I’m Still Here. I’m Still Standing.

Please be patient with me. This post may be jumbled and hard to follow, but, for the first time in a VERY long time, I’m reaching out to all of you. Usually, I write to help those who need it. Either by writing a topic one of you have requested, or something I feel might be what you need to hear.

This has hit me hard. It’s taken me this long to even begin talking about it, even with those I trust completely.

I recently found out my Grandma, who pretty much raised me, has 3-6 months left to live and they aren’t doing any treatments again. I know I’ve had her for way longer than most I know that have had cancer, but I’m not ready to lose her 😭

With everything going on these last few days, I feel like I’m losing my mind. BUT, I’m still standing. I’ve got an amazing support system of my boyfriend and his family; as well as support from those in my family, which I didn’t feel like I had before. I did. I know that. I guess I just didn’t feel like they’d want to ‘deal with me” and all my issues. Stupid, I know. They’ve told me they are always here for me and that I shouldn’t worry that they don’t support me, because they do.I’ve been through so much in my 25 years of life. Unimaginable, horrible things. I’ve also been through some things that, at first, shattered me emotionally, mentally, even physically. Some days I didn’t think I could go on. Didn’t want to. But I did. I managed to pick myself up, and keep moving forward.

Eventually, I even began sharing my story through blogging, with the hope that maybe what I had to say could help someone else, even just for a minute. The responses came slow at first, but now almost 8 years later, I’m still getting emails, messages, comments, about how my writing, my blog, has helped so many. That’s why I do it. NOT for fame. NOT for money. NOT to be ‘trending or popular’. Because all I’ve ever wanted is to help others.

#lunatunes #supportdog #family #emotionalsupport #familysupport #stillhere #emotionalbattles

Now is where I admit to all of you, I’m struggling badly with this and could use all the support and love I can get to help me through this.

A message, a comment, a silly image to make me laugh. Anything to help me deal with this.

I’m one of those people who always put others first, who hates asking for help; but I need your help. I need support to get me through this. So here I am. Saying please help me. Please.

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.

Things I Like (& Don’t) About My Life With Chronic/Invisible Illnesses

As I enter the 7th year of my ‘journey through Chronic/Invisible Illnesses, I thought I’d do something different.

Here is my list of things through the years that I like and dont like about my life with 3 invisible chronic illnesses.

10. Don’t-Like. Being housebound most of the time. I can spend days not being able to leave my apartment

Like. Being housebound means that day is completely my own. I can do my one jewelry and crafting as much as I like. I also can read as much as I like. I am a book obsessed 25 year old Chronic Illness Blogger

9. Don’t-Like. All those doctor appointments. We’re all too familiar with this and it drives me insane with all the doctor appointments. The ‘hurry up and wait’ thing.

Like. A doctor’s appointment gets me out of my apartment. Some days I am glad because it at least gets me out of the apartment and not holed up like the hermit i have been in the past.

8. Don’t Like. All of the friends I have lost due to my illness/always having to cancel plans, etc..

Like. I treasure the few close friends I have. Then I have a new “Family” of Chronic Illness/Invisible Illnesses/Chronic Pain all over the world.

7. Don’t-Like. I don’t have a reason to get dressed up anymore. I used to dress up all the time, just because. Makeup and all!

Like. I now dress up and wear makeup when I want! Most days you will see me in sweats, or leggings. I very rarely wear actual pants. Mostly due to the “IC, Endo” belly.

6. Don’t-Like. Waking up feeling as if I never went to sleep. “This is called non-restorative sleep.” Pain and illness keep me from feeling refreshed when I wake up.

Like. I am not judged for needing a nap or two during the day. He knows when I need a nap, sometimes before I do!

5. Don’t-Like. How hard it is to take care of basic things. Some days are more challenging than others. Laundry can pile up, and dishes can stay in the sink for quite a while because most days I don’t have enough “spoons” for the day.

Like. I have fewer things to take care of! Yes, my laundry may pile up, but I now have a laundry basket that is half the size as the one I was using before. Best of all, it has wheels on them! Having a ‘half size’ laundry basket also makes doing laundry easier, since it doesn’t fit near as many as my old one. I also love putting my laundry in trash bags some days and watch them fall down the stairs as I kick them down to the basement. (but I mainly do laundry with my Boyfriend and his family at his place)

4. Don’t-Like. Being unreliably socially. I should not be embarrassed about this, but I am. I hate hate hate canceling plans, especially when I actually wanted to go. I also rarely am out alone, (usually with my boyfriend and his family almost constantly lately) but when I am, I suck at conversation, even simple things. I stumble over my words, or repeat things again and again.

Like. “Not having to commit to social occasions that I’d rather not attend. I wasn’t sure I should include this because,  it sound rude. But I think it may be a little secret that all of us who struggle with our health share: we have the perfect excuse to bow out of things we don’t want to do. I rarely use my chronic illness as an excuse because I usually force myself to do things when  because I know it would be good for me to get out. There you have it: a confession.

3. Don’t-Like. My inability to take long walks by the river.The river is my favorite place to go. Down the road from a section of the river is the Friendship Garden

That place is my sanctuary. I have recently taken up a hobby of taking pictures and while most are far from good for whatever reason, I still love them and I don’t care if they are very far from professional. I love taking pictures, I was going to incllude some in this article but then I thought maybe some people would not care to see them, so if you would like to see the pictures I have taken at the river as well as other places, leave a comment below!

Like. I am baring my soul here, but just go with it. I recently got a divorce from my now ex husband. When we were married, we has a kitty we named Sandy, because we thought she was a girl. Turns out SHE was a HE but we kept the name. Anyway, now that I am divorced and moved out, Our adorable Sandy went to live with my Ex Husband’s cousins and I haven’t seen him since. It breaks my heart.

2. Don’t-Like. Being so limited in what I can do. At times, this has been a big source of frustration.

Like. I have become way more creative. I do jewelry making and already have people who want to buy them from me when they see the album of jewelry I just made because I could. Never once crossed my mind that someone would think its good enough and offer to buy it when it really is just a hobby for me.

And the number one thing I “don’t-Like-but-like” about being chronically ill:

Don’t-Like. The lack of in-person interactions. To me it seems, everywhere I go, people are so focused on their phones and barely hear you when you ask them something. If it doesnt have to do with what they are doing on their phones or even laptops. they stop paying attention.

Like. I love having a “Family” all around the world. This “family” is irreplaceable and I honestly wonder where I would be if they were not here in my life. I finally decided it didn’t matter. They are my family and I love them so much. I owe them so much.

Is there anything you like/don’t like about your life with chronic illness/invisible illness/ chronic pain? Let me know in the comments!

 

 

 

 

 

What I Wish Someone Had Told Me About Grief

43719848_905136553020489_1028161071254339584_o_90513654968715634308611_810823532451792_3052487970855583744_o_810823525785126Today marks 1 year without my best friend Ty. We clicked right away upon meeting each other for the first time. Our mutual friend introduced us, knowing that having someone who understands the challenges that come with being diagnosed with a chronic or invisible illness can be a little easier to deal with if you have support.

In 2012 I was diagnosed with Interstitial Cystitis (IC), Endometriosis and PFDShe had EDS and POTS

This list is some things I wish someone had told me, what I’ve learned as well as some things from a few other contributors.

  1. No matter how prepared you think you are for a death, you can never be fully prepared for the loss and the grief.
  2. You can plan for death, but death does not always comply with our wishes or plans.
  3. Dying is not like you see on TV or in the movies.  It is not peaceful or prepared.  You may not have a spiritual or meaningful moment . . . It’s too real
  4. There will be pressure from others to move on, even minutes or hours after a death, and this can lead to regrets or resentment.
  5. Death is not an emergency – there is always time to step back and take a moment to say goodbye
  6. Death and grief make people uncomfortable, so be prepared for awkward encounters.
  7. You will plan the funeral while in a haze.  If you aren’t happy with the funeral you had, have another memorial service later.
  8. When people offer support, take them up on it.
  9. People will bring you food because they don’t know what else to do. Don’t feel bad throwing it away.
  10. People will say stupid, hurtful things without even realizing it.
  11. People will tell you things that aren’t true about your grief.
  12. Death brings out the best and the worst in families, so be prepared.
  13. There is no such thing as closure.
  14. There is no timeline for grieving. You can’t rush it. You will grieve, in some form, forever.
  15. There will always be regrets. No matter how much time you had, you’ll always want more.
  16. Guilt is a normal part of grief.
  17. Anger is normal part of grief.
  18. The pain of a loss is a reflection of love, but you never regret loving as hard as you can.
  19. Grief can make you question your faith.
  20. Grief doesn’t come in 5 neat stages. Grief is messy and confusing
  21. Grief makes you feel like you are going crazy.
  22. Grief can make you question your life, your purpose, and your goals. And that isn’t always a bad thing.
  23. We all grieve differently, which can create strain and confusion between family members and friends.
  24. However badly you think it is going to hurt, it is going to be a million times worse.
  25. You may find comfort in very unexpected places.
  26. The last 24 hours of their lives will replay over and over in your mind.
  27. It’s sometimes necessary to seek out new ways to grieve on your own, find new guidance if the people who are supposed to be supportive simply haven’t learned how.
  28. You grieve your past, present, and future with that person.
  29. You dread each anniversary, birthday, occasion without that person.
  30. They say the first year is hardest; but in reality, its all hard. First anniversary, first birthday, first time going to a place you shared without them.

Is there something you would add to the list that isn’t already on the list? Let me know in the comments!