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Thursday, June 28, 2018

I’m Worth It, So Is My Cause

Don’t Be That Person 

I am sick, let’s just make that point clear right now! I need people in my corner, willing to fight this battle with me. I need emotional support, physical support and reliable support. I know that on the outside I look fine, and if you don’t see me every day, but you see my happy smiling face on social media, I must be doing great. I know that’s how people think. You don’t understand my disease, how to pronounce it, spell it or what it really even does to me. Don’t be that person, just don’t! Family and friends alike. Strangers, I don’t expect more from, but my loved ones, I do! Don’t get me wrong, I have some truly amazing people as a support system in my personal circle. Not everyone is oblivious.

So many turn a blind eye though. Is it because they just haven’t seen my pleas for them to step up, just by hitting one button, possibly, but in many cases, no! Is it that they just think I’m seeking attention and that nothing is really wrong with me? Change didn’t happen because one person spoke up. It happened because that person never gave up in the face of rejection. They pushed harder and harder until people listened. That’s what I have to do, but for those close to me, those pleas shouldn’t fall on deaf ears and blind eyes. These people should be the first people to have my back. Sadly, many choose to be, “that person”! I’m asking you not to be!

I Didn’t Do This To Myself

Some people act as if I caused this. Treat me as if I don’t need or deserve support or acknowledgement because it’s my fault. At least that’s how it feels when you are talking to someone and they blow you off. Or say something like you must not be to sick if you can still do this or that. Or when they say, it could be worse, you could have cancer. Excuse me, but when did you spend a day in my shoes? Just tell me how you know what I feel and how bad it is? People, let’s be real, cancer is horrible, it can be tragic and terminal. Don’t think for one second what I’m experiencing can’t be as well. I didn’t choose this, so for people to tell me it could be worse, or I must not be too bad, it just makes me feel like they think I’m choosing to act like this is a bad thing. Trust me it’s not an act!

People with AS have AS because something genetic in their body isn’t working properly. These people didn’t choose this. It’s not like there is a DNA line to stand in and pick witch genes will make you up and which won’t. We just got the unfortunate marker pattern to be jacked the f*ck up! How lucky are we? ( Eye Roll) seriously, we would get rid of it if we could. So please don’t make me feel like I don’t deserve the acknowledgement and support. I need people to understand, to be supportive because I didn’t make crap choices in life to end up like this. I’m not begging for sympathy and attention because I created my own disaster, this disaster chose me, and I need to not feel like I’m alone!

Reliability, Support and Awareness 

For me and many others like me, we don’t have a very big personal support system. It is usually a handful of people and I mean maybe 5, that actually know us, and the rest is a bunch of strangers that get it because they have AS too. Some people don’t even have a handful, they have 1 or none! That’s why it’s important that you step up and join this cause. I’m worth it, they are worth it. We are all worth it.  #ASLivesMatter.  Seriously though, some of these people have nobody to turn too. That’s why you need to do your part. All you have to do is share a post. Simple right?  I mean you already share the Cancer,, Alzheimer’s, Diabetes, and other such post. You do, I see them! So what’s one more, for a disease that affects your loved one?

Each time I see someone share about other diseases, It’s like a slap in the face, and someone yelling at you that AS isn’t real. It hurts, it sucks. Why? Because they can’t be bothered to share my post, and nobody knows what the hell AS is, because nobody wants to get actively involved in raising awareness for something they never heard of before. I need people I can rely on, that will be a force to drive our cause. People that I know I can call on the really bad days and I know they will be there. Not telling me they can’t come, they are to busy. I need to be there for someone else, they are having a hard time. I AM HAVING A HARD TIME!!! When do I get to lean on your shoulder? When do I become important enough?  The moment my disease puts me in the hospital, takes my life? Tell me, when will it be?

Comorbidities And Other Complications 

AS its self isn’t typically terminal. However, the fact is that AS has several known Comorbidities. The presence of other chronic diseases. This is in often case more than 1 additional diagnosis. Some of these can actually be terminal. Then the complications of AS can be terminal. For example, AS cause damage from inflammation, that damage can then cause hardening of tissue including heart muscle and lung tissue. In those cases cardiac arrest and respiratory failure can occur and are more likely to occur in AS patients. My heart and lungs are not doing their job properly and that puts me at an increased risk for death related to these events. Depending on the exact findings how much that risk increases. People are more likely to become fully disabled and the results of full disability can lead to many damaging issues that could result in death. It puts you at an overall greater risk, especially if you do not receive adequate care.

Spinal fusion and fusion of other joints in the body is a very common result of AS. When the fusion occurs, it puts you at a great risk of fracture and breaks. Having a spinal fracture could result in immediate death, if it occurred in the wrong place. You are more prone to falls, and disability at this point, both of which again increase your risk of death. The medication used to treat people with AS, well the simplest of these are NSAIDs and those are damaging to the liver long term. So guess what, you have to deal with tha even on the simplest medication. As you move into more aggressive forms of treatment, you have biologics which kill your immune system. This puts you at great risk of infections. You can’t even fight of the common cold. This means you have to be careful or something fairly minor could result in a deadly situation. They even sometimes use Cancer drugs for treatment of AS, so then you would have all the fun of that. Most of the treatment options available come with serious side effects. Including increased risk of Cancer or other Diseases. Yes, many of the options available can cause the onset of a new disease.

I’m Worth It, Our Cause Is Worth It

It doesn’t take much. You can show your love and support in many ways. Just by simply hitting share, you can do so much. You can offer to cook a meal, clean the house, do the shopping. These are things that cost me greatly in my available energy reserve. Just going to the store wipes me out for the rest of the day. What I’m doing to be an advocate is a full time unpaid job in itself. Then I work a full time job, so I can provide for my family. I have nothing left in me. So if I am advocating, trust me, I’m paying for it. If I’m socializing and trying to actively participate in life, I’m paying for it. Not with cash resources, but in the Spoons, the energy I already don’t have.

Offer to write a letter, not just to me, but to someone like me. Send a care package. Offer to donate for the care packages I will be sending out. Share my story. Let me see you actively showing you care. Wear blue, use blue, hashtag Kick Some AS, or Together We Can Kick Some AS, it Giving Spoons To Kick Some AS. Post a cover photo, a profile pic in Awareness. Start a fundraiser for AS on your Facebook page. You can donate to the Spondylitis Association of America via the Facebook fundraiser option. It’s getting there, but you can help us go a long way if you just don’t be “that person”. You can show us we are worth it, our cause is worth it. Join me on all my social media accounts Kick Some AS. Follow my blog. Show me the love.

Click on my link on the page for Ko-Fi to support the cause and give some spoons!

Wednesday, June 27, 2018

Giving Spoons To Help Kick Some AS

Do You Want To Be APart Of Something Big

I have wanted to find a way to help the Spondylitis community since I received my diagnosis of Ankylosing Spondylitis. How I can do that has changed over the course of the past two years. In the beginning, I thought if I can record my success and share it with the work, it will give others hope. I began hiking, because I knew staying active was a big way to help slow progression of this disease. My videos can be found under my name Summer Canady or Kick Some AS on YouTube. This is an insight to how my life has changed.

I can no longer hike. So last year I started blogging about AS. It was a very positive experience for me. One that grew much deeper than I ever expected it too. I love blogging as a way to be an advocate and raise awareness. This year I started a support group in my local community. This group is growing to be a great success and I’m excited to continue this journey. I have also started several projects. I’m working on 2 fundraising events, and 2 awareness projects. These things will be announced and discussed more in depth at a later date. Then there is Giving Spoons, I just got this project started. It’s an awareness and advocacy project, but mostly it is a funding and emotional support project. Giving Spoons will write letters and send cards during those times one needs the extra love. Many people are struggling to cover the financial burden this disease brings on, Giving Spoons is here to help with that, and to provide little things to improve the life of others with AS.

  Taking Social Media By Storm

I am working to take Social Media by storm. I wish to have all participants follow all accounts, to stay up on education, awareness and other information about living with Ankylosing Spondylitis. All my accounts can be found under my name Summer Canady and Kick Some AS. I am on Facebook, Instagram, Twitter, Snapchat, and YouTube. I will be creating an Etsy and Pintrist account for Kick Some AS as well. Get used to seeing the phrases Giving Spoons and Kick Some AS. Using the motto that Together We Can Kick Some AS and Giving Spoons To Kick Some AS, will lead us to a better for future generations. Just by following these accounts and sharing post, you help make that happen.

Let’s talk numbers, currently more people have AS then ALS, MS and RA. Yet even at that, nobody knows what AS is. It’s an unspoken disease and many Doctors don’t understand stand it. I have 277 friends on Facebook. 61 on Instagram and 24 on Twitter. If each person shared my post about AS, and asked just 5 others to share, and so on so on. We would reach millions before we know it. If each person that shared, got every friend on the Facebook to share and so on, just think of how fast our disease is going to become a known and regularly supported disease. I see hundreds of post a month about share for Cancer, share for Autism, Diabeties Awareness, and a few others. There has been the ALS ice bucket challenge, and many other things like it. Where is the global awareness for AS? It’s not there, but we can change that. Just by sharing something and expressing the importance of sharing it to others.

Blue Is Our Color

I am going to challenge each person that reads this. To change their cover photo to a blue background with either, #Kick Some AS or Together We Can Kick Some AS or Giving Spoons to Kick Some AS. If we all join together in this, we can make a difference. Do you know what making a difference means for people like me? It means not having to be told we are crazy for years. Not having to wait 10 years + for a diagnosis. Not getting confused looks when we say the name Ankylosing Spondylitis. Knowing people can spell it and pronounce it, rather then say “ ankysaurus spindle what? Is that some dinosaur thing?”  It means better research because people support the cause just as if it was cancer. Better medication treatment plans. More knowledgeable Medical teams. Being given a team from the point of diagnosis, to monitor heart, lungs, and other potential issues that can occur with this disease. It means insurance approval for more treatments. It means understanding, and acknowledgment. It means it means better chances with disability cases. That’s a lot of ways to make a difference in someone’s life, and all just by sharing information about AS specifically.

We can’t group AS in with other diseases, because though it can mimic autoimmune and arthritic disease, it’s still different. While being grouped, people don’t look into the weird thing in a group of many we’ll know Diseases, they just don’t even bother, that teaches people nothing. So it needs to stand out on its own. Be talked about on it’s own. Learn to spell it, and pronounce it, so you can talk about it. If you know me personally, you should want to be a part of this fight. Simply because it’s robbing me of my life. It’s taking away everything I love. You would want to support my cause, because that is what friends and loved ones do. You would see that I am trying to make something big, a global impact for the AS community. You would want to see that successful and to do so all you have to do is read, and hit share. Simple, so why not do it? If you don’t know me, that means you have AS or have a loved one with it, and you should feel all the ways I just stated for them or yourself. A global impact is not made by one person, it’s made by millions of people believing in a cause. If you are any of the people mentioned, you should believe in this cause.

Resources Are Out There

You can find some great information out there. I share a lot of it. I talk about it in my blogs. You can also find inaccurate information. Not everyone that has this diagnosis knows the difference between good and bad information. They will share something that is completely inaccurate, offer poor advise and swear they know best. Not always true. I am going to add some resources that I know to be good. Great places to find things if you just want to learn and help others.

The Spondylitis Association of America 
The National College of Rheumatology 
The Mayo Clinic
The Spine Institute 
This AS Life
Kick Some AS 
Giving Spoons
Bristol Spondylitis Support Group Kick Some AS 
Charis Hill Being Charis


Sunday, June 24, 2018

When everything is about you being sick

AS Doesn’t Rule My Life

I once said this all the time. The motto for me meant that I was living, and AS wasn’t taking that away. Now, I don’t say this anymore. Not because I think AS took that away, but because I learned a new meaning to the statement. I can dedicate my life to AS. I can use everything it does to me for some kind of good. I learned this, because AS was taking over my life. I was loosing more and more abilities and spending more and more time sick. Suddenly it seemed as though this disease had consumed me. I was left searching for a way to still have meaning in my life. Surprisingly I found meaning in my disease. It’s not always easy, but it gives me hope. That hope can spread to others and before you know it, you have changed things for so many people.

I have been blessed in many ways because of my disease, so I want to somehow pass those blessings on. I have had many projects in the works. I am so proud of the things I have done, and look forward to making them bigger than life. As you know I blog, because I want others to know they are not alone, to raise awareness and to educate. I am just starting to test the waters of vlogging or doing awareness videos. I started Bristol, TN’s first SAA sponsored support group. I started using all platforms of social media for awareness. I’m on Facebook as Summer Dawn Canady, my group Bristol TN Spondylitis Group Kick Some AS, Giving Spoons, Twitter @kicksomeAS, Instagram kicksomeas, Snapchat as and YouTube as Kick Some AS (Summer Canady)!

Giving Spoons

I have wanted to give and make things better for a while now. Not many people understand our struggle even though Ankylosing Spondylitis is more common than ALS, MS, and RA. It leaves us stuck with poor medical care, lengthy diagnosis time, many lost relationships due to lack of understanding, and losing much of what normal life was like. The Spoon Theory is a popular blog that explains what it is like living a life with an invisible chronic disease that has no cure. They refer to us sometimes as Spoonies in connection to this and a short nickname for spondylitis. I decided I wanted to give spoons  metaphorically), to others like me. Giving spoons was born, to be a project designed to send letters and cards of encouragement and support to those who need it. I also intend to do care packages for those in need of a little more. Things like relaxation tools, gas cards, coverage of  a copay or out of pocket medication expense. On my own, I will be limited on my means. In time with the help of others this can grow to so much more. I have linked an account that you can donate in order to help me achieve this goal. All donations will go to funding Giving Spoons. I already have one offer to provide products and I will push for sponsorship to receive other products as well.

This dream became reality because others openly talked about the lack of emotional support, as well as the struggles of financial stability in dealing with a damaging diagnosis. Not many understand the extent of this disease on some. Many of those closest to me don’t either, but how could anyone really, unless they are there. This disease has unfortunately taken lives, disabled completely, disabled partially, or just drastically changed the lives of so many. I once was an active hiker. I worked 60+ hours a week, and traveled all the time. Now, I seldom travel, and when I do, it is brutal on me. I don’t work more than 3 days a week, and less than 40 hours. I have not hiked in over a year. I sleep all the time, randomly throw up, can’t breath, can’t eat, don’t sleep good, am in constant pain of an 8 or higher everyday. I’m grouchy, I’m angry, I’m frustrated, I’m tired of fighting. I’m tired of losing what was everything I loved so much. So many others feel this exact same way. So I am stepping up, I am doing everything I can to change this for future generations.


I have two fundraising projects in the works, but to be successful, it takes a long time to plan and prepare for such events. It also costs money, which means out of pocket or sponsors. It’s a full time job doing research, searching, and making contacts. Thankfully I have some great people on my team, but we are just a small team. If all goes as planed I will hold a fundraising event every year around the time of Spondylitis awareness month, so each summer. With this, 60% of proceeds will go to the SAA, my favorite Spondylitis organization, and the other 40% to Giving Spoons. I hope to host short and easy hikes, walks, 5k’s and other events. These things are in the works, but again my dreams are only as big as the funds available. So please give a little tip for all my hard work.

As well on the fundraising front, I am working towards a book, a craft and a photography/art thing that will fund Giving Spoons. It might seem like I have to many irons in the fire, but I do have help, and this stuff is making life have more meaning, so it’s worth the work. I have began the process of leaving an honorary donation to the SAA upon my death, this by leaving them a set amount of money, and by stating that upon my death any offering of memorial be made by way of donations to the SAA. I find this organization so deeply deserves this. It is a very small group of people, no vastly rich CEO’s lining their pockets. Just a handful of people trying to lead the way in changing the world for people like me. They were the first in many cases, and the best as well.

Life Gives Many Struggles 

Some of you know I just recently went on vacation. Some of you assume I must be great since I’m on vacation. Summer wasn’t so sick if she is at the beach, right? Wrong, very very wrong. See, you didn’t see me everyday, you only saw what I decided to post. On the drive down, only 6 hours by the way, I had leg spasms for hours that I couldn’t get to stop, even with an extra dose of medication. We had to stop multiple times just so I could get out and move in hopes it would make it stop. Upon arrival, bought over the counter medication and a heating pad because I was desperate. I know in the past heat helps, I will never travel without my heating pad again. I also had to lay down the minute we got there, while everyone else went out to enjoy the pool. When they came in, I was still completely useless and remained so the rest of the day and night. My pain was horrible and my stomach became excruciatingly upset the moment I put food in it. I battled feeling sick to my stomach the remainder of the trip and am still doing so.

Day two, we got up and went to the beach, nice until it was 100 degrees outside and I have heat intolerance. It exacerbates my symptoms. I stayed in the water, which was nice because it was very calm. Then we left as high tide came in because it was to rough on my joints for the stronger waves moving in, and current pulling out. We had to leave, as I couldn’t sit out in the heat. We decided to go to the lighthouse. 178 steps up, I really wanted to see it, as did everyone else. I knew it was a bad idea, as I can’t catch my breathe anyway, and the heat intolerance. I went slow, and stopped a lot. Coming back down, vertigo kicked in, I got a massive headache due to the stress on my body, and my legs wanted to give out on me. I was in excruciating pain. We returned to the hotel and I only managed to make it in the pool a very short time before having to leave everyone again to go rest. I definitely wasn’t feeling 100% to go out for the night, but my kids deserved a good vacation. So we went, but it definitely cost me. My pain continued to increase. By the time we reached the hotel, I
could barely stand on my legs, and couldn’t stand up straight.

Saturday we ended up not doing anything, because we spent two hours looking for a place to park at the beach, gave up, drove back to River Street in Savannah and it started to storm. So we headed back to the hotel. They managed to squeeze in a little more pool time but of coarse I didn’t feel good, so you know where I was. The next morning was today and we headed home. I still feel bad, I actually threw up, and my pain is way up there. So, even though I appeared to be having a great time, I was very sick and suffering a lot.

My Fight Is Their Fight

As you now know, so many others are just like me. This is why doing these things means so much to me. I know how they feel. I don’t want anyone else to suffer like I do. Waiting almost twenty years for a diagnosis, it only means the disease progresses and things are worse, than if they learn enough to catch it early. Not many studies have been done on connection to the pulmonary and cardiovascular connections. The same for other symptoms. Not much is known about the connection to AS and developing additional diseases. Why, because there isn’t enough awareness and fundraising to fund those research studies. By helping me, you help provide the SAA with research funding. You help others with AS cover a cost they can’t, get to a Doctor they couldn’t afford, or receive items of assistance for daily functioning or to provide much needed relaxation and stress relief. As many live on limited means, it’s unlikely they will spoil themselves with a massage, or bath bombs, or other things.

Let’s talk real money for a minute, do you know that just one of my medications costs over $6,000? Some people have even higher costs than that. My out of pocket expense isn’t always crazy, but sometimes it’s several hundred dollars. I’m also still fighting for approval of more than 5 medications a month. My insurance will only cover 5 a month, and anything above that is completely out of pocket. I am on 9 regular medications. I regularly have to be placed on temporary medications for things such as respiratory infections, or UTI’s which are common for some people with AS, like me. That leaves me having minor additional cost, compared to others, but it’s enough to make my point. My blog has been viewed by over 5,000 people. If each one donated $3 that would give over $1500 to help someone who is struggling. I can pay my bills. Not everyone can work, and still get denied disability for years before ever getting approval. That means for so many they are struggling to pay bills, get medication and get to all Doctors appointments. Let that sink in for a minute, and just imagine, if it was you, your loved one, what would you do? So many people spend that much on coffee everyday, so just think of all the good you could do with so little.

Help Me And Join My Cause To #KickSomeAS 

Sunday, June 17, 2018

If I Was A Stranger

Do You Take Me Seriously 

Do you really? Think about that for a minute! If you said yes ask yourself one question, do you share my posts when I am raising awareness? Don’t lie to yourself, because I know the actual answer to that question. I have had my posts viewed over 5,000 times and in every country at least once. Do you know out of that how many times any of you helped spread the word on awareness? 17 total times! That’s 17 times out of more than 5,000! That leaves me asking the question, DO YOU TAKE ME SERIOUSLY! Don’t get all offended, just think about that for a minute and let it sink in. You could help me go a long way in raising awareness for AS if you just spread the word, by sharing my story? I’m doing everything I can, to change the world for a massive community of people.

You don’t have the first clue what it means to me, but to others like me too. How many of you knew what Ankylosing Spondylitis was before I started talking about it on social media? I know 1 person that knew before me. Once upon a time nobody knew what cancer was, what Multiple Sclerosis was, do you know that many ages ago, people just got cast out as freaks for genetic deformities because nobody knew what it was. It took a voice from someone not giving up to change all of that. Think about it, you all have seen my life change drastically on social media. Where are all those hiking videos, pictures and posts I once made? I didn’t give up, I didn’t change what I love, I can no longer do what I love so deeply. I have been far to sick to do it.

What If I Said The Scary Word Terminal

What if I start giving you statistics, did you know in one study it is reported that people with AS have 43% greater risk of dying from vascular  disease, a 60% higher risk of cerebrovascular death, 35% higher for cardiovascular death? With each year of age the vascular death rate increases by 12%! That’s just what the increased risk is in those ares. Do you know AS patients are at greater risk of osteoporosis, and spinal fracture? Did you know how easy it is for the wrong movement to sever the spine and be life threatening to anyone? We have a compromised spine, with weakened bone mass that increases our risk of fracture and death greatly compared to the general public. For someone healthy, a car accident can be brutal, the healing process lengthy. For a patient with AS, one car accident could mean we never get back to what we had before. The healing process goes haywire in our bodies. Our bodies are already attacking themselves, now you just damaged it and expect a broken system to preform proper repairs. No, that won’t happen, instead, we will forever loose something. This will trigger a flare, and that flare could trigger inflammation in the heart or lungs that now has become terminal.

Having AS is like many Cancers, in the fact that you can’t see it. However, unlike cancer, it’s different because nobody knows what AS is. It’s like cancer in ways like some cancers spread and force themselves all over the body. AS spreads all over your body too. You might start with just back pain and stiffness. Then something triggers the flare, and suddenly you have inflammation of the eyes, Iritis, or Uveitis. AS is like cancer in that some cancers make you sick and weak. AS makes you sick and weak. What do you think happens when you are so tired that you can’t even feed yourself? Your body eventually gets sick from lack of adequate nutrition. When you have no appetite and can’t eat because it has your stomach and esophagus so inflamed that you choke on your food, or your intestines are so irritated that you throw it up. AS is not like cancer in the way that nobody is spreading awareness for AS like they do not trying to downgrade cancer, just trying to shed some light on how difficult AS can be for us. We need your help raising awareness. Without the help of others, we can bring this to light.

We Have Come A Long Way

 A year ago, Facebook didn’t even have a profile frame for Ankylosing Spondylitis, and when it first offered the fundraiser feature, the Spondylitis Association of America wasn’t available on it. Now, those things are there. Amazon offers the Spondylitis Association of America as one of its non profits  you can choose when shopping on Amazon Smiles. Did you know that at no extra cost, you can give a little to the SAA just by shopping on Amazon Smiles verse the regular Amazon website? The SAA has big things coming, and I’m excited to see where it goes. I have big things coming and I can’t wait to see where they go. Blogging isn’t my only effort to raise awareness. It is just the easiest and most readily available option I currently have.

I’m working on my first fundraising project as well as 3 other ways to raise awareness and raise funds. I lead a support group, I’m active with the SAA, and have big big ideas. I look forward to growing more and more, but I need a little help from all of you. So show me some love, a simple gesture and start sharing my hard work to raise awareness.


Thursday, June 7, 2018

I’m not ready to go
But I’m tired of this fight
I’m not ready to go
But when I do, 
I know I’ll see you

I’m not ready to go
My kids aren’t grown yet
I’m not ready to go
People need me here

I’m not ready to go
I haven’t seen the world 
I’m not ready to go
I’ve things still to accomplish 

I’m not ready to go
I haven’t met my grandkids yet
I’m not ready to go
My daughter hasn’t walked down the isle

I’m not ready to go
I’m the only parent they have left
I’m not ready to go
I’m far to young for that

I’m not ready to go
I’ve just learned of real love
I’m not ready to go
My career isn’t through

I’m not ready to go
But I’m tired of this fight
I’m not ready to go
But when I do

I know I’ll see you 

You robbed me of a life
Stole things I really need
The gifts you gave in return
Are just to much for me

I know your pain in every way
It’s my battle until my dying day
A hurt I can’t describe
It even penetrates my eyes

You say I might bend
That I’ll never break
This is just a lie you told
To cover up all that you have stolen

You didn’t just take my movement 
You couldn’t just stop there
As if that isn’t enough
You must think I’m far too tough

You took the breath right out of me
I guess you thought I didn’t need it 
But now it’s just impossible to beat it
I hope you’re happy with what you see

My stomach is all in knots
My spine has began to curve
I stutter and I stumble
Just to find my words

My body just attacks itself 
You the demon in command
I fight a warriors fight
But each night I lay down in fright

What will you take next
Will you ever leave me be
My questions go unanswered 
My cries for help not heard

If I could just make this world see
Get them all to believe 
I’d teach them everything 
And put a stop to this

They say were close to dinosaurs
Spoony family and warriors
But none of you really see
And many don’t even believe

Do I have the strength to fight this 
Are there better days ahead
You are just a thief in the night
Robbing me of my life

Saturday, June 2, 2018

My Feet Are Sore From Kicking So Much AS

The Phrase Was Born

Over the course of the last two years since my diagnosis, I have researched,  started volunteering, raising awareness and trying to get fundraising projects started. That’s a fair amount of work for anyone, but for someone that is sick EVERY SINGLE DAY, it’s even harder work. As an advocate for my AS community I shouldn’t be taking sick days, I should be finding ways to assist, even when I’m having the worst days. I do, even if it’s laying in my bed making list of things to tackle next, and doing endless research online. During the beginning of my diagnosis I felt refreshed, validated, I was finally given an answer to the crap I had suffered through all those years. This led me to the conclusion that it takes a lot of strength to do what we do everyday. Each and every day it feels like I was just in a losing boxing match, and I definitely got my a** kicked. I was putting up a fight to get up and have a normal life, and Kick Some AS was born. It’s been my little slogan, my silent cheering squad encouraging me to keep going.

I firmly believe that as long as I don’t let AS win, then I still have control of my life. I have hiked mountains you wouldn’t believe just so I could look in the mirror and say “AS, You Hit Like A B*TCH”! If you follow my story then you know that for the past fourteen months, I have not been capable of hiking. That’s because this disease is seeking vengeance on me. It tried to knock me down and I just kept getting back up, so now it’s unleashed a wrath of hell it is raining down on me.

I Have Kicked AS And Then Kicked It More 

Time and time again I have stood back up, and pushed past every hurtle that’s been thrown at me. My body has grown tired of this fight. My batteries are running low, and there is no power source in sight. It hasn’t just been my health, it’s been raising kids, bad relationships, highly demanding jobs, over working because it’s so costly to live, caring for my children’s dying father, it’s always something, and it’s just physically and mentally draining. I am far to independent to let others help me out, and far to prideful to publicly face the bad crap I have been through. Being independent is great, until you Just physically can’t do something on your own anymore. Being independent and sick, it’s like a cruel joke. You can’t do things, but doing it yourself is all you want. You get viewed as lazy. People don’t understand how badly you want to do things, but doing them takes every ounce of energy you have that day.

In many cases, like me there really isn’t anyone to help, so things either don’t get done, or you suffer through doing them and regret it later when you can’t enjoy something else. Say like me you are lucky enough to have someone willing to help if you ask, that great right? No, not really. Why? Well, because now that I’m watching them do it, I’m only fully reminded of how much AS has affected me. I feel like a burden, and I’m just that much more depressed that I can’t do the stupid thing by myself to begin with. Let’s say you have someone that tries to do so much for you and would do anything for you, that’s great too, right? No, it’s not! When someone just tries to do things for you without knowing for sure if you need the help, we’ll, then you feel like you are viewed as disabled, they think you can’t do it. It’s great when that fine balance of help is there. It’s just tricky to achieve. If you do things without asking, you are going to add to the problem. If you don’t do things without being asked, you are going to add to the problem. I Know! Now you are thinking, well that’s just impossible, we can’t please you no matter what we do. That’s not true though. Don’t just do things, let us attempt to do them first. If we are not successful we may not ask for help, because this makes it so much more real to us that our disease is causing a disability. So ask us, “Is there anything I can help you with?” Don’t be surprised if we say no, because we might.

It’s Not Easy Being Sick

It is not easy being sick, so there is no easy solution. We can’t just do what you think we should, because that may not be the best thing for us. As much as you want to offer advice and opinions, telling us how this diet made you feel better, and maybe we just need counseling is not going to make us feel any better. The best thing you can do is refrain from giving us personal advice on how to feel better. Don’t judge us for being sick, because unless you are living with a chronic disease or life long illness, then you have no idea what it is like to be sick everyday. Don’t compare my back pain to yours, don’t suggest I must be fine because of my age, how I look or what I did that day. My good days are not always when I am out and active and doing all the things I want or need to do. Those days can be bad days too, even if I look really good that day. I occasionally put on make up just because I feel so bad, that at least I can look pretty in the process. I like to keep my hair colored as well, because it at least makes me feel pretty.

There are times while I’m out shopping, or doing other activities that I have to stop, and times that I just rush through it because I’m getting so sick and I need to sit down and be done. When I say I’m getting sick, I don’t mean I am vomiting or anything like that. Although, that does occur. When I talk about being sick, I typically mean pain increases, swelling starts, heart rate goes up, and oxygen levels drop. I mean that I can’t tolerate how I am physically feeling any longer and I just need to be done for the day. I mean that if I don’t stop, I might collapse. At any given moment I could go from feeling okay to feeling like it’s my worst day yet. When I say I’m feeling okay, do not mistake that for feeling good, or not having any pain. That is the farthest from the truth. If I am feeling okay, I am just capable of tolerating the symptoms and the level they are at during the moment. If I say I’m feeling good, take that with a grain of salt, because I could easily go from thinking I got lucky and have a surplus of energy and tolerance for the day, to being bottomed out and headed to urgent care moments later. If I say I’m feeling great, be happy for me, because this is a rare occurrence. Also, don’t forget it won’t last.

I’m Tired Of Kicking AS

I’m tired, I’m defeated, I’m not suicidal, let me just get that out there. I am just completely and totally burned out of trying to not be sick. I have worked in healthcare for a long time, and I have always wondered how people can just be ready for their fight to be over, how you can feel okay saying you are ready to leave all your loved ones behind. Now, I think I have an idea. I’m not ready to go, in fact I am terrified of the idea of leaving my loved ones behind. With that being said, I’m also ready to be through fitting. I’m tired of battling pain everyday. I’m tired of losing more and more of what I believe makes me who I am. I’m tired of not being able to breath, sleep, eat, do anything. I can’t even take a shower without getting so short of breath that I need to rest before putting on my body doesn’t move like it should. I can barely get my hands around to snap my bra, I can’t find an easy way to reach my shoe laces. I can’t open a bottle of water, if I stand to long it hurts, if I sit to long it hurts, if I move the wrong way it hurts. I have lost so much, but feeling this constant smothering feeling, like a 400lb man is sitting on me, feeling weak, dizzy and like the air is just being sucked out of my body, that is a feeling I don’t have the power to overcome.

I’m sure you probably think I’m exaggerating. I wish I was. I feel like the life is being drained from my body and I’m just trying to figure out how to come to terms with that. Becoming fully disabled and dependent on someone else, I might as well be dead. That’s no life. Bed bound, unable to care for yourself or participate in life. I have dreams and goals, and none of them can be achieved from the bed. I don’t want my kids having to take care of me, or my family. What if that’s what I get, well then so be it, I will just have to get over it. If that’s what I get, I’ll be ready to stop fighting, I’ll be ready to go and leave others to live their lives. It’s scary as hell thinking about it, but it’s hard not to when you physically feel your health declining by the day. It seems unreal how much things can change in just a matter of days, or a month, or a year. It’s hard to think about any of this, but in the end I know it’s all going to be okay. In the end, the pain will be gone and I’ll suffer no more.

Share my story, tell the world, AS tries to rob you of your life, so join the fight to help me and everyone else like me #KickSomeAS