Why Do You Share About Your Illness Online?

This blog post is a part of a blog carnival for Restoring Quality of Life: the official blog of the Partnership for Palliative Care. You can find the call for submissions here. Also, hey, do you want some mood music? Click play below so you can listen while you read 🙂


I fell ill in 1993 when the internet was just starting to be a thing and there wasn’t really anything out there for kids or adults with rheumatic diseases. Now there are resources – but not enough and not many from the viewpoint of a sick kid growing with their disease. I thought my little family (my sister and mom also have Still’s) was an anomaly. I never knew fibromyalgia was a thing either, or that for me the onset was around the same time as the Still’s hit.

I began blogging as a way of explaining to him what my disease was like, what it could do, and what I felt like. It was a way to share things with him that, even now, can be hard to share face to face. It was a way, too, for me to explore my illness as an adult. I didn’t know many of the issues that could happen with me, and quickly learned that some of the issues I did know about were outdated. I explored medications and, finally, doctors. I’ve gone from a college sophomore in every sense of the word to an educated woman helping to educate others. All of this happened because of this blog.

When I was in college, I made it a point to not share that much about my health – our officiant for the wedding (one of my favorite college professors) had no idea until recently that I’d been sick virtually my entire life. I grew up as a child with others making fun of me for being different, and I wasn’t about to subject myself to that as an adult in a new and strange land (frozen Wisconsin). As I became more involved in health issues and activism, it became harder for me to hide my disease – I also stopped wanting to hide. I began to meet others who, like myself, have dealt with Still’s specifically or other rheumatic diseases. I began to really learn that I wasn’t alone. I had a place where I could go to ask questions of the more experienced patients and learn what was really normal for us and when it was time to go to urgent care. I’ve also played those roles for others – counselor, friend, priest, nurse, etc. I’ve helped track down resources that have saved the lives of virtual strangers, and that creates a feeling I can’t even begin to put into words. I have been saved in a similar fashion, and I can’t begin to express my gratefulness for that.

2012 was an amazing and terrible year all together. My sister had a baby in August. Along with Missy came the fears a chronically ill mother or other relative faces – will that baby be sick like me? Will I make the right choices for her? Will there be treatments that work? Will there be doctors who have a brain? I began to ramp up my advocacy to help that. I wanted there to be resources for Missy if she does get sick, and I wanted my sister to know that everything will be okay. In December, I lost one of my closest friends to an infection that should’ve been caught easily, but wasn’t as a result of gross negligence on the part of doctors. I grieve over losing Laura every day, but I also know that it brought me closer together with some amazing people – and it fueled that fighting spirit in me even more.

As a result of some of my work the past almost seven years, I’ve had the luck to experience talking to politicians – and will be going to the Arthritis Foundation’s Advocacy Summit at the end of March to do so on a larger scale. I’ve been able to help legitimately make changes that are starting to make differences in the lives of others on a larger scale. And, damn, that’s an addicting feeling.

I blog for myself, for my mental health – because it saved my life. I blog because I know it makes a difference to people. I blog because I want a little girl to know she isn’t alone – and I want to be a resource so that when she starts dating and looking at colleges, she has someone to talk to about all of that. I want her to know tips and tricks on how to look and feel more normal. I want her to know that she should be as educated as possible on her disease(s) because it might save her life. I want her to be able to talk openly with a significant other on their intimate lives and how to improve that so she avoids falling into the divorced-due-to-illness statistic. I want her to know her rights. I want politicians to know what’s happening and how they can help change things for the better. I want to raise awareness in the public over the issues we face, both as children and as adults. I feel like I could go on forever about this.

Why do you share about your illness online?

An Idea!

The boyfriend had a wonderful idea for a question to share!

I know! Pretty cool, huh?

He was thinking about a cure for autoimmune arthritis and what it would look like. What would we, as people dealing with these diseases, be okay with? Would it be a medication that stops any further damage, but halts you where you are? Would it have to reverse all damage? What if you still had tough days, but fewer of them?

In a perfect world, obviously, we all want to be completely ‘normal’ – but what would we accept?

I know I’m biased, but I thought this was such a great idea that before I wrote about it I would love to hear what others have to say too!

So! Please send me your ideas! I would love to share them, kind of blog carnival-y. If you have a blog, I’d love for you to post there and then send me a link to that entry so that I can showcase it in my response! If you don’t have a blog, feel free to start one! Oooor just email me your thoughts 😉

Oooh, but just one thing – I’d love to post this in a timely-ish fashion soooo we should set a deadline! How about I need submissions by next Sunday, March 18th, by midnight pacific whatever (savings?) time.

Thanks in advance for your input! I look forward to reading your ideas!

The Medieval Pain Scales

The art of medicine has evolved immensely in the past few decades in general. We have new treatments that give people with a number of diseases, like cancer and HIV/AIDS a chance at a life longer than a few months.

And yet, there is so much still to be redone and changed for the better… like the pain scale. Or, more specifically, the pain scale for chronic pain patients.

You may be wondering to yourself why this even matters.

Because my pain doesn’t always fall into this damn scale. My ‘little bit’ is considerably different than that of a ‘normal’ person. And my no hurt has visited me a total of maybe 5 times in my life when not getting jiggy with it (yep, too much information, but I don’t care!).

Do you really know even know what the scale above means? I sure as hell don’t.

Do doctors really even pay attention to this scale? And to our answers to it? What if I’m perpetually at a 3-4?

In doing some research, I found that those of us talking about pain scales right now are not alone in wanting this to be revamped. Back in 2002, a guy named Jack Harich with the International Pudendal Neuropathy Association developed his own pain chart. And I kind of like it. It seems to be more in tune with how I see my pain than any other I’ve found so far.

First, you try to determine if your pain is mild, moderate, or ‘holy shit I am going to die’/severe. Thankfully, Jack included descriptions so you don’t have to guess! I don’t know that I exactly agree with all the descriptions. I think you can be ‘disabled’ at any range,  and I think you can live independently while being disabled. I’ve seen it in my family, and in my arthritis family.

He included descriptions of each pain level, which I agree with for the most part. I don’t know about the dental descriptions on some. But that’s because I had horrible wisdom teeth coming in and going back up for years.

I generally sit at a 5-7, jumping up to 8-9 probably a few times a week. Fun tidbit: today, I actually left work early because I was at an 8. I was 7-8 pretty much all day yesterday and ended up staying in bed most of the day.

To be honest, I don’t know that I’ve ever been at a 10. Maybe once or twice, but not that I can clearly remember.

Is this type of pain scale going to make it more difficult for patients to describe their pain with a number?

I don’t think so. I think that, along with the paperwork you’re sent for a first visit, you should be sent a copy of this pain chart. You should be keeping a general record of your pain for a month or longer before your appointment, according to the chart. Then, when you are asked what you current pain level is, you should be keeping this chart in mind.

Can you imagine how much easier it would be with a chart that is actually explained and uniform? And without those damn faces mocking your pain?

Even without this scale being implemented and explained to others, I’m going to use it to refer to in my own personal health. I may even print it out and bring it to my rheumatologist in order to better explain how I’m feeling. Because otherwise, you and I both know, those numbers don’t really mean a damn thing.

PFAM Time!

Well, I only got two submissions for this edition of the PFAM, but hey it’s better than zero!

I love Nessie’s blog, Lipstick, Perfume, And Too Many Pills. Her post, Keep Fit And Have Fun, is all about making exercise enjoyable. I’m pretty interested in investigating in her Netflix yoga find!

Carla, from Lupus and Humor (and The Singing Patient!), talks about the struggles she faced in her efforts to become ‘normal.’ I wish I had the tenacity to follow through like her!

We all understand how difficult it is to stay fit when dealing with pain. Along with the ‘normal’ excuses for not going, we get to endure crazy amounts of pain and swelling as well. I think the biggest keys to success are to only do what you feel comfortable doing, and to have a workout buddy who understands what you’re going through.

I am lucky enough to experience both (on occasion). The boyfriend and I usually go together, when my schedule allows it. Really my biggest problem is to keep my exercise down to what I know I can do. Often I will try to go running instead of just walking… which would be fine if my knees, ankles, and hips weren’t my worst joints. And then I end up wiped out the next day. But you live and learn. Hopefully, most of us learn more quickly than our bodies seem to want to do.

Hope you enjoyed this small edition of Patients For A Moment. Check out the PFAM blog for more dates and topics.

February 16th edition of Patients For A Moment

I’m reposting this so that it stays at the top of the page!

So I’m hosting the next edition of Patients For A Moment (PFAM). If you don’t know what that is, why don’t you click here and we’ll tell you all about it. Anyhow, I kind of get to choose my own topic and ask everyone to write about it. If you’re looking for a good example, check out the most recent post at It’s No More In My Head. So, here’s my prompt:

Fitness and chronic pain – what’ya gonna do?: Those of us with chronic pain conditions know all too well how bodies need exercise and activity. But what happens when you’re in pain? What challenges do you face in staying fit? What ways have you found to work around problems? Or, do you have a fun/interesting/crazy/horrible fitness story?

I’ll bet you do!

Soooo, if you’re interested in sharing, email me the following at kwhiggitywhiggitywhack@gmail.com:

  • Your name (as you want it to appear)
  • Your blog’s name
  • Your post’s title
  • Your post’s URL

Oh hey, and try to get your post to me by the 13th, eh? I mean, as long as you get it to me before the 16th, you’ll probably wind up in the post but please understand that if you send in a post at 11:59pm on the 15th, it might not end up in the carnival. The post of posts will go up on Wednesday, February 16th. Even if you’re not participating, come check it out!

Oh, I almost forgot. I’m going to try to not write again until the PFAM post is up, so that this post will stay at the top of the page. But I have a doctor’s appt on Monday, so that might throw things off a bit.

Happy writing!

PS: Yes, I know, my email is ridiculous/awesome/fantastic 🙂