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."

Thursday, October 10, 2013

Want to get more involved with National Arthritis Week?

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.

Monday, October 7, 2013

10 things you may not know about my conditions

1. The conditions I live with are called:

Systemic onset juvenile idiopathic arthritis (Still's disease), fibromyalgia, asthma, Sjogren's syndrome, psoriasis, gluten intolerance, scoliosis

2. I was diagnosed aged:

Still's - 6, but sick at 5
Fibro - 24, but had it most of my life
Asthma - 5
Sjogren's - 24, but had it most of my life
Psoriasis - 20, but had it most of my life
Gluten intolerance - 23
Scoliosis - 24, caused by Still's

3. How my conditions most affect my day-to-day life:

I have spurts of energy throughout the day, instead of getting tired at the end or being tired at the beginning of the day. I have to be careful what I eat, because several things can cause flare ups on their own (i.e., gluten) and cause additional issues. I have to wear sneakers/tennis shoes every day instead of cute shoes a 20-something should be wearing.

4. A new hobby / interest I’ve taken up since my diagnosis:

Basically everything right? I've been into gaming again a little bit, but mostly have been focusing on behind-the-scenes awareness raising. I recently met with my Representative about HR 1827 for example. And of course, there is always wedding planning :)

5. What living with my condition has taught me:

Theoretically you can do everything you put your mind to, but in reality that's not true - even if it is something you really want to do. Sometimes we just can't do certain things. And that's fine. That's why we have others in our lives - to accomplish together what we cannot do alone.

6. My advice for other people living with my condition:

Never stop fighting. A great person (Laura) once told me that "life with Still's is still life." I miss her more every single day and it still floors me that Still's took her from us.

7. A gadget I couldn’t live without:

My smartphone. So much easier than pulling out the laptop - plus I have games!

8. What gets me through a tough day:

My fiance. Between his humor and his kind heart, I know that I'll be okay no matter what comes our way.

9. How my friends and family help me:

See above! I have many friends who didn't realize I was ever sick, and now that I'm vocal about my situation they're being incredibly supportive. It's very heart-warming.

10. This National Arthritis Week I’d like to say thank you to:

Laura. Even though you're gone, you taught me so much about life. I know more about how to fight from you than I ever would have alone - and now I know so many others whose lives you've also touched. Fighting together against this disease makes it easier, and you were the first one to show me that. <3 nbsp="" p="">

Sunday, October 6, 2013

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

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

Sunday, July 7, 2013

July is Juvenile Arthritis Awareness Month!

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!

Monday, June 10, 2013

Maud Lewis: Artist and Juvenile Arthritis Chick

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.

Friday, June 7, 2013

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

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?"


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.

Wednesday, June 5, 2013

Book Review: Stop Being Your Symptoms and Start Being Yourself

So I picked up a self-help book on how to stop being so sick. I never do that, but I figured what the hell. Plus this wasn't one of those "the cures to arthritis the pharmaceutical companies don't want you to know" types, but one about how to focus less on your illness and actually *GASP* live life. I'm not sure what I expected. This book didn't really hold that much advice for me, but maybe that is because I already do so many of these things on my own. I also found myself wanting to punch these people in the baby maker.

The book begins by talking about things wrong in medicine today like distrust of doctors and malpractice suits being so commonplace and the like. I think this places an awful lot of blame on the patients though, saying that they need to be more trusting and patient. While that can be true, a lot of us would never have been correctly diagnosed with our illnesses had we all been ideal patients following our white coat wearing knights.

One of the things that is easiest for those of us with chronic illnesses to do is to overly focus on pains in certain spots. Apparently that makes them worse according to these docs, but I don't think that's necessarily true. But maybe I'm not being trusting enough again. Nonetheless, one of the coping mechanisms they suggest is to be aware of the sensations in your body - every single one. Recognize them then move on to the next hot spot. By really focusing on these spots, you may be able to realize that issues you think are related to your illness are things your body just goes through. My question here is how the fuck you're supposed to do this when you're already sick?

To their credit, Barsky and Deans do suggest learning relaxation meditations and how to recognize thoughts and feelings and let them go. These are both definitely habits that we all should develop, no matter our religious preferences. It is very calming to be able to recognize negative thoughts and acknowledge them but not internalize and take them on. You can then really work on creating positive thoughts to combat the negative, which is very hard but eventually works for many people. I actually find myself kind of attractive now, but that's after a few years working at this so who knows what you might experience.

They think that patients allow their illnesses to run their lives - and we're talking about illnesses like MS and RA that they specifically mention in this book. I'm sorry, but believing that we choose to miss events and opt out of activities because we're overwhelmed mentally by our bodies instead of dealing with the fucking physical issues associated with these diseases - that can be fatal, thanks - I just can't even really respond to this. Depression can and does accompany chronic illnesses for many, but that doesn't mean that I missed my niece's blessing because of depression - I miss it because of a double fucking flare of both my Still's and my fibro. There's not really any choice for me there, and if there had been I would've been there.

They suggest making more plans and doing more things you normally would have been doing and that will somehow cheer you up. Excuse the balls out of me, but it doesn't just happen like that. You can't cheer up a fibro patient out of a flare. Laughing and attempting to go to lunch with friends doesn't make it happen. Going out and buying a new shade of lipstick does not, like some activists apparently feel, make you feel better. You get home exhausted and pay for it when you're already not doing well.

I will leave you with a quote that I think illustrates why I made a mistake in picking up this book, and why maybe I wouldn't suggest it to anyone:

Pain that we believe can be assuaged, that we think is unnecessary, and that we feel we shouldn't have to bear hurts more than pain we know is unavoidable. "Curable pain is unbearable pain," as Ivan Illich has pointed out. Pain and discomfort are most excruciating just when the relief we have been expecting has failed to materialize. The pain of your fractured ankle becomes agonizing after you've swallowed a pain pill but it hasn't take effect yet. Something similar happens with chronic illness: if you believe your infirmity is treatable and that the symptoms are therefore avoidable and unnecessary, they seem more burdensome and more severe. Curable pain seems to be unbearable pain. Once you believe your arthritic hands shouldn't hurt as much as they do - that relief would be forthcoming if only you got the latest breakthrough treatment or found just the right specialist - then the aching and stiffness become intolerable. (209)

I don't know about you, but my pain is real and it is just. It isn't dependent on meds - trust me, I paid attention while reading this book and shortly after. My pain is because my body fucking sucks, not because my brain makes it worse.

There are so many times I want to slap authors. Today is no different.

Saturday, June 1, 2013

The 729.1 on fibromyalgia and my link to Morgan Freeman

Morgan Freeman. Just saying the man's name elicits his amazing voice. I could listen to him talk for probably days without getting tired.

Well, no, I'd be terribly tired and would've fallen asleep on him but there is a huge likelihood he would fall asleep too and it's not because he's old.

Morgan Freeman, one of the most celebrated and iconic celebrities of our time, lives with fibromyalgia:

Every so often he grabs his left shoulder and winces. It hurts when he walks, when he sits still, when he rises from his couch, and when he missteps in a damp meadow. More than hurts. It seems a kind of agony, though he never mentions it. There are times when he cannot help but show this, the fallout from a car accident four years ago, in which the car he was driving flipped and rolled, leaving Freeman and a friend to be pulled from the car using the Jaws of Life. Despite surgery to repair nerve damage, he was stuck with a useless left hand. It is stiffly gripped by a compression glove most of the time to ensure that blood doesn't pool there. It is a clamp, his pain, an icy shot up a relatively useless limb. He doesn't like to show it, but there are times when he cannot help but lose himself to a world-ending grimace. It's such a large gesture, so outside the general demeanor of the man, that it feels as if he's acting. 
"It's the fibromyalgia," he says when asked. "Up and down the arm. That's where it gets so bad. Excruciating." 
This means Morgan Freeman can't pilot jets the way he used to, a hobby he took up at sixty-five. He can no longer sail as well. There was a time when he would sail by himself to the Caribbean and hide out for two, three weeks at a time. "It was complete isolation," he says. "It was the best way for me to find quiet, how I found time to read." No more. He can't trust himself on one arm. He can't drive, not a stick anyway, not the way he used to — which is to say fast, wide open, dedicated to what the car can do. And he can't ride horses as much, though once he rode every day. 
He never mentions any of it as a loss, though how could it be anything else? He never hints around about the unfairness of it. "There is a point to changes like these. I have to move on to other things, to other conceptions of myself. I play golf. I still work. And I can be pretty happy just walking the land." 
Wait. How can he play golf with a clipped wing like that? How can you swing a club when you can't lift one of your arms? 
"I play one-handed," he tells me. "I swing with my right arm." 
How does that work out for you? 
"See for yourself," he says. "I'm playing at 3:00 today."

729.1 is the diagnostic code in medicine for myalgia and mytositis. That means that Morgan Freeman and I share this terrible number on our medical charts, on medications, and on any referrals we may have to other specialists.

Many people with chronic illnesses like me end up with fibro. However, it can also start after a traumatic event or accident as it did for Morgan. His case is interesting not only because of his fame, but because fibro is an illness that affect women much more than men.

For those lucky enough to not be involved with fibro, I'll help ya out here. It gives fatigue, memory, mood and sleep issues just like most autoimmune disorders (the jury is still out on whether or not fibro is autoimmune). Fibro is believed to be caused by a malfunction in how the brain reads pain, which allows nerves to become hypersensitive causing the extra pain. In reality though, the jury is still out on that too.

Fibro isn't really one of those drugs that has a specific test, even though it kind of does. Confused yet? Let me help out here. There was recently some sort of blood test developed but it really isn't that helpful if you're already ill due to the fact that it measures cytokenes. The long standing test is a trigger point test, where parts of the body are pushed on to see if the pressure creates extra pain or if those areas are, you guessed it, tender.

One of the good things about fibro is that there are medications, such as Lyrica and gabapentin, that work to help control the excessive nerve pain. The bad news is these make you drowsy-ish so already having fatigue issues makes it a fun adventure! For me personally, Lyrica has a more waking effect but that's not how it is for everyone. Another good thing? Having fibro doesn't make it more likely you get x disease and doesn't really have complications (that we know of) other than the usual things that happen when you're in terrible pain and can't live your life the same way anymore like literally becoming dumber.

While fibro is generally recognized as a disease, there are some (asshole) doctors who don't believe it exists and will maintain that your pain is all in your head. If you get one of these docs, RUN FOR THE HILLS!!! Their ignorance of this condition will affect you and add mental stress to a body already unable to physically handle emotions well. It can actually hurt you physically if you continue to let people treat you like that, so either stand up for yourself or GTFO.

I love that for Morgan it is just a fact for him. In the interview cited above, clearly he has a loss of abilities and has had to change how he does things because of this. But he isn't bitter about it - he handles it with the same grace and composure as he handles everything.

I grew up watching Morgan in reruns of The Electric Company and in movies. I've always like him - his attitude and his demeanor. I do have to say, as I read the article about his pain I cried. About the same time that the article came out last year, I figured out I had fibro but it wasn't diagnosed until the following September. I'm used to actors wanting to keep their health private, meaning that some of the best spokespeople about diseases like RA and Lupus turn into people who don't speak out on the issues we all face. While Morgan isn't jumping around and trying to do Lyrica commercials, he certainly doesn't deny what he faces with this disease. And that makes him a damn good role model in my eyes.

Friday, May 31, 2013

Book Review: Hot Cripple by Hogan Gorman

Property of Hogan Gorman, found via

I had to pick up this book. Something just called to me - I'm not sure if it is the hottie on crutches or the bit about the health care system. But I am glad I read this book.

Hogan used to be a model traveling around the world and then began to waitress in New York City while auditioning for acting gigs. One day, she's walking to work with her favorite chai in hand and is hit by a car. With how bad off the car was, it was clear that Hogan should have died. Instead, she lived and began a fight lasting entirely too long navigating the medical world with no insurance and trying to get help from several organizations.

I'm not going to lie - growing up being sick I immediately began judging this girl at the beginning of the book. She is a fucking model right? She's gorgeous and has had the opportunity to live a life that I wish I could have. She was always one of the beautiful girls and knew it. She needed a wake up call, but probably not one calling for what she's gone through. This book is about really coming to terms with illness when you're not used to it and learning to fight and learning that it is okay to accept help - I definitely have issues with the last one.

At the end of the book, I felt like I could identify with Hogan more than I thought I ever would be able to. She clung to her fashion life when she was sick because it was what was left of what she assumed was the real her. I'm just finally being okay delving into fashion, accepting that my body the way it is now is really me finally. I mean, it only took 20 years right? Nonetheless, accepting what you are or have gone through is really one of the hardest things that anyone can do let alone anyone with new and long lasting limitations.

I think it is a good book to read, but probably better for those of you who lived an actual life before falling ill. It's probably a million times easier to connect with the author, and that is kind of critical for these memoir types of books. Plus, I take issue with how she doesn't necessarily think about invisible illnesses in the book - i.e., getting pissed with people and automatically judging them as different because they're normal.

In keeping with how I seem to write every book review, enjoy some quotes!

I have been issued a food stamp card with a rather unattractive picture of myself on it. I will now be allotted 141 dollars a month for food, which breaks down to about four dollars and seventy-something cents a day. That's what we poor folk are allowed to eat a day... four dollars and seventy-something cents' worth of food... The card is in the middle of my kitchen table, just begging to be used, but I don't have the fortitude to accept it quite yet. I find myself picking it up and staring at it in disbelief several times over the past day. I am  scared of this little piece of plastic, scared to walk into a grocery store and use it, scared of what it says about me. If I use this card in public, I am branding myself a failure. There is a stigma attached to people on public assistance in this country - that they are lazy, that they should get a job, that they have a welfare mentality - and it has clearly crept into my subconscious and is wreaking havoc on what little ego I have left. (120-1)

I have almost made it past the Mohawks and combat boots when a guy with purple hair says, "Man, that is so cool... it's not that often that you see a hot cripple." I can't believe he just called me a cripple. You can't do that. That is so un-PC that it's almost to XYZ. It's wrong and bigoted and prejudiced. Only I can call myself a cripple, and I do it in a self-depreciating way, but you can't. I don't see you limping on a cane or in braces. You are not part of the group. If you were injured or disabled, you would be allowed to call me a cripple, and I would say, "What's up, gimp?" But you're not, so, stranger, step softly when you walk, and don't fucking talk. I want to go all Rosa Parks on his wannabe punk-rock ass and blurt out this monologue in my head... (154)

I feel like an alien in my own country. Every time I turn a corner I seem to hit another brick wall. My body feels like a prison. The pain is still unrelenting. Maybe they're right; maybe I'm not getting better, but I try. I never miss a doctor's appointment; I follow their instructions and take my prescriptions; I go to physical therapy (or as I like to call it, gimp gym) as if it were a religion; I eat a healthy vegan diet on a food stamp budget of four dollars and seventy cents a day; I do children's memory games on my computer to try to regain my short-term memory and strengthen my brain. I think it might be better to be an animal; if an animal is sick or injured and not getting "any better" they are put down, so they don't have to suffer. We have a Humane  Society for our four-legged friends, yet I am struggling to see any sense of humanity in the society I am living in. (159)

I am sobbing like I have never sobbed before, and I can't stop. I have reached my breaking point, the end of my tether. Whatever you want to call it, I am there. I can't take it anymore: the lack of humanity, constant pain, doctors who can't fix me, memory loss, food stamps, disability, Medicaid, lawyers, poverty - I'm done. I don't want this life. I find myself turning almost without thought and walking toward the Brooklyn Bridge - the bridge I used to run across when I was healthy - and with each sobbing step I take I am more determined and convinced that this is the only way out. I've had a few friends end their own lives, and I didn't understand how things could get so bad that someone would want to kill themselves. But now I understand. When you wake up and it's dark and you know that there is no hope that today the clouds will drift away because you've been hanging on every day, for days, months, maybe years, and the sun never comes. When you've been down so long that a smile feels wrong. You're not fun anymore; all you talk about is your misery and your pain, and people listen (sometimes), but you watch their eyes gloss over in a distant stare. They can't help you; nobody can, not even yourself. You dress each day in something you used to love, praying that it will magically transport you back to a time when you were happy, but it never does. You've stopped dreaming, you've stopped hoping, and you've stopped living. So this final act will merely be a formality. Finally, it will stop. Finally, I will have peace. Finally, there will be relief. I understand now, my friends, and I am coming to meet you on the other side of this cesspool that's called life. (190)

Sunday, May 26, 2013

30 Things About My Invisible Illness You May Not Know, 2013 edition

I've done this survey a few times but every time I do it things change. Since I haven't done it for a while, I thought I'd give it a go. Enjoy!

1. The illness I live with is: Still's Disease (juvenile onset juvenile idiopathic arthritis), fibromyalgia, hypermobility, asthma, Sjogren's Syndrome, psoriasis, gluten intolerance, scoliosis, and bouts of uveitis (I had to look this up on the blog because I can't even remember it all now Jesus)

2. I was diagnosed with it in the year: Still's - 1994; fibro - 2012; asthma - 1993?; psoriasis - 2010; gluten intolerance - 2011; scoliosis - 2012. The others have been mentioned multiple times so I'm not sure? That's bad haha.

3. But I had symptoms since:  Still's onset was in 1993, but the others all follow this so in reality I have no clue.

4. The biggest adjustment I’ve had to make is: slowing down. Since I can remember I've always done a lot - I did plays in high school and didn't get anything less than a 4.0 until my junior year. I was one of the valedictorians. At one point in college, I was taking 4 classes and working 3 jobs. Most of my working life I've had 2 jobs, but I can't do that anymore. Resting is terrible for me.

5. Most people assume: I'm fat because I eat twinkies all day and sit on my ass. They don't know about the 2 years on steroids and the terrible hungers. They don't know that I work myself to the bone and still barely lose weight no matter what I do. And they almost always assume when I use my parking placard that I'm using my grandma's illegally. I love the stares I get, I really really do.

6. The hardest part about mornings are: Actually waking up. My night time meds make me incredibly woozy so it is really hard to physically wake up to my alarm clock.

7. My favorite medical TV show is: House, always House.

8. A gadget I couldn't live without is: my laptop/phone/iPod touch. They are my connections to the outside world so that even when I feel the worst I can still take part in being a part of the world. Plus it's where most of my friends are :)

9. The hardest part about nights are: both getting to sleep and dealing with the Still's. It is most active at night, so that is when I get my fevers, chills, and rashes the worst. After about 5 pm I look a mess no matter what I do.

10. Each day I take approximately 14 pills and I do a shot once a week.

11. Regarding alternative treatments I: think some of them can work but I trust those that have been scientifically proven because most of the ones that do work only do so for specific illnesses and have little impact on autoimmune arthritis. I do believe massage and changes in diet can help but by no means can these things cure us.

12. If I had to choose between an invisible illness or visible I would choose: I'm down with what I got. There are plenty of days where these things aren't invisible - people just don't know how to look.

13. Regarding working and career: I miss having a job that made me feel more important and helpful than my current one - don't get me wrong I know I help so many people captioning calls for the deaf and hard of hearing, but I don't usually get admiration save from my supervisor. My volunteering efforts are my real jobs.

14. People would be surprised to know: Just how much pain I am in every single day and the fact that I'm not on narcotics to deal with it would probably blow their minds. Just right now I'm hitting a 4.5 on my pain scale, but I feel like to others this could be 7 or 8 territory.

15. The hardest thing to accept about my new reality has been: losing my independence. It isn't like I've lost that much, but I'm very stubborn and I will do things myself no matter how much it hurts... or at least that's how I used to be. The fiance had to help me walk to my bed last night - 20 feet I think. He often has to help me take off certain clothes like sports bras because of how my shoulders hurt. I know he loves me and would do whatever I asked, but I'd rather think of him taking off my clothes in a funner way than it happens.

16. Something I never thought I could do with my illness that I did was: I FUCKING RAN. I haven't run a lot lately but oh my god. I used to run a lot in high school and I lost it to this disease. The day that I decided to run again earlier this year I was almost in tears at the gym over how proud I was. Every time I run and push myself a little further, from running half a mile to three quarters say, I can't even describe the feeling I get.

17. The commercials about my illness: well, actually, there aren't any commercials about Still's because like no one knows it fucking exists except for those of us affected by it and other volunteers/doctors/etc. I will say arthritis commercial piss me the fuck off though. "Hooray, I can run with my puppy because of my shots!" is not the norm. And a certain golfer certainly has got moon face from steroids along with his Enbrel...

18. Something I really miss doing since I was diagnosed is: I've been sick since I was 5 so... um... I guess everything? Everything I've done really has been post diagnosis and with a good amount of pain and fatigue involved so it is hard to answer this question.

19. It was really hard to have to give up: graduate school and being spontaneous definitely. I'd love to wake up on a Saturday and look at the fiance and say "Hey, let's go hiking today" but I really can't. Even when we are able to go, I have to carry certain things with me that make it a pain in the ass. Grrr.

20. A new hobby I have taken up since my diagnosis is: Again, being sick since I was 5, this would include just about everything but singing, dancing, and Disney movies. But clearly I'm enjoying blogging.

21. If I could have one day of feeling normal again I would: choose to save that day for my wedding day. Please please please I need this to happen.

22. My illness has taught me: virtually everything I know about perseverance and fighting. I often wonder what I would be like without this illness and how lame I would be haha.

23. Want to know a secret? One thing people say that gets under my skin is: when people fucking tell me to take a Tylenol or do xyz or take these herbs or just stop taking meds or when my soon-to-be-ex-primary-doctor treats an issue I'm dealing with with less importance because he thinks I'm a hypochondriac or assumes that something doesn't hurt when I'm used to 8s and 9s on the pain scale and might not realize how that changes things. Fucker.

24. But I love it when people: do something to show me they care. Some of my favorite experiences have been when someone recognizes I'm having a rough day and does something to help it get better, whether it means offering physical help or emotional care.

25. My favorite motto, scripture, quote that gets me through tough times is: "Living with Still's can still be life." - Laura Jayne Kenyon

26. When someone is diagnosed I’d like to tell them: learn every single thing you can about your illness. Discuss an elimination diet to see if foods make it worse. Connect with others to form not only a support system but also a group that can analyze new treatments for each other and such.

27. Something that has surprised me about living with an illness is: that no matter how much I hate these fucking diseases I wouldn't be any other way. All the kids I know with this need someone who can help their parents understand and if I can help just one parent help make their child's life better then everything I have been through is worth it.

28. The nicest thing someone did for me when I wasn’t feeling well was: I can't even pick out one thing. I can say for sure that no one helps me like my fiance does, from making food special for me that he knows I like so that I eat even when I have no appetite due to this disease to trying to carry me to the bathroom even though maybe I am a bit too heavy and he's not quite strong enough for him to do that haha.

29. I’m involved with Invisible Illness Week because: I am tired of being judged, but more than that I don't want the kids I know to be judged and to feel the fire unbelievers can have in their stares or their words. It has to change.

30. The fact that you read this list makes me feel: like you are awesome!

Friday, May 24, 2013

On the DL: My two days listening to the Dalai Lama

Many of you may know that my bachelors degree is in religious studies. I've always loved different religions but never really agreed with one myself until I took a course my sophomore year of college on Asian religions, which is the course that made me a religion major instead of a chemistry or math major. I had been doing meditation and yoga since I was 12 (thanks Seventeen magazine!) to help with my pain but I only knew vague bits of the religions that made these practices common.

Buddhism is a wonderful religion that, much like Christianity and Islam, has different sects and different focuses depending on where you are and who you learn from. The professor I had for this class was one of my favorites and the next semester I ended up taking two or three classes in a row with her. She herself practiced Buddhism and Christianity together - something easy to do as most schools of Buddhism don't really address at all the notion of gods. It's not that Buddhism is atheistic, but instead it is non-theistic. Many call Buddhism more of a philosophy than a religion, and it definitely can be both.

Buddhism rests upon the Four Noble Truths:

  1. Life is suffering, plain and simple
  2. The origin of that suffering is attachment - cravings, wants, material goods, etc
  3. We can end that suffering through attaining Nirvana, or freedom from the cycle of rebirth (samsara)
  4. We end the suffering and reach Nirvana through the middle path, a balance between being over indulgent and an ascetic. This path is outlined in what is called the Eight-fold Path (right understanding, right thought, right speech, right action, right livelihood, right effort, right mindfulness, and right concentration).
Many people I know with chronic illnesses find Buddhism extremely attractive, given that the first notion of this religion is about suffering and how it is so prevalent in our lives. We can't escape the suffering, and so there is a huge attraction to the notion that if we do work hard enough we can lessen and eventually end that suffering.

During my studies on Buddhism, I sort of fell in love with the Dalai Lama (don't know who he is? Check out this link). He talks about how compassion and love are at the center of all religion and how we all just want to be happy and not suffer. This isn't from a primarily religious perspective that he says these things either - what he wants is for each of us to treat each other with compassion and love and to make the world a better place. For him, Buddhism is the tool he uses to promote that but he doesn't downgrade other religions and believes that they can be just as beneficial - that it merely depends on what religion helps you to bring compassion into the world and feel fulfilled. He believes in humor and the ability of laughter to heal and add to our lives. Needless to say the man laughs a lot and his laugh is more infectious than a baby's laugh. I also feel the need to add that Michael Palin met him once on one of his travel shows he did after Monty Python, only to have His Holiness be more excited to meet Michael than Michael was to meet him! His Holiness said something along the lines of how a huge part of why he had a satellite dish was not to keep up on the news but so he could watch Monty Python reruns on BBC. He has got to be the coolest person ever.

So a few months ago when I learned that His Holiness would be in the city I live for two days giving speeches, I freaked out. When I was done half crying and jumping up and down like a four-year-old, I got tickets for both days.

The first day His Holiness spoke on a poem written by a fellow Buddhist after an intense meditation session called In Praise of Dependent Origination by Je Tsongkhapa. He was only supposed to talk for two hours, but ended up talked for almost three and barely at the end touched on this poem. I definitely didn't mind though! He spoke so much of the time about Buddhism as a religion, but also as a philosophy and what it means to have compassion for others. I honestly don't have many notes to share with you from that day because I was just so in awe of how lucky I was to see him.

The next day, he spoke as a part of a panel on global health and sustainable well-being as a part of the Global Health Institute from the University of Wisconsin-Madison. There were economists, people with the WHO, psychologists, etc. I took a ton of notes there, both because I think the shock had worn off and because I felt like I wanted to share some of the information from this panel with you all. I'll indicate the person's name and then in later spots their initials from whom the information came. The Dalai Lama will be DL for example.

  • Richard Davidson: Stress decreases growth of new brain cells and inhibits connections between cells
  • RD: There was a 2012 study on 2500 health plan members over the span of one year. For each increase in well-being an individual was less likely to go to the hospital due to an illness and had overall better health. Well-being was measured as emotional - self-respect, etc. These people spent on average $1185 a year on healthcare as opposed to those who did not have these improvements, who spent $5172 per year on average - two and a half times the annual expenditure on healthcare.
  • Don Berwick: Despite what our senses would tell us, the best health is in places spending less money on health care.
  • DB: Often we believe that more is better - with healthcare that is often false. We focus on more technology which is so costly and does not help as many as focusing on other areas might. We falsely believe that the way to get healthy and stay healthy is through the health care system. Environment and our own actions are 400% more of an influence on our own health than the health care system. We almost always separate mental health from physical health also and we just cannot do that - our minds are so integral to how our bodies do that these two are just too intertwined to really separate.
  • Ilona Kickbusch: People create their own health and the health of others in their community through support.
  • IK: We at the WHO are seeing an epidemic of non-communicable diseases (i.e., chronic illnesses).
  • IK: In order to move forward and improve we have to focus on the past and engage in reverse innovation - looking to countries and communities with more communal views on health.
  • The highest obesity rates are in the United States for those in poverty. However, the WHO is seeing obesity rapidly rising in developing countries due to the lower costs, longer period of food preservation, etc, of junk foods.
  • Richard Layard: The British government's new focus officially is the well-being of people in the nation. Most departments have a well-being section focused on the employees and how to help those concerned with that field.
  • RL: Income only explains 20% of the variation on who is happy and who is miserable according to studies. Instead the most important factors include family and community relationships, and mental and physical health.
  • RL: Most chronically ill people develop mental issues caused by their illnesses.
  • RL: According the the workplace wellness alliance, an organization that works with several big and successful companies, up to 40% of disability cases and absences from work are more mental than physical.
  • RL: Only one-third of those with mental illnesses are really getting treatment, and some of that is sub-par.
  • DL: When asked why he thinks so many people assume mental illness isn't something to be focused on, he said that he believes a lot of it has to do with the societal religious beliefs. The Judeo-Christian tradition focuses on faith not on discussion or action. If you have a problem, you pray and you ask for help and guidance versus making a strong decision based on what you think and what you talk about. In Eastern religions there is a huge focus on you as a person from your overall well-being to actions, etc, instead of just on faith. It is more secular, focused on tolerance and respect for others and yet containing humanistic morals as well. Here in the US secular is almost a dirty word for people see it as removing their morals. Since every person sees his or her religion differently, the best way to combat this would be to focus on really cultivating ethical and moral humanism instead of relying specifically on religion for guidance. If for you religion guides your personal life, that is fine and no one is saying that is wrong but we all need a common ground to stand on not founded on religion because of how it can cause competition, hypocrisy, and hate for some.
For me, attending these two days and having time to think on each presentation was a life changing experience. I began, for example, to be annoyed with children crying during the first presentation. It was already so hard to hear His Holiness due to the noise issues with the venue's speakers. And suddenly what he was saying about being compassionate got through to me. Instead of being annoyed with these children, I was empathetic towards them - they were bored, tired, warm, hungry, and just wanted to play. Another example is at work there was someone audibly crying last week and having a tough day in the row of cubes ahead of me. I was on a call and couldn't go check on this person, but I wanted to so badly. I practiced a compassion meditation, breathing in the negative feelings he or she was dealing with and breathing out good thoughts. I don't know who this person was or why they were having a bad day or if what I did made any difference. But it made me feel like I could do something to help and it calmed the nerves I had for that person. Even dealing with situations I will never be able to change, these two days have helped. Instead of wanting to physically assault idiots I know for their actions, I'm trying to combat their negativity with compassion and voicing how tough it is for me to feel like I am not heard trying to draw compassion from them. It is really hard for me to tone down my anger (being Italian and Irish is dangerous!) but these two days did so much for me. I'm focusing more on the good in my life than the bad - I have my days still and yesterday was definitely one of them, but this is bringing me more and more peace the more I invest into it.

I've always flirted with Buddhism as a religion, with the tenets I wholeheartedly agree with, but could never bring myself to really act on those feelings aside from within myself. At one point, the Dalai Lama asked to see who were Buddhists and I half raised my hand until my future sister in law pushed it up higher. So much  of my lifestyle screams Buddhism and I keep not wanting to label myself. Brynne saw it and the Dalai Lama saw it too, so I guess I'm officially a Buddhist. I can't wait to explore this even more in the next decade than I have in the last.

Thanks for reading!
  • For more on Buddhism, please visit this PBS site, where I found the Eight-fold Path information because I was a little rusty on that
  • Definitely check out Toni Bernhard's website. She suffers from chronic illness and talks about how Buddhism helps her.

Thursday, May 9, 2013

May 10th: Wear Blue & Gather in Memory of Laura

Here's what you should do:

First off, you should wear blue in honor of May being Arthritis Awareness Month. Paint your nails or dye your hair or whatever you want to do with it.

Second, what are you doing at 4pm UK time? That's 11am ET in case you're confused.

On May 10th, a bunch of us who knew Laura of Still's Life are getting together on a page dedicated to continuing Laura's mission of raising awareness that her fiance's mother runs called For the Love of Laura. We're getting together for 10 minutes in memory of Laura being gone five months. If you were touched by Laura in any way, please stop by even if it isn't during that 10 minute time frame.

It seems like every day is both harder and easier to deal with the grief of losing Laura. How does that even work?

Monday, April 29, 2013

Day 29: Congratulations #HAWMC

Today I have to share three things I love about myself, things I'm great at, or just want to share.

Damnit! This is hard!

1. I like my eyes. They're gorgeous and would be on anybody. I like that I don't often have to use mascara because I have great lashes. It clumps up too much to be comfortable and aggravates my eyes anyhow. I love that I can just slap on some brown eyeliner and go and look pretty, even if it isn't as gorgeous as my full on retro makeup look.


2. I love that I can tell I've lost weight. Technically it is only a few pounds, but I know I'm building muscle at the same time. I've lost space. I catch myself in the mirror and think that I look sexy and attractive for the first time in a long time. My style sense is getting better too. I'm sure part of it is actually buying clothes that fit me better now instead of always resorting to XL baggy tees. I'm moving down to the L range and I intend to stay here for a while.


3. I'm not too shabby at being there for people. I might not always physically be there but I'm more often than not a text/tweet/phone call/email away. It may take a bit for me to notice you need me, but then I'm all like BAM! Tell me your problems!

And just to add another one, I'm not bad at taking pictures. We have a bunch of them up on our wall that either the fiance or I have taken. I love taking pictures and editing them to get cool effects. Want to see? Of course you do!

The fiance took this in 2010, Oregon coast

Summer of 2009 taken by a friend, me & my sister

A random grave in Western WI or IA

The confederate graves, Forest Home Cemetery, Madison WI

Abbott's grave, Forest Home Cemetery, Madison WI

Saturday, April 27, 2013

Day 27: A book a book! #HAWMC

I don't think it is any surprise that my book would share the title of my blog.

Oh, is this the first you've heard about the book?

I am going to be working on a book that is a collection of stories of kids and adults living with this disease in Laura's memory. We have to find ways to raise awareness and help those dealing with this disease, so what could we do better than to collect these stories to help others?

Are you interested in learning more or being a part of this project? Feel free to email me at kirsten -at- notstandingstillsdisease -dot- com.

Friday, April 26, 2013

Day 26: Pain-free pass #HAWMC

There are many days where I fret over the consequences of any actions I may take. The pain from Arthur and the house guests he's brought along has caused me to miss family things and special events not to mention the pains and emotional effects of being in pain so much. Out of every single day in my life, there is one that I need to be pain free.

I'm getting married August 16th, 2014. It is my great grandmother's birthday, though she died due to MS over a decade ago. She was strong and feisty, and I wish she would have been around as I grew older. But I digress.

I've already put 6 months of planning into this day, with 16 months to go. We have a venue, a dress, and the cakes chosen with deposits paid. We have so much to do, but we know I have a lot of time to do it in. The day before we will have to decorate and get things set up and ready to go. I don't even have any idea how I'll sleep the night before.

I just want to be painless, just for this one singular day. I want to be able to enjoy my day and my wedding without having to entertain Arthur like the drunk uncle no one wants to invite but does because he's family. I want to run around and visit with everyone, instead of sitting and having them all come to me. I want to dance like there is no tomorrow and stuff my face with cake without worrying about how I'll be able to walk the next day.

I just want, for the most special and important day in my life, to be normal. Just that one day is all I ask.

Thursday, April 25, 2013

Day 25: Enjoy some knowledge #HAWMC

Today's post is short and sweet, about something I learned from another health activist. It comes from Laura - who else?

"Life with Still's can still be life."

It is so simple but I catch myself forgetting it often. We can get so wrapped up in our hurts and our trauma/depression/anxiety and all the other issues that come along with a syndrome like this that we forget we are living life right now and that there is no pause button while we get better.

No matter your health issues, you are still alive. As much as life can suck sometimes, it truly is beautiful and we should all embrace it.

Wednesday, April 24, 2013

Day 24: Wordless Wednesday #HAWMC

Create a Pinterest board for your health focus. Pin 3 things. Share the image.

Come check out the board here.

Tuesday, April 23, 2013

Day 23: Home Lab Meters #HAWMC

Dear blood glucose test meter creators, I have a new project for you!

I hate when I have so long in between rheumy appts and I'm pretty sure I'm flaring but it takes so long to get appts sometimes. There are other times where I don't think it is bad enough to involve docs, but I'd love the ability to track my flares so when I do have appts I can say 'I had x flares' and it could help determine when meds need to be changed or altered.

In order to measure inflammation and other markers, we'd really need something akin to a blood sugar testing meter able to take blood and interpret the results. It would be perfect if the device could measure ESR (elevated sed rate), CRP (c-reactive protein), a CBC (complete blood count), albumin (plasma protein/liver function), creatinine (muscle metabolism/measure of kidney function), and ALT/SGPT (liver enzymes).

It would be great if the results could be sent to your doctor (or if your hospital participates in an online health management program then there). This could allow us to save money on labs (uh oh!) and to monitor our health more closely ourselves and really be a partner in our health management instead of simply just a patient.

Monday, April 22, 2013

Day 22: This is Why I Fight #HAWMC

"Write about something ordinary that's inspiring to you, something simple, perhaps overlooked, that fuels your activism."

First, allow me to give you some reading music:

I would be lying if I didn't say that there were a million reasons I fight for awareness and better treatments for rheumatic diseases. To me, every single motivating factor is simple and overlooked but perhaps not quite that ordinary.

Before I starting blogging, I thought I was nearly alone in my suffering. I didn't know the stats but I knew no one outside of my family that had any kind of juvenile arthritis. It wasn't until high school that I met someone else (also named Kirsten!) who had it growing up and her disease was in remission. In college, I didn't know anyone with any rheumatic disease save a coworker at a department store. Many of you know I began blogging because I couldn't discuss my issues with my now-fiance due to anxiety and rejection issues. But then I started hearing from others with this and other rheumatic diseases. Now I know so many families affected with Still's and other autoimmune arthritis types, be it an adult in the family or a child.

So what motivates me?

  • The face I get when I talk about having an arthritic disease if I'm not able to use a large description to really explain what happens
  • Waking up to see this sign every single morning
  • Idiot articles and show bits in the mainstream media, like Dr. Oz and that recent 'cured' child
  • Kids and other adults living with this and other rheumatic diseases, no matter their severity or disease status
  • People that have lost the battle with this and other rheumatic diseases
  • Laura's dedication and mission was conatgious more than she ever knew
  • My fiance's dedication, encouragement, and support
  • Watching my sister battle this disease with incredible strength
  • My baby niece - chances are she won't end up with this or another form of JA, but in case I will fight to get as close to a cure as we can before she even gets sick

Me and Mia


Laura, I miss you so

Me and the fiance

My sister and my niece Missy

I love you all. I may not even know you, but you've clearly come here because you or someone you know is fighting this or another rheumatic disease. It is a tough road to go down, but trust me things will get better. And if they're bad right now, scroll back up and look at my baby niece!

Sunday, April 21, 2013

Day 21: Adversity #HAWMC

"The flower that blooms in adversity is the rarest and most beautiful of all." -Mulan

I'm not sure what to make of this quote to be honest. Part of me agrees and part of me doesn't.

People have told me that they are amazed at what I have done and continue to do in the face of adversity. I grew up sick, dealt with sexual abuse and assaults, felt helpless watching my sister being beaten by family, and continue to deal with depression and chronic pain issues. Despite all that, I have achieved a lot. I finished high school with honors and an International Baccalaureate diploma, in addition to being one of the valedictorians. I was the first woman in my immediate family line to go to and graduate from college. I started college with sophomore standing due to my IB and AP credits. I continue to work and to live my life as normal as possible, even though it hasn't turned out really at all like I've planned.

I try to carry on being a realistic optimist. I know it sounds like an oxymoron and, to be honest, often feels like one. However, it is who I am.

I don't think that makes me that rare or beautiful like this flower. I wouldn't be the same without each thing I've gone through but that doesn't necessarily make me better for it. Every person deals with a set of crap circumstances. These are the things of which life is made. My set of circumstances just happen to surround a very dysfunctional family, assholes interjecting their ways into my life, and Arthur the biggest asshole of all. But things could be worse. I could be my fiance's aunt, fighting breast cancer a second time and not particularly winning the battle. I could have lost my legs in the Boston bombings. My sister could have died when she had a seizure a few years ago. My mom could have died in the hospital in October.

That doesn't mean that there aren't people who clearly have it better than me either, but we all have our crosses to bear. Laura taught me that my hurt could not ever equal the hurt someone else feels. We all handle things differently and we have to help each other through that. As much as she didn't compare pains and experiences, I know that the things I've gone through with my illness will never even come close to what she had gone through. Even as she was becoming more and more ill, starting to die of infection, she tried to help me figure out what was going on with my back (clearly she didn't know what was happening to her). She did not try to make others feel horrible because she was clearly worse off than them, but to encourage friendship, support, and community. Knowing her made my life infinitely better.

Laura is this rare and beautiful flower, now wilted never to bloom again. The rest of us are simply trying to catch up.

Saturday, April 20, 2013

Day 20: Not the pit of despair! #HAWMC

"What gets you OUT of the pit of despair when nothing is going your way?"

First off, this prompt is awesome. Why?

My uncle and I used to be like brother and sister. Like any good big brother, he and I would play fight/wrestle. The pit of despair was the nickname for his horrid smelly armpits.

Also, you may remember the pit from the best movie ever:

Thanks to Lori from Misdiagnosed Me for bringing this memory back with her prompt suggestion.

I've talked a lot about humor's role in combating my disease in the past, and I guarantee you that still stands. Here is a list of things that I do to get my grove back when Arthur is trying to keep me down:

  • Go to the gym to run my tiny quarter mile or more then laugh in the face of autoimmune arthritis
  • Play video games despite angry swollen fingers
  • Cook amazing food
  • Bounce around with my baby niece and hang out with my family
  • Dance around to Justin Timberlake's latest album
  • Play blues on my ukulele a la Hugh Laurie
  • Watch bad-ass comedy shows like Monty Python, A Bit of Fry and Laurie, and Whose Line Is It Anyway?
  • Yoga/meditation
  • Arthritis walks/awareness shizzle
  • Go to the zoo
  • Thursday night trivia at Applebees with awesome friends
  • Brewers baseball, whether it's listening to Ueck on the radio or popping in on the press box when my future father-in-law is covering games
  • Wedding planning!
  • Pinterest (see humor, geek, and wedding genres)
  • Talking/spending time with my favorite people
  • Snuggling with the fiance!
What about you? What kinds of things do you do to escape your illness?