30 Day Chronic Illness Blogging Challenge: Day 16

Day 16: What is your favorite inspirational quote?

There are many quotes I love that have helped in many situations. I’ve even begun to make my own.

Two of my favorite quotes are ‘Its funny how day by day nothing changes; but when you look back, everything has changed.” And “A semicolon is used when the author could have ended the sentence; but chose not too. The author is you and the story is your life.”

You can check out more of my quotes HERE

30 Day Chronic Illness Blogging Challenge: Day 15

Day 15: What would you say to people newly diagnosed with this illness?

So many things came to mind as soon as I read the daily challenge but a few come to mind the most.

  • Don’t brush off symptoms-I can’t even count the number of times I ignored my symptoms and told myself I was just working too hard or not sleeping long enough; and on and on.
  • Keep a daily log of symptoms and activities-to help make your ‘journey’ go smoother to finding answers, having a log of every part of your life is a huge help.
  • Trust your gut-you know your body better than anyone. No one knows how you feel better than you.
  • And most of all, be your own advocate-So many times I’ve had doctors, nurses, friends and family intentionally or otherwise make me doubt what I’m going through. After all, if all the tests come back normal again and again, it must be in my head. Right?

Don’t give up. It can be easy to get frustrated when you spend days, months, or even years in and out of doctors offices, hospitals, having a million tests done, endless medications and a lot of trial and error to find the right treatment for you.

30 Day Chronic Illness Blogging Challenge: Day 14

Day 14: Give 5 things you are grateful for

1. My amazing boyfriend. He encourages me, loves me even when I’m not being lovable, doesn’t let me talk bad about myself, always tells me I’m beautiful even when I can’t face myself in the mirror. He listens to me say what I’ve probably already said a million times. He’s patient. He immediately drops whatever he’s doing just to hold me for a minute and kiss my forehead. I could go on and on ❤️ We first met when I was 14. We’ve both been through hell many times in the years apart from each other. But, now at 25, I’m back right where I belong.

2. I’m beyond grateful for the chance to be in my little sisters life again and actually get to have girl’s nights out. We never really had the chance to get close as she was 3 when I left and moved out of the state and in the care of my mom’s parents till my senior year. She is now here for college and told me she doesn’t care if I suck at being a big sister. That all she cares about is that I do my best ❤️

3. I’m grateful for the “Spoonie” community. A ‘joke’ that goes around the Spoonie groups online is ‘Want to know who truly cares about you? Get diagnosed with a chronic illness.’ not a funny joke, but it hits home with almost all of us, especially those who have little to no support since their own ‘journeys’ began.

4. I’m grateful for the amazing people in my life who love me despite the struggles I have. Who love me even when I’m not loveable. Who are there any time day or night I can call even if I just need to cry and have them listen ❤️

5. I’m grateful for the chance to put myself and my writing out there for the world to see. If my writing can help even 1 person, I’ll pour out my heart and soul. All I’ve ever wanted since I started blogging was to help people know they don’t have to go through it alone anymore. I want someone to read something I’ve written, and for a second, just a second, they know they will make it. They know they can keep pushing on, even if it’s the hardest thing they’ve ever had to do.

30 Day Chronic Illness Blogging Challenge: Day 13

Day 13: Has your physical illness had any effect on your mental health? Explain.

Once again, I missed posting the day I should have. But better late than never!

Physical illnesses, chronic or not, can definitely mess with your mind. When you’re sick, usually you feel like crap and spend a lot of time resting which gives your brain nothing but time to spin in circles and do the whole ‘poor me’ thing.

I struggle every single day with pain as well as depression. I do everything I can to not let depression win. I work on my jewelry, binge watch shows, music therapy etc.

Lately I’ve been struggling more than ‘normal’ with my depression and it’s a constant cycle of doing everything I can to keep myself busy and not give myself time to get stuck in a rut. Then depression sets in and it’s harder and harder to do even the simple things. It’s easy to stay in the rut once you’re there. And I hate it so much.

Currently I’m working on my jewelry and watching SVU. I got this. Baby steps. I refuse to let my Depression win. I’m stronger than it. I just have to remember that I’m doing the best I can.

30 Day Chronic Illness Blogging Challenge: Day 12

Day 12: Briefly explain to a healthy person what it is like to live with this illness.

*Please be patient with me, explaining pretty much anything, but especially personal stuff has, and continues to be, something I struggle with.*

The simple version I say to someone who asks about my illnesses is the tip of the iceberg on how bad it really is. Sadly, most don’t care about the long version; and I don’t say that to be mean. Most people are usually just worried about themselves and their lives. From my personal experience, most mainly want a paragraph sized answer and honestly, I suck at that. Most ask because ‘its polite’ or ‘just what everyone does’

All 3 are classified as ‘Invisible’ illnesses. All 3 are non fatal by themselves, but all three are also incurable.

Interstitial Cystitis is a disease where my bladder lining is slowly wearing away, exposing the nerves and causing severe pelvic and bladder pain.

Endometriosis is where everything my body should get rid of during my periods is unable to be flushed out, causing it to stick to my organs, causing adhesions and scar tissue, along with scarring the outside of my organs.

Pelvic Floor Dysfunction (PFD) can mean one of two things. Either the muscles in and around someone’s pelvis are too loose or too tight. In my case, my muscles are way too tight all the time, causing severe pelvic and back pain. I do weekly PT as well as daily stretches I’ve learned at PT and some I just looked up online.

I figured by the time I was a year or so into my ‘journey’, I would have been able to explain everything easily and with no problems. Here I am almost 7 years in and it’s still hard to deal with, trying to accurately explain my illnesses and my life is even harder for me.

But here I am. Trying to help even 1 person with my writing and experiences, as well as take steps forward in my own mental and emotional health. One day at a time. Sometimes even one hour at a time. Baby steps. I can do this. I know I can. Just please don’t give up on me.

30 Day Chronic Illness Blogging Challenge: Day 11

Day 11: Why do you believe you have this illness? Bad luck, a higher power, karma, or something else?

Personally, I believe that by getting sick and all that comes with it, is to strengthen me. To force me to reach out to others. To believe in myself again.

Ask my family and friends, and their answers are all the complete opposite. My family basically has the idea that ‘my choices’ made me sick. That because I moved back here the day of my 18th birthday, stopped going to church, married someone they didn’t approve of, and generally didn’t continue with the ‘right ways’ of life they believe in, that’s why I’m sick.

This is something I’ve struggled with for years, I still struggle with this every single day. When my Grandma got diagnosed with breast cancer 6 years ago, she was doing everything right, eating healthy, natural remedies etc. But she still got sick and she is still going to die. Recently my mom got diagnosed with Chrohns Disease. In both those instances, it was ‘just what happened.’ not that there choices and actions made them sick.

I struggle to be the bigger person, to be there for them if they need me without letting my feelings get in the way of our relationship.

It took a few years, but one day it hit me. All the time and energy I was spending just to try and get them to believe me, to see I’m not faking or just wanting attention, was doing no good. I was angry that they couldn’t or wouldn’t understand. But all the time I spent being angry and hurt damaged some of the time I have had with them. So now, I just try and be as ‘normal’ as possible with them and I avoid talking about my illnesses. I just try to keep in contact with them the best I can.

My sister recently moved here for college and I feel so blessed to have the chance to finally have the sister relationship I never had the chance to have before.

Long story short, when I was 5 my dad married my step mom. When I was 10 they sent me a state away with her parents to be raised until I graduated. At the time I couldn’t see how that was the best thing they could have done. All I could see is after 5 years they just didn’t want me anymore.

My little sister that is here for college, she was 3 when I moved away. And as much as I called and spent time talking with her and my other 3 siblings, it wasn’t the same.

I moved back with them right before my senior year of high school. I spent that year doing the best I could to form a relationship with my siblings.

The day I turned 18, they packed me up and drove me back here. Once again, trying to have a relationship just by occasional phone calls and texting whenever they actually got cell service in the mountains where they live, it wasn’t the same.

We now spend most of the day sending Snapchat back and forth, texting, and two sister outings so far. The first was a week ago. We went to the movies. Tonight, we attempted to go ice skating after eating at Pizza Pie Cafe.

Let me tell you, I trip and fall on flat ground, with nothing but air in my way 🤣. I only fell once and I’m very proud of that fact. She just made it look beyond easy, skating loop and after loop while I had to take continuous breaks to breathe and rest my aching feet.

But I loved every minute of it. I can’t wait to see what we do next 🥰😂

30 Day Chronic Illness Blogging Challenge: Day 10

Day 10: What little things makes your life easier?

There are so many little things that make my life easier with 3 incurable but non fatal chronic illnesses, but for now, I just want to share the two things that have helped above all else.

When I first began my ‘journey’ to find answers as to why I was suddenly so sick I couldn’t even get out of bed, I began blogging as a way to work through all the emotions I was feeling, as well as to maybe find others in my same situation. Best decision I made, although a uncomfortable one at first. I was and am a huge writer, and I have dozens of books filled with my words. But I had never up till that point shared the details of my personal life online.

I knew I had to do something to help me deal with everything that was happening. I couldn’t keep it bottled up inside and hope to come out unscarred emotionally.

So I started my blog, and the responses, while slow at first, rapidly became more and more. Others sharing their stories, stories of others they know or heard about, opinions and questions all for them, these strangers, to do what they could to help me find answers.

It still makes me emotional when I think about it. I never would have thought perfect strangers would actually try and help me. But I’m beyond glad they did. It helped me find answers, but most of all, it helped me deal with all I was feeling and having someone who’s there for you, even if they don’t have any sort of Chronic illness, is such a blessing. Someone to remind you that you are human. That your emotions and feelings are valid and natural.

Some of the best friends I have ever known I’ve never met face to face. Endless video chats and emails, yes.

I have a HUGE ‘unbiological family’ scattered all over the world, not just the US. Sharing my story was the best decision I have ever made. It forced me out of my comfort zone, to be vulnerable, to reach out to the nameless people online for support and answers.

Now, almost 7 years later, I’m still receiving emails from people asking how I’m doing and if there’s anything they can do to help. Even more shocking, at least from my perspective, I still receive countless emails, chats, phone calls from my followers and people who came across my blog one way or another telling me how much my writing has helped them. How they hope I never stop writing.

I have always loved to write, even as a young child. But it never occurred to me that my writing was actually going to help others. That by putting words on paper, (or in my case, online) I could inspire someone I don’t even know.

I always thought there was never going to be anything good about getting sick, getting on disability, unable to work, losing countless friends and family due to my illnesses and all that comes with it. But I’m so proud to say I was wrong.

You may have come across a page on my blog called Quotes By Me. After my ‘Journey’ began and I had to fill up every single day with anything just to prevent me from going crazy. I began making custom quotes, at first just ones I love. Then some for different situations (Dealing with life, loss, friendship, etc.) I began receiving requests for a specific quote someone wanted to see me make for them.

That has been an amazing idea that I wanted to see if I could push myself further. So I then began to make Spoonie Thoughts And Advice, Movie Quotes, and Song Lyric quotes. I am still in the process of adding more catagories, as well as adding them to my blog.

Keep checking back for new content in each category. Please don’t hesitate to contact me if you have something you’d like me to make, or even if you just need to rant and I listen without judgement. I only give advice if someone asks for it. Otherwise I just listen.

My contact information can be found on my ‘About Us‘ page under Karley Kay. My email and Facebook are usually the ones most people use to reach out to me.

If you reach out to me, I will always reach back to you. You’re not alone. You matter. Always. Don’t ever let someone tell you differently. You got this. I believe in you.

30 Day Chronic Illness Blogging Challenge: Day 8

Day 8: Where do you see yourself in 5 years time?

In five years, I hope to be able to start our family. Two weeks ago tomorrow I had my second Endometriosis removal surgery (also called Laparoscopy)

More on that in a later post, so keep checking back!

I also hope to go to college and pursue a degree working with special needs children. I also hope to finally begin a face to face ASL (American Sign Language) with others who are also learning. I have been trying to teach myself for a few years with YouTube, LifePrint and as well as my many books.

Some of my favorite people to learn from on YouTube specifically are Bill Viscars and TheDailySign.

For now, I’m doing my best to take life one day at a time and just enjoy my days the best I can.

Wish me luck!!

30 Day Chronic Illness Blogging Challenge: Day 7

Day 7: What was the biggest realization you have had?

I’ve been on my Chronic Illness ‘journey’ for 7 years this April and it’s taken me this long but I finally found a GOOD thing about having multiple (3) Chronic Illnesses.

I know what you may be thinking. “How in the world is there something good about having incurable illnesses?!” But it’s true. It’s taken me this long to find a good thing about my ‘journey’ and it came out of nowhere and hit me hard as I feel like I should have seen it long before now.

When I first began my ‘journey’ to find answers, I started this blog as a way to deal with it and hopefully have some support from others in my same situation.

Now, almost 7 years later, I have a huge ‘family’ scattered around the world who understand that part of my life and support me no matter what.

And to me, that’s everything ❤️

30 Day Chronic Illness Blogging Challenge: Day 6

Day 6: If you could have told yourself something when you first remember these symptoms arising, what would you have said?

I would have told myself to not brush it off, that something was really wrong. And to trust what my body was trying to tell me.

Instead, I did what I wish I could change. I brushed it off, figuring it was just from me working a lot and not sleeping very well. I tried to ‘walk off’ the pain and soreness I was experiencing. Until one day I just couldn’t anymore.

I woke up one morning to get ready for work but as soon as I woke up, I curled into the fetal position and started bawling. It felt like the whole lower half of my body was on fire. Then came the muscle cramps, spasms, and severe shooting pain.

I knew then that I couldn’t push it away anymore. That something was really wrong.

I ended up at the doctor’s just a few days later to try and figure out what was going on. Many months later (and dozens of blood draws, medications, hospital visits, worsening symptoms, test after test) I got my first diagnosis, Interstitial Cystitis (IC). Then came Endometriosis and, more recently, Pelvic Floor Dysfunction (PFD)

I’ve encountered many doctors who either don’t understand how truly bad it is, or they don’t believe that I have had some of the more ‘rare’ symptoms of my illnesses because they haven’t seen it happen.

April 2020 will make 7 years on my ‘journey’ with Chronic Pain. One of the biggest lessons I have learned in those years is I have to be my own advocate. I have to stand up for myself. Not let doctors belittle me. And not explain myself or my actions to others.

I constantly feel like I have to justify my actions and symptoms to others who don’t understand. Because, in my mind, if they can understand, maybe it would help.

It usually ends up being the opposite, with them having more questions than answers and me getting flustered and irritated as I try to explain it all to them in a way they would understand.

Now I just try and live as normal a life as one can with multiple invisible chronic illnesses. I shouldn’t have to justify everything I do or don’t do while living with these illnesses. It’s still a struggle though, as I want others to understand.