Chronic Illness Prompts: Meeting, Advocating, Tweaking, Working, Curating

Many thanks to Sheryl at A Chronic Voice for creating some wonderful prompts for her November link-up party. This month has been a really busy month. I just finished a charity gala fundraiser event that I’ve been working on since August and I wasn’t sure if I’d have a chance to write something for this party this month.

Better late than never!

Sheryl’s Chronic Illness prompts for November are:

Meeting, Advocating, Tweaking, Working, and Curating

Meeting

First off, this is the perfect prompt and I’d like to extend a special thanks to Sheryl. I had the pleasure of meeting her last month when she was visiting Taipei from Singapore. (I wish I had taken a photo that day. Sheryl has one, but I was not well that day and I’m a little scared to see what it looks like. Instead I’m posting this simple ikebana arrangement in honor of our meeting. Two white roses entwined for two lovely ladies.Wrapped White Roses

Sheryl is the only other person I’ve met in Asia that is a chronic illness blogger, so to be able to sit down with her and chat about all the things we do to keep our bodies going was terrific.

I tend to prefer not to be out and about meeting new people. I find it exhausting to meet new people and answer the inevitable questions that always pop up, such as, ‘What do you do? You don’t look sick? What are you sick from? Etc., etc.

These are always hard questions to answer because they get tiresome. While I’m lucky to own my own business and work from home, I’m also a professional bed sitter and it’s always hard (and draining) to explain my health issues to new people.

When I heard that Sheryl was going to be in town, I moved heaven and earth to go and meet her and I’m so glad I did. It was a lovely afternoon. I don’t remember having such a nice and relaxing afternoon with someone else besides my husband in a very long time. Going out typically makes me very anxious because I’m constantly assessing how much energy I have, how much walking or standing I need to do, and how long  I can handle being out. Sheryl, of course, got all of this instantly. It was so nice to not have to explain anything to her and to just talk.

I also had a few other meetings over the past two months. I met two new doctors on my medical team and I haven’t really formed an opinion about them yet since they’re both so new to me.

I’m feeling comfortable with my new rheumatologist so far and I’m glad that he took me seriously and wasted no time in bumping up my medications. After taking one look at my back x-rays and lining up all my inflammatory markers for the last two years of blood tests, there seemed to be no doubt in his mind that I needed to bump up to the next level of medications, and so here I am!

I started Enbrel last week and so far, so good.

Walk Your AS Off - Carrie Kellenberger

Advocating

These past two months, I’ve had to do a lot of advocating for myself. This isn’t unusual. I have to do this with all my doctors here, but I’m also in a system that regularly tells me that women don’t get AS and if I’m seronegative, that likely means I don’t have AS even though I have all the other qualifying criteria that would be accepted and embraced by rheumatologists in Canada and the US.

One doctor in particular has really been bothering me with his attitude towards my health, so I found a new rheumatologist and we PUSHED HARD to get access to biologics to see if it would make a difference. I have been suffering for 10 years because doctors are reluctant to give me any type of biologics because I don’t have the genetic marker for AS, so I’ve spent the last few appointments taking literature in to show them how wrong they are when they say things like what I mentioned above.

We finally advocated hard enough (or simply annoyed a doctor enough) to give us Enbrel, and I started it last week. Without having my husband to help push for better treatments I don’t know where I’d be. It’s so important that we advocate for ourselves every time we go to a hospital appointment!

As for outside advocacy work, I’ve been an Ankylosing Spondylitis patient advocate since 2014 and was part of the board of founding directors for Walk Your AS Off, a yearly walking campaign that AS organizations and walkers join from all over the world to walk and raise awareness for AS.

These awareness campaigns run from April to May each year, and I have my own team of walkers. We have 66 walkers on my team, The Walking Spondies, and they are from all over the world.

Each year, I contact them and ask them to track their steps so we can keep track of how much we are walking. I also ask them to send photos of themselves out walking. (The key point here being that exercise is good for folks with AS and motion is lotion.) It’s always a lot of fun to see who is doing what and where our participants are.

In 2018, The Walking Spondies walked over 33 million steps together during the months of April and May. We were the first place winners for Walk Your AS Off in 2018, surpassing two giant teams in the UK that have won the last four years in a row!

I’m very proud of my team and what they accomplished this year. Even though I was not able to walk with them, it was fun collecting all their steps and photos and posting it for others to see. Feel free to drop by The Walking Spondies Facebook page to see what we do each year.

In 2019, we are thinking of branching out to support other arthritis associations. This year, I have been producing content for the Spondylitis Association of America and the Canadian Spondylitis Association to help reach new readers for them.

I am also a strong advocate for Fibromyalgia and for ME. In 2018, MSW won a Healthline award for being one of the Best Fibromyalgia blogs in 2018.

I’d like to focus a little more on ME this coming year because I believe it’s fibromyalgia and ME that are causing the worst of my problems with pain and fatigue.

Tweaking

This month has seen some major tweaking in my treatments. I’m very strict with my diet and with other lifestyle choices that are supposed to help with being chronically ill.

One of them was starting a gut healthy diet in January 2018. I have been working with a local farmer who grows organic veggies in microbe-rich soil. His theory is that we can reboot my gut flora by introducing new microbes to my system. I’ve had some major GI issues since 2016 that are medication-related and thus had to start seeing a GI to deal with these issues.

We saw a quick improvement on his diet of leafy greens. I improved so much that the band of inflammation that circled around my ribs and around my stomach disappeared within six weeks, and just last month, I stopped seeing my GI and stopped taking my GI meds. His diet had corrected the problem!

That’s one less doctor I need to see and now I know that I can combat all those unhealthy bacteria in my stomach with his veggies. He’ll deliver them straight to my home.

The other major change that happened on Friday last week is huge. I have been waiting four years to start biologics to treat aggressive Ankylosing Spondylitis and my health has been so bad this past year, I finally qualified to try Enbrel.

I’m excited by this opportunity, but was also dismayed to learn that I have to pay out of pocket for this medication because it is not covered under Taiwan’s National Health Care system unless you have genetic marker for AS. This is a very silly rule, but I’m tired of not having a life and being housebound, so we decided to bite the bullet and began my new new course of medication last week.

The good news – I haven’t had any pain since my injection and that is very unusual for me. I don’t remember a day without pain over the last four years, so to step out of bed and put my feet on the floor without experiencing that feeling of standing on glass has truly been incredible.

The bad news is I’m still feeling really fatigued and fuzzy. I didn’t expect Enbrel to help with this. I believe that the fatigue is Fibromyalgia and ME, and I am also attributing the fuzzy feeling to ME symptoms. The bed rest continues, but I’m hoping that with Enbrel, I can get back out there and start working back up to my 3,000 steps per day. I haven’t been able to do that since May 2018.

Working

This year has been my worst year by far for health issues. I spent a lot of time volunteering and working on events in 2018 that I was too sick to go to, so we made our final decision this week about how I would continue with work and volunteer positions.

Simply put, I am resigning from the rest of my volunteer positions this week aside from one volunteering writing and coding position that I can do at home and that doesn’t cause me much stress. My husband and I are now working on simplifying my work from home schedule to make things easier for me in 2019.

I can’t imagine what 2019 will look like without doing anything, but it has to be better than killing myself to get things done in 2018!

It’s heartbreaking to have to make these types of decisions. I love my work and I love volunteering. Making this decision was the hardest thing I’ve ever done. I never anticipated having to leave it all behind.

Curating

I’m a huge fan of curating and I leverage my Pinterest account the most for curating articles about chronic illness.

In 2019, knowing that I’ll have extra time on my hands, I’d like to go back through this entire site – all 1,000+ articles, and update them, then arrange them and start with a new social media content list in 2019.

I’m also going to begin updating my links list on this site and I hope to start producing some more content. This gives me something to look forward to while I’m resting.

At the least, it means that I can participate more in A Chronic Voice’s monthly link up parties. I’ve greatly enjoyed participating this year when I’ve been able to, so I’m looking forward to more to come in 2019.

Thanks for inviting me to participate again, Sheryl! I’m making my blog rounds now to leave comments. I will be quicker with December’s post!

 

4 thoughts on “Chronic Illness Prompts: Meeting, Advocating, Tweaking, Working, Curating

  1. Sheryl

    This was such a great write up, Carrie. I had to save it up to slowly read and enjoy it! It’s obvious you’re a very meticulous person who prides herself in quality work, and I suppose that’s why your year was also full amazing stuff! I hope the reduction in activities at least helps with relieving some more of your pain. And with your personality, I’m sure there’ll always be something interesting to do 😉

    Reply
    • Carrie Kellenberger Post author

      Thank you so much! I think I need to have a strong look at editing for length. I haven’t been writing much and when I sit down to participate, it just all comes out. Too long, but thank you so much for the opportunity to share and to meet others.

      The reduction in activities is already helping. Less stress. More me. xoxo See you in a day or two for the December link up!

      Reply
  2. Kathy

    Hi, Carrie! I can so relate to the agony of having to stop volunteering, and work activities. I’m currently in over my head, and am really struggling with what to stop doing. I also think it was great that you got to meet Sheryl in person.

    Reply
    • Carrie Kellenberger Post author

      It’s so hard to come to that decision, but when life grinds to a halt and you’re still chopping away at things that don’t need your attention – when you should be focusing on you – the decision seems a bit simpler. This was a five-year volunteer position and I did well with it. I’m ready to move on and take care of me. I should’ve done that long before this. It’s hard to stop doing things during the holiday season too, isn’t it? It’s nice to meet you again, Kathy! I’ll be by your site again soon and I’m looking forward to your December prompts.

      Reply

Leave a Reply

Your email address will not be published. Required fields are marked *