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 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 9

One thing after another and I spaced writing this the day I should have posted this, but here it is! A day late but it’s here.

Day 9: Have you ever tried any alternative therapies? If so, what? Did they work?

I have tried a few different alternative therapies for my Interstitial Cystitis (IC), Endometriosis, and Pelvic Floor Dysfunction (PFD) such as; Kratom, Essential oils, Changing my diet almost completely using this ‘IC Diet List’ I received after my diagnosis

But for the most part, the stuff that worked best for me was just a combination of lots of little things. Adding a combination of multiple Essential Oils to my lotion, soaking in baking soda epsom salt baths, laying with my heat pad. I’m sure there are others, just having a major brain fog day on top of everything else.

So this will be a short post that I hope to update when my brain decides to come out of hiding.

Wish me luck!

My Self Care Kit For Chronic Illness

*Sorry this is late, everyone! I had some unavoidable challenges come up but here it is! I have combined my ‘Must Haves for dealing with my illnesses as well as added a few more items for self care*

Dealing with a chronic illness is a very hard thing to go through. The hardest part for me of having a chronic illness is how down I feel all the time due to pain or exhaustion. It affects me to the point where there are days I just shut everyone and everything out. Then I do what I shouldn’t. I spend hours telling myself this illness is my fault and it won’t ever go away.

But I need to stop focusing on the negative aspects of my illnesses and try harder to see the good things in my life, silly or not. So I made a list of all the things I think are must-haves, at least for me. I am sure your list will be different, but you should just sit for a minute and look around and see what things are a must-have for your own self care/Necessity’s for you!

1. Heat

This is a big must-have for me, especially my heating pad. There’s no denying heat helps! It can ease the aches and pains or just provide enough comfort on rough nights. I also bathe a lot more than most people because the Epsom salts and hot water help loosen my muscles further and help relax me.

2. A Comfy Bed

Some nights when I am really sore and just want to lay down, there is nothing better than our super comfy bed and pillows. Even in pain, just the bed and the softest pillows in the world (in my opinion) can make a world of difference as I sink into the bed and feel like I am floating on clouds. I know I am weird – it’s nothing new!

3. Music

Sometimes all it takes to change my mood is some great music and laying on the couch with my eyes closed.

4. Distractions – Silly Or Not

There is just something about spending time searching for words in a word search that just helps me. It is hard to explain but here I go. When I used to be stressed as a teenager, sitting at the table and spending hours finding words (and even finding some that were not in the word search) gave me a good distraction from my stress. Now, years later, it still helps distract me – whether it’s from stress, people, my moods or my pain.

5. Girly Vanities

When I feel like I just got run over by a truck, sometimes just putting makeup and nice clothes on can help with my mood and make me feel better about myself if I look good on the outside. If I am going to be chronically ill, I may as well look good while dealing with it in my life.

6. A Good Book

Escaping into a book probably should go under “Girly Vanities” because it is a distraction, but at the same time it is just fun. You get to pretend to be someone else for a while.

7. Games

Whether it be board games, computer games or console games, there are many reasons to play games. One, it is a distraction. Two, you can escape into a game just like you can into books.

8. Netflix

On those days when it’s just so hard to handle even getting out of bed, there is Netflix. You can sit in bed or comfy chair and get lost in crime or medical shows (my preference) and binge-watch all you want at the same time you are relaxing.

9. Ice Packs

When I push myself past my limit, even if I don’t mean too, ice packs are great for swelling of my arms, legs and stomach that comes with me overdoing myself, even with something small like walking across the parking lot to throw away trash.

10. Tea

I have come across yet another symptom of my diseases, but it’s hard to explain what it has to do with my conditions. I get severe nausea at random times and places. Tea helps make the nausea bearable. It helps my nausea, and it can also help me sleep. I use Sleepytime tea from Walmart and it helps relax me enough that I can get some much-needed rest at night. Most people probably would use mint tea for upset stomachs, but for some reason this works better for me!

11. Laptop

I spend hours on the computer either laying in bed or sitting on our couch resting, especially if I am having a particular crappy day, and it helps even just a little to curl up with a good book and try to distract myself.

12. Letter Writing

I do a lot of writing and letter writing. Most of them do not get sent or kept. I use writing in any form, mostly to help me deal with my conditions and my feelings. I have always used writing to help me cope and sometimes communicate with someone if I cannot find the words I need.

13. Cuddly Stuffed Bear

Or, in my case, a cute, adorable, cuddly minion. Sometimes it amazes me just how much seeing a minion on either of their three movies or even just walking in our bedroom can make my day so much better. (Childish, I know. But that is just me!)

14. Comfy Clothes

This is probably the biggest things that is a must-have. Always. Jeans and most other clothes that do not have an elastic waist make me flare which makes me swell everywhere and causes more pain on top of the already severe amount of pain I experience every single day and may feel for the rest of my life. It never made sense to me how fabric can make me hurt way more even just by wearing them. but maybe one day it will make sense. Until then, I will continue wearing my comfy, sometimes brightly colored sweatpants everywhere I go, in public or not.

15. TENS Unit

If you do not know what a TENS unit is, basically you attach four sticky pads to the area of your body that hurts (I usually put mine on my stomach area) and connect the pads to a little machine. This makes the pads vibrate and it helps loosen sore or hurting muscles.

16. Fidget Items

Something I’ve picked up along my ‘journey’ is the need to always have something to fidget with when I get anxious or upset. I havw created my own medical bracelet that i made with my awareness colors for beads. I Aldo always wear my best friends urn necklace and I find myself always playing with that around my neck. Fidget cubes or spinners are also a great item to have-plus it fits in my pockets!

17. A Notebook

For all the thoughra in my head. Sometimes I need to just get it out on paper even if it doesn’t make sense by the end.

18. Mini Cuddly Things

A small, hand sized items such as a mini stuffed animal goes a long way to help ease my anxiety for any situation. Yes, I get weird looks and some outright laughs, but, hey, it helps!

19. Headphones

A pair of headphones that I can plug into my phone to listen to music whenever I need a distraction, either outside my apartment or inside.

20. Sitting At A Favorite Spot 

And last, (This may not seem to be self care to some, but it is for me) I really enjoy walking to the river just up my street to sit on my favorite bench, one that is shaped like an old style bike and just watch the river and listen to the sounds around me. I took this last spring so the picture doesn’t do it justice but you get the idea!

So there you have it – my must-haves for dealing with my illnesses.

What little things do you think are a must-have for your self care kit? Comment below!

Coming June 17th

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Lessons My Chronic Pain Taught Me

I know what you’re probably thinking, “How can your Chronic pain/Illnesses teach you something?! Pain is pain, there’s nothing good about it!” And to be perfectly honest, I’ve struggled for years with trying to accept my illnesses. For years I let myself focus on the bad parts, the bad days, the medication overload, the sleepless nights due to pain. I couldn’t see that despite it all, my Chronic Pain has taught things about myself. Good things and bad.

These last few months, I’ve been dealing with some extremely hard personal challenges. Its been emotionally and physically exhausting. But I’m still doing my best to move forward.

Here are some lessons my chronic pain has taught me.

  1. When I was first diagnosed with Interstitial Cystitis, Endometriosis and PFD, one of the first things I did was search out some support groups. My ‘family’ now is spread across the world and I haven’t met most of them in real life yet. But we stand together and support each other.
  2. My pain has taught me how to listen to my body and learn my limits. In the early days of my ‘journey’ I tried to keep the pace I had before I got sick and more often than not I ended up in bed for days after.
  3. There is a joke, but not a funny one, going around the Spoonie communities. “Want to know who truly cares about you? Get diagnosed with a Chronic Illness.” There are only a few people in my life but they have continued to lift me up and help me because they truly care.
  4. My Chronic Pain has taught me to believe in myself again. Being confident in what I can and can’t do has helped to allow myself to believe I can do anything, I just have to be careful and usually spread out over a week or more. But I do get things done.
  5. My illnesses have also made me want to learn all I can about my illnesses and others that people I know have. I know it may seem strange but learning about other illnesses is a kind of hobby for me.
  6. Just because I could do some walking around and hanging out yesterday doesnt mean I can do the same tomorrow.
  7. The person hardest on me is myself. I judge myself harshly, put myself down for the things I can’t do. I usually end up pushing myself too far because I want to try and have a life outside of my illnesses.
  8. I’m learning its okay to ask for help.
  9. I want to help others like me who suffer from Chronic Pain and Illness. I even starts my own in person Chronic Pain Support Group here in my town.
  10. I think one of the hardest things my illnesses have taught me is how to be patient with others and not become annoyed when they find out I’m sick but look fine on the outside. They all give you ‘the look’ of disbelief and some even come right out and call me a liar. It hurts.
  11. There are a lot of ignorant people out there who think they know me and my illnesses better than I do based off a 2 minute internet search.
  12. I’m learning to take life one day at a time, sometimes an hour at a time. And thats okay.
  13. My experiences are different than those of someone with the same illness. No two people have all the same symptoms.
  14. There are many others who suffer from Chronic pain and Illness, as well as invisible illnesses. You are not alone. I am not alone.
  15. Taking care of myself is not selfish. Its a necessity.
  16. I’m much stronger than I give myself credit for. My illnesses take a lot from me mentally, emotionally and physically. But somehow I still manage to push forward each day.
  17. I have to become my own doctor as I know my body better than anyone. I’ve spent hours researching to find different treatments and ways to make my life a little easier.
  18. I no longer try and justify my illnesses to others. I’m sick and while I’m doing the best I can, I should never have to feel the need to prove how sick I am.
  19. I can no longer do what I used to, but I just do my best to adapt and find a way to still have fun.
  20. You have to be truthful: you have to be open with loved ones about your condition, pain and feelings. So then you don’t battle alone and everyone knows the score.

What have you learned through your own journey of Chronic Pain and Illness? Let us know in the comments. 

Coming April 20th

Go and explore the world.

My Must Haves For Dealing With Chronic Pain

Dealing with a chronic illness is a very hard thing to go through. The hardest part for me of having a chronic illness is how down I feel all the time due to pain or exhaustion. It affects me to the point where there are days I just shut everyone and everything out. Then I do what I shouldn’t. I spend hours telling myself this illness is my fault and it won’t ever go away.

But I need to stop focusing on the negative aspects of my illnesses and try harder to see the good things in my life, silly or not. So I made a list of all the things I think are must-haves, at least for me. I am sure your list will be different, but you should just sit for a minute and look around and see what things are a must-have for you.

1. Heat

This is a big must-have for me, especially my heating pad. There’s no denying heat helps! It can ease the aches and pains or just provide enough comfort on rough nights. I also bathe a lot more than most people because the Epsom salts and hot water help loosen my muscles further and help relax me.

2. A Comfy Bed

Some nights when I am really sore and just want to lay down, there is nothing better than our super comfy bed and pillows. Even in pain, just the bed and the softest pillows in the world (in my opinion) can make a world of difference as I sink into the bed and feel like I am floating on clouds. I know I am weird – it’s nothing new!

 

3. Music

Sometimes all it takes to change my mood is some great music and laying on the couch with my eyes closed.

4. Distractions – Silly or Not

There is just something about spending time searching for words in a word search that just helps me. It is hard to explain but here I go. When I used to be stressed as a teenager, sitting at the table and spending hours finding words (and even finding some that were not in the word search) gave me a good distraction from my stress. Now, years later, it still helps distract me – whether it’s from stress, people, my moods or my pain.

5. Girly Vanities

When I feel like I just got run over by a truck, sometimes just putting makeup and nice clothes on can help with my mood and make me feel better about myself if I look good on the outside. If I am going to be chronically ill, I may as well look good while dealing with it in my life.

 

6. A Good Book

Escaping into a book probably should go under “Girly Vanities” because it is a distraction, but at the same time it is just fun. You get to pretend to be someone else for a while.

7. Games

Whether it be board games, computer games or console games, there are many reasons to play games. One, it is a distraction. Two, you can escape into a game just like you can into books.

8. Netflix

On those days when it’s just so hard to handle even getting out of bed, there is Netflix. You can sit in bed or comfy chair and get lost in crime or medical shows (my preference) and binge-watch all you want at the same time you are relaxing.

9. Ice Packs

When I push myself past my limit, even if I don’t mean too, ice packs are great for swelling of my arms, legs and stomach that comes with me overdoing myself, even with something small like walking across the parking lot to throw away trash.

10. Tea

I have come across yet another symptom of my diseases, but it’s hard to explain what it has to do with my conditions. I get severe nausea at random times and places. Tea helps make the nausea bearable. It helps my nausea, and it can also help me sleep. I use Sleepytime tea from Walmart and it helps relax me enough that I can get some much-needed rest at night. Most people probably would use mint tea for upset stomachs, but for some reason this works better for me!

 

11. Laptop

I spend hours on the computer either laying in bed or sitting on our couch resting, especially if I am having a particular crappy day, and it helps even just a little to curl up with a good book and try to distract myself.

 

12. Letter Writing

I do a lot of writing and letter writing. Most of them do not get sent or kept. I use writing in any form, mostly to help me deal with my conditions and my feelings. I have always used writing to help me cope and sometimes communicate with someone if I cannot find the words I need.

 

13. Cuddly Stuffed Bear

Or, in my case, a cute, adorable, cuddly minion. Sometimes it amazes me just how much seeing a minion on either of their three movies or even just walking in our bedroom can make my day so much better. (Childish, I know. But that is just me!)

14. Comfy Clothes

This is probably the biggest things that is a must-have. Always. Jeans and most other clothes that do not have an elastic waist make me flare which makes me swell everywhere and causes more pain on top of the already severe amount of pain I experience every single day and may feel for the rest of my life. It never made sense to me how fabric can make me hurt way more even just by wearing them. but maybe one day it will make sense. Until then, I will continue wearing my comfy, sometimes brightly colored sweatpants everywhere I go, in public or not.

15. TENS Unit

If you do not know what a TENS unit is, basically you attach four sticky pads to the area of your body that hurts (I usually put mine on my stomach area) and connect the pads to a little machine. This makes the pads vibrate and it helps loosen sore or hurting muscles.

So there you have it – my must-haves for dealing with my illnesses.

What little things do you think are a must-have for you? Comment below!

As Of Now

Sorry guys! I know I’ve missed several Chronic Illness Challenge posts so for the time being I will be putting the rest on hold as something has come up.

But coming March 1st, this will be my newest post.

Have a wonderful night!

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