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 1

Day 1: Introduce yourself. What illnesses do you have? How long have you had them?


My name is Karley and I have been diagnosed with Interstitial Cystitis, Endometriosis, Pelvic Floor Dysfunction, Anxiety and Depression. I began my ‘journey’ in 2012. Four months after graduating high school and getting married to my now ex husband.

It seems to have hit out of nowhere, but when I began my ‘journey’ to find answers, my doctor said I had to have been symptomatic but unaware. I couldn’t see it at first, but I brushed all my symptoms away as just a part of ‘getting older’ and working long hours.

Until one day, I couldn’t ignore it anymore.

One morning before I went to work, I woke up and immediately started bawling, curled into a fetal position, holding my stomach.

The next few weeks, it happened again and again. I began missing a ton of work and finally I began going on the merry-go-round of medical tests, medications, needle pricks, lab work and, finally, multiple surgeries.

That was almost 8 years ago. Yet it feels like I’ve lived multiple life times.

I’ve been asked again and again why I share my story online for everyone to see if it’s hard to talk about.

That’s exactly why.

I know what it’s like to go through your ‘journey’ with little to no support and I never want you to go through what you and I have, alone. As hard as it has been for me to open up, especially knowing thousands of people know and read my story regularly, I regret nothing. I would do this a million times over.

Why? Because even just hearing 1 story from a follower of how my blog has helped them makes it all worth it to me.

Thankful For Them

In the past few weeks, I have received many emails from you guys asking for a certain topic to be written about or to re share a previous post. So here you go! This request was made by Amanda R.

I wrote this the night of an incident last year.

Do you have a topic you’d like to see me write about or have a post you’d like me to reshare? Let me know in the comments or you can contact me on Facebook. (I’m also willing to share a blog post written by you on my site and link back to yours if you’ll do the same)


I had an experience tonight that really got to me, I got angry and upset and I wanted to yell.

But then I realized something. I have to be the best I can be. I have to be stronger than the words that are being thrown at me. I have to be the example of kindness. I have to try and not let words hurt me. I have to realize that I don’t know the reason behind the hurtful words, that I don’t know why they say what they do. Its MY words and MY reactions that can make it better or worse. I have to worry about ME and as hard as it is, try and be a BETTER person and rise above it all.

Oh, I’m still upset, but I realized that was exactly how I DON’T want to be. I want to be happy. I want to help others, not belittle or yell at them. I don’t want to say hurtful things and ruin someone’s night. I don’t want to make anyone feel horrible. I want to make others feel even a little bit better and tonight, I did that.

I stepped in on a situation and helped a friend who needed it. I stood up for her. I made her feel better. And I did the best I could to make the situation even just a little better for her.

Tonight really put everything in prospective for me. I can’t change anyone, but I can be strong and rise above it all. No, I’m not saying its easy. Its never easy. But its the right thing to do.

In Memory Of…

*Trigger warning!* Post contains a  sensitive topic such as suicide.

 

 

 


In the last few years, we have lost so many amazing people of all ages to illnesses, addiction, accidents, and yet its the recent ones who have been hitting me right where it hurts.

The whole Spoonies community has been crumbling with grief for those who, for any number of reasons, can’t handle the pain, illness, doctors, and the only choice they have left is to br pain Free forever.

The word no one wants to say. The word one one dares to think some days. Suicide.

We have lost way too many in just the last few months and it breaks my heart.

I’ve been there. But that’s for another post. Just know I get it. I understand.

Coming March 8th

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Request

**EDIT** I feel like I totally went off track in this post but once I started writing it, I was on a roll.

If you or someone you know have a topic you’d like to read about or write as a guest post on here, you can find our Social Media sites HERE. Feel free to contact us at anytime.

You aren’t alone anymore.

What’s the hardest part of your illness, invisible or otherwise? Let us know down in the comments!

About an hour ago, I received a blog request asking my thoughts on Invisible Illnesses and the impact it can have not just on those suffering, but family members as well.

Here I am, almost 6 years into my Chronic Illness Journey and I’m still blown away by the words and actions of those who make the saying “Seeing is believing” to be true, no matter how well meaning they might be.

If we look fine on the outside but they can’t see what’s wrong with us, a lot of people assume we must be faking.

I did not say that to be rude or put others down. Before I got sick, I probably had that same mindset as so many others in our world.

Most people I’ve tried talking to about this believe if you can’t see it, it must not be real. Chronic Pain, invisible or not, is very real.

Chronic Pain is hard enough all by it self. Throw in people openly or secretly believing that we just want attention and it makes it that much harder. Even harder still is dealing with an invisible illness while looking fine on the outside.

I know for me personally, I’ve always been at war with myself, trying to decide what I want more. To educate others about my illness, or to try and hide how bad it is because I fear losing those I love.

I’m almost 6 years in and I still feel ant sized when I’m asked to verify my illness “otherwise you just want attention”

What most people don’t get is no one should have to explain or justify their illness but many of us keep trying to make them understand that its not all in our heads. That we really are sick. That just because we were able to do something before that we should be able to do again today.

Being asked to “prove” how sick we are brings up a lot of guilt because “maybe it is all in my head” or the stinging words of someone who saw you walking around fine without help yesterday yet today you are in a wheelchair so you must be faking.

From a recent personal experience I had with family admitting they didn’t believe I was even sick because I “could have found a way to fake labs, test results, surgeries and so on.” I once again I feel ant sized.

Its heartbreaking how many people have the mindset of not just disbelief in our conditions but also that since they don’t believe us that they don’t have to support us as we go through this.

I’ve said it a million times that I can deal with their disbelief of my conditions but just because they don’t believe me that doesn’t mean they can give up on me until I stop “faking”.

They can think what they want, I can’t make them believe me. But to hear the disbelief is like a punch to the gut. Add on how hard having an invisible illness is while losing support because of your “so called Invisible Illness” and you may feel ready to explode.

I have started our towns first Chronic Pain Support Group and its amazing how much better we feel knowing we aren’t going through this alone.

Trust me, when you finally find someone who understands and deals with the Chronic Illness part of your life along with you, you are never alone.

Obligated

As most of you know, I remake quotes as part of keeping myself busy and lately I have really appreciated having something ‘normal’, something fun that I choose to do. Something I didn’t feel ‘obligated’ to do.

Recently I got an email from an amazing fan who asked if I could make them this quote because this person is having a rough time trying to take care of themselves and at the same time trying to ‘blend in’ to normal society again. (Interrupting my own post to say if there’s a quote you’d like me to make, i do take requests) They can’t help but feel obligated to still try and do everything they did before they got sick or they were afraid someone very close to them would decide to leave if this person could not be ‘normal’ while dealing with a brand new life of Chronic Pain and Illnesses.

This person only recently joined in the ‘battle and journey’ of the world we know so well.

Being only recently diagnosed with Lupus has shattered this persons view of what is ‘normal’ and what is not.

Our ‘journey’ through our world of Chronic Illness is hard enough with a lot of support. This person however has almost no support at all.

I know what its like to feel like we have to not be who we truly are because we fear judgement and scorn. And even worse-we fear that those closest to us will decide sticking around for ‘the sick one’ is too much. Then they leave. It’s happened to me countless times in my now 6th year of this so called ‘journey’.

Sorry! This was originally just supposed to be an image post and the minimum few words that would explain it-not a long rant.

If you take away just two words from this rant, let them be “I’m Here” because I am. No matter your past, your illness, even if you’re not Chronically ill, color of your skin, your background, etc. None of that matters to me. None of it.

I promise; if you reach out to me like this brave person did-I will always be reaching back. No matter what.

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Fear

“You can’t stop being afraid just by pretending what scares you isn’t there” -Michael Marshall.

This quote strikes close to home with me. For years I ran from my problems. Or, tried to. I thought if I stopped thinking about it or talking about it, that they would go away or that I could convince myself that I imagined it.

I have severe anxiety and a lot of things made me have panic attacks. Even the little things like I forgot to do something or that I think I forgot to lock up the house when I left. I can’t stop thinking about it until I get home and check. It makes me a nervous wreck.

I have a lot of things that I am afraid of. Some justified and some that are just ridiculous. My biggest thing lately with all the stress and me being sick is that I am so scared to sleep without my husband at least being in the house with me. So when he goes to work I get so scared of someone breaking in or getting hurt that I stay up all day till he gets home then crash in bed because since I’ve gotten sick I’ve been super exhausted.

I’ve been “sick” for almost two years. I got diagnosed with my one problem right after I got married and then slowly I keep getting more sick and with more illnesses. And the hardest part isn’t the doctors, or the tests, or medications. It’s the fact that I rarely leave the house unless I go shopping for food or whatever else I have to do. So with that comes losing the ability to be social. Okay, not losing the ability, just… Out of practice.

I rarely leave my house other than mostly doctor appointments. And I don’t have any friends that come visit very often. So when I do go out with my friends or try and make new ones it’s very hard for me. I don’t know how to have a normal conversation that doesn’t sound like I’m complaining or making it all about me.

It’s hard to admit but, I seem to just complain lately to anyone who will listen about how much my life sucks in my eyes. When in reality, my life is the best it can be. I just need to let go of the past and focus on getting better and coping with what I struggle with.

And learning to face my fears no matter how ridiculous they may be. Once I do that, maybe I can start moving forward and keep moving forward instead of one step forward and three steps back.

I just need to believe in myself.