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Monday, February 18, 2019

What’s in a name, Spondylitis terminology

I Was Diagnosed, But Now I’m So Confused

It was actually February of 2016 when I got my diagnosis of Ankylosing Spondylitis. As you can imagine, I had no idea what that meant. That is, outside of the minimal information my Doctor provided me with. “It’s an auto immune disease that effects the back.” That’s the extent of what I was told. So I came home and I started doing research. I have worked in healthcare my entire adult working life, minus a few months. This has taught me a lot about reputable websites to do such research. I know, how can you ensure that I am providing accurate information? I am going to leave you some links so you can check out information for yourself. This blog is going to break it down more for you though. I came across words that only confused me. What did it all mean, where did I even fit in the list of terms? Spondylitis, Spondyloarthritis, Spondyloarthropy, Ankylosing, Undifferentiated, Non Radiographical. The list was overwhelming to say the least. I’m going to try and help out with that a bit.

As you already know, so many terms can be very difficult to fully understand. To think that diagnosis has improved over the years changing or adding to those terms, it doesn’t help clear things up at all. Then you have Doctors who are not familiar, and give it a name that either is outdated, no longer used or even incorrect. How are we supposed to learn anything about these terms when many Doctors don’t even understand them? We also have Doctors that are stuck on old research data, and stuck in old ways of treating, as well as diagnosis. Being in several social media support groups, I regularly see conversations come up regarding this very problem. People will literally argue about the facts. Then people who don’t know anything aside from what their Doctor told them pick up on inaccurate information, or explanations. This leads to countless people misunderstanding the actual terms and what they all mean.

Stay In The Know

There are so many words connected to the community of Spondylitis. First of all, there are umbrella terms which are used to describe a group of diseases with certain character traits. Then there are old classification categories and new classification categories. After that you have specific disease names. As well as the classification of auto immune verse auto inflammatory.  To just say this, it’s easy enough to see why there is confusion. Now I’m going to tell you that someone with Ankylosing Spondylitis can fit into more than one of these terms. So, how do we know what words to use when talking about our diagnosis, and what does it mean when our Doctors use certain words? Today I’m going to try and help clear that up. You can also check out my blog Ankylosing Spondylitis And The Sponyloarthitis Family.

It can be easy for us as patients to believe our Doctors know what they are talking about. In reality, a lot of Doctors still don’t understand Ankylosing Spondylitis. This can leave us without the best information. As you see your medical team, if they use an umbrella term rather than a specific diagnosis I urge you to speak with your team and get them to be more specific. Anyone that would like brochures on Ankylosing Spondylitis and such, please feel free to reach out to me or the Spondylitis Association of America. We can get you the brochures for free. You can take this information with you to the Doctor to help them better understand your health situation.

Understanding Terminology 

The umbrella terms used in the AS community are Spondylitis, Spondyloarthritis and Spondyloarthopathy. All three of these terms are referred to as umbrella terms because they overall cover each off the diseases in the the different classification groups. This means if a word
is used, the individual is referring to a group of diseases and not one specific disease such as AS. If    your Doctors tell you that you have Spondylitis, Spondyloarthritis or Spondyloarthopathy please dig deeper and have them be more specific. I also urge you not to use those terms as if they are enterchangable for the diagnosis of Ankylosing Spondylitis, this is not accurate. While yes any of those words could be used to describe AS, it would not be specific to AS. So in other words, you would be talking about AS, RA, PsA, ReA, or any other diseases within the umbrella category. The reason I discourage this is because we have enough trouble getting AS recognized in the community
as well as understood. If we use the umbrella terms, then we are not really teaching anyone about AS, we are also allowing the confusion that they are all the exact same thing, which isn’t accurate either.

Classification Of A Disease 

We have the Traditional and the Newer classification groups then we also have the Seronegative classification. That’s also a lot of terms to help confuse matters even more. All diseases that fit under the umbrella terms mentioned previously will fit into one or more of these classification groups. So, yes you could use an umbrella term, but then how would we or a patient know what that means unless they also know what classifications they fit into. The older  traditional classifications was broke down into 6 diseases. Ankylosing Spondylitis or AS, Enteropathic Arhtritis or EnAPsoriatic Arthritis or PsA, Reactive Arthritis or ReA, Undifferentiated Spondyloarthritis or USpA and finally Juvenile Spondyloarthritis or JSpA. Here we are again with several more terms. This however helps understand why it’s important not to have the habit of solely describing a disease with the previous mentioned umbrella terms, or by the Classification terms either. We as patients need our Doctors to help us understand fully where we fall on the scale.

With the newer classification group things got narrowed down a lot, but if you think that helps the confusion any, you are wrong. The newer preferred method to use only has two classification groups.
 All of the actual disease names we just discussed fall into one of the two groups. However, many
older Doctors either don’t know about the new classification, or just won’t use it. Leaving the confusion ever so great if they choose not to be specific. In our newer groups you either fit into Axiel Spondyloarthritis or AxSpA, or Peripheral Spondyloarthritis or pSpA. Axial Spondyloarthritis is defined by two of its own classification groups. You will either have Radiographic Spondyloarthritis, or Nonradiographic Spondyloarthritis. I just keep throwing more and more words at you. You might even have a classification of Seronegative Spondyloarthritis.

Axiel  And Peripheral Spondyloarthritis

If you have been told you have AxSpA you will either have Radiographic which includes Psoriatic, Reactive, Enteropathic or Undifferentiated or our great friend Ankylosing. Or you will have Non Radiographic.  This means that you show evidence on X-ray image. However, sometimes it’s seen on MRI or CT before it is on X-ray. So depending on your doctor and what images they prefer you could be bounced between the two if you change Doctors or see multiple Doctors.That doesn’t actually mean the diagnosis has changed. It just means one Doctor has seen changes on an image other than X-ray while the other only looked at X-ray and saw no evidence. It does take longer to appear on X-ray so this is possible. Most people with AS fall into the Radiographic classification, however some

With pSpA you are going to have more symptoms in the peripheral areas in other words you will have symptoms more often outside of the spine, in other joints. This group could easily be any of the diseases mentioned and in fact often times patients with one of the classifications often develope symptoms that put them into both classification categories. With peripheral there is no connection to imaging. It’s simply classified by having symptoms primarily not in the spine. Then we can even be given a diagnosis of Seronegative. What does this mean? It just means that you have no RA factor
present in the blood and have a stronger connection to HLA-B27 involvement.

Autoimmune Verses Autoinflammatory

Now we have the great debate on what is AS. Is it autoimmune or auto inflammatory? Well, nobody really has enough information to go on for this. It is preferred to be called Autoinflammatory. In our immune system we have the Adaptive and the Innate system. With the adaptive we develope antibodies to fight off viruses. In an autoimmune disease we have a malfunction and our adaptive system attacks the bodies healthy cells. Our innate system in a way does the same thing accept it’s not fighting a virus. It is fighting any foreign or harmful invader. The innate immune system triggers inflammation which in turn can lead to damage when the immune system has a faulty mutation. This means the innate system is triggered by our healthy cells and it attacks. Either can attack anything in the body.  Due to the lack of antibodies produced in an autoimmune issues, we are considered to have an Autoinflammatory issue instead. This just means those antibodies are not present but our immune system is still attacking healthy body cells and it is in turn causing an inflammatory response.

So How Do I Know What Ankylosing Spondylitis Is

Well, a good question, and surely you can see why this can be so confusing. My simple answer is that it should always be referred to as the disease name itself. Any of the diagnosis should be. If I have skin cancer I’m not going to just say I have cancer. I’m going to say I have Skin cancer, or maybe even just say I have Melanoma. Because if I just say cancer it could be anything from skin to lung. Nobody would know. So yes I advise only using the exact disease name.  However to answer your question I’m going to give you a rundown that will also explain why it’s so complicated.

If I’m diagnosed with Ankylosing Spondylitis, yes I have a Spondyloarthopathy or either of the other
 enterchangable umbrella terms because that isn’t the actual disease. If I just say that though, which one is it? Okay, we know I have AS, but am I going to tell people I have the newer classification or
the traditional classification? No, because that’s not actually a disease. Plus how would anyone even know what I meant, for all they know I could be saying I have diarrhea. If my Doctor prefers the traditional he is just going to say that I have Ankylosing Spondylitis. Pretty simple. However if he prefers the newer he may say I have  Unradiographic Spondylitis. So what would that mean, do I not have AS? It’s important to have the Doctor clarify, because you might not have AS, but you very well could have AS. How would you know what it is if you don’t ask? After all RA isn’t the exact same as AS. AS or Juvenile AS is the only thing discussed here that can lead to fusion of joints. While RA limits mobility it isn’t fusing, it’s crippling by deformities and destroyed tendons and ligaments. RA doesn’t form brittle bone like growth or turn tendons into a boney like state. Clearly neither are good.

So what if I changed Doctors and one said I have AS while the new one called it non Radiographic Spondyloarthopathy? It could mean a few things. Maybe the new Doctor is only depending on X-ray images while the old one may have used MRI or CT. Damage to the joints shows up sooner on MRI and CT than it does X-ray. So you definitely need to ask more questions. Yes you can have AS and not have evidence on X-ray. Now that we know this, what if they said I have Peripheral Spondylitis? Well, that can still be AS. You would just be having symptoms that are primarily not in the spine. Same thing if they say it’s Seronegative. It can still be AS. So you can have AS and clearly the umbrella terms cover that. You can also fit under any of the classification terms. You could also have more than one diagnosis that happen to fall into different classifications. That’s why it is important to use the actual disease name rather than any of the potential identifiers.

I hope this helps clear things up and shows the importance of using the actual disease name when discussing your diagnosis with others and with Doctors. I encourage you all to try and get your Doctors on board with this as well. I promise if a Doctor says this information isn’t correct, please reach out and request information to provide them. You may also look up information at links similar to what I use. Keep in mind even some websites use terms as if they are enterchangable for the
disease name, but they never should be used that way.

As always Kick Some AS

Thursday, January 24, 2019

I Am A Warrior

Just When I Thought My Hiking Days Were Done..

I was an avid hiker, I have stood atop some of the most breathtaking mountains. I have felt the cold crisp wind steal my breath away. I know the pain of thinking the mountain has kicked your butt, bruised and banged up, yet you don't quit. I have shed blood, sweat and tears along those challenging dirt paths. It was my passion, I lived for the moments that I spent in the woods. Suddenly life changed, and my world was one I didn't know.

I knew in my heart the reason I challenged myself so much was because I needed the strength for a much harder battle. My life has been full of experience, from motherhood, living in an abusive relationship, having a challenging yet rewarding job, and caring for my children's dying father. It was all part of a greater plan, and I know I had to be tested in order to gain the knowledge that I could and would survive.

This Is My Greatest Fight...

Once I received the diagnosis of Ankylosing Spondylitis I thought it meant I'd finally feel better, treatment, medication it was going to give me my life back. It did temporarily. Now, I'm not sure and don't know if I'll ever know if AS, extended time until diagnosis, medication, or something else all together is the cause. I made a choice, it won't change anything knowing. No matter what I'm still going to fight, advocate, raise awareness, and do all I can to make a change for the community.

That is and always will be my fight. It's definitely a big one and requires massive amounts of strength. Over the course of the three years since my diagnosis I have gone from an avid hiker in the physical world to one who climbs those mountains mentally now. I was asked to stop hiking due to symptoms I started having. Until today I had never even related the activity to my life now.

It Is My Blessing And My Curse..

Being sick has given me multiple opportunities to help others in the AS community. For this, I do consider it my blessing. This has also become a passion for me, I love what I'm doing. I love helping people. It's what I have always done. The pleasure I get from helping others also keeps my strength up and my drive to do everything I can moving forward. Because of this I am not just helping others, I'm helping myself too.

I have been steadily getting sicker and sicker though. No diet or exercise seems to help. Medication isn't the answer, but being off medication is even worse. Test after test, appointment after appointment just trying to find the answers. Just four days ago I was told by my pulmonologist that I'm in the beginning stages of lung disease. Of course this means more test, regular monitoring and plenty more appointments. Then I get a phone call, ultrasound revealed that there are signs of liver disease too.

I Am A Warrior...

I get up everyday, I participate in life the best I can. I get to spend my days around my children. Doing things I truly love. I get to soak in the beauty of everyday. I'm not beaten down, nor am I broken. Don't take it wrong, I definitely breakdown too. I have a good cry, and sometimes I get angry or jealous. I don't have the energy to argue, so I don't scream and shout. I also understand the precious things in life. I'm not perfect by any means, but I definitely know how to learn from my mistakes.

My intention is to fight as hard as I always have. Quiting and giving up are not words in my vocabulary. No matter how hard the journey gets, I know I have conquered mountains before. The ultimate prize at the end is always breathtaking beauty. I know that if I fight maybe the beauty is seeing a different future for others with AS. If I fight maybe we find a cure. If I fight maybe I win!

As always, Kick Some AS

Sunday, December 9, 2018

A Letter to my Politicians.

Dear Sir or Madam, 

I wanted to write you a letter today, because the pain and frustration I feel won’t go away. Thoughts run deep in my mind, because these days all I have is time. I wonder if I cry out enough, will those with the power finally speak up. See, it’s your job to ensure, that all of us have a future that’s secure. You made legislation and rules. Required my hard earned money be contributed. You told me it was to provide that retirement security. There is something wrong with this though. Our government says it will all be gone soon. So what is that so many of us pay into? I got sick and I thought, surely there is help for a struggling mother who is ill. I pay for short term and long-term disability. I pay my taxes to Medicare and social security. It’s time that I need it, but it’s not what I want. Trust me, I’d rather be a hard-working member of society. 

It was only a false reality, I really had no security. A lack of support, and leaders who quarrel over what access we have or even when it’s used. As I mentioned, I’m suffering from illness. I’m also a single mother raising children. They lost their father, so all they have to rely on is me. I began missing work, and they knew I was to sick to refuse. Even offering me days off, because they could see the impact it was having on me. Then it came the time, I asked to file a claim. It was clear I wasn’t going to be able to work for a while, possibly never again. We started the paperwork and they informed me of eligibility requirements. Do you know nothing stops them from denying me based on pre-existing conditions? I wonder if you also are aware, that pre-existing is termed as anything you have seeked  medical attention for previously! This could possibly mean a denial for me. 

I pay for my benefits  and even go that extra mile. I pay for a plan that pays out faster and at a higher percentage. Still yet, I may not have an answer by the predetermined date of return. I was a little concerned because it’s the holidays and all. I thought it would be a fast process after all, I pay in more to receive that perk. I think to myself, what’s waiting 14 days  when that’s a typical pay period anyway. Sure enough, they ripped away all my hope and drowned me in insecurities. The day after I filled, HR notified me they dropped my status to PRN and cut all my benefits. Who gave them this power? It seems so ridiculous. Why offer these packages to employees if you truly have no intentions of letting them use them? I’ll tell you why, because the government doesn’t have our back, and they behave in a similar way. Now, as I sit and I wait. Is it too early, is it too late? 

Did I jeopardize my health by pushing too long? What if I’m able to return to work, do I even have a job anymore? FMLA can’t be used for a year. Thanks to our federal government for thinking tragedy or emergency can’t strike any sooner, and if it does, sorry you are just not worthy. How’s it allowed, how is it fair? I pay in and pay in, and barely make ends meet. Yet others don’t realize the heavy burden that brings. We worked hard and dedicate ourselves to a career. All for what, to be living in fear? I’m too young so many have said. Even but you’re so pretty, you can’t even be sick. Others make judgments based on the seconds it takes to make first impressions. Who holds these standards that if you are young you must be healthy, and we forget so many things are unseen. 

I pay for a service that offers financial relief, to be used in times of hardship. Unfortunately, I don’t qualify to use it. Not unless I am approved for disability or listed as unemployed. To be on disability you must be physically unable to work. If you are unable to work and paid leave isn’t an option, how do you live with no income? It takes extended periods of time to apply for SSDI of which usually results in a denial the first try. If you don’t have children you won’t even be eligible for state assistance food programs. Even when you do, there are no guidelines that require they complete a case in a timely fashion. Often leaving you for weeks eating on divided food rations. 

You wait and you wait, after many years of contributing your taxes. All for what, others to decide you don’t look like you need it? We have members of society that get disability for their anxiety. Others who work under the table, because they are greedy and find ways to cheat the system. Did anyone ask us, what we think should grant eligibility? Often times Doctors disagree or just don’t believe. When this is the case, who’s fighting for me? Test results can be inconclusive and many only provide ranges. No one considers this is just a textbook guideline. Maybe I’m not textbook and my results are really quite telling. How will we know this, if our voices are not acknowledged? 

I know I don’t have the answers, but I can tell you none of this is right. I worked hard and paid in. Please tell me why this is such a fight? I don’t want anything I don’t deserve. I don’t want free handouts. As I said, I’d rather be at work. I’d gladly give you my illness as a trade in. You take this affliction and I’ll make work my addiction. It’s not about political sides. It’s about doing what’s right. Do you think those of us that are sick, really have it in us to keep up this fight? I don’t like facing what I am losing. The depression financial stress can bring is a deep dark hole. All I want is to enjoy, time just focusing on my family.

Instead, I sleep more than I should, the stressors, boy they are for real. Being sick is exhausting. That alone takes all that I have. I still have a house to maintain, and my kids might literally think I am insane. I’m so forgetful and need help so much. In their unaware minds, they just think I’m a grump. Really I’m not, I’m just frustrated A LOT! I make calls all day. Quiet please, no interruptions today. I’m online researching and chasing Doctor appointments, all through three towns. My insurance is a hassle. So strict and uncaring. I guess they just don’t believe a person could need this much medication. My mailbox stays full of their denial letters. I call and I call but it never gets better. Still only 5 you can receive! The rest is your full responsibility! 

These prescriptions are not cheap. They charge what they please. They can do anything they want because they know you want to be healthy. It’s a rip off a scam. How many different ways can the system fail me? I’m sure we can find more, but who's keeping score?  I won’t forget to mention the opioid addiction. They lied about statistics just to keep us all scared. Then out came legislation that harmed chronic pain patients. All they cared about was drug abuse not proper prescription use. Patients lost medications they had been on long-term. Others unable to seek relief when those dreaded flares occur. Of course, we got overlooked. It’s nothing new, it’s just what people do. 

I want to understand, I have questions that need answers. I’m wishing these words would reach all those people who matter. It’s people like that, that we need to advocate. Awareness does a lot  and can go a long way. A click and a share, and you did your part. We need your support, we need the power to make a change. It’s not fair, it’s not right. When you are sick, the last thing you need is to worry about how you will be able to pay the bills. I know I’m long-winded, but this deserves the attention. Stay strong in your fight, even though it’s not right. You have someone in your corner, someone ready to battle. Together you and me, together we will Kick Some AS!

Monday, November 26, 2018

Chronic Doesn't Skip the Holidays

It’s the Holidays and I don’t feel good.

Does that statement sound familiar to you? How exactly does someone with chronic illness cope on the holidays? That’s a pretty good question, and one I think deserves some attention. For me,  the holidays coming along this year only meant more struggle than enjoyment. This was my reality for more than one reason this year, and could very well be for others with a chronic illness as well. I’m currently pondering how to provide my family with the best me I can. It means resting more during the day, missing other activities so I can be physically capable of attending family events. As well as depending on family for more of the work on the holidays. 

I also have other factors that are at play here. I am not out of work by personal choice, as in I did not just up and decided to stop working because that’s just what I wanted to do. Rather, I’m facing the holidays and suddenly dealing with the reality of physically not being capable of keeping up the demand of working. How does someone process that, right at the start of the holiday season, when everyone is shopping and attending Christmas parties and having family meals to celebrate? It’s a lot to take in, but to do it all right at the peak of such a joyous and productive time for many, that’s just a thought that’s more daunting than one might think.

Can’t you just make time for me 

This is kind of how it feels when someone who is chronically ill feels when everyone gets together and suddenly they feel like they missed all the news. Family carrying on a conversation that you haven’t got a clue about. Sitting silently in a chair, possibly in a corner off to yourself. You don’t do this because you are not social, or just don’t enjoy the time with everyone. You do it because you don’t feel good yet again but you want and need to feel normal at least on the holidays. You don’t converse much because you feeling bad has kept you out of the loop, but you also don’t want to bring anyone down by talking about how you don’t feel so great again either. 

You watch family disperse to beat the crowds and catch the holiday deals. You listen to all the cool gift ideas they have for others and maybe even about the great personal wishlist item they scored for their self. There is music and laughter and parades on TV. Children are playing and you jealously watch as you can’t scoop up that grandbaby or crawl in the floor to play with all the little nieces and nephews. 

Chronic doesn’t skip the Holidays 

While I mentioned the things above, some are my personal experiences and some are things I see and discuss often with others in similar situations as me. In my case, this part is a bit more connected to my personal holiday chronic illness struggles. When I came up with the heading to this section my thought was I sure wish I could just not be sick during the holidays.  Instead, I got up Thanksgiving morning felt more exhausted than usual, got ready and piled the kids in the car. I started it up, put it in reverse and immediately back in park. I  as quickly as possible ran in the house and began throwing up. One of the many symptoms that regularly interrupt my days. 

Once I was done I straightened myself up did some quick oral hygiene and out the door, I went.  I spent my morning on the couch while my former mother-in-law finalized the Thanksgiving meal. I used to arrive and jump in and help finish things up. Not this time though. The kids filled that role. My daughter usually does, so that was nothing new, but the boys helped too for a change. I usually do like most and eat until I’m miserable. Again, not this time. I got small portions and only ate what I had. My appetite isn’t much these days. 

We left knowing I was already exhausted and all I did was sit on the couch and make the hour drive there and back. My mind was already lost in the madness of that chronic brain fog by the time we reached home. My daughter having to remind me I was dropping her off at her boyfriends', and then quickly asking why I passed the road. I came home and rested in bed for those next few hours until having to be at my sisters for the next event. Somewhere I am typically at before everyone else, but this time, I arrived in the mix of everyone else because I had to practically drag myself out the door. 

Holidays can be challenging for your loved ones

This really goes to cover both sides of the fence here. Not often I branch out and talk about being on the other side, but it deserves just as much acknowledgment as our side does. As the holidays continue to unfold keep this in mind. Your loved ones may not really understand how to approach all of this with you. They may not ask you to bring things thinking it might add to the already difficult to balance tasks you have to juggle. They may not push to drag you into the mix of all the activity thinking that you need the rest and not the hassle of holiday shopping or of being pressured to be actively involved in the days' activities. 

If they just let you sit in your chair kept to yourself they may be trying to respect that you are just too exhausted for anything else. So I encourage if you want more please communicate with your loved ones during the holidays. Again, both sides of the fence here. If you tell your loved ones you want them more actively involved please talk to them about it ahead of time. We can plan our tasks to conserve energy where it’s needed most.  The same if you want your family to include you, step up and ask to join. They may not ask not for lack of caring, but for respect. So please communicate and you and your loved ones will all handle the holiday stress much better. 

Last but not Least, Please Give Lots of Love

I say this because it is so difficult to emotionally process being sick all the time. Add a loved one struggling with the new onset of symptoms, or worsening of symptoms. Some may even be financially struggling because suddenly they have the challenge of starting disability and the holidays can become depressing real fast if someone feels completely alone. The workload can be increased causing those still working to be having more pain and more frequent flares. 

Just make sure that you take the time to show others they are loved and not only will it possibly make their holiday better, but it will make yours better too. As always stay strong, and #KickSomeAS

Happy Holidays 

Sunday, November 4, 2018

Decals for a Cause

Join In A Special Cause

I’m asking for a very big favor. Please consider spending $10 on a vinyl decal. Even if you never use it. I can make custom decals of just about anything and will take request. I will also be selling custom designed decals to support the cause. You can find more information in previous blogs and by checking out the group Giving Spoons. A group created specifically to help others with Ankylosing Spondylitis in need of more than just emotional support. 

Just one medication can cost over $6000. A fair average is around 10 different medications. Many times insurance not covering the needed medications. Extremely high copays and other out of pocket expenses. It’s also pretty common to see three or more Doctors on a regular basis. I happen to have 5 all of which are specialists aside from my Primary. We don’t get the privilege of doing just yearly visits or every three or five years either.  I have had a total of 27 appointments this year alone. Could you imagine, 27 copays, 27 additional out of pocket expenses? At times I have paid near $300 in a month out of pocket. It’s expensive being sick. Just In case you are wondering if that occurs every month, that’s a grand total of $3,600 and trust me when I say I’m one of the lucky ones. My expenses are minor. So that number isn’t even close to an average. 

My Name Is Summer Canady

If you take a look around my room you will see traces of what used to be. The 5k medal hanging on the wall, next to a collection of achievement pins. Trekking poles propped against the wall and hiking books fill the shelf. There is an unfinished log book for reaching new milestones and beneath the bed is a row of dust covered hiking shoes. These are reminders of who I used to be. Days have gone that most likely will never be again. 

In a drawer, there is a stash of countless souvenir spoons from across the country sharing space with a stack of postcards and two penny press books. These all accumulated from the many adventures I have had over the years. I have a collection of rocks, gems, minerals, and fossils displayed upon a table. These things all hold memories for me. I wonder though, will that matter to anyone else when I’m gone? 

You see, I’m sick and the past two years have taken so much away. It hasn’t trampled my pride, or even the passion I hold inside. Instead in many ways, it’s been a blessing for me. Ways that I’ll never be able to express to anyone else. I love and appreciate more because of my experience. I know my own suffering and I can’t stand the thought of anyone else going through the same thing. 

I tell you all of this for two reasons. First, to encourage you to read my previous blogs if you haven’t already. Second, in hopes that you will join my fight, my cause, my dream, my passion. Help me to help others in need. You can do so by making a donation or by purchasing a decal made by yours truly. Every single penny will go to help someone else in need.

Hello, My Name Is

Her name is Christy and she has a terminal diagnosis. You may contact me to be directed to the official GoFund me. She was diagnosed with Ankylosing Spondylitis, but her journey has been a challenging one. She got rather sick, pretty quickly. Upon receiving certain test results it was determined that she has Pulmonary hypertension, a terminal condition. In the midst of trying to get disability and treatment, things took a turn for the worst. She lost her home and of course her job. She moved in with her son, who shortly after took his own life after battling depression. She once again was homeless. Without a steady home, she is unable to start the costly treatment as it requires the assistance of home health. All she has left is her car, which she will lose as well without some help. 

As she remains off treatment she only gets sicker. She was quickly approved for disability but has a mandatory 5 month wait with no pay. She is in a position of having to ask for help that nobody wants to ask for. I know to all of you she is just a stranger. To me, she is strong and brave and a dear friend. I know we have a world full of caring people out there. So I’m asking, please let’s help ease this sweet ladies stress. Purchase a custom decal or purchase one of the custom-made awareness decals to help out. All money will be used to help others like Christy. 

Everyone Calls Me Sam

She goes by Sam and she works her fingers to the bone. She has Ankylosing Spondylitis and her spine is fusing together. She can’t lift her head all the way up. She is pretty crafty though. She would be happy to sell you a custom-made crochet item. She is so sweet and caring and a dear friend of mine. Sam is fighting the good fight to get disability because with a fused spine she can’t lift her head anymore. She thought her disability from work would kick in sooner than this, but she is still waiting.

It’s funny how we have all these options for assistance but becoming disabled is never expected so how does one manage when suddenly they are unable to work? Sam reaches out to the community for the help she can get. Unfortunately, she still falls short and every month she is at risk of losing her home and the stressful decisions of what gets paid and what can be put off.  If you bought yourself or someone else a cozy nice blanket, she would forever be joyous of the kind and generous love you gave. Reach out to me for details on placing an order or as above purchase a custom decal or one of several awareness decals to support the cause. 

I Am Nothing To You

I know that I am nothing more than a bright screen to you. To others, I am so much more. I am a leader, a friend, an advocate and a volunteer. I put endless effort into helping my community. I have Ankylosing Spondylitis and it is my dream to change the world forever for those like me. You can help me do that. You can donate freely, or purchase a product. I am offering a product because I don’t want anyone to feel used. 

I promise you can look me up on any social media under Summer Canady or Kick Some AS or Giving Spoons. Please visit The Spondylitis Association of America is the leading nonprofit for Ankylosing Spondylitis. Please visit the support group and check out my bio. Also be sure to check out to read other blogs and learn a little more about Giving Spoons. I hope you will find it in your heart to help. With the support of others, we can change the world for so many. 

Friday, October 19, 2018

Its Easy Until It Isn't

Some Things Are Easy, Until There Not

My health has brought me a fear like none I have ever know. Placed me in a loneliness that couldn’t be filled even with a thousand people in it. Yes it’s also given me a joy that can’t be compared to anything I know. It’s a constant process of learning. Never knowing from one minute to the next how anything will make me feel.

Every new experience I have, only brings more light on to what’s happening to me. It leaves me with a million questions and no answers seem to be in sight. Those of you who read this, often are complete strangers. Some of you have gotten to know me on social media. A smaller few might feel like they have a deeper connection because they read everything I write and it hits home. My family, I’m sure if they read what I write, and if they do I am definitely not sure if they really realize how hard this all is on me. 

It’s a lonely place. Going to Doctor appointments alone, Urgent Care and ER trips alone. Only a stranger leaving you voicemails of them singing Softy Kitty. I hope you are familiar with Big Bang Theory. If not, Soft Kitty is the song Sheldon wants sang when he needs comforted. I feel like my life is a real-life episode of House, and have even had a Doctor tell me that. I might seem to have it all together, but honestly, I’m so lost and so scared. I’m a little girl crying inside wishing my mommy and daddy could hug me tight and promise me it’s all going to be okay.

Instead, I seldom talk to my mother because there has been a lot of strain on that relationship over the years. Why is irrelevant we just butt heads and I need my sanity and health more right now. I just don’t have the energy to emotionally deal with the strained relationship. So I just put it on the back burner for now. My dad forgets that I even have a birthday and my stepmom basically calls me a liar and shames me for posting facts on my Facebook page. When I don’t delete it she just blocks me. So I feel like I have no parents at all. 

I have a wonderful friend who I don’t see enough, and I have Barbara my children’s grandmother on their dads' side. She gives me support and cares for me and all the kids, but it’s also difficult because we are all she has left and I think it really scares her when I talk about my health. So I get to talk to strangers and people I have only met a handful of times. I love my community of warriors but it’s just not the same. 

I try not to bring any of this up, because well, what’s anyone going to do? They can’t make me feel less scared or lonely. That’s an unfortunate part of having an illness nobody can see or grasp how it truly impacts you. I’m working hard at being strong, a better mother, a dependable friend, maintain my home and job. I feel like it’s an impossible task though. Dishes pile up, laundry doesn’t get done. My sheets stay on my bed far longer than they should and my kids are lucky if I cook a meal every other month. 

I see and feel a decline that I don’t really grasp. I do have brief moments at work that suck the life out of me it seems, but few and far between. I have been lucky, that’s not always going to be the case. In fact for no apparent reason, I was just dealing with extreme fatigue the other day and literally fell asleep at the nurses' station beside two nurses and an entire ER full of other co-workers and patients. I was doing everything I could and in the middle of the the conversation I just went out. For a minute that’s it. It happened again later that night as well. For it to get so bad I can’t function at work is new for me.

Then there is a whole new aspect I’m trying to wrap my head around. I have this tiny human in my life, and I have raised 3 kids, put a great deal into the 1st year of life to another and carried around all my great nieces and nephews at some point. What I’m getting at, is holding a baby, carrying a car seat, moving a playpen or even setting it up, these tasks should not beat me down. Yet my arms grow weak, my back aches and I literally feel like I can’t breathe and that my heart is going to beat out of my chest. I shouldn’t be so depleted from such an easy thing. 

Now let me back paddle a minute, cause I know all my moms or solo dads are thinking easy, what the heck! Children come in all types, and some get it easy, while others not so much. What one calls a challenge another will not. So basically what I mean is, it’s easy to do what’s natural and take care of your kid. Then you have heard me use this phrase before,  ”until it’s not!” I had a mixture of both over the years and now mine are teens and the past two years I experienced some of the most challenging moments but also some of the happiest and easiest moments. 

While my three were babies, they were all easy, and perfect. I mean sleeping through the night in a matter of weeks to a month. Not really crying inconsolably. I recall one incident with James and one with Keith. My daughter, none, she always loved everyone. Then those young early school years hit and I was a single parent and suddenly my world fell apart. I had no idea what children I was raising and I’m pretty sure they wonder what the hell happened to their mother. 

Then I got sick, and life threw every dramatic curve ball it had at me. Their dad getting felony meth charges. Me realizing all my friends and family had grown and moved on to life without me in it, and I had no idea how I fit in anymore. The kids grandfather dying, my second divorce. An abusive relationship. My children’s father dying from meth use. My children and I falling completely apart before finding a way to put ourselves back together again. Losing a job. Financially struggling. Getting sicker, and feeling as though my passion for hiking was ripped away from me. 

At this point, I pretty much decided that there was nothing AS could throw at me that I couldn’t conquer. Not after all I’d made it through. I have been finding myself doubting that lately. Who wouldn’t with the streak of bad luck I have had...maybe that’s a story for another time. Yet here I was wondering how I’m going to move forward in this new situation I found myself in. I didn’t exactly go looking for anything. I’d pretty much decided I never needed another serious relationship again, and I was okay with that. 

I can’t help but fear this good feeling could end. We all know to well how easy it is for anyone to walk away from us because it’s to hard. He is sitting next to me right now, oblivious to the fact I’m writing this. Not really, he is focused on driving. The 10 hours with a whining half crippled sick women by his side, just to take me to a Spondylitis seminar. Yet so many turn their heads as if my situation is no more than a common cold. It’s to difficult for others to grasp how this all makes me feel. 

Knowing that some of the people who matter the most to me don’t check in on me, or ask if they can do anything to make a day a little easier for me, well it’s just frustrating and hard. My kids don’t, occasionally friends will. The thing is how do you tell people I just wish you’d ask me if I’m doing okay. Or it would make me feel so good if someone offered to help me with the grocery shopping or my laundry. Why, because these tasks take so much out of me. Cooking dinner, I’m done. Forget it, I’m not doing anything else. I want to do all these things, but I want to have a social life, and a family life, and a work life. It’s just not physically possible for me to do what everyone else does in a typical day. 

I went from sleeping maybe 3 hours a week and being so active I completed multiple hiking challenges in less then 12 months, and that was no easy task. To sleeping 12 plus hours a day because my body physically will not function. I try to get things done, but it takes me forever because it hurts so much, but more so because I feel like my heart and lungs are being squeezed in a vice and I’m near collapsing because I can’t get enough oxygen. How do you explain that the someone when you are not turning blue? 

Yes I follow slowly behind the crowd, because I physically can't keep up. I’m scared because as someone who has given many times to help care for not only my children but someone else’s, why now, why is just carrying a baby so damn hard? I’m lost and I’m confused because nobody has answers. Yet I’m spending a piece of every single day trying to find a way to change this so others never have to feel what I have.  I feel sometimes like nobody even realizes how hard I’m working. Because the truth, nobody acknowledges it. Aside from the occasional stranger. 

My determination will not stop though. I just hope one of these days I’m going to write the story that grabs all my loved ones attention and makes them say, maybe this is serious. Maybe I need to help raise awareness. Maybe I need to be more aware and just check in occasionally. Don’t get me wrong, some people do. It’s just difficult to really feel it all the time. I’m sure this comes off as me complaining, but this is how I express myself best. This I know hundreds of others relate too. 

I know that some of my family read my blog, and I love that they do, but this will come off strong, bitter and possibly accusatory. It’s not though, I know the people in my life that put in an effort and they know who they are too. I just don’t put names to anything because of the hundreds of strangers that read this, they don’t have a clue who my family is, and I’m not trying to be rude, I’m just trying to say how I feel. Share a piece of my AS journey with others that can relate. That’s it. 

Sunday, October 7, 2018

I’m so sorry, I’m not silent anymore.

Hello darkness, my old friend,
I've come to talk with you again!
Because a vision softly creeping,
Left its seeds while I was sleeping!
And the vision that was planted in my brain still remains,
Within the sound of silence!

We’ve got no excuses,
For all of these hateful sides!
Call me when it's over,
'Cause I'm dying inside!
Wake me when the hate is gone,
And the cold hearts disappear!
Call me when it’s over,
And love has reappeared!

When he told you you're not good enough,
When he told you you're not right,
When he told you you're not strong enough,
To put up a good fight!
When he told you you're not worthy,
When he told you you're not loved,
When he told you you're not beautiful,
That you'll never be enough!
He is a liar!

Now I got issues,
But you got 'em too!
Look at all of our problems,
Nobody wants to solve them!

Close my eyes before you leave,
So I don't have to look at you in shame!
Take my hand and give me peace,
Cause I don't think I'll ever be the same!
One by one they testify,
I never did enough,
I never cared enough,
Even though I stood, I could always run away!
We all wonder why,
It's easier to blame than it is to believe!

Momma, I'm so sorry, We don’t speak anymore!
And daddy, please forgive me, I’m not silent anymore!
To the ones who don’t believe me,
We've been down this road before!
I'm so sorry, I'm not silent anymore!

When he told you were troubled,
You'll forever be alone,
When he told you you should run away,
You'll never find a home,
When he told you you were dirty,
And you should be ashamed,
When he told you no one would believe you,
That forever you’ll be disgraced,
He is a liar!

He will take your breath,
Stop you in your steps!
He will rob your innocence,
Steal your belief that love exists!

I'm angry, I'm so angry!
When I'm down, I get real down!
When I'm high, I don't come down!
I get angry, baby, believe me,
It’s all because you judge me!

I'm sorry to my future love,
For the man that ruined me!
For making others think the worst of me!
I wanna be a role model,
But I'm only human!

Who's to know if your soul will fade at all,
The one you sold to fool the world!
Good god your comin' up with reasons,
I feel so raped!
You’re such a fucking hypocrite!

I'm sorry that you don’t believe me,
I promise I'll get help!
It wasn't my intention,
To think this of myself!

I got issues,
And one of them is how bad you treat me!
You do shit on purpose,
You get mad and you break things!
Never feel bad or try to fix things!
But you're perfect, oh they think your so perfect!

And you fake it, so out of line, 
You fake it, for all the world to see!
Fake it because your pride means more,
Than my feelings anymore! 
And you should know that the lies wont hide the truth of what’s inside!

I can’t bite my tongue,
I just stay awake for days!
I can fake a smile,
I can force a laugh,
But I’m only human,
And I bleed when I fall down,
And I crash and I break down!
Your words in my head, knives in my heart,
You build me up and then rip me apart!
I can take so much,
Until I’ve had enough!

In restless dreams I walked alone,
And in the naked light I saw,
Ten thousand people, maybe more!
People talking without speaking,
People hearing without listening!

You can fake with the best of anyone,
You can fake with the best of em all,
Yet I can’t fake it all!
I feel so raped!
You’re such a fucking hypocrite!

And the people bowed and prayed,
To a god that they had made!
And the sign flashed out its warning,
In the words that it was forming!
And the sign said, written in these walls, are memories of those hurt most of all!

These words depict the inner story of someone sexually abused and how they feel about loved ones and strangers alike. In light of recent events these things really stuck in my head. You may notice an occasional resemblance to some music, that’s because certain lyrics really stuck with me. I created my own version of what some of those lyrics mean to me.