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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 www.spondylitis.org 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 k.kicksomeas.com 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.