never felt this way. It’s just emotionally and physically painful. I always try to fend off these feelings with humor and sarcasm, laughing so I don’t appear so uncomfortable. But deep down, I’m in very real agony. I’ll take that lump of coal now instead, please.

Crohn's Disease social anxiety family stress Holiday strategy

A lot of people say they get it. I often hear, “I understand, I don’t like crowds either,” “I don’t like loud noises,” or “The screaming kids get on my nerves too.” No, that’s not exactly it, but I appreciate the sentiment – sort of. Other times I’m met with a downright denial of my feelings altogether, “It’s just one day, you can get through it.” I honestly wish it were that easy.

Anxiety around the holidays for me is two-fold because not only do I fight with the anxiety of being around a lot of people, I am also fighting the fears about the bathroom situation at any given time. It’s been years since we all gathered in the one bathroom home of my Grandparents. My family gets together now in places with multiple bathrooms, which helps ease that problem just a little, but bathroom anxiety never truly goes away when you have bowel problems.

Well-meaning Relatives…

There is always that kid that pounds on the bathroom door even though they just saw you go in there. There is always that super overly concerned, but well-meaning relative that asks you if you are okay all three times they see you come out of the bathroom. There is the other relative who automatically knows how you feel and tries to empathize with you because they have a lactose issue or a spastic colon. So they have to make a huge deal about how alike the two of you are – usually loudly and in front of everyone – doling out the same ridiculous advice they give you every year that is sure to “cure” all your problems. And then there is the jokester, who tries to make fun of you going to the bathroom again and again. Even though they are trying to be funny to make you feel less self-conscious, they always end up making you feel worse. But hey, it’s only one day. It takes several weeks to mentally prepare and four days to recover from that one day, but, it’s only one day. Lump. Of. Coal. Please

There is always that super overly concerned, but well-meaning relative that asks you if you are okay all three times they see you come out of the bathroom.

Not Just One Day

For me, and so many like me with anxiety, it isn’t just one day. It isn’t just one hour. It isn’t just sucking it up and doing something you don’t want to do like emptying the cat litter or getting that pesky flu shot. It is literally all the days leading up to that one day. It’s the fret and worrying and concern and overthinking that is involved in mentally trying to prepare for every possible scenario that might occur in that one day. It’s also knowing you will never be fully prepared enough, so you start freaking out about that. Then it’s the actual event itself, which is almost never as bad as it seemed like it was going to be all the days, weeks, or sometimes months before that you worried about it. Except, even knowing that doesn’t ever stop the pre-worry. It doesn’t end there, though.

It’s also all the days after the events suffering from extreme exhaustion and the need to come down from the high levels of stress and anxiety and all the interactions with other people. The physical fatigue and genuine body pain from having to endure such a distressing ordeal, coupled with the havoc that it all wreaked in my gut, puts me out for days afterward – even if it is just having dinner with my family at Christmas. It’s all of those days and it’s exhausting. I feel that anyone who has to deal with chronic illness in any form, on top of the normal holiday stress, deserves superhero status and a sweet cape.

I feel that anyone who has to deal with chronic illness in any form, on top of the normal holiday stress, deserves superhero status and a sweet cape.

It’s not about not wanting to be around my family. I desperately want to be around them because I rarely see them. I desperately want to spend time laughing and eating and having a good time enjoying the holidays, or any other celebration, without a care or second thought about anything – just like I did at my grandparents’ house when I was little. But now, anxiety happens. I can do my best to control it, I can take my medication, I can do my self-care, and I can be funny and pretend I’m okay. But the bottom line is the anxiety is still there. The irrational fear is still there. The “what if’s” are still there. I get that, technically, it is just one day – except it isn’t. I do understand what is happening. I even have insight into how illogical it is. That doesn’t make it stop, though. I wish it were as simple as being able to tell myself that it’s just one day and I’ll get through it. Seriously, where is that lump of coal instead?

This, my friends, is what makes people with chronic illnesses so very special. We really are superheroes. Everyday superheroes endure these kinds of situations, mostly silently, and we do it well. We’ve done it for years and we will continue to do it because that’s what superheroes do. That, and we don’t really have a choice. So let’s go don our invisible capes and get through our holidays and remember, that when it’s all over, we don’t have to do it again for a whole entire year! Now, isn’t that more fun than just getting a lump of coal? Eh, I’m still not sure. Happy Holidays!

About The Author

March 9, 2019November 24, 2019

The Internal Struggles We Face with Multiple Chronic Illnesses.

Chronic illness is like eating potato chips – you can never have just one. At least that’s true for me. I was diagnosed with Crohn’s Disease in 1995 and since then I have had an avalanche of multiple other chronic illness diagnoses. From Depression and Anxiety to Fibromyalgia and Bile Salt Malabsorption to Irritable Bowel Syndrome and Insomnia. I think the chronic nausea and diarrhea are there just for fun. I might have even missed a few, but you get the idea. I have a gamut of chronic nonsense happening writhing my body.

The Day to Day: What will flare and what won’t?!

Sometimes everything can remain in check. My bowels remain relatively calm and only give me somewhat minor issues. My depression and anxiety are held at bay with more positive things that might be occurring in my life. My insomnia gets tired and finally goes to sleep so I can rest. And I can sometimes even manage to move just enough, or just little enough, that my Fibromyalgia is mostly quiet and I don’t hurt as much as I usually do. Though these moments are super rare, they do occasionally happen. It’s never for long and never, ever predictable, but the moments do occur. And in those moments I feel like what I imagine a healthy person feels like; or at least someone less like myself.

Then there are the days when everything works against each other to cause complete and total anarchy in my body and brain. A typical day like that is one of the toughest because I’m not only fighting one of my chronic illnesses, I’m fighting all of them at once. When these days happen the illnesses are just continually feeding off of each other. It’s like fighting a Hydra – cut one head off and three more grow in its place. These days are challenging and just as unpredictable as the really good days, but somehow they happen more often.

I'm not only fighting one of my chronic illnesses, I'm fighting all of them at once. When these days happen the illnesses are just continually feeding off of each other. It's like fighting a Hydra – cut one head off and three more grow in its place. These days are challenging and just as unpredictable as the really good days, but somehow they happen more often.

Inside My Mind and Body with Chronic Illness

Follow me down this rabbit hole of chronic illness overload to experience what my body goes through, and how it talks to itself.

It usually starts in the early hours of the morning between 4:00am and 6:00am.

Brain: “Wake up!”

Anxiety: “Hey remember that feeling you get in the pit of your stomach when you’re going down a roller coaster? That weird adrenaline rush feeling? Here you go. Do you feel it?”

Stomach: “Ahh! What the heck??!!”

Body: “Please, I’m tired. Let’s sleep. Nothing is going on. I’m safe. I’m warm. I’m okay. Just sleep. Please.”

Anxiety: “Nope. We have things to worry about.”

Body: “Don’t wanna. Wanna sleep.” Tries to roll over but realizes it hurts. Elbows and wrists are stiff and achy. Legs feel heavy.

Brain: “Nope. Not happening.”

Bowels: “Hey, guess what’s up? I am! And I gotta go. NOW!”

Brain: “Can’t we ignore you, bowels? You never play fair.”

Bowels: “No way – gotta go – NOW!”

Body: Manages to sit up. “Ouch, my back!”

Body: “Must to run to the bathroom.” Quickly realizes everything hurts. Screams silently from every muscle and joint but knows we must make it to the bathroom or we’ll have an accident. Curses bowels.

Bowels: “We’re done. For now. Heh, heh.”

Body: “Please let’s go back to sleep now. Everything hurts.” Manages to lay back in bed and get covers on top of me.

Brain: “You can try but it isn’t going to work. I’m getting cranky.”

Anxiety: “Remember that thing that you said but you should have said this instead? Let’s think about that and replay the conversation twelve different ways over and over even though we know it will never happen. C’mon, it’ll be fun!”

Brain: “No, that’s dumb. Don’t think about anything. Just lay here and be quiet.”

Body: “Yes! Let’s sleep more.”

Bowels: “NO! Let’s go again!”

Body: I’m so tired. I hurt so bad. Okay, I guess we’re doing this. Throws covers off and runs to the bathroom again.

Brain: “Maybe I am tired now. But now I hurt. I’m going to ache and throb now.”

Depression: “I hate everything. I wish we could just hide under the covers and never get out of bed again. Like, ever.”

Body: Drags self back to bed. Attempts to get comfortable.

Stomach: “Hello? Yes, I still hurt. I’m still here. Here’s a bad cramp because I’m feeling left out.”

Anxiety: “What if…”

Brain: Throb, throb, throb.

Body: “Drink water. I need water. I’m dehydrated. Get up and get water.”

Stomach: “Don’t do it. I’ll reject any sort of hydration or nutrition you give me.”

Bowels: “If Stomach doesn’t reject it I will. Oh hey, let’s go AGAIN!”

Body: “Ugh!” Runs to bathroom again. “I’m so tired. I just want to lay down on the floor. That bathroom rug looks comfortable. Let’s lay down.”

Brain: “That floor is going to hurt so bad. You might get down there but how are you going to get back up?” Throb, throb.

Bowels: “Oh we’ll make sure she gets up. Heh, heh.”

Body: “Fine, forget the floor. I’ll go to bed.” Finally gets back to the bed and gets somewhat comfortable. “Why do I hurt so bad? I did nothing yesterday that would cause this pain. I need a hot shower. Hey Bowels, how long until the next …. oh!” Runs to the bathroom again.

Bowels: “Yeah, we’re doing this every fifteen minutes. No shower for you today!”

Body: “Meh, I’m too tired to shower now anyway.”

Brain: “What time is it now?” Throb, throb. “Oh, we’ve only been awake an hour? It’s going to be a long, bad day.” Throb, throb, throb.

Depression: “I’m so tired of this. No one possibly understands how bad this is. No one cares. This isn’t living. This is terrible. If we lay here still enough can we just stop breathing?”

Anxiety: “But what about all the things you need to do? What about all the things you have done? Let’s stop and reassess everything in your life right now. Hey, remember that time in third grade when…”

Brain: Throb, throb, “No please, no. Just everyone shut up! I’m hurting.” Throb, throb, throb.

Body: “Hey, I’ve been hurting and just want to sleep but no one is listening to me!”

Inside my mind and body with multiple chronic illnesses. Sometimes all I want to do is sleep!

Stomach: “I don’t feel so good either. Brain pain is making me feel sick. I think might throw up.”

Body: “Oh no, I cannot handle retching right now. It’s going to hurt so bad and it already feels like someone took a baseball bat to my back. Let’s try to lay back down.”

Bowels: “Haha! No!”

And so on and so forth throughout the day as the never ending cycle of what happens when all my chronic illnesses come together and work as one, slowly feeding off of each other in another attempt to destroy me. It’s excruciating and it’s exhausting. But somehow, every single time I make it through. These days are the worst, and even though at the time when my body is continually arguing with itself, I somehow always know that I will make it through. The next day might not be so bad, or the day after that. So I hang on, just one more day. Because eventually, I will get one of those good days where all my chronic illnesses play nice with each other. And those are the best days.

Jenni Lock is the creator of Jenni’s Guts blog and writes about her journey with intestinal nonsense and other chronic health issues. Her sense of humor, sarcasm, and willingness to talk about the things most people just think are all part of her charm. Jenni is a nurse, however is unable to work due to struggling with Crohn’s disease, Irritable Bowel Syndrome, Bile Acid Malabsorption, chronic nausea and diarrhea, Fibromyalgia, Anxiety, Depression, Insomnia and PTSD. Learn more about Jenni and her guts at http://JennisGuts.blogspot.com.

June 18, 2018December 10, 2019

Positive Side Effects of Crohn’s Disease

I am about to make a bold statement here, but bear with me: being diagnosed with Crohn’s disease has actually improved my life for the better. No, I am not delusional. I am also not blind to my bad days or the tests results that come back not as optimal as I had hoped. It’s getting through these rough days that bring me to the conclusion that Crohn’s disease has some positive side effects. Here is how I came to this understanding.

The Bad Days Make Me Appreciate the Good

If you have a chronic illness or any kind of chronic pain, at some point you have probably dreamed about a life in which you don’t need to think about your condition every day.

For example, with Crohn’s disease I need to consider what food options will be available if I’m going to be out all day. I may need to carry snacks or even meals in a cooler bag. If I’m in a flare I’ll want to make sure there is a bathroom nearby. These things can be a drag sometimes, but they are necessary.

When I am feeling great and flare-free, the appreciation I have for my high energy and working digestion is overflowing. It sounds funny to be grateful for normal bowel movements, but it’s true! I don’t let the miracle of these healthy days get past me without being grateful and enjoying them.

I Am a Voice and Example to Help Others with Crohn’s Disease

You don’t need to be a blogger to make a difference, but that is where my energy funneled several years ago. Yearning for a way to connect with other people with Irritable Bowel Disease (IBD) and especially those using nutrition to boost their health, I went online!

Over the years my blog readership has grown and I receive messages from people who are grateful to see my story as it is helping them or a family member. It doesn’t seem like I am doing much; I just share my story as I go. But every time I receive a message like that I realize that seeing me go through a situation whether it be a health challenge or a successful win, gives hope and inspiration to others on a similar journey.

There is power in being a step or two ahead of someone else and showing them the way. Even if you don’t have an online presence, you can support people through in-person or online support groups or find a way to mentor someone newly diagnosed with your condition through a hospital.

I am Constantly Learning

If I had never been diagnosed with Crohn’s disease, my life and the lives of my close friends and family would be not have been enriched in some ways.

You see, after a short while of living with Crohn’s it was clear that the medications and diet advice were not working for my body. I could not maintain a baseline of health and rather kept slipping up and getting sicker and sicker until I landed myself back into the hospital. Thanks to my determined parents, we kept searching until we found more options.

That led us down a path of “alternative medicine.” This was my saving grace. A drastic diet change proved to be beneficial almost immediately. Eleven years later, I have developed not only a great interest in how food interacts in our bodies (which led to a new career for me) but I’ve gone even deeper into using non-toxic clean and personal care products and of course, sharing this information with my loved ones.

In this way, I feel I am much, much healthier than I was before my diagnosis when I ate a lot of junk!

When new research comes out about gut health, environmental factors involved in disease, genetic predispositions, etc., you can bet I am all over it! Educating myself makes me feel empowered. When I am empowered I am in control of how I deal with my health and I can make educated decisions. I never had an interested in health or disease before my diagnosis. I see this as a blessing to communicate the amazing findings being published every day!

Crohn's — Rockin’ This Crohn’s disease thing

In Summary

I won’t deny that chronic illness doesn’t bring challenges. There is pain, medical appointments and expenses, and sometimes limitations to how we live our lives. But, I believe there is something good to be gleaned from any situation. With chronic illnesses being a major part of our lives, I think there is a great opportunity to use it in a positive way.

Whether you share your story with others, go into research, be an advocate, or simply be a good example of how to be grateful in tough times, we can all use our chronic illness in a positive way.

Can you think of one way your chronic illness has resulted in a positive side effect? Share with us below and let’s inspire each other!

Positive Effects of Living with Crohn's disease — Alexa Federico

Alexa Federico is the owner behind Girl in Healing, a blog focused on a real food approach and intentional lifestyle to thrive with Inflammatory Bowel Disease. She has an online practice as a Nutritional Therapy Practitioner to coach others to use nutrition to be well. She loves books, podcasts, walking outside, and warm sunny days.