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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 kicksome.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.

Fundraising

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 

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