Before I Got Sick

The following is a piece that would simply not exist without the knowledge you have all given to me. I dedicate these words to all of the generous souls who have let me inside of their personal worlds. On the good days… and on the worst days of their lives. This is my love letter to all of the people who have made an impact on my personal journey.

Before I got sick

I didn’t understand what health was. I had no idea what Crohn’s disease or ulcerative colitis was. I took what I had for granted – I never knew any different. “Health is never valued until sickness comes.” It’s true. Until you get an eye-opening experience or diagnosis, you tend to take things for granted.

I didn’t know what the word “remission” meant, other than remission from cancer. But Remission is real. I capitalize Remission because it is just as more important as any disease. But remission is REAL, and people experience it. I will, too.

I could spend the night at someone else’s house without worrying I would wake up in a panic, sick to my stomach.

I never had to worry about pulling over on the highway puking my guts out or keep an empty grocery bag handy in case I can’t stop going 70mph on the highway, but such is life living with GI diseases.

I didn’t feel guilty about canceling plans.

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Read the rest of my article here: Before I Got Sick

What Types of Doctors Should I See with IBD?

For many of us living with IBD, it seems like our care team is bigger than our immediate families. But there are very important reasons to have these specialists on our teams. Do you know which doctors you should have on your team and why? Below we give a few examples of why it’s important and how they can each individually help us as patients to live a successful and proactive life as a patient.

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Read the rest of the article here: What Doctors Should I See?

some days are better than others

there’s been some silence over the last few weeks on my part. it’s not that i dont have anything particularly special to say.. the truth is, it’s hard to post something positive when it’s not truly how im feeling and it’s not the state i’ve been living in.

i dont want to broadcast only and bring others down, when all small victories should be celebrated. but that’s just not the case and lately it’s very hard to be transparent. i desperately try to balance out my posts to encourage and help others, but sometimes i need to back away and just decompress, because going quiet is the only way i know how to cope. i know that’s not the greatest way to handle things, but we’re working on getting me more stable in that way.

a few weeks ago, after my endoscopy, when i had my esophagus stretched in quite a few places to help me swallow. it helped for about 2-3 days, but again i started having awful choking and vomiting episodes. when i would try to eat solid food, i would chew, chew, chew and still choke. and when things would go down, they would come up about an hour later – liquids included.

so i had a follow up with my GI team and they said that in my biopsies, things looked okay but my muscles were having a very hard time doing their job from my esophagus to my stomach, thus the nausea and vomiting. what i wasn’t expecting to hear was that i would be spending more months with my picc line in than we had originally planned. and now, i am on a strict blended and juiced diet until my tract sees massive improvements.

here is where my guilt steps in.. another summer spent not eating food. sticking to the same frozen foods, blended and or steamed and drinking all of my calories in order to try to get my muscles functioning enough to eat more of a solid food diet vs. soft mechanical or pureed diet.

immediately, you think of all the things you can’t do, right? mainly because of my central line. ive recently fought many infections, one in my face. because im constantly massively dehydrated, im still on 3-4 IV infusions per week because my body just cant keep up with fluid intake. with and increase in temperature here in WI lately, and more combos of antibiotics, i can’t go out in the sun for lengths of time. i dehydrate so much quicker in this weather and im truly exhausted but 12pm. i sleep from 12-15 hours a night right now because my body is so exhausted. this is quite the opposite of my norm of 3-4 hours of sleep a night.

because of my picc line, i cant get it wet, which is no easy task. by the time im ready for a shower, im exhausted and spent most of my time sitting in the shower on a chair. picc lines also mean no pool and lake time. im desperately wishing my current therapies will get me back on track in order to have my line gone by mid july to celebrate my birthday, but that doesn’t seem to be the case. for the time being, ill continue therapies via IV for the next 2 months and see where things have improved with my esophagus & gut.

right now, im traveling to the hospital for treatments and various appointments 3-5x a week. the weeks ive been there 5 days.. they get long. im thankful that i have support that sends notes of support. i have been blessed the past year, as i approach my next birthday i really have faith things will be better than they’ve ever been.

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Importance of Maintenance Therapy for Mental Health in IBD

I try to be as transparent as I can when I do find myself actively blogging, but there will always be things that I choose not to share, for many reasons. I’m working on this, while at the same time maintaining my privacy.

Without help from friends and professional counseling and therapists, I would not be where I am today. Please do not be afraid to ask for help… before you really need it.

Part of my advocacy work is dedicating time to making our patient needs better known by our care providers that we need more of an action plan when it comes to mental health. It will NEVER be easy for any patient to walk away with a diagnosis that changes your life immensely and say “alright, well now I can move on with my life.” It’s just not reality and, many times, social media(s) are not our reality either. As a public health advocate, I choose carefully what I put on my feeds, to be as sincere and honest as possible. Within the last year, I’ve struggled. A lot. And that is OKAY. I’m receiving help, I’m on my way back to “normalcy,” and re-acceptance of what makes me who I am.

“Don’t take this all on by yourself”

 

Read the rest of this article at:  https://inflammatoryboweldisease.net/living/therapy/

assorted doctors tools

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