The Health Activist Writer’s Month Challenge- Day 1

:What?! Three blog posts in one day? This is madness.

Yet, it’s true. In an effort to get back into this and continue to truly try to help others, I’m going to try and participate in this challenge this time. It might not be a blog post every day, so check me out on Instagram because I’ll probably post more there as I’m still learning the ins and outs of WP, and the ‘gram is just easier sometimes.

Without further delay, let’s get started with day 1 of the November HAWMC.

Q: First, Let’s get to know each other! What drives you to write about your health? What do you want other Health Activists to know about your condition and your activism? Reflect on this for 15 to 20 minutes without stopping. 

Hi! My name is Jacklyn and I started this blog as a place to share the struggle I was having facing the diagnosis of Ulcerative Colitis. In 2013 I was diagnosed, and by 2014 I was hospitalized as we were not able to manage the symptoms of my disease. Over the years I have tried multiple medications, diets, stress management tools, support systems and everything I possibly could to fight this disease. When I was given the diagnosis, I was told that there was no cure, but the goal was remission and we would try everything we could do to get there. Eventually I was stable enough to start Remicade, and I have been getting infusions every 8 weeks ever since. I am currently in remission.

The physical symptoms of Ulcerative Colitis are terrible. The pain can be unbearable at times and the complications and side effects from medications, all of these things are important in understanding the disease, but that’s not why I’m here.

My mental health had a bigger impact. I was depressed, anxious, angry and grieving my old life. I was 24 years old and I was just starting to begin my adult life. I had dreams and plans and they were all, it seemed, stolen from me because of the diagnosis of this disease. I had no idea how to cope with that. I told one doctor of my anxiety, and she shrugged and said “that must be rough” and moved on with her day.

I started this blog in the middle of this process to convey my struggles, to put words to my feelings, and to show others that there still can be a life with a chronic illness. There may not be a cure, and life may certainly not be what you see on TV or what you thought it would be like, but it’s a life. And there’s good to be found in it.

The whole concept “Flareup Hope” started with a conversation with my dad. I told him I was starting a blog to help raise awareness and to connect with other people who were going through the same thing. We brainstormed, and came up with this because in the deepest darkest moments of my last flareup, what I held on to was hope: hope for healing, hope for getting through one more minute, one more sunrise, one more day. Finding hope has become my mantra. I search for people who are willing to share their stories (message me if you would like to) in order to inspire others to keep fighting.  I share my own thoughts and challenges and medical experiences.

I do not claim to be an IBD expert, or an advocate, or to have the answers for you. But I am a real human with Ulcerative Colitis, an autoimmune disease that does not have a cure. I am a patient, a daughter, a spouse, a dog mom, and someone who loves to write, take pictures and go on adventures and starting projects. I have dealt with depression and anxiety and I have grieved the life that my chronic illness stole from me. I’ve developed a sense of gratitude for this new way of living, and I share some of my methods and coping mechanisms for dealing with all the feels these conditions bring.

My mission here is to provide sparks of hope to people that need to keep fighting. It only takes a spark to light up a room.

Thanks for bearing with me on this first ramble of a post. Can’t wait to read everyone’s day one intros!

 

 

 

 

 

 

#ShowMeTheMummy-Raise Awareness for IBD

One of my favorite IBD advocates and members of my support team, Colitis Ninja started this awareness campaign and I am so excited to participate in it. What you do, is wrap yourself (I would suggest having someone help) up with toilet paper and hold up a sign stating how IBD has affected you, good and bad. You can read more about the actual campaign on her blog www.colitisninja.blogspot.com

I chose to do my photo while getting my infusion. One of my soul sisters was there visiting with me and she helped wrap the toilet paper so my IV didn’t get in the way and took the photos.

#Showmethemummy

IBD took a lot from me. It’s taken a lot of money, from hospital bills to prescriptions to vitamins to infusions to special food. It took my ability to eat anything I wanted any time I wanted. It made me buy diaper cream and prep. H.  It took my 26th birthday and made me spend it hooked up to IVs waiting for the all clear to get remicade. It took so much blood I had to get blood transfusions. It took my reliability and made me person who sometimes has to cancel plans because they need to be home close to their bathroom, or they are too exhausted to even try to leave the house. IBD took my emotions and threw them into a blender. It took my muscles, it lowered my blood pressure, lowered my iron levels, and stole my energy. It stole my ability to live a carefree life.Thanks to the infusions I receive every 8 weeks, along with prayer, diet changes and daily yoga, I am as close to remission as I am going to get. And even though I no longer am losing blood (thank God),I still have an autoimmune disease that has no cure. I still fight every day to have as much of a “normal” life as possible. The infusions come with their own side effects, and I experience a lot of hair loss, joint inflammation, and am more susceptible to other diseases and virus because my immune system is lowered.

It’s hard to look at the positive of being diagnosed with IBD. But it has made me stronger than I ever have been before. That saying where you never know how much strength you have until being strong is your only choice? That fully applies here. I know that because I can battle this disease, I can battle anything that comes my way.

Having IBD has also made me re-evaluate relationships in my life, and I can say with a full heart that all of my friendships and relationships are high quality, strong and true. I have some of the greatest friends, am closer with my family, and have found a person who will be by my side while I battle this for the rest of my life. I have weeded out the flakes, and I couldn’t be more grateful for that. I don’t have time or energy for someone who is only going to be around when they need me.

IBD has also given me a dedicated yoga practice. I have learned so much about the mind body connection, and I practice yoga every day to stay in tune with my body and to relieve stress. On days when I can’t seem to get anything right, and my balance is off I can come to my mat for practice and remember when I couldn’t stand up long enough to take a 5 minute shower, or wash my own hair. And I am so proud of myself for how far I’ve come.

This disease has also brought me closer to God. I had a relationship before, but I had never fully experienced the power of prayer. Now I can feel it, and I know, and I talk to God every day. It keeps me grounded and lets me know that there is a bigger plan than all of this. I know that I have a purpose, and that comforts me and guides me.

Another unexpected perk (?) of IBD is the amazing circle of friends on social media and support groups that I have found. I often refer to them as my imaginary friends. I’ve never met anyone in my #IBDfamily personally. But I don’t know how I would have gotten through this disease without their support or encouragement. I am so inspired an encouraged by them, and so grateful for having all of these kind souls as a part of my life. It gave me the idea to spark hope and start this blog. It’s lead me to connections with others that would have never been possible without this diagnosis.

And that brings me to the final thing that IBD has given me. A sense of gratitude. I make it a part of my life every day to note the things I am thankful for. It can be something as simple as a cup of coffee, or an email someone sent today, or a phone call with my dad. Or as big as an IBD sister in the hospital healing. I’m thankful every single day, good or bad. I’m appreciative of what I’ve been given, because I know first hand that it can be taken away at any moment.

IBD is not a joke. It’s not a poop disease. It’s not something to be taken lightly. I wouldn’t wish it on anyone, but I do wish it was more well-known and understood. Do you have IBD, or are you a caregiver for someone fighting the disease? Please share your experience using #showmethemummy. Raise awareness with us.

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