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?

Monday, February 3, 2014

Memo to Everyone Ever: Please Stay Home When You're Sick!!!!

Please stay home when you're sick. If you're not better after a week, go to the doctor.

I'm sitting here crying my eyes out and feeling just absolutely rotten because !SURPRISE! my boss came into work ill for like the last month. She's not gone to the doctor either, so who knows what this is.

T is running to the pharmacy on his way home to see if the pharmacy can find anything I can take. Between the drugs I'm on and my allergies, I basically have like no options.

I've said it before, and I'll say it again -

Rest. Don't neglect your self-care in the interests of being productive. Don't endanger the lives of other people by continuing to come to work ill. Don't expose people with autoimmune issues on immunosuppressant drugs to your ick.

If you'll excuse me, I need to go pass out.

Tuesday, January 28, 2014

Tips & Tricks for Docs and Other HCPs

I was recently asked for my thoughts on training doctors. It's a subject that's been on my mind lately anyway, thanks to the #MedX chats on twitter & google plus. Here are some of the things I wanted to share.

I think one of the most important things for docs to understand is that chronic patients don’t come looking for drugs. We come looking to get relief and help. If a chronic pain patient walks into your practice and says they need higher pain meds, doctors need to think about how much courage that patient needed in order to bring it up as well as how high that person’s pain levels must be. There is this almost automatic shudder when these things are mentioned and patients, especially younger females, are treated as though many things are all in their heads. By doing that, you further ostracize a patient, which just deteriorates their mental health to a dangerous point and also makes it less likely that they will follow their medication or other treatment regimens.

Really listening, instead of hearing, makes a huge difference. I suffered from fibromyalgia pain for years before Kathy (my rheumy's NP) really listened to my symptoms to find it. My previous rheumy thought I had it, but never told me or ran any tests. I got to suffer through that pain, which ended my graduate school career and forced me to change jobs, while someone could’ve treated it if they only listened and cared enough to discuss it with me.

Having ideas on how to deal with the day-to-day issues will help immensely.

Read up on journal articles about transitioning care for juveniles who have recently graduated to adulthood. There are often things we go through that are different than adults who fall ill. Mentally, things are darker because we may have never been well enough to participate in things. Physically, things tend to be worse for us as well due to wear & tear, and the time damage has had to occur.

Treat us as your partner in the battle against whatever diseases you work with. Patients who feel as though they can work with their doctors instead of being told what to do, often do better than the others. Be receptive to new ideas, even if you think acupuncture may just help due to placebo. If no harm could be done, encourage your patient to find things that will help them – and learn to recognize body language that suggests people are having a harder time mentally or physically. It really helps in protecting patients from their own minds when you can know there is something wrong and engage them on it.

What would you share?

Saturday, January 18, 2014

January So Far: 5k progress update, snowshoeing, activism, and Washington, DC

January has been crazy so far! We in the midwest started out the month with temps in some places even lower than -50 degrees Fahrenheit. Sometimes, it's enough to make me wonder why I even live in Wisconsin! But then, I remember I have some of the best docs out there and that winter isn't all bad.

picture of Kirsten in a Racing for the Cure sleeveless jersey

I started off the new year getting my racing jersey for the Arthritis National Research Foundation. In case you haven't heard, I'll be running a 5k on May 3rd in order to help raise money for this wonderful organization! Feeling generous? Donate here!

I was a little worried about how this whole 5k training would go, so I snagged the Zombies! 5k app for like $2. It's amazing and I'm considering downloading their other running app once I'm through the 8 weeks of 5k training so I can keep it going. The app helps a ton, to the point where I went over 2.5 miles in just over 40 minutes non-stop on the elliptical at the gym. I seriously couldn't believe it, so I had to document it (DUH).

picture of an elliptical machine with stats on activity

My goal is to do these workouts 3 days a week, but we want to be more active as a couple, so T and I bought snowshoes today! They're super fun and a great workout.

picture of Kirsten's big feet in a pair of snowshoes

On the advocacy front, I have a lot of exciting things coming up. I was nominated for a couple of Wego Health Activism awards (thank you, you sneaky people - I love you!), and am excited to see how that will pan out. It really is an honor just to be nominated - and to be judging one of the categories as well! It should be a fantastic time :)

I recently joined Seth's 50 State Network from the Global Healthy Living Foundation and Creaky Joints. Seth is actually the dude in charge over at CJ, in case you're wondering. Advocacy Joe, who recently began regularly blogging for CJ, is really doing a great job of getting people involved in trying to affect legislation and really raise awareness about arthritic diseases. I'm incredibly excited for the things we have coming up this year, and for the push this network I know will give me to get my story and those of others out there. Joe recently wrote a piece I just love - and that fact that I'm part of it might have something to do with it, but I'll just let you judge for yourself.

I'm very excited for the youth panel I'm doing with my local chapter of the Arthritis Foundation at the end of February on the transition to adulthood. My reading is going... Well, I have like 5 books to read still. I should probably get cracking on that...

I also got some AMAZING news earlier this week - I'm headed to DC in March to be a part of the Arthritis Foundation's Advocacy Summit! I'll be staying a few blocks away from the White House (AHHH!) and will have some downtime while I'm there on my lonesome. If you'd like to meet up, or have something fun and touristy you think I just HAVE to do, let me know!

What are some things you would like to see happen on the activism front?

Thursday, December 26, 2013

A long, long update

So, let's see, when was the last time we really talked?

Oh. Oh my.

Well, I started a new job at the end of July. That's been going well, though I will say it is stressful compared to my last job as I actually do things and have responsibilities now. I'm working in the office of a department at a local university. I love it - and, more specifically, I like being able to pay all my bills and cut down on some of my debt!

In August, we got our engagement pictures done and holy crap you guys I have just under 8 months to plan this shizzzzzzzzz. There has been some drama (i.e., we picked a florist and then she bailed) but we have plenty of time to recover I hope. I have no idea how to pull together some of this stuff and stuff our ideas into the melting pot of love... which sounded less perverted in my head haha.

September saw me feeling the best I've ever felt in my entire life. I was running - sometimes up to a mile! - throughout a chunk of time at the gym. We went hiking several times and it was tons of fun... My inflammation levels were all low, and my pain was controlled! Everything looked great...

But then, thanks to my new job, I got new insurance and that required a prior auth on my lyrica - which we had to go through 2 months in a row because they don't freaking know how to do paperwork over there. Pain levels were high, and the stress that brought (and other crap) didn't help things. December saw me with high inflammation levels and the enbrel wasn't doing a thing to help with it.

The last few months have seen us facing a number of high stress and scary incidents too - my mother was in a terrible car accident that she miraculously escaped with bruises and a concussion, but has her a little road-weary. My step-dad had to have further surgery for his diabetes and things aren't looking great on that front. T's aunt saw her breast cancer return, with a stage 4 status, and then this past Sunday suffered a minor stroke. T's had some of his own health issues, and it has been hard to watch him deal with those. On top of all of that, we have the wedding planning and more. I just have been feeling so emotionally overwhelmed but everyone says crap like 'be strong' and so I don't show it or share it.

The last few weeks have been enormously hard emotionally as well, dealing with the year anniversary of Laura's death. I had thought it would be easier when we got to a year - that things would sink in. It would still be sad, but maybe we could all really start to heal. Now that I'm a few weeks removed from that day, I am emotionally feeling better, but still very raw.

I had a terrible dream on the anniversary of her death. T and I were on a cruise and there was some emergency that we of course were sure was just precautionary. He runs to go take a look and calls out my name in the most unnerving tone of voice, and I turn from what I'm doing to see that the boat is sinking. Unsurprisingly, my heart sinks and I have that 'holy shit I'm going to die' realization. When I woke up from the combination of the nightmare and my sky-high pain levels, I never had that comforting 'oh oh good, it was all just a horrible dream' feeling. I'm constantly on edge and, if the topic of death or the meaning of life or any of that existential crisis crap should happen to pop up, I'm incredibly sensitive to it - like in the freeze up, panic attack type way. This is the first time I'm really talking about it with anyone, but it's also gotten better as of late for the most part. I sometimes have existential crises, but they're often short in nature (i.e., not even a whole day) so this has been hard to deal with. I'm thankful my nighttime meds are back in force, and I can really sleep throughout the night.

The Friday after, between work and everything else, I had a breakdown the likes of which T has never seen before. I'm sure I cried for like an hour and I felt better afterwards, but damn. It was hard to be that vulnerable and I'd like to avoid it whenever possible... though I didn't mind the nice things he said to cheer me up. I'm lucky I have him for sure.

My pain levels are getting back under control, but my inflammation is not. I'll be switching to Orencia in January/February depending on how long it takes them to prior auth that. I just got all the info in the mail from the company that makes it. I'm nervous, but ready to just move on to something that works and hopefully doesn't make me feel like crap when I take it like the enbrel has been doing lately.

Are you ready for the good news? Me too!

I've been asked to be a part of a panel on juvenile arthritis for our local Arthritis Foundation chapter in February, so I've been doing a lot of research on the transition from childhood care to adulthood and all that fun stuff. Oddly enough, it is fun for me to read all this info. I'll be doing more with that here as well.

As a part of that, I spoke with a pediatrician in Ohio who deals specifically with SJIA/Still's (and MAS). It was a refreshing conversation, and he agreed that there needs to be a focus on how to be a healthy adult for these kids transitioning. He also passed along some medical research to share with my rheumy, and has graciously opened up his brain for me to pick. I'm really quite pleased that he agreed to speak with me.

And I'm a little afraid of what I've just signed on to do, but I have made it a goal to run a 5k in May raising money for the Arthritis National Research Foundation, who donates 91 cents on the dollar to research. They've made some important breakthroughs lately, so I'm excited to help be a part of that (I think? I'm tired haha)! If you'd like to donate to the cause (or join us!), come check it out!

I feel like this totally turned into one of those super annoying Christmas letters, save that I didn't tell you about anyone's goiters or corns or enemas... for now.

Tuesday, December 10, 2013

The Longest Year: Laura Remembered

I don't even know what to say or where to start. How do you celebrate the life of a woman who completely changed yours when she's no longer here, and how do you try to put any of that into words?

I found Laura after I had started blogging about my own experiences. One day I reached out to her to let her know how helpful her blog was and, to my surprise, she responded. We began to talk about our experiences and, while there are some differences, our stories are extremely similar. Those similarities just grew with our friendship. We always kind of just knew how the other was doing, even without talking, because we did the same things when we felt awful. We even got engaged the same year to the most amazing and supportive men I've ever known. I'm biased when it comes to Theron, but not when it comes to Laura's Matt. The two of them are exactly what partners should be, and I hope they both know how much of a difference they've made in the lives of two chronically sick chicks. We were so looking forward to planning our weddings together. I found my wedding dress a few months after she passed and, on a day where you're supposed to cry happy tears, I cried because I knew I couldn't share that , or any aspect of the happiest day of my life, with her.

One of my favorite things we had in common was our sense of humor. Many people get grumpy due to pain, especially when it is chronic and/or severe. Laura was one of the first people I really met who, like me, tried to cheer herself up with humor and never wanted to treat others poorly. She would ask how you were doing, even if she was in the hospital and clearly doing worse. The week before she died, she and I were discussing some pain I was having and she was trying to help me figure out what it was while she was in the hospital with organs failing. Even if she was expressing frustrations with pain, she never seemed to complain. That was part of what alarmed me the weekend before she died - she was talking about how much pain she was in and how nothing was helping. She and Emily from Chronic Curve were discussing the pain and possible ways to deal with it. I knew something was wrong, but I didn't know just how bad it was.

That was Sunday night, and she passed away on Monday. I found out on Tuesday through one of her friends, but in reality I think I already knew - we all did. There are very few deaths that can bring the rheum and spoonie community to their knees, and Laura's was one of them.

As hard as it is to say, there are some good things that have come out of Laura's passing. Out of the ending of her story, so many people have been brought closer together. Emily and I have forged a friendship along with others that include Matt's mum, Many who knew her have taken up activism in her name, and those of us who were already activists have a renewed passion for fighting these diseases in any way we can.
There is nothing I could say that could cover everything she was and continues to be for me. She has been a sister, a confidant, a best friend, therapist, personal motivator, and doctor all in one. She continues to be many of those, despite her physical absence.

I will be forever grateful for the things she gave me, both in life and in death, but especially for her catchphrase that gets me through every day: "Living with Still's is still living."