Posts tagged confessions of the chronically ill
Tips For Getting The Best Care | From ER Providers When Chronically Ill

If I were to ask anyone who lives with a chronic health issue to make a list of places that they try to AVOID AT ALL COSTS, I believe could safely bet my monthly salary that their local EMERGENCY ROOM would be at the top that list. Not only because of the absurdly long wait times, and the potential exposure to who knows what kind of disgusting germs that could be floating around. But throughout this article I think you will find help with the ten tips I provide to make your next Emergency Room visit run a little smoother.

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Facial Pain Awareness Month | Trigeminal Neuralgia

October is Facial Pain Awareness Month which include the condition Trigeminal Neuralgia. As Trigeminal Neuralgia is quite possibly one if not the most painful facial conditions known to man I knew I had to feature it and help to raise awareness of the condition. In honor of it being Facial Pain Awareness Month I did an interview with my very dear friend Carol Walters, who struggles with Trigeminal Neuralgia. So below you will learn what trigeminal neuralgia is and how her daily life is impacted. If any of you reading this relate to journey or her symptoms please make an appt to get in with your doctor to get your symptoms checked out.

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Friendship, Family & Chronic Illness | How To Provide Support

Chances are high that if you have a friend or family member who lives with a chronic illness, or was recently diagnosed, that you don’t really know what you can do to help.  This is not meant to be a dig towards you by any means. But most able-bodied people struggle because they don’t really know what to say or do. They feel this way because they can’t really relate to what we are feeling. They can’t relate to the chronic pain, or life altering fatigue. In fact, they often wonder if there is actually anything that they could say or do that would make any difference.  They fear hurting their friend or family member so they pull away. This is not deliberate, but it is a reflex. So this is an effort to share some tips and ideas to help prevent that and help friends, family, and those with the chronic illness. 

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Fall Brings More Than Changing Temps | What You Need To Know For Cold & Flu Season

Temperatures are starting to drop, leaves are changing and pumpkin spice is everywhere you look. For most fall is the best time of year, a time that brings football, hoodies and Halloween. But for those with chronic illness or who are immunocompromised fall means something completely different. Fall means that the cold and flu season is upon us and we have to be more vigilant than ever to make sure we protect ourselves from illness. It almost seems unfair that we have to say goodbye to the wonderful summer temperatures and longer days, and also welcome the cooler temperatures that often cause pain and bring illness.

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Opening Up About My Battle With Depression

No matter how much support you have or how together you think you are not immune to bouts of depression. No matter how much money you make or if you have the “perfect job” you can still fall victim. It doesn’t matter if you are white, black, green or purple, depression doesn’t discriminate. None of the things mentioned matter. You may feel that you have given yourself all the tools one will need and that you know what to watch for and what to do when it happens. But chances are that’s not the truth. Because depression is sneaky, it sneaks in when you least expect it and stays longer than any unwanted house guest ever would. You can have all the tools available and ready to combat the arrival, but when it sneaks in sometimes it’s hard to realize how bad things are until you’re in to deep to fix things on your own.

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Tips For Dating With Chronic Illness

As I near my mid thirties and have yet to meet my lifetime mate, dating is something that is on my mind more and more. Most of my friends have coupled up and are starting their families and I am growing tired of always being the odd man out or the only single one.  But dating is just such a daunting task. In the world of the normal able-bodied person dating can be overwhelming and frustrating, so many games being played, including guessing what the other person is thinking or feeling.

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Samantha Bowick: Author & Advocate | Alpha-1 Antitrypsin Deficiency

Hi everyone! My name is Samantha Bowick and I’m the author of two books Living with Endometriosis: The Complete Guide to Risk Factors, Symptoms, and Treatment Options and Living with Alpha-1 Antitrypsin Deficiency: The Complete Guide to Risk Factors, Symptoms, and Treatment Options. I decided to write Living with Endometriosis because I was going through so many different treatments for endometriosis that I really couldn’t find much information on at the time and I felt like it could possibly help others who were going through the same thing.

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I Just Got Diagnosed… Now What??

It’s been months.......maybe years. You’ve been suffering alone because no one understands what’s been going on. The doctors have been shuffling you back and forth because they don’t know what to do with you. You’ve heard “Well.....maybe it could be this. Or it could be that!” However they are really just grasping at straws and making guesses because no one really has any concrete idea. Until you finally come in contact with that ONE doctor who follows that ONE path and found you a DIAGNOSIS! Which feels like you won the lottery for a bit. But now what?? 

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What We Wish You Understood | Working With Chronic Illness

Living with a chronic illness is hard and comes with many challenges. Including challenges most never thought they’d face, especially at such a young age. For instance, when I graduated from nursing school I never dreamed that I would only be able to work for ten years before I had to leave my job to care for myself. That being said when you think of chronic illness you wouldn’t automatically think of the fact that many who suffer from a chronic illness will have to leave the workforce long before they wanted or planned to. But it’s true, sadly, many end up having to leave their dream job or the career they loved to stay home and take care of themselves. Which in and of itself brings up challenges. The biggest being that most around us don’t understand us or our decisions to leave the workforce. Or what that looks like as far as what we can and cannot do now that we are no longer working.

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Focus On The Fight | Epilepsy

Welcome to Focus On The Fight, a series of interviews that will be posted weekly, focusing on a blogger/advocate, their health and their advocacy work.

This week we meet Christalle, and we will highlight: EPILEPSY

Before we dive into the heavy stuff, please tell us all a little about yourself outside of your health! About your family or your hobbies !!

Christalle Bodiford is an artist, writer, and adventure seeker. As an entrepreneur diagnosed with epilepsy, Christalle brings a unique perspective of empowerment that inspires others to embrace a positive mindset and live with purpose. When she's not writing or advocating, Christalle enjoys puppy snuggles with her scruffy terrier and outdoor adventures with her husband.

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Living With Chronic Pain | Life Update

The last two months have probably been some of the hardest months I’ve had since this crazy journey started. I've been in more pain and for longer than I ever thought possible. I have said too many times lately but I feel like if it has a name it has probably hurt at some point. Literally everything has hurt from the big things like my back and hips, to the smaller things like my hands and fingers. There has even been time when my HAIR and SKIN hurt.

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Social Media | How It Is Beneficial To The Chronically Ill

Social Media…..We always hear about the negatives viewpoints and aspects of each platform. Like the fact that social media is full of highlight reels rather than what’s actually real. We only get to see what those influencer types choose to show us, which is usually only the highlights. Or the fact that the internet is full of what we will call “keyboard warriors,” who spew all kinds of nasty hatred into the comment section of any social media platform. They say things that they would NEVER say to someone’s face all because they can hide behind their screens or keyboards without any real consequences. While those are well known facts about social media, what isn’t well known, or often spoken about, is the fact that social media is a HUGE blessing to those in the chronic illness community. I’ll wait while you pick your jaw up off the floor. Did I really just say that social media is a blessing????

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Focus On The Fight | Psoriatic Arthritis

Welcome to Focus On The Fight, a series of interviews that will be posted weekly, focusing on a blogger/advocate, their health and their advocacy work.

This week we meet Vickie, and we will highlight: Psoriatic Arthritis (PA)

Before we dive into the heavy stuff, please tell us all a little about yourself outside of your health! About your family or your hobbies !!

I am married with two grown sons and a five year old grandson. My favorite hobbies are reading and fishing.

What Chronic Illness (en) have you been diagnosed with? Which one will you focus on today?

I have psoriasis and psoriatic arthritis

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Focus On The Fight | Hereditary Lymphedema

Welcome to Focus On The Fight, a series of interviews that will be posted weekly, focusing on a blogger/advocate, their health and their advocacy work.

This week we meet Jordyn, and we will highlight: Hereditary Lymphedema aka Primary Lymphedema.


Before we dive into the heavy stuff, please tell us all a little about yourself outside of your health! About your family or your hobbies !!

I love to cuddle my service dog, read books, blog, crochet, share my story online, and talk to my friends. I also especially love to garden when it's summertime.

What Chronic Illness (es) have you been diagnosed with? Which one will you focus on today?

Hereditary Lymphedema Erythromelalgia Ehlers Danlos Syndrome Type 3 Chronic Fatigue Postural Syndrome Orthostatic Tachycardia Syndrome Polycystic Ovarian Syndrome Daily Migraines Asthma MTHFR mutation. Today I will be focusing on my Hereditary Lymphedema.

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Grieving Chronic Illness

Grief is an interesting emotion that can be felt for any number of reasons. To most people, grief is associated with the loss of a loved one, or the loss of a marriage or relationship. Most wouldn’t think that one would grieve what they’ve had to give up. Or the loss of a life once lived. But that’s exactly what I think of when I think of grief. I think about the fact that I am mourning the life I once lived and the goals I once had. The life I had before Chronic illness rocked my life. 

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The Truth | It’s Okay Not To Be Okay

It’s okay......it’s okay to struggle, it’s okay to be real, it’s okay that you don’t always have your shit together. Life’s messy, especially when you live with some kind of chronic illness. Life isn’t all roses and champagne. Instead it’s full of messy houses, and dirty dishes. It’s full of down days where you can’t get out of bed, and high pain days. Life is real and that’s OKAY. When we live in a world of highlight reels and instagram perfect pictures it’s easy to forget that we live messy lives.

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Focus On The Fight | Inflammatory Bowel Disease

Welcome to Focus On The Fight, a series of interviews that will be posted weekly, focusing on a blogger/advocate, their health and their advocacy work.

This week we meet Collin Wong, and we will highlight: Inflammatory Bowel Disease, aka Crohn’s.

Before we jump into the full interview, Collin, please tell us a little about you outside of your health! Tell us about your hobbies or family!

I am a soon-to-be freshman at Case Western Reserve University, with a focus on pre-med. In fact, I hope to be a pediatric critical care physician one day! In my free time, I enjoy doing graphic design and playing the piano.



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Don’t Feel Sorry For Me

I feel so bad for you.  Thanks, but there is no need for that, it is what it is..... Sometimes life hands you things you just can’t change and you just have to deal with it. Being diagnosed with some form of a chronic illness is no different. I know it seems like living with Lupus and chronic pain sucks and many days it does, but it’s no different than living with anything else. It is a PART of me, but it is not ALL of me. Just like being married is part of you, or being a mother. Yes, it’s a little different, but it’s also the same.

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Look Behind The Smile….

We all have heard the saying, “A picture is worth a thousand words.” This is absolutely true.  I have learned that as someone with a chronic illness, to look deeper than the surface that is presented.  The smile that is flashed for Instagram or Facebook. If you look behind the smile and examine the eyes, wonder what is deeper and look you see a deeper story and not the facade presented to the world.  

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No One Asked For This

Let’s just be really honest. NO ONE ever asks to live with pain. Whether it be the short term pain of an illness or Injury….

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