Tuesday, July 15, 2014

One in a million? Try one of two-thousand.

Juvenile arthritis affects roughly 300,000 kids in the United States (or 1 in 250). Of that, 10% of kids end up with systemic. Of kids with SJIA, only 2-6% get uveitis. That makes me one of roughly 600-2000 (if I still count my 26 year-old self as a kid). That means I'm one in 42,000-125,000.

To put it into more perspective, that's about 7-20 kids in the whole state of Oregon or 10-31 in Wisconsin.

Everyone loves the thought that they're special, but damn, not like this.

Tuesday, July 8, 2014

Wedding Crunch Time!

I get married in *checks phone* 38 days (side note: HOLY CRAAAPPPP). My to do list, while shrinking, feels quite large. Stress is rising and, combined with constantly changing humidity, my body is pisssssssed right now.

I'm actually home sick today thanks to that lovely humidity. T had to wash my hair for me on Sunday because my hands were so painful to really even move. There is definitely an embarrassment that comes along with this. I know it doesn't matter to T, but it has to do both with dignity and frustration with my own body. To be honest, the fact that we're a little over a month out from the wedding and I'm feeling that poorly is frightening to me - and makes me glad I have people to do my makeup and hair for me.

I keep meaning to write more, to talk more about what's going on in my life, but wedding stuff has me busy and/or panicking soooo probably not going to happen until September. That said, I definitely will be updating the facebook page with stories I find, how I'm feeling, and perhaps even a little bit about the wedding!

I'll see y'all on the flip side of my name change!

Tuesday, June 3, 2014

A lot of changes

Fun things I've been up to:

  • Moving this week (until Monday)
  • Unpacking and getting organized (forever)
  • Skipping my Cimzia because I'm bad and didn't want to do the shot in the middle of moving so I'm on my fourth week post-shot. The med is working well for me though, so that's happy news.
  • Practicing my ukulele because I'll be performing in public for a few performances later in the month (WHAT)
  • Finalizing a bunch of the wedding planning - alterations and a hair trial at the end of the month and I still have to buy a good amount of stuff for decoration, etc. Shower and bachelorette party are coming up too!
  • Cutting toxic people out of my life. I may elaborate in the future, but I've come to realize who I want to spend spoons on and who sucks the life out of me. Life is too short, especially with limited spoons, right?
  • Starting PT again because my left knee just sucks. He's got me doing a lot to strengthen the left hip, because he thinks that is where a lot of the issue is coming from. He also thinks that my leg length discrepancy is actually caused by my scoliosis and not the other way around - laying down it's only maybe 1/8 of an inch, so that makes sense.
  • I want to revamp the site a little bit, so please feel free to share information on what would be helpful for you to have easy access to (journal articles? doctor lists? JA resources?)
All in all, I'm feeling like a chicken without a head haha. Things will improve at the very least after the move is over, and I really get down to business on the other things.

Hope you're all doing well!

Wednesday, May 21, 2014

2014 Arthritis Advocacy Summit Recap

I've really fallen quite behind again in posting things, but the craziness has (kinda?) died down a little bit. Count on some more regular postings soon :)

For weeks, I had been on edge. I had neither traveled on my own before nor been to DC. As someone living with a type of autoimmune arthritis, this frightened me to no end. I knew that I would be around others advocating for the same causes, but would I be able to do all this running around? Would I be able to complete my tasks for each day, and still have enough spoons to participate in dinner or other activities? I was concerned, and questioning my ability to go and do these things. In the end, I ended up going - and I can’t even express how glad I am that I was able to go.

When I arrived on Monday, my first order of business after checking in was to attend a lecture on arthritis research given by Dr. John O’Shea of NIAMS. He discussed a lot, but focused on the advances in technology and how they make all the difference. He also spoke about the JAK inhibitors, like Xeljanz, that he has helped to develop through his research. It was an amazing way to start out the summit. I would be lying if I said I didn’t get teary-eyed during his lecture or the Q&A portion towards the end. These new treatments mean that we can help to treat those for whom other drugs didn’t work. It means that we have new avenues to explore, new weapons to launch and to research in the future. It also means that, hopefully, the number of people I know of every year who die from complications related to their arthritis will go down.

Later in the evening, we had our orientation meetings. As a first-timer, I sat in on the beginner’s section, where Laurie Markle and Michelle Guadalupe walked us through the issues, how to talk to politicians, and more. As an Arthritis Ambassador, it was great to get to learn more about these integral staff members of the foundation and to get to meet them, as I often hear their voices on calls or receive emails from them. It was also a little bittersweet, as Laurie moved to Zambia Thursday after the summit wrapped up. She has done a lot to help push a number of bills through through her work both with the summit and the ambassador program.

I was able to meet up with another person dealing with Still’s for dinner. It was great to be able to really connect after spending much time discussing the issues we face together. It added another layer to the idea of this summit - that I’m not alone, and I’m not the only one who will fight with everything I have to get us to a cure.

There was also a teen meet and greet that I was pretty tempted to crash to be honest. Growing up with this disease is isolating and it’s fantastic when you can be around younger people who share your pains as well as your zeal for advocacy. I figured in the end, though, that this 20-something should probably get some rest.

Tuesday was a very long day for us, jam packed schedule-wise. We hit breakfast bright and early with our state coordinators and others before moving into another room to hear from our new CEO and president Ann M. Palmer. It was refreshing to hear from her, and to see her interact with others during some of the downtime. Dan McGowan, chair of the Board of Directors, introduced her and started off the summit right by stating that the advocates were the “special forces of the arthritis population.” We heard from Congressman David B. McKinley (R-WV), who was given the 2013 Congressional Advocacy Leadership Award for his dedication to our causes. It was inspiring to listen to his views on helping others, especially as he talked about his personal struggles with hearing issues and how he wasn’t here to make a career in politics but to institute change. At one point, he stated “Many of you out there can’t vote for me, but I can vote for you.” It was enough to leave this gal teary-eyed.

We also were able to hear a lot from Christopher Kush, who is the MPP of Soapbox Consulting, on how to better get our messages more clearly to our representatives. He brought in several people to represent the asks we were going to discuss, including Beth - a young girl living with the same disease I face and also dealing with access to treatment issues.

Since my state had a small delegation, we separated for lunch and met up to catch our bus up to the senate meetings later in the day. We met with legislative assistants for Wisconsin’s senators, then headed back to the hotel. At this point in the day, my body was tired, so having a few moments to slather my joints in BioFreeze and take a bath was great.

At dinner, we celebrated several activists working hard for change as well as the most involved in the Arthritis Ambassador program. We then heard from Brian Teacher, 1980 Australian Open Singles Champion. After some networking, I went upstairs to get packed and rest up for Wednesday.

We met early for a boxed breakfast before our first meeting over at the House offices at 9:30 and did our drop offs - where we ran into this amazing setting for a picture.

Our next appointment was at 1 and some of the members of my delegation had to leave due to travel schedules. In between my meetings, I explored the surrounding area, taking in the Supreme Court and the grounds of the Capitol. I was hoping I might get to snag a picture of my Joey B, but alas all I saw in the immediate area were guys and gals with big big guns.



For my meeting at 1, I met with the representative for my district, Mark Pocan. We met in September to discuss HR 1827, and he became a cosponsor of that, and HR 460, shortly thereafter. I’m incredibly grateful for the support that he and his predecessor (now-Senator Tammy Baldwin) continue to give the Arthritis Foundation.

I took some time to visit the Folger Shakespeare Library, which was fantastic. Coming back, I had an awfully hard time catching a cab, so I walked from the Capitol Building to the Washington Monument - a whopping 16 blocks!! I was definitely sore! I caught the metro (which I love btw) to a friend's house, and it was really great spending time with her.

All in all, during the three days I was at the summit I walked about 30 miles - 12 alone on Wednesday. I met with two representatives and the legislative assistants to our two senators. I met up with and ran into friends and others I admire, and met new people with whom I hope to keep in touch. I learned more about innovative research and more about how each state is affected by this umbrella of diseases. I laughed and cried listening to these stories, to stories that are similar to mine. I’ve known for some time that I am not alone in what I live with, but to truly interact with people on this level really hammered it home for me. I learned more about myself through these interactions, traveling alone, and visiting awe-inspiring sites. Perhaps most importantly, this trip cemented what I’ve known all my life. It also gave me a sense of self - I know now that I can be self-sufficient in a way that I've not really experienced on a big scale before. Honestly, and this might make me sound full of myself, I walked away being proud that I was able to do so much.

I grew up with dreams of working at the UN and solving the world peace issue, only to have those unfortunately crushed due to my worsening condition forcing me to drop out of graduate school. For a long time, I was depressed. My whole life I focused on this career that was now out of reach. When I joined the Arthritis Ambassador program, I thought that it would help heal some of that pain by giving me a little piece of that dream. This summit allowed me to both experience even more of that dream, and really lit a fire in my soul to step up and truly be an ambassador. It has given me more contacts, more stories to share, more people to lean on and ask for help.

Want to see more pics? Click here!

Monday, May 19, 2014

WAAD Live Chat TONIGHT at 8pm CT

Hey gang!

Sorry I've been a little MIA lately. I've got a lot going on (that I'll go into more later, I promise!!).

I just wanted to drop a line and say that TONIGHT I'm doing a live chat/hangout for World Autoimmune Arthritis Day. It's $7 to get access, but there are a ton of resources there from booths (think companies like Creaky Joints, the Arthritis Foundation, AARDA, Wego Health and others around the world) to pamphlet-type deals to blog posts and more! There are a ton of live chats coming up in the next 40-something hours, and while I may be biased (since a lot of them are friends and awesome people) I think it's a great source of information.

My chat tonight is from 8-9pm CT. I'll be answering questions about everything, from sex to growing up with JA to advocacy and more, in the Meet & Greet Booth in Exhibition Hall 3.

Please check out this schedule for more people, but definitely make sure to check out the chats from Rochelle Lentini, Julie Cerrone, and Dawn Gibson just to name a few.

Hope to see you tonight!

Thursday, March 20, 2014

A Day in the Life

My alarm is set to go off at 5:50, just so I can hit snooze several times. When my alarm goes off again at 6:10ish, I'm generally awake enough for the pain I'm in to really hit me. I do some stretches in my sleepy snooze state to try to loosen up. I'm finally up about 6:30. I hobble to the bathroom and play on my phone to wake up. I take my meds and do some dry shampoo (there's no way a shower is happening in the morning during winter y'all, and sometimes this doesn't even make it) before I head back to the bedroom to psych myself up to pick out clothes and get ready for work. I may use my biofreeze if I have particularly bothersome joint (i.e., if I had a saw, that joint would be history). I make some coffee and throw together my food for the day - some protein bars and greek yogurt and usually something else healthy and/or tasty (like some GF bread or pastries, or hummus and chips).

I head out to catch my 7:15 bus around 7:07ish or so - earlier if it's icy or snowy, because my current apartment complex isn't maybe the best at clearing any of that. Hooray. Our building is behind two others, and I usually go through one of the others to get to the bus stop so I'm not outside in the elements as long (read: I live in Wisconsin - 'nuff said). Since my bus starts its route at our complex, I'm able to catch one of the front disabled seats. It makes it so much easier for me to get around without having to whip out my cane and feel embarrassed.

Once I get to my stop, I have to walk a couple blocks and a few sets of stairs to make it up the hill and into my office. I'm usually in early, so I spend time with my work BFF before I'm actually scheduled to start. I usually am pretty into slurring my speech in the morning - something that much be a side effect of either having to be here or a medication, but I'm unsure what. I'm pretty tired in the morning and not necessarily here if you know what I mean. I spend most of my time on the computer, balancing our department credit cards and handling travel arrangements and all sorts of other things. When I have lulls in my day, I spend time working on our social media. Throughout the morning, I eat 50-100% of the daily value of protein.

By the time lunch rolls around, I'm pretty tired already. My biggest consolation is that for an hour I get to choose what I do, and at the end of that I have 3.5 hours until I get to go home. I write blog posts, participate in twitter chats, and just generally work on advocacy issues in addition to checking out my own social media (now that I have my wedding 85% planned anyway!!). I'll make sure to check my calendar so I know I'm not missing any chats or things I've promised to be a part of. When it's nice out, I try to go outside for a little bit of lunch, but with our lovely cold temps lately that's not been an option really. On campus, they don't do a great job of taking care of the sidewalks either so hooray for that. Every other Friday, we have faculty/staff meetings at lunch (which I don't usually eat at) so I eat early or, more often, late. Lately, I've tried to cut back on caffeine, but I have to have some by lunch or my migraine/neck/back issues go crazy.

After lunch, I tend to sort the mail and take care of any additional packages that may have been delivered. I also start up my music if I haven't already. It's a huge part of what gets me though the day. We have office support staff meetings every other Monday at 2, so I'll get ready for those when they happen. If I have any travel to arrange, I try to make sure I get it done in the morning as it's usually less busy. I try to just kind of get random small things taken care of after lunch and save the bigger projects for the morning. Lately, at some point in the day (near lunch) I have to take a muscle relaxer. My neck/back have been huge issues lately and I'm not sure just why as of yet.

By the time 4:15 comes around, I start to put away our credit cards and keys and get ready to close up shop so I can be out of here at 4:30 and head down to the bus stop. There are more buses in the afternoon that can get me home than in the morning, but since my quitting time coincides with most people's that also means the buses are more full. If I'm lucky (and I usually am) I can snag one of the disabled seats and not be forced to stand or crawl over someone.

By the time I get home, I'm usually fairly tired. T doesn't get home until about half an hour later, so I'll use the time to play video games or do Truvio surveys or watch TV or other things. I may eat a protein bar or a bowl of cereal, as I'm often pretty hungry about this time too.

I wish I could say that I was sticking to my running regime to train for my 5k, but lately I just feel so awful I spend most of the night on the couch. Recently I've begun to wear a pedometer and realized that I walk an awful lot more than I thought - a half mile by the time I get to my office in the morning alone! My new drug (Cimzia) is great for joint pain but I find my systemic features are more prominent than they were when I was in the grey area of no drugs. Maybe I'm just able to focus on that more as my joint issues are calming down. Who knows. Mentally, though, I've been able to handle paying more attention to things and have caught a number of mistakes made when I had high pain (i.e., when my Lyrica was tied up in the prior authorization game and no one was doing their job to move it forward). It's frustrating to see this affect my job performance as well as other aspects of my life.

I've also been working on a number of projects lately that are keeping me pretty busy. I recently served on a JA Youth Panel for my local chapter of the Arthritis Foundation and I'll soon be in DC for the Advocacy Summit, so I've been doing a lot of research and putting a lot of information together for all of these things in addition to planning my wedding. I'm not sure people understand how much effort I put into any of these things - mostly because I tend to not brag - but with the panel I spent basically November to the morning of the panel on February 22nd reading and creating lists and asking other people to share ideas and listing points to hit. I seem to be involved in a lot of these types of things, and while many may regard them as special events, they really are a part of my everyday life. Between my research and spoonie chats (every Wednesday night 9-11 ET on Twitter - use #spooniechat and follow DawnMGibson for info), there is some special thing I'm working on.

I take my bedtime cocktail of pills at 9pm so that I can hopefully be asleep by 11ish. Some nights I fall asleep before I even make it to bed and T has to get me coherent enough to get to our room. Sometimes it's hard to find a comfortable position, especially with my neck and back issues, so falling asleep takes longer even though I'm ready to go. There are nights, though, where I can't sleep due to pain but can't take more pills if I want to work the next day. Being awake with nothing to do but think is very hard on chronically ill people. We think about everything we fail in and about all of our fears. We wonder if our new symptom is a side effect of a med or are we doing something wrong or do we have yet another illness. I personally think about death a lot due to having lost friends to their respective diseases. I worry about the future a lot, and it's hard to turn that worry off. It's hard to operate without enough energy/spoons. It's hard to face these big issues alone - and to be in a state of mind where you seem to face them every day.

The great thing, though, is that I know the chronic illness community gets it. And that makes all the difference.

Thursday, February 27, 2014

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?