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Contribution (TW: suicide, eating disorders)

Contributed by Haylee 

Even though it got more problematic over time, my mental health started slipping when I was only eight years old. This is my story of childhood mental illness.

(TW: suicide, eating disorders)

It started with severe anxiety. I would often have irrational fears of things that weren’t even possible for my circumstances, like my eyeballs falling out. Eventually, in 5th grade, I started having even more irrational fears, along with washing my hands so much that they became red, raw and flaky. I had obsessions and compulsions that were often associated with obsessive-compulsive disorder.

At age 11, I started developing depression and disordered eating. This, towards the end of 5th grade, was the first time I said I wanted to end my life. It was a mess. I was crying a lot, feeling very low self-esteem, obsessing about my weight and thinking too much about what I ate. I even restricted my food intake at some points. 

The last year of my childhood, age 12, I spent experiencing hallucinations and paranoia. I saw demons, weird figures and horrifying things. There were two figures in particular, Gingerbread and Gumdrop, who constantly tormented my mind, telling me to do awful things. The paranoia was especially bothersome to the point that I couldn’t function socially, even with once close friends, or new friends, for that matter.

All of these problems continue every now and then, but have been managed a lot better.

If you’d like to follow me on Instagram, my username is flower_recovery

Invisible Illness, If you have it YOU know it, but no one else does!

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An invisible illness may be one of the cruelest illnesses one can have. The person living with it always knows it’s there, but because no one else can see it, we feel we are being doubted or flat disbelieved all the time. An invisible illness is pretty much just what the name says, an illness or injury that no one can see, but believe me it’s always there! Invisible illness effects the person with it in ways you may never have imagined, we often have severe limitations like how long we can stand, sit, type, hold the phone to talk, there are no limits to the effects. Perhaps one of the most confusing aspects for those that don’t have an invisible illness and those who do is we have flares and remissions, much like a cancer patient. We’ve all met people who look completely “normal”, but as you begin to talk to them and they tell you a little about themselves you are shocked they battled cancer, autoimmune disorders, IBS, and the list goes on.

Continue reading “Invisible Illness, If you have it YOU know it, but no one else does!”

Tips For Surviving The Holidays With Chronic Illness

For some, the hardest part of seeing the holidays right around the corner can be summed up in a few words. FIGURING OUT HOW TO DO IT.

We struggle every day to try and have a normal life as possible while dealing with our illnesses and trials but the holidays are different. We have to have a plan on how we want the time with our family and friends to go and the best way to make the most of it.

Here are some tips that I will be using this year as this is now my 4th Thanksgiving since my diagnosis’s of Interstitial Cystitis, Endometriosis and PFD.

1. Prepare

As always before appointments and anything else that is now a huge part of my life, I prepare. Overly, sometimes even. I always make sure I get enough sleep, that I have taken the time to eat something, even if it is little so that I don’t have a flare up of symptoms while I am out and about.

2. Listen To Your Body

This is another very important one! Listen to your body! We can prepare and stratagize and plan all we want but sometimes our bodies just can’t keep up with all we want to do. If you start feeling like you just have to go home and cut the time short, listen! I know from personal experience that if I try and tell myself I can tough it out and that I don’t want to always leave early because I am hurting but I end up paying for toughing it out or being over confident in myself when I know very well how I can be fine one minute and the next I just have to give up and admit I need to go home and take care of myself for a while.

3. Enjoy The Moment

For me, especially around the holidays, I try my best to enjoy the time I have with family and friends because having fun and feeling good is a rare gift for me. When I feel good, I enjoy doing even the simple things because I know that feeling this good may not last and I need to take every opportunity to enjoy the times with family and friends.

4. Relax

Make time to relax for yourself! Going out for even the simple things you need or want to do can be exhausting and your body is already fighting a tough battle every minute of every day. So, you need to remember to schedule in a little you time! For me I curl up with a good book and put on my comfiest pajama pants and escape into whatever story I picked that day.

 How about you? Do you have any tools that help you navigate the holidays while ill?

Thankful For Them 

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. 

Requests, Anyone?

Spoonie Sanctuary Fan Post Request

If you have a topic you would like to see featured on here, feel free to contact me on any of my Social Media Sites and I will write about it for you 🙂 I also take requests for quotes and you can see my gallery of quotes I’ve made here

Reach out, you never know who may be touched by you. Your words may be just what they need to make it through a rough day. 

I promise if you reach out to me, I will always be reaching back. Because no matter what your brain or other people try to tell you, You. Matter. Always. 

I was listening to the radio one day and they started talking about labels and how people see each other and it really hit home with me so I wrote this blog post which happens to be my most popular post and the first post shared worldwide on The Mighty and IC-Today!!

This blog post was hard for me to write but its also the post that got me some amazing opportunities like being a contributor for Chronic Illness Bloggers (You can see my listing on CIB here) and I just partnered up with Antidote which you can read more about in my recent post here

“No one really talks about what happens if you’re sick and you don’t get better but you don’t die either. You get to live in the margins because its either/or- you’re getting sick or you’re getting better. There’s no in between in our culture. No room for the chronically ill.

-Unknown

The Words We Use

Since being diagnosed with Interstitial Cystitis, Endometriosis and Pelvic Floor along with Depression and Anxiety, I feel like most people have stopped seeing me. They seem to only see the disabled girl with Chronic pain and diseases that have no cure.

When I am introduced to someone new the words and phrases people use to describe me makes me feel small. They make me feel like I am not doing enough to “make myself better.” When they talk about me, they only seem to see the endless stream of tests, doctors, surgeries. They have stopped seeing me and now see me as “The girl with Chronic Pain.”And it makes me feel like I need to push myself harder when in reality I already push myself beyond my limit every single day just to try and have a sliver of the life I once had.

My illnesses are not usually fatal and sadly I’ve come to realize that if you are not in danger of actually dying then people don’t feel the need to help you or use their own energy and resources to help you. This may sound harsh, but I am finding it to be more and more true. When most people hear that someone has a “Chronic Illness” they know that it is most likely going to “drag on” forever so there is no reason to try and help you if you are going to live with your disease forever if there is no cure.

People with chronic illness face a lifetime of pain, exhaustion, and disability. A lifetime of people telling them to get over it, of people telling them they they are too depressing to be around, a lifetime of failing to meet everyone’s expectations, but that is not enough to attract anyone’s attention. Nobody would ever tell a cancer patient to just get over it and stop dwelling on their illness, but people with chronic illness hear this practically every day and that is ridiculous. It is also very hurtful to hear and some of us hear it over and over from our family and friends who cannot understand how we can be fine one minute and then the next we are curled up on the floor or the couch in pain.

I know for some of the best people I have ever met, those who have struggled with not having a diagnosis for years, finally having a name for their symptoms and illnesses is incredibly validating.

Once you finally have a name to what is wrong with you, it makes it much easier to treat it, or at least manage your symptoms and pain. But along with the names of your illnesses and symptoms also comes judgements; at least it does in my life. Some people research your illness and learn at least a little about it so they can help you deal with the emotional part of it and be there for you but then there are those who search google and find places that, for a one time payment can “cure” your disease, or this new medicine that is on the market that has amazing reviews online for being natural or articles by people that have “cured themselves completely using ____” or how thinking positive and talking about your feelings you can convince your body that you don’t have an illness and can therefor “cure” yourself. But then they get upset when you don’t read all the “research” they did or do everything they think you should be doing because the internet says it will help you.

I have only had my illnesses coming up on 5 years, but in that time I have come across so many others in support groups and illness forums that sometimes say they wish they could have a disease like cancer because people with cancer get support from family, friends, even sometimes people they just met. People seem to care more about cancer and they don’t care much if at all about chronic illness because it will go on forever. It’s Chronic. Most Chronic Illnesses have no cures, only treatments so some people will just assume it will be the same thing every day so why bother helping if it is going to be a never ending process?

For me there are not any words on the planet that adequately explain how difficult it is to be disabled by an illness that no one believes is real. For people to not understand how you can look fine on the outside and be smiling but be hurting on the inside. For people to understand how you can do a certain amount of things one day then the next have no energy to do anything, sometimes even getting out of bed is a challenge. For people who can’t understand how you can be fine one minute then the next you are in severe pain. Not to mention the insurance companies will pay for cancer treatment, they won’t pay for most chronic illness treatments or medications. Most of us have to come up with the money out of our own pocket to pay for a medication that may help a tiny bit or not at all.

We are people first. We are still human beings who have feelings and hate that some people have stopped seeing us as a person, but now see us as our illness or our symptoms. It is very hurtful for many of us. We just want some understanding. Some support to know we are not alone. I know my expectations of family and friends can just be silly, but is it really too much to ask for some support even if they don’t believe that I am sick? I could really use some support as I am going through this hard part in my life. I wouldn’t wish my life on anyone, and I do everything I can to be supportive of family and friends even if I don’t agree with their lifestyles or choices. Is it so hard to expect them to extend the same courtesy to me?

The words people use to describe others are important. Based on descriptions and words from other people, when you meet someone new you usually have already formed an opinion based on what others have told you about them. For those of us with Chronic Illnesses, most people automatically come to the conclusion that we are different, that we will never be like them because we have a different life then they do. Most people assume that we will never want to hang out because we hurt all the time. So they stop asking us to go out places. Stop calling. Because in their mind we are disabled, therefore we spend all our time sleeping or trying to feel better. They have already made up their minds about us based on one word. Disabled.

They fail to see how hard we try to still have even a tiny fraction of the life we had before our diagnosis and symptoms started coming around uninvited.When they hear the word disabled most people assume that we sleep all day, don’t get anything done, never go anywhere. They never bother to ask us what our days are like, because what they know about disabilities is what the internet has made us seem like to the outside world. Lazy. Selfish. Attention seeking. Pain pill addicts.

It never occurs to them that if they bothered to even look up our illnesses that we can still do a lot, just not all at once. Hearing the word disabled used to describe someone, most people immediately think of someone in a wheelchair or someone with severe limitations in their movement and their lives. When they see someone like us who looks fine on the outside but still ‘claims’ to be disabled, they get this look on their face like we are horrible people because we are ‘lying’ about our illness. They don’t understand how can we be sick if we look fine on the outside. Society has made us ‘disabled people’ seem like we are just wanting money and free medical care and pain medications from the government. And its rare that someone actually tries to form their own opinion of us instead of believing the internet or the opinions of others that claim they know more about our diseases than they do. They believe the internet or other people because it is easier than getting to know us and trying to form their own opinions of us. It is easier to just believe what they are told rather than having to spend time with us when they ‘have better things to do’

We fight every day just to get out of bed while they take the little things for granted. Most people think that because life is the way it is for them that it will always stay that way. They never think of what would happen if all the things they were used to suddenly weren’t around anymore. They are used to going places all the time, feeling healthy, being able to go on long road trips, go to the bars, have a ‘normal life’ Have a relationship. Not have to worry about each and every minute of every day and how it will affect you and your ability to do even the simple things that they do without even thinking of it as a challenge. For them, that is just the way it is for them. They never think life would be any different.

What would they do if one day they woke up and they were suddenly sick with a chronic illness and their whole lives were about to change forever? What would they think if one day they suddenly could no longer go places without planning for every minute of it? Or having to start taking many medications? Of their friends who suddenly walk out of their lives after learning of their new life? Of feeling exhausted 24/7? Of needing a wheelchair? Of needing support to walk up a flight of stairs or even just a few steps? Of not being able to do even the simplest of things they used to do before they got sick?

They judge us each and every day. With their words. The looks. The whispers and the giggles as we struggle to walk upright or walk funny due to our pain. If they woke up one day and their whole life had changed, would they finally see that we are people too? We are not just The Disabled People.

We have feelings. We matter too. Just because we are different it should not make us ‘outcasts’ in the eyes of someone ‘normal’

We fight every single day just to get out of bed and put on a brave face. We do the best we can with what we have. There are people in my life that do not think of the hurtfulness of the words they use to describe me. I am not just the disabled girl they know. I am a person first. My illness is not who I am. It is a part of me, but it does not mean that I have to let it control me.

My name is Karley and I suffer from Chronic Illnesses. I am a person first and foremost. I am not the disabled girl. I have a name and I am more than my symptoms and illnesses. I refuse to let my illness control my life and how people see me. If they cannot see past the disabled parts of me, they have no right to be in my life anymore. I am a person. I have feelings. My illness is not who I am. I am stronger than my disabilities. I am doing the very best that I can with what I’ve got.

Instead of seeing me as disabled or having chronic illnesses that have no cure, try using my name instead. I am a human being. I have a name. or have you spent all of your time being so focused on the labels that surround me and my life that you don’t even know my name?

After writing this post, I made this. Because we do matter. We all do. No matter our limitations or illnesses. (My Chronic Pain Awareness colors are Teal for Interstitial Cystitis and Yellow for Endometriosis)

Who Rescued Who?

*If there is a topic you would like for me to write about, or just have something on your mind, please don’t hesitate to contact me on any of my Social Media Sites and I promise I will write about it on here*

Before I start this post, I have to apologize. My moods have been all over the place and I feel like I am taking steps backwards in dealing with my illness instead of moving forward and in trying to cope with everything, my writing has suffered. So, I’m sorry. But I am determined to try and keep moving forward instead of backwards. All I ask is please be patient with me. This journey is very hard for me, especially lately. My writing has suffered but I will continue to keep writing as I find ways to deal with it all.

My writing may take awhile to get back to where it was, but I will get there. I will get passed this. I will begin writing more and expanding the topics I write about. I can do this.

With the apology also comes the best news! I finally have a fur baby! His name is Sandy (We thought he was a girl until we took him to the vet to make sure he was okay) and he is such a cuddler! He loves to lay in my lap or on my chest near my heart and fall asleep. He also loves to sit on the armrest of our couch and watch Grey’s Anatomy with me 😀

I have wanted a kitty for years and one day my husband and I were just hanging out in our apartment when we heard a meowing noise. I of course had to go see what was going on and under a car near our parking spot was this adorable baby kitten who walked up to me and meowed and even let me pick him up! We took him back inside, fed him tuna and he promptly curled up in my arms and went to sleep.

We have had him for about 2 weeks now and I couldn’t be happier. I finally have a fur baby, my husband and I just celebrated our 5th anniversary, and I am finally starting to find a combination of medications that help with some of my symptoms although I am far from where I wish I was with my illness.

When we rescued him, he rescued me <3

Inflammation: Could It be the Problem?

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Inflammation: Could It be the Problem? 

If you reduce inflammation in your body you will look younger and feel better and drastically reduce your risk for chronic illness. Inflammation and chronic diseases go hand in hand. By lowering the inflammation in your body you will be drastically reducing your chances for developing chronic illness and therefore, increasing your life expectancy. Did you know there is a strong link between inflammation and debilitating conditions like heart disease, arthritis, cancer, allergies, asthma, Crohn’s disease, Alzheimer’s and the list goes on. You name a chronic condition and you can bet inflammation is involved. Inflammation is the bodies natural reaction to injury and infection. So how did a normal and natural reaction designed to let us know there is a problem go so out of control? Read on…

Continue reading “Inflammation: Could It be the Problem?”

New Feature-Clinical Trials Finder

I am proud to announce that Spoonie Sanctuary has recently partnered with Antidote to help bring all of you wonderful people more options for finding clinical trials! I for one am very excited for this as there was only one clinical trial that I knew of for Interstitial Cystitis and it was all the way across the country! With this new tool, I was amazed to find there are over 60 clinical trials for Endometriosis! (For those who suffer from Interstitial Cystitis, when searching in the tool please selection Interstitial Cysts as they are working on changing it to the full name but for now, that is what you search for)

As most of you know, I was diagnosed with Interstitial Cystitis, Endometriosis and Pelvic Floor Dysfunction along with some mental health issues back in 2012 and have since been trying to find clinical trials in the hopes of learning more about them and maybe one day finding one that is a good fit for me. I am so very happy that we are now partnered with Antidote!

They are willing to help however they can if you have any questions!

If you are interested in learning more about current clinical trials, you can use the Antidote trial finder tool below as well as on the sidebar of any of The Spoonie Sanctuary pages. After you answer a few questions, the tool will create a list of clinical trials most relevant to you.

Please note that this will open a new window and take you to the Antidote website. We are partnering with Antidote to bring you information about clinical trials near you. You will be given a list of trials you may be interested in.

The Me Before My Illness

My husband and I go to my mother in laws to visit and do our laundry about every two weeks and for some reason the last few weeks my mind keeps going back to how much I used to be able to do-the me before I got sick. When I was in High School, I used to work with a lady in my ward who cuts hair and would walk what was apparently almost 3 miles from the High School to the salon she runs. Every day after school I would blast my music and walk all the way there to work for a few hours before getting a ride home. To some it may not seem like much, and to me back then, it was easy. I enjoyed it. But while driving passed it awhile ago, it occurred to me just how much I was able to do before. How much healthier I was back then.

No, this isn’t a post about me feeling bad for myself, although I have been struggling with it lately as my health seems to be getting worse day by day. This, as strange as it may sound, gives me hope. Yes, I am sick. Yes, I may never be the energetic person I once was, but maybe I can someday get even 1% more energy and someday start pushing myself farther. When you get sick, after a while it becomes almost easy to sit around and not do much, first from the pain, then slowly, so slowly sometimes you don’t even notice at first, it becomes a habit.

As it has gotten colder outside and my muscles tense up and groan whenever I try and move, I still try to do even just a little every day. Some days that means only going from my bed to the couch and back but there are some days where I can make it outside into a chair and sit outside and try and let the fresh air clear my head.

I used to spend all day on the computer and once I was situated on the couch I rarely moved. Now I am able to sit up in bed and read and maybe to some it isn’t really that hard but, for me, it helps me feel like I am being more productive. Reading and learning (I am currently teaching myself ASL) instead of mindlessly watching season after season of the same shows over and over.

This post is everywhere, and I apologize. But it’s me, and its real.

Energy Boost Naturally

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Do you feel run down? Tired all the time? Exhausted? There is no doubt about it, one of the most common complaints in the US today is stress and fatigue. This common health complaint often revolves around not getting enough energy. Feeling tired is a normal and natural signal that tells you it’s time for sleep, and getting a good night’s sleep may be all needed for relieving any fatigue that may be plaguing you. However chronic fatigue bad enough that you have trouble completing your daily task is something altogether different. If you have this type of fatigue there may be a need for a change in your lifestyle.

Our country’s dependence on medications to sleep and then stimulants to wake up and function seem to get worse by the week. Turning to drugs and stimulants to sleep, wake up, and keep you going throughout your day is a downward spiral with no end in sight. Natural energizes have a great advantage over traditional food stimulants like caffeine, sugar, and sodas. They don’t exhaust the body and are supporting rather than depleting. Why is it that some people juggle demanding careers, families, and even run marathons, while others go trough their daily lives exhausted and barely making it from one minute to the next? Just a few reasons are dietary deficiencies, body imbalances, sickness, prolonged stress, emotional depression, and negativity, just to mention a few. What can you do to turn this around and help your body recover and restore depleted energy stores? Continue reading for a few suggestions or contact me, so that we can work together to develop a customized program to help you heal.

Continue reading “Energy Boost Naturally”

Help, My Friend Won’t Stop Having Fibromyalgia At Me!

Carolyn Hax

Dear Carolyn: One of my friends has had fibromyalgia for the past year. It makes me sad, and so I like to find alternative treatments and cures and tell her about them. She’s gotten really annoyed with me for doing this, but I am only trying to help and I think she should be more willing to listen to what I’ve found. She has a doctor she sees regularly and takes medication, but I don’t know why she brushes it off when I give her my advice. I feel really unappreciated and am starting to wonder if she even wants to feel better. – California

Dear California,

Your friend has put you in a terrible situation, without apparent regard for the degree of injury here. Sure, she lives with a painful, chronic medical condition that affects her ability to participate in the world and yadda yadda yadda, but you feel sad and unappreciated. Where, I ask you, is justice?

Just because your friend manages her condition with the assistance of medication and a trusted medical professional of her choosing doesn’t mean she’s getting the best care available to her, which is to say, the care recommended to her by a person who can use Google.

The bare fact is that your friend’s fibromyalgia is, fundamentally, about you. On the surface, that may seem counterintuitive–it may seem like your friend’s medical condition is solely her business, and that the management thereof is something she alone is entitled to, but that completely erases you, a person who read a thing about gluten one time, from the equation. And that isn’t fair–indeed, it’s even less fair than having fibromyalgia, which your friend could easily not have if she only read those 45 articles you just forwarded her from WebMD.

Why would your friend brush off advice–advice you heard from not one, but probably TWO yoga teachers–about managing her medical care just because she feels more comfortable treating her condition in the manner of her own personal choosing? It’s logically because she does not want to feel better, which is a direct attack on you, personally, the individual in this situation with the heaviest possible burden to bear.

If you stopped advising your friend about the miracle cures available according to pamphlets you picked up outside Whole Foods, who knows what might happen? She might continue to make the decisions that she feels are best for her own health, and you’ll be left with no one’s medical care to aggressively manage without their consent, an unimaginable travesty.

But the sorry truth is that we cannot fix everyone, can we?

The Words We Use (Fan Repost Request)

Since being diagnosed with Interstitial Cystitis, Endometriosis and Pelvic Floor along with Depression and Anxiety, I feel like most people have stopped seeing me. They seem to only see the disabled girl with Chronic pain and diseases that have no cure.

When I am introduced to someone new the words and phrases people use to describe me makes me feel small. They make me feel like I am not doing enough to “make myself better.” When they talk about me, they only seem to see the endless stream of tests, doctors, surgeries. They have stopped seeing me and now see me as “The girl with Chronic Pain.”And it makes me feel like I need to push myself harder when in reality I already push myself beyond my limit every single day just to try and have a sliver of the life I once had.

My illnesses are not usually fatal and sadly I’ve come to realize that if you are not in danger of actually dying then people don’t feel the need to help you or use their own energy and resources to help you. This may sound harsh, but I am finding it to be more and more true. When most people hear that someone has a “Chronic Illness” they know that it is most likely going to “drag on” forever so there is no reason to try and help you if you are going to live with your disease forever if there is no cure.

People with chronic illness face a lifetime of pain, exhaustion, and disability. A lifetime of people telling them to get over it, of people telling them they they are too depressing to be around, a lifetime of failing to meet everyone’s expectations,  but that is not enough to attract anyone’s attention. Nobody would ever tell a cancer patient to just get over it and stop dwelling on their illness, but people with chronic illness hear this practically every day and that is ridiculous. It is also very hurtful to hear and some of us hear it over and over from our family and friends who cannot understand how we can be fine one minute and then the next we are curled up on the floor or the couch in pain.

I know for s0me of the best people I have ever met, those who have struggled with not having a diagnosis for years, finally having a name for their symptoms and illnesses is incredibly validating.

Once you finally have a name to what is wrong with you, it makes it much easier to treat it, or at least manage your symptoms and pain. But along with the names of your illnesses and symptoms also comes judgements; at least it does in my life. Some people research your illness and learn at least a little about it so they can help you deal with the emotional part of it and be there for you but then there are those who search google and find places that, for a one time payment can “cure” your disease, or this new medicine that is on the market that has amazing reviews online for being natural or articles by people that have “cured themselves completely using ____” or how thinking positive and talking about your feelings you can convince your body that you don’t have an illness and can therefor “cure” yourself. But then they get upset when you don’t read all the “research” they did or do everything they think you should be doing because the internet says it will help you.

I have only had my illnesses for a little over four years, but in that time I have come across so many others in support groups and illness forums that sometimes say they wish they could have a disease like cancer because people with cancer get support from family, friends, even sometimes people they just met. People seem to care more about cancer and they don’t care much if at all about chronic illness because it will go on forever. It’s Chronic. Most Chronic Illnesses have no cures, only treatments so some people will just assume it will be the same thing every day so why bother helping if it is going to be a never ending process?

For me there are not any words on the planet that adequately explain how difficult it is to be disabled by an illness that no one believes is real. For people to not understand how you can look fine on the outside and be smiling but be hurting on the inside. For people to understand how you can do a certain amount of things one day then the next have no energy to do anything, sometimes even getting out of bed is a challenge. For people who can’t understand how you can be fine one minute then the next you are in severe pain. Not to mention the insurance companies will pay for cancer treatment, they won’t pay for most chronic illness treatments or medications. Most of us have to come up with the money out of our own pocket to pay for a medication that may help a tiny bit or not at all.

We are people first. We are still human beings who have feelings and hate that some people have stopped seeing us as a person, but now see us as our illness or our symptoms. It is very hurtful for many of us. We just want some understanding. Some support to know we are not alone. I know my expectations of family and friends can just be silly, but is it really too much to ask for some support even if they don’t believe that I am sick? I could really use some support as I am going through this hard part in my life. I wouldn’t wish my life on anyone, and I do everything I can to be supportive of family and friends even if I don’t agree with their lifestyles or choices. Is it so hard to expect them to extend the same courtesy to me?

The words people use to describe others are important. Based on descriptions and words from other people, when you meet someone new you usually have already formed an opinion based on what others have told you about them. For those of us with Chronic Illnesses, most people automatically come to the conclusion that we are different, that we will never be like them because we have a different life then they do. Most people assume that we will never want to hang out because we hurt all the time. So they stop asking us to go out places. Stop calling. Because in their mind we are disabled, therefore we spend all our time sleeping or trying to feel better. They have already made up their minds about us based on one word. Disabled.

They fail to see how hard we try to still have even a tiny fraction of the life we had before our diagnosis and symptoms started coming around uninvited.When they hear the word disabled most people assume that we sleep all day, don’t get anything done, never go anywhere. They never bother to ask us what our days are like, because what they know about disabilities is what the internet has made us seem like to the outside world. Lazy. Selfish. Attention seeking. Pain pill addicts.

It never occurs to them that if they bothered to even look up our illnesses that we can still do a lot, just not all at once.  Hearing the word disabled used to describe someone, most people immediately think of someone in a wheelchair or someone with severe limitations in their movement and their lives. When they see someone like us who looks fine on the outside but still ‘claims’ to be disabled, they get this look on their face like we are horrible people because we are ‘lying’ about our illness. They don’t understand how can we be sick if we look fine on the outside. Society has made us ‘disabled people’ seem like we are just wanting money and free medical care and pain medications from the government. And its rare that someone actually tries to form their own opinion of us instead of believing the internet or the opinions of others that claim they know more about our diseases than they do. They believe the internet or other people because it is easier than getting to know us and trying to form their own opinions of us. It is easier to just believe what they are told rather than having to spend time with us when they ‘have better things to do’

We fight every day just to get out of bed while they take the little things for granted. Most people think that because life is the way it is for them that it will always stay that way. They never think of what would happen if all the things they were used to suddenly weren’t around anymore. They are used to going places all the time, feeling healthy, being able to go on long road trips, go to the bars, have a ‘normal life’ Have a relationship. Not have to worry about each and every minute of every day and how it will affect you and your ability to do even the simple things that they do without even thinking of it as a challenge. For them, that is just the way it is for them. They never think life would be any different.

What would they do if one day they woke up and they were suddenly sick with a chronic illness and their whole lives were about to change forever? What would they think if one day they suddenly could no longer go places without planning for every minute of it. Of taking many medications. Of feeling exhausted 24/7. Of needing a wheelchair. Of needing support to walk up a flight of stairs. Of not being able to do even the simplest of things they used to do before they got sick?

They judge us each and every day. With their words. The looks. The whispers and the giggles as we struggle to walk upright or walk funny due to our pain. If they woke up one day and their whole life had changed, would they finally see that we are people too? We are not just The Disabled People.

We have feelings. We matter too. Just because we are different it should not make us ‘outcasts’ in the eyes of someone ‘normal’

We fight every single day just to get out of bed and put on a brave face. We do the best we can with what we have. There are people in my life that do not think of the hurtfulness of the words they use to describe me. I am not just the disabled girl they know. I am a person first. My illness is not who I am. It is a part of me, but it does not mean that I have to let it control me.

My name is Karley and I suffer from Chronic Illnesses. I am a person first and foremost. I am not the disabled girl. I have a name and I am more than my symptoms and illnesses. I refuse to let my illness control my life and how people see me. If they cannot see past the disabled parts of me, they have to right to be in my life anymore. I am a person. I have feelings. My illness is not who I am. I am stronger than my disabilities. I am doing the very best that I can with what I’ve got.

Instead of seeing me as disabled or having chronic illnesses that have no cure, try using my name instead. I am a human being. I have a name. or have you spent all of your time being so focused on the labels that surround me and my life that you don’t even know my name?

My Simple Joys & “Must Haves” While Dealing With Chronic Illness

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 that I just shut everyone and everything out. Then I do what I shouldn’t. I spend hours telling myself that this illness is my fault, that it won’t ever go away so I will be trapped inside my own hell forever, and how the chronic illness ruined my life.

But I need to stop focusing on the negative aspects of my illnesses and try better to see the good things in my life, silly or not. So I made a list of all the things that 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.

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

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, its nothing new

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

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 find some that are not in the word search gave me a good distraction from my stress. Now years later, it still helps distract me; whether its from stress, people, my moods or my pain.

Girly VanitiesWhen 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.

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.

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 in books.

Netflix- On those days that are 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

Ice Packs- When I push myself passed 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 overduing myself, even something small like walking across the parking lot to throw away trash.

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 berable. Suprising as well as helping my naseau, 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.

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.

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.

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

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 experiece 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.

Tens Unit- If you do not know what a tens unit is, basically you attatch four sticky pads to what area of your body 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 while dealing with my illnesses.

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

My Illness Is Not In My Head, Or My Fault

There have been more people in my life than I can count who, when learning about my illness or disabilities, say the phrase ‘It’s all in your head’ or better yet ‘Try ___, then you will feel better and be cured.’

Hello? Do you know what the words ‘Incurable’ and ‘Disabled’ mean?

Sometimes I just want to say ‘Well, okay if it is all in my head, how to do explain my bladder being scarred and pain that literally makes me some days unable to walk? Or how about how my organs are stuck together, bruised, not where they should be in my body and has more scars than I have ever seen in my life?’

But no, I stay silent and give a half smile and pray for the conversation to be over. Blowing up at them will do no good.

My illness is not my fault. No matter what others say. I did nothing to cause this. My illness is not in my head. It’s not your fault either. Nor is it in your head. I understand.

Family and friends sometimes call me and say ‘Why are you avoiding me, what did I do?’ You treated me like crap. Like my life doesn’t matter. That you are more educated in my illness than I am. That you know better what can heal me.

It messes with my mind so I have decided to just let them go. Their negativity and harsh words and looks are not helping me. And neither are they.

Whenever I used to think of support groups I would think that it meant there was something wrong with me. I realize now how wrong I was back then.

I have met some of the best people in support groups for Chronic Invisible Illness. They just get you. They are there for you when you have a bad day. They get the feeling of wanting to do something but not having the energy. There isn’t anything you can say that they haven’t gone through right along with you.

Support groups can be a huge help no matter what you are going through. Just reaching out can make a huge difference.

Never be afraid to reach out. You never know who you will meet.

Blog Post Topic Request :)

My writing may not always be good, sometimes, in my opinion, it can be down right terrible.

Most of you know by now that since I started blogging I have opened my blog and social media to anyone who may have a topic they want to know more about, and it does not have to be Chronic Illness related. They send me any topic and I write a post and share it with all of you.

I also respond personally to every email and send cute ecards to some of my followers because i feel like its important; not just to make them feel better but to also remind them that as long as they reach out to me i will always be reaching back.

I have been struggling with my health more than usual which has kept me in bed or on the couch resting and feeling generally crappy but, as always, i try to not let my feeling bad affect my writing and doing my best to help others because i know what its like to be ignored, made fun of and even outright being treated disrespectfully due to my illnesses and the long string of limits.

While checking my email this morning, I got a sweet note that says ‘Your words have inspired me so much and you have changed my life with your words and experiences. I just wanted to thank you for that and ask what your #1 goal as a writer is?”

Here is my answer 🙂 Please, if you have a topic, or question, or even just need to vent, I am here. Always.

My #1 Goal As A Writer

I know that I should probably have more than one goal as a writer, but for now I only need one.

There is only one thing I want to accomplish with my writing. Some may think its strange or not practical, but it makes sense to me and that’s all that matters.

I’m not stupid enough to believe that my writing can change the world, but maybe somewhere there is a girl or boy who is having a bad day and they see my writing and for five minutes everything is a little bit better for them.

If you have a topic in mind, a question, or even just need to vent, you can find me on my Social Media Sites and as long as you reach out, I will always be reaching back. Elizabeth and I both will. Because we care. I. Believe. In. You.

If Amy Bleuel’s Death Leaves You Feeling More Helpless, Please Remember This

NOTE: Please reach out, you never know who will be touched by you <3 If you reach out, I will always be reaching back. You. Are. Not. Alone. I. Believe, In. You. You can reach me at anytime on any of my Social Media Sites

When someone dies by suicide, it’s often accurate to blame stigma. If this person had only been comfortable talking about their suicidal thoughts, we think, perhaps they could have been helped. It’s the basis of every “anti-stigma” campaign, really. To end suffering. To pull people out of shadows. To save lives.

That’s why it’s a complex kind of painful to lose someone in the suicide prevention community to suicide. Someone who wasn’t fully in the shadows. Someone who didn’t let stigma stop them from speaking out about suicidal ideation and previous suicide attempts. Someone who actively spread messages of hope for others who face similar struggles.

It’s really hard to lose Amy.

If you don’t know Amy Bleuel, you probably know her work. She’s the reason the semicolon is more than punctuation for many who deal with both self-harm and suicidal ideation. Her nonprofit, Project Semicolon, brought together people who found hope in her message — that just like a semicolon, you can continue even when “your sentence” seems finished. The organization’s tag is: “Your story isn’t over.”

When sharing this news to the mental health community, my heart broke not only for Amy’s friends and family, but for everyone in the mental health community who saw the semicolon as a symbol of hope. My biggest fear was that those struggling upon hearing this news would feel like those who speak about suicide prevention were bullshitting them. I didn’t want our words of hope to lose meaning. I didn’t want people to lose hope for their own stories.

But all this proves is that suicide prevention is complicated, and we have a lot of research and work to do so more lives can be saved.

Suicide prevention work is done almost exclusively by people who have lost someone to suicide or who have experienced their own suicidality. Often, the calling to suicide prevention comes close on the heels of a near miss with an attempt, or the suicide death of someone we love, and it comes with urgency. In that way, it puts many of us in a precarious position: we so desperately want to save others from suicide that we forget to save ourselves. We dive in with our life raft before we learn to swim. — Dese’Rae L. Stage, suicide prevention activist and founder of Live Though This

I wanted to acknowledge the complexity of Amy’s death. I wanted people who feel hopeless right now to know we understand how much this sucks. We’re not going to pretend it didn’t happen. But we will tell you in no way does this taint the amazing work Amy did. It doesn’t make your semicolon tattoo have less meaning.

Amy fought against her own thoughts of suicide, and in doing so she gave so many people the opportunity to share their pain, their endurance, and their triumphs in a way that simultaneously spurred discussion and battled prejudice. For those of us in the field of suicide prevention, we’re reminded of the need to redouble our efforts, work harder, work more effectively, and to ensure people that hope, help, and healing is happening. —  Chris Maxwell, Advisory Board Member for OurDataHelps.org

I wanted to talk to other suicide prevention activists to get their thoughts on where we go from there. All echoed the same theme: We keep going. We keep spreading hope. We work harder.

Yes, Amy may have died by suicide. That is a risk for anyone who has survived a suicide death or attempt, like she had. It only makes her message more poignant and powerful. People in my field react with even more urgency to better understand suicide, and to innovate ways to save lives. I can understand why so many people in suicide prevention have a heavy heart today. I do, too. I’m going to be mindful, take good care of myself and others… and I’m going to keep my focus. On the day Amy died, another 120 people died from suicide, too. And each day it’s the same. My mission is to change that. A loss makes me fight harder to eliminate the blight of suicide in our communities. Amy’s mission lives on, even after her death, and it lives on in me, and thousands more.” — Dr. April Foreman, Licensed Psychologist and suicide prevention activist

I’ll leave you with one last quote from Dese’Rae L. Stage, suicide prevention activist and founder of Live Though This.

I’m guessing Amy didn’t know how deeply she affected so many people. I’m guessing she didn’t think there was a rescue boat for her, but I think it was just a foggy night and she couldn’t see her lighthouse. 

If anyone is struggling right now, please take care of yourself. Please talk to someone about it. Please make use of the resources we do have. You can text the Crisis Text Line at 741-741. You can call the National Suicide Prevention Lifeline at 1-800-273-8255. You can call The Trevor Project at 866-488-7386. Or, consider donating your social media data for suicide prevention research at OurDataHelps.

Amy Bleuel, Founder Of Project Semicolon, Passes Away At 31

What Amy accomplished is simply amazing and I have no words to describe how hearing this has affected me. We will miss you Amy. <3

She was such an inspiration to all those who reached out and had her reach back to help us get through some of the toughest things in our lives and learn that its okay to not be okay but that there is always hope that things will get better; that your story isn’t over yet. Please, reach out, you never know who will be touched by you.

Amy Bleuel, known in the mental health community as the person behind the popular semicolon tattoo, passed away on Thursday, March 23 at the age of 31, Project Semicolon confirmed to The Mighty on Wednesday.

Update March 30 8:45 a.m. PST: The Mighty has confirmed Amy died by suicide. For whoever needs help right now, you can contact the Crisis Text Line by texting “START” to 741-741, or call the National Suicide Prevention Lifeline at 1-800-273-8255.

If you see a semicolon as more than just punctuation, you probably know Amy. Her movement, called Project Semicolon, is a global nonprofit dedicated to presenting hope and love for those who are struggling with mental illness, suicide, addiction and self-injury.

She told The Mighty in 2015, “In literature, an author uses a semicolon to not end a sentence but to continue on. We see it as you are the author and your life is the sentence. You’re choosing to keep going.”

The semicolon manifested in both drawings and tattoos and quickly became a sign of hope for those who struggled with self-harm and suicidal thoughts.

In The Mighty community, people have written about their semicolon tattoos, and again and again we would see semicolon tattoos in the pictures people share with us:

“This is the tattoo I’m proudest of.” — Kris Lindsey

 

“My husband got this tattoo for me to show his support for my mental illness. I have bipolar 2, generalized and social anxiety and obsessive compulsive disorder.” — Jennifer Rushton

“My sister and I got matching tattoos last year – a combination of a semicolon and a butterfly with our fingerprints as the wings, representing both of our struggles with depression as well as many people we both know who have various mental health problems.” — Rachel Dillon

“I had postpartum anxiety and OCD after my son, and after overcoming it I got this tattoo in honor of the semicolon project! That I chose to continue my sentence instead of end it.” — Ethan Lexie Clouse

I got the word warrior because I fight with these thoughts every day, and I survived a suicide attempt. The semicolon is in there because it symbolizes that my story isn’t over. I got it right there on my arm so I can see it clearly every day and remind myself to stay strong.” — Ashley Lake

Thank you for the impact you’ve had on the mental health community, Amy. You will be missed.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “START” to 741-741.

Resonant Botanical Invigorate Lotion Chronic Illness Bloggers Review

Disclosure: I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

I keep being amazed at all of the products I am giving the chance to review on Chronic Illness Bloggers as each one has helped me in some way. Today I will be reviewing Invigorate Pain Relieving Lotion that can bring relief to those who suffer from Rheumatoid Arthritis and Muscle and Joint Pain. I suffer from joint and muscle pain a lot more than I have in the past and was really happy to be chosen to review this pain relieving lotion.

“Partners on your natural path.” #resbontanicals

 -Picture taken by me for this amazing lotion

It advises you to “Rub on painful areas for specific relief and on the abdomen below the bottom rib on the left side (Spleen area), great for warm up and after work out. Contains Magnesium Oil for deeper penetrative relief, contains MSM for re[air of collagen and tendons and apply heat for 30 minutes to applied areas for maximum relief”

This lotion from the Invigorate is dedicated to those who deal with Chronic Pain. When I first recieved this, I was honestly skeptical because most things I have tried from friends and family that are natural and promise relief did not work for me. Maybe my frame of mind had something to do this it, but after only a few uses, my back pain and aches were finally tolerable and I was even able to shower for the first time in over a year because the pain in my back went away and I was finally able to stand up long enough to shower.

The Invigorate lotion comes with a Pump on the top and is in a metal type container. Just a little squirt spreads far and is non greasy as I have seen with other lotions out there.

The price for this product goes from $20-55 depending on the size and type of container. You can always get similar creams and lotions and other products at most health food stores but with this you get quality as well as an amazing price and I am excitedly waiting for my order to come in the mail. This lotion also comes in travel sizes which is a blessing for Spoonies like us who need to have an arsenal of things in our purses and on the go!

I am not sure if it’s because of the container its in or not but when I first tried this as well as later on, it was cool to the touch and although I hate the coldness of most things, it has helped me immensely with my back and shoulder pain that comes with almost any change at all in the weather outside. In less than an hour the sore and tense muscles of my shoulders and back is down to a tolerable level which helps me do more lately during the day than I was able to do before.

To anyone who suffers with joint pain or systematic pain, I would 100% recommend this to  each one of you! This amazing lotion also has been known to help some with anxiety although I haven’t seen much help in that department yet but I use this at least 3 times a day and always again right before I go to sleep.

This product includes the ingredient MSM (Methyl Sulfonyil Methane) which may be more helpful in those suffering with joint conditions such as Hypermobility/EDS & Arthritis. You can read more about this on the Product Page

They also have an amazing (I think I use this word too much!) Pay It Forward program! “Resonant Botanicals Pay It Forward program is a wonderful way to share our products with less fortunate folks in need of natural pain or anxiety relief.

I have tried, in my opinion, way too many over the counter and even prescription joint and back pain relief creams and lotions and this is by far the best I have tried! The smell at first was off putting to me and made me crinckle my nose although it has completely normal ingredients.

This bottle sits right next to my bed and I am going to find a smaller bottle that I can take with me in my purse without having to take it away from my home.
I recommend this to everyone who suffers from any sort of joint pain 100%! This girl is a very happy one since finding something that finally works and I actually was able to go to the mall and walk around for the first time in over 2 years! Chronic Illness has changed my life but I refuse to let it keep me down!

My Holistic Journey (Life Changing Event)

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As I was saying, life changing to say the least…
A beautiful days drive, uneventful, relaxing, and almost home for the first time in two weeks. Us pulling the camper, our eleven year old son watching a movie in the back seat, and out teenage daughters following in the truck. Five o’clock Friday night traffic, on Interstate 75, just six miles from the Michigan, Ohio line we got into construction. Anyone who has lived in a northern state knows summer is construction season, they have to fix the roads while the weather is good cause winter is always right around the corner. The construction signs warned that once you cross the state line traffic shifts to the right lane and the shoulder of the highway, all semi trucks must travel in the left lane and not in the right lane, which was the shoulder of the highway.  With us pulling a fully loaded camper my husband decided to stay in the far right lane (the shoulder lane), since we are slower moving traffic with the camper.  Despite the warning signs the semi truck in front of us never heeded the warnings and did not move to the main lane of traffic, just six miles into Michigan we were approaching an exit with a decorative arched bridge when suddenly the semi truck stopped without warning.

Continue reading “My Holistic Journey (Life Changing Event)”