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

Posted on by Grayson

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.

Tips & Tricks for Docs and Other HCPs

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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?

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

Posted on by Grayson

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?

A long, long update

Posted on by Grayson

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.

The Longest Year: Laura Remembered

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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.”

Want to get more involved with National Arthritis Week?

Posted on by Grayson

So you want to get more involved with National Arthritis Week eh? Well, you’re in luck! Check out some of these resources:

Also, don’t forget World Arthritis Day is on Saturday, October 12th!
Whatever you do, get involved and promote awareness. Diseases where arthritis is involved aren’t always bone-focused (though those can be life threatening and scary as well); sometimes they’re mistakes in the immune system. These diseases can – and do – take away adults and children that we love. The only way things will get better and change is if we make that happen.

National Arthritis Week (7-13 October) and World Arthritis Day

Posted on by Grayson

 

This week is National Arthritis Week in the UK. I live in Wisconsin, but you know what? Arthritis Research UK is an amazing organization and I’m happy to be helping them out this week by spreading the word. The late great Laura of Still’s Life was a huge supporter of theirs and I’ve been working with them to try to pick up a bit where she left off, even if it isn’t anything huge.
All this week, I’ll be posting information in general about arthritic diseases (like I don’t normally anyway haha). You can feel free to ask how to get more involved, or contact many organizations directly. A great example is World Arthritis Day, coming up this Saturday, October 12th. You can visit their site to learn more about their activities.
If you’d like to make a pledge, feel free to snag the pictures above and post “My joint effort pledge is…” with what you’re planning on doing. It could be something as simple as waking up despite your arthritic/rheumatic/autoimmune disease, or as involved as volunteering with an organization. More info can be found at the Arthritis Research UK site for National Arthritis Week or by asking questions of me and others participating.

Watch for some more posts this week (GASP) and upcoming information. If you tweet or use hashtags elsewhere, the following are the hashtags for this week: #pledgend #nationalarthritisweek and #jointeffortpledge

July is Juvenile Arthritis Awareness Month!

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I have had a few people ask me about what people and organizations to follow in order to help share their awareness posts so without further ado please check out these wonderful people!

Thanks to everyone who pointed me towards these resources, and all of you who continue to fight for kids with types of autoimmune arthritis. If you have any to add, please do so in the comments!

Maud Lewis: Artist and Juvenile Arthritis Chick

Posted on by Grayson

If you haven’t heard of Maud Lewis, you’re not alone. I’ve had juvenile arthritis for 20 years and not once heard the name until I picked up a book (that I thought would be very different by the way) on how the arts help people handle their illnesses called When Walls Become Doorways: Creativity and the transforming illness by Tobi Zausner.

Look at her hands 🙁

Maud was born in Nova Scotia and lived within a short distance of her childhood home all of her life. No one really knows exactly when the onset of her disease was, but it had to have occurred sometime between age 4 and 10 just based on photographs of her as a child. Due to bullying about her deformities caused by JIA, she stopped going to school and began to help her mother with illustrations for her greeting card business. Unfortunately, the bullying and prejudice didn’t stop then – her deformities continued to worsen her entire life and she was constantly teased. She eventually married and continued to sell greeting cards. Eventually her JIA-related issues got so bad she had to stop leaving the house, but she always kept painting.

The book points out something that I think needs clarification. One paragraph on her issues dealing with other people ends with:

“When a child isolates herself, as Maud Lewis did, it may not indicate that she wants to be alone but that she needs to be alone because social interactions are too painful” (212).

I certainly agree having lived much of my life like this, but the way this is phrased makes me feel like the blame is somehow on Maud. I dunno, maybe I just read into things oddly, but it does. I want to just say that if you are being bullied or abused, the blame is ALWAYS on the person abusing and bullying and not ever on the victim.

That being said, come check out some of her art!

 

 

I can’t even fathom how painful it must have been to continue making art with the deformities Maud had in her hands, but she kept going. I wish I had known about her a long long time ago.

An update on my medications, or why I’m breaking up with my primary care doc

Posted on by Grayson

I haven’t done my Enbrel shot for like a month and I hate that.

Oh come on now, it’s not like this was my plan.

Earlier in the year, I developed a mucocele just to the right of the middle of my palate. I was nervous and thought I should see the dentist but clearly did not. At the beginning of May, the mucocele was still there and I developed a cyst above my upper right canine along the gum line but also so big it was up next to my nose. When it didn’t go away after a week-ish and actually was beginning to swell to the point that it was impeding my work, talking, and drinking alcohol at trivia, I decided to make an appointment with my primary care doctor. I had held enbrel already hoping for this to go away and I probably should’ve gone to the dentist in the first place, but I never thought I’d experience what I have in the last month.

He feels my face for differences between the right and left side and apparently feels nothing. He sits back and WHILE LAUGHING says “I think it’s just a pimple.” I then go into explaining that I’m 25 and I’ve had my share of pimples but this isn’t a pimple. I explain that it is affecting my job, how moving those facial muscles at all is incredibly painful. I invite him to mash my face again. He goes to town, mashing incredibly hard and even my left side is in pain and by the time he’s done he says, “Well, it clearly doesn’t hurt that bad because you’re not reacting.”

Okay, by this point I’m pretty pissed and I figure he’s already laughed at me so all bets are off the table really but I’ll still be civil. My laughing along with the comment, “Well, you’re talking to a chronic pain patient who pretty regularly sees 8s and 9s on the pain scale so that doesn’t hold as much weight as you think it does,” is met with no response. I would’ve offered to have him look in my mouth but it’s pretty obvious he thinks I am an idiot. He moves on, reassures me that it is a pimple and I’ll feel better when it comes to a head, tells me to take my enbrel, and gives me a week-long script for an antibiotic – which he is only giving because I protested because he warns me AGAINST taking since I had C-diff last year.

I walk out pissed beyond belief that I can’t even fathom what has just happened. He’s always been a bit off and seemed to dismiss a lot of what I have gone through or am going through when he sees me. While I had C-diff, he gave me ten oxycodone pills because I basically broke down in his office since I had to hold enbrel and my normal meds were not going well because of the infection – and that’s after he prescribed me something I was allergic to at first, necessitating me driving all the way back over town to pick up the script.

I make it to the car and it takes all my resolve to open the door and get in the car instead of going back in and going off on him. I sit, unable to bring myself to start the car, and just sob uncontrollably. I don’t even know what to do. I drive home, continuing to sob, and manage to stop enough to get into the apartment before going off again.

One of the worst things that happens with these diseases is when you aren’t believed – that goes double for family members and doctors. My primary care doctor thinks I’m a hypochondriac, a young girl who knows nothing about her own body or medicine. I would’ve expected something like that out of someone much older than the 30- or 40-something man that barely sees me.

I hold my enbrel, despite the incredible amounts of pain I stumble upon in the almost two weeks until I see a medical professional again – but this time it is my scheduled visit with my rheumy’s NP who is the sweetest, most caring person I’ve ever met. I know that, whatever I have going on with me, she’ll know what to do.

My appointments with her are always pleasant, no matter how much I hurt, and I always look forward to them. We sit there, like a couple of River Song clones with our big fabulous hair, and discuss my wedding plans, seeing Wicked, and how I think I’m doing right now compared to last year when I started enbrel. I talk about running and about my fitness regimen that I keep up myself now without PT. She’s so happy. I fully intend on mentioning what has gone on, but I wanted so much to have an appointment with her that wasn’t full of problems.

“So, no more infections?”

Sigh.

I go into the whole thing – what makes this worse and how nothing seems to make it better, and that I’ve been off antibiotics for almost a week. She finally looks inside my mouth to find my lovely sac o’ pus. We discuss my financial state and how without the enbrel I feel terrible – my right shoulder has just started going off, a great sign of a flare for me that only gets worse. I am to update her in a week and if this thing isn’t gone go to a dentist asap. She goes into some more detail on how bad abscesses can be and what they will do to my ability to take DMARDs for, oh, a few months if left alone to fester – or worse. Did you know abscesses can kill??? She leaves me with a hug and reassurance that I did the right thing, along with the name of the primary care doc who she and her husband both see so I can make the switch.

“Hold the enbrel until all signs of infection are gone” are not words a girl in a flare – Kathy noticed the puffy joints – want to hear.

All week I am in agony and freaking out. The right side of my face is killing me with itching, and my arms are trying to finish the job. I have essentially had my arms more or less frozen at my sides, in typing mode. I have to wear my regular bra because even thinking about the sports bras hurts to high heaven. I have a terrible time getting dressed and doing my job. When it isn’t busy, I cry while reading pretending that book is the reason. This pain won’t stop and I can’t take it anymore.

June 6th arrives with only minimal lessening in this sac that I can’t seem to stop playing with. I’m scared to death I’m going to pop it and melt or something. I make a call in the morning to the dentist office I love but haven’t been to in almost two years due to low funds. I set up an appointment for the 7th.

Judgment day arrived today. I’ve known from the beginning that this was an abscess and that I would either be missing a tooth or get a root canal. I knew it and I’ve known that was what I should do all along, but of course I didn’t. I’m there 5 minutes and the x-ray confirms what I’ve thought for a month, but didn’t follow up on because my GP made me feel like shit about myself.

Turns out, my dentists had a cancellation right after my appointment and could do the root canal right away and since I now have dental insurance I owe less than $500. In an hour and a half, my root canal was done and the most painful part was numbing up my gums. I feel fine, mouth wise now. The rest of the infection should be cleared up within a week – if it’s not I get to call for more antibiotics. So best case scenario I’ll be away from enbrel 6 weeks total – worst 7 or 8.

I plan on writing a note to my current GP about the situation and my distaste for his wanton disregard for my safety, knowledge, and experience. I just don’t know what to say exactly – “Thanks fucker, you were wrong and go fuck yourself!” seems a bit much.

This all just goes to show that we know our bodies much more than others do. When we know something is wrong, we’re generally right. Don’t silence that little voice in the back of your head, because it could end up saving your life.