Friday, November 30, 2012

Day 30: I am awesome! #NHBPM

Write about why you're awesome.

I'm not even kidding you that was one of the prompts for today. I only have one thing to say.

Thursday, November 29, 2012

Day 29: Goals for 2013 #NHBPM

"If I could accomplish anything/one thing in 2013 it would be..."


Oh? We don't have a cure yet? Ummmmmmmm....

Well then. I guess I actually have to think here. I have several goals so I'll just list them all.

I want to lose weight - not for anyone else but myself. I want to really feel as beautiful as I'll look in August 2014 :)

Also, I want to find a dress for my wedding - one that I fall in love with instantly and looks great on me and is priced nice.

I want to find a medication that actually works for me and will keep working. And I really really want to do it without Arava or MTX or going back to 'roids.

I want to not feel like my life is drained because I'm so damn tired or like I have to have a caffeine damn IV to be awake. I'm always so exhausted, thinking of it itself is exhausting. Yeesh.

I want to be able to be active again - to work out, to hike, to play with my niece - all without needing days off to recover. I want parts of the old me back - the one that was excited about exploring instead of tired at just the thought.

Fuck, that is a lot of big goal type stuff right there. Bring it on 2013!

Wednesday, November 28, 2012

Day 28: Why I'm thankful for Arthur #NHBPM

Write about the unexpected blessings of your health condition - or how being a patient has changed you.

There are an awful lot of people who take things for granted - being able to breathe well, go for a morning jog, or even do something so simple as walk to the bathroom. Running has been out of the question for a long time for me and that's fine, but the other two are things that everyone has to be able to do. In the time since I began blogging, I have gone from someone with few rough days to someone with few awesome days. It has been an incredibly difficult and demeaning journey. There have been so many times where I was ready to throw in the towel, to quit and just resign to being a lonely cripple.

But I have been blessed with a great many things. I have a support system that once was only my family - which isn't so helpful when they blame being a bitch or having a panic attack for my actions instead of actually *gasp* being sick. Today it has grown and includes people that I have not met and some that I will probably never meet as well as a number of people that I have met in person only due to our shared experiences with illness. Many people I have talked to see a drop off in friends - but most of the friends that I have made seem to support my fight for awareness and offer help when I might need it. That alone makes me feel incredibly lucky.

And then there's the fiance. In all honesty, I figured that my illness would keep me from finding him. Even past experiences on dates had seemingly proven that to me. And yet, I sense that my illness is part of why he loves me - the fight I put up, the things I stand up for, the effort I put into things. That all goes into making me who I am and without it I may not have found this one person that I care about so deeply. I also wouldn't know his family, who supports and helps me so much.

I am blessed to have one of the finest doctors in my city and probably the entire state of Wisconsin and along with her comes an amazing nurse practitioner who fully embraces me for who I am and seemingly cares for me more as a friend than a straight up patient. They in turn have led me to some great doctors, a therapist,  and physical therapists who really do a lot to help support and help me mentally and medically.

I have learned a great many things about toxicity in my life that I am working to rid myself of. There are certain groups, friends, and individuals that cause so much drama and emotional distress that it greatly affects my ability to handles my illness - and can even make my illness that much worse. It is a tough process to go through as it can pull heartstrings but it is something I have to do for my emotional and physical health. Without being ill, I'm not sure I would be going through that.

Being a patient has taught me that doctors are people and are not perfect knowledge filled robots. They also may not listen a lot sometimes so you may have to nag. I have learned that enough nagging will move things along. I have also learned that you really have to get input from patients themselves sometimes since docs don't always know side effects of meds or issues associated with an illness.

Most of all, I have learned that being a patient is a pain in the ass but if I can use my experiences to help others I am more than happy to go through awkward times to make it so.

Monday, November 26, 2012

Day 26: I'm a #rheum pimp #NHBPM

But only for my friends! Today, I wanted to take time to share with you my favorite blogs, facebook pages, and twitter-ers regarding juvenile arthritis, Still's, and the #rheum or chronically ill community in general.

Laura is an amazing resource for information regarding Still's and she has done a lot to help me on my journey. She recently got engaged as well and we are both at very similar points in our lives. It is really great to have someone so supportive and understanding as she is. You can follow her blog here, Twitter here, and facebook here.

Mia is the cutest toddler I know and she has been dealing with Still's for too long. Good news is that she just came off of steroids too!

Parker has been dealing with his Still's for coming up on three years now. It has been really neat to watch him grow up though obviously I wish it was under better circumstances.

Natalie hasn't blogged in quite a while but she's pretty active on Twitter. She is an OT living with Still's, anemia, and fatigue - which is nice to see! I feel like if I lived in the UK, she would be the OT I'd want because she would now how these things affect our bodies.

Trish over at PhyzzEzee was diagnosed with Still's in 1949 and still continues fighting it today. She is a great resource for information and you can follow her on Twitter here.

Sally over at King Arthur & the Creaky Knits of the Round Table has Still's and plays the ukulele too! She also knits if you couldn't tell. You can follow her on Twitter here.

Emily over at Chronic Curve is a college student on Remicade for her Still's. You can follow her on Twitter here.

My friend Joanne made an awareness video a few months ago and is now blogging! She's about the same age as me and I think it's incredibly important that young adult chronicle their battle with rheumatic diseases. There just isn't enough information out there on young adults with RA. You can follow her on Twitter here.

Speaking of, Joesph is in a similar situation. His RA battle has included being diagnosed with Raynaud's as well. He's from across the pond so it has also been interesting watching him handle the NHS. You can follow him on Twitter here.

A to the A over at Wanton or Wonton is engaged like me and trying to navigate the addition of lupus to her numerous health issues including RA.

My friend over at Secret Raindrops is amazing. She has recently gone through a divorce and is working on the boundaries of still living in the same household (Hurricane Sandy put a squash on her moving plans) and dealing with her ex's family - all of whom doubt how serious her RA is. She is one of the strongest people I know. You can follow her on Twitter here.

My friend Stacey is likewise amazing. Not only does she deal with multiple illnesses including RA and fibro, her sweet daughter Jordan has shown symptoms of JRA since age 2. They are some of the first friends I made when I did finally reach out into the RA/JRA community and they have become dear friends. They live near where the JA conference will be held this next summer and I'm hoping we can all make a trip out to Disneyland. You can follow Stacey on Twitter here and Jordan's Pink Angels here.

Emily over at Mama Sick chronicles how difficult it is to be chronically ill when you have no insurance and no money :(  You can follow her on Twitter here.

Britt over at The Hurt Blogger recently got a gig writing for Creaky Joints! How cool! In the last year, she has done a lot to further understanding of patients with rheumatic diseases including speaking at the Med-X conference. You can follow her on Twitter here and facebook here.

Here is a list of great people to follow on Twitter:

  • Sarah is on Humira and plays college softball. She's pretty cool.
  • Kary lives in the UK with RA...
  • So does Katrina...
  • And Barb who also blogs at Walking in My Shadow
  • Heather is the first Twitter friend I met in real life and she's like a sister to me. And she knows just about everything about getting a 504 plan for kids set up!
  • Dawn is a gluten free, paleo chick with spondylitis who loves baseball and the Detroit Tigers. We totally have a lot in common.
  • Sporks is a RA fighter who loves NPR, video games, and cooking. She also shares the most hilarious things I've ever seen.
Here is a list of awesome people and groups on facebook:
If you made it to the end of this post, you deserve a damn treat! There are just so many resources out there available to us and so many dealing with illnesses that, even if they're not exactly what we face, know how we feel - the loneliness, helplessness, and prednisone munchies. I could have included so many more people here than I even did but had to restrain myself so if you're disappointed you aren't on here don't be sad!

Sunday, November 25, 2012

Day 25: Patient advocacy, always evolving #NHBPM

How have your goals as a patient/advocate/person evolved?

Yesh, loaded question alert!

Since I started really taking charge of my health, I have turned from being someone uneducated about my illness and medications into someone that has failed medications and changed doctors numerous times. I have gone from being someone who would sigh and toss fundraising pamphlets from the Arthritis Foundation in the trash to someone who participates in walks and has even spoken at an AF event.

At first, it was about me and my pains - frustration that no one knew what I went through and trying to find a way to share that with others. Now it's about the kids I know with any kinds of arthritis - it's about making sure people know about Jordan's infusions or Parker's hospitalizations or Mia's final dose of prednisone. I grew up in a world where the kids I was actually able to interact with made fun of me for my weight or because I was a 'nerd' or 'weird.' These kids deserve more, they deserve better.

I've also learned I'm not alone in many ways. Obviously, I'm not alone in my specific disease (hooray?). I'm not alone in being quirky or being looked down on for it. But I'm also not alone in the fight to raise awareness and to help others, especially the kids - that, to me, is worth everything.

These kids - they're worth everything:

Parker being an awesome M&M (read more here)

Mia is so freaking cute it's unbelievable (read more here)

There are other kids that could be mentioned and the list could go on for a while. Parker and Mia both have systemic JIA/Still's and Jordan has another kind of JIA and also uveitis (which is finally cleared up for now after like 6 years! YES!). When I think about fighting for awareness and change now, I think of these sweet kids - their hospitalizations, shots, infusions, surgeries, and more. Who could ask for better reasons to fight?

Saturday, November 24, 2012


Earlier today, I was working on some future blog posts and the fiance turned to me and said that he sometimes sees me as Yoda helping people fight 'the Darthritis.'

Badass, I am

At first I just thought it was hilarious and I was also pretty disappointed that other people hadn't thought that up yet. Seriously.

Your lack of ingenuity is disturbing.

But then I actually started thinking about it. If you haven't seen Star Wars (seriously, how are you alive at this point?), note that the rest of this contains spoilers.

Okay, so we all know that Luke goes through a lot of film roll thinking that Vader is an outside being unrelated to him - only to find that it is a part of him gone horribly wrong.

It's pretty horrible.

It's not unlike how people believe they have a cancer or mono or some other ailment until they find out they have a malfunctioning immune system... which leads me to my next point.

The white blood cells control immune response and are the weapons used against invading viruses and bacteria... like the Stormtroopers fight the rebels!

We heard you guys had some in-vaders.

The Millennium Falcon could be likened to the meds we take - their release mechanisms and effects on our bodies.

Every Luke needs a Yoda to sift through the information, to mentor us and to show us the ways of the rheumy force. Anyone could be your Yoda - your awesome doctor or nurse, your cousin, or a stranger you never even met. Together with their support/training and the support of your fellow 'rebels' I have no doubt that someday our bodies will decide to help us knock the evil Emperor Palpatine into the never ending tunnel of despair.

Do it man!

Now that I've stretched this comparison probably as far as it should go, I leave you with my arch nemesis - Darth Ritis.

Day 24: The Holy Grail of Spoons #NHBPM

If I had unlimited spoons... Man. I tell ya what, right now I could use a few of those days. I'd love to pre-register for the unlimited spoons days - like my wedding and honeymoon please? Pretty please?

I would love to use unlimited spoons for a Hawaiian vacation. I'd love to go snorkeling, to wander around volcanoes, to hike, to run along the beach. Damn.

If I could wake up tomorrow and be just fine with my spoons from now on, I would start running again. I would get better at swimming and swim the days I don't run. I'd take on another job or go back to school and finish my masters. I'd for sure be down for babies, for babysitting, for play dates and all the Disney theme parks.

It's amazing how much the lack of spoons really influences how much I do versus pain. Running would hurt sure, but with the spoons to recover it'd be worth it. Same with swimming. The kids? Maybe not as much.

There are so many limitations placed on our lives because of our illnesses. It's disgusting :(

Friday, November 23, 2012

Day 23: Hey doc, listen up! #NHBPM

I get to give doctors advice today! Well, I guess only on here. The thought counts right?

The rheumatologist I had at this time last year was horrible. He didn't tell me that he thought I might have fibromyalgia nor did he try to treat me for it at all. He didn't listen to the side effects I was having with MTX or with Humira and totally just didn't listen to me in general - I have about 20 mistakes in my medical record that I have had to clear up with my new docs due to his inattention... like that I had no pain for a decade - um, WHAT?

I also have had issues with my primary care twice now with medications not being prescribed correctly or being prescribed something I'm allergic to. Hello!

There is so much pain that we patients go through. The last thing we need is to go through medication issues or deal with inattention that causes us problems. So here are some things that our docs can do to fix these problems!

  • Listen! Please! We listen to you and try medications we aren't sure about and other treatments we have doubts about because you say and think that they may be beneficial. The least you can do is treat us the same.
  • Contact us back! A lot of us have problems even getting up the courage to call when we have an issue because somehow we feel like we failed a medication or a taper or a treatment. We have probably waited too long in any case to get your input on something and so you just need to remember that!
  • Figure out who we are. One of the reasons why I love my rheumy office is that I feel like every time I go, my NP really listens and asks questions that aren't just health related. She pays attention and knows how outside stress affects my health. She also celebrates my happy things with me too :)  At my appt with her a few weeks ago, she finally learned about me getting engaged and she was incredibly ecstatic - and went so far as to write it down including our picked date. I'm rambling maybe? The point is, when you know the things we do and love you will know what treatments will work the best and what things might negatively affect our health the most.
  • This probably goes with the last point, but be our friends. It is much easier to share problems with someone you feel really cares about you and not just treating an illness because it is their job than it is to share with a cold stranger.
So docs, nurses, and future docs take note! We see you so much you're practically family anyway, so might as well get used to it and listen like it :)

Thursday, November 22, 2012

Day 22: Danka #NHBPM

Today, I am supposed to write a post for the things I am thankful for. I think we need some bullet points.
  • After a year of dealing with a crappy rheumy, I was able to find one that not only listens to me but works with me instead of just for me.
    • Her nurse practitioner is the bomb dot com and has even called me on personal time to check on me.
  • My niece is gorgeous and healthy. The gorgeous part may be kind of duh but there are unattractive babies out there.
  • I'm engaged! To the love of my life! And he's pretty awesome at being supportive too. Also, super super handsome :)
  • Working like ten hours today! I'm only thankful because it's holiday pay so instead of getting paid for ten hours, I get paid for 20! YES! That's like $200!
  • Jenna Marbles.
  • FMLA
  • PTO
  • My new neck physical therapist and her buddy, the water exercise lady
  • Enbrel has really done a lot to help me. The real test will be this winter as that's when Humira really stopped working.
  • For my health. I know it sounds really weird because it isn't so great. But I haven't been in the hospital ever because of Arthur (though I know times I probably should have) and I still responding somewhat to drugs and, unlike some friends, I'm not having to think about stem cell therapy.
  • You! You read my blog, you comment, you reach out to me to share your stories. It has made a huge difference in my life, knowing that I wasn't alone in this.
Happy turkey day!

Wednesday, November 21, 2012

Day 21: Insane in the membrane #NHBPM

Today, I get to write about mental health... which is something that I struggle with definitely.

Most families are dysfunctional and mine even more so. There is a lot of undiagnosed and untreated mental illness floating around I think and that's not so fun.

Understandably, growing up with a chronic illness tends to warp minds a bit. I recently read a book about fibromyalgia and found this quote that, I think, describes very accurately children dealing with chronic illness of any kinds:
Claudia Marek, author of The First Year - Fibromyalgia, interviewed a group of children and was amazed to discover 50 percent of her interviewees thought everyone they knew had pain but that other children were simply braver and better at coping with it than they were. Consequently, they were unwilling to verbalize their distress to others. In fact, for many children with FM, the pain they experience is "normal" to them. Since they have not experienced life without the disorder, they cannot distinguish their symptoms as unusual. (14)
See what I mean? I always talk about how thankful I am to have been ill from such a young age, but it's not like it's a picnic either. I very much thought that pain was normal and that everyone else just did better with it - even when I knew that wasn't the case, that is how it always felt to me. And it has always been tremendously difficult to explain what is going on with my body, even when I know the technical terms. Hooray for not being crazy!

Even so, there are enormous feelings of inadequacy, of horrible loneliness, of impending doom at the things I know could be just around the corner for me. I have a lot of frustrations and questions - Why do I have this? Why won't it go away? How much worse will it get? How much longer do I have before it gets to the point where I can't do anything anymore? When will I have to apply for SSI? Who will stick around to watch me get worse? The list goes on and on.

Basically, the soundtrack to Rent is constantly playing in my head.

Understandably, a lot of people dealing with chronic illness deal with depression. Much of it is due to fearing the future and missing the past you, the person who was 'whole' and could do things. Children with Still's have a higher incidence of depression than children with other arthritis types because it is so hard on the body and the mind.

Thinking about it, I probably have been dealing with depression since about 6 or 7. I didn't know how to put it into words, but between Still's and sexual abuse I had a lot going on. From how everyone treated me being so sick, I figured I would die pretty much being a young kid and that was always tough. Even now, I sit here at 24 years old looking at my engagement ring with a mixture of joy and sorrow - part of me still feels that somehow, for some reason, I won't make it to that day.

The first time I thought about committing suicide I was probably 8. And it constantly popped up throughout the rest of my life to today... not today literally but figuratively. And a lot of people don't get why for some reason.

In the June or July of this year, I had my first appointment ever with a therapist. He listens mostly, but is trying to help me sort out all of my anger and my frustrations. Obviously as you can see, there is a lot going on.

It is incredibly important to make a mental health professional a part of your medical team. Even if you don't see that person very often, having someone to talk to that isn't a part of a situation - and that you know isn't going to gossip about it to the rest of your family or friends or tell the person your frustrations deal with about it - well, that's pretty priceless in my book.

Monday, November 19, 2012

Day 19: Traveling with Arthur #NHBPM

The holidays are upon us. It means long car rides, overnights in strange places, and spending all damn day cooking and cleaning and dealing with annoying people. Just hang in there - there's only like a month of this! Here are some tips, tricks, and ideas I have for getting through this stressful time.

  • The most important thing to do when traveling with a chronic illness is to not underestimate your illness or overestimate your abilities. Don't be pessimistic here, but just realistic - imagine what you'll need on the worst day and you'll be prepared for anything.
  • If you're traveling abroad for the holidays, make sure to have extra days of medication on hand in case the weather turns to crap.
  • Always make sure you have your necessary meds (NSAIDs, pain relievers, muscle relaxers, etc) where you can easily get to them in case you desperately need them. It might be a good idea to not leave them on the third floor of your great aunt Lisa's townhouse.
  • If you don't have a medical alert/ID bracelet, make sure to keep a list of your meds, allergies & reactions, emergency contacts, and doctor information handy. I have a list in my phone and a simple written list in my wallet. Make sure that the people you are with know where these things are in case of emergency.
  • If you have a disabled parking hanger, make sure to research the rules for use in the state(s) you're visiting for the holidays. Not every state has the same rules regarding parking meters and more with the hanger.
  • If you have food allergies, make sure people know it for their holiday cooking ideas. Don't put yourself in a place to have an allergic reaction if the decision comes down to eating questionable food - but make sure that your loved ones know it has nothing to do with them.
    • And if you're not visiting family, make sure to plan out restaurants where you can safely eat along your routes.
  • If you're staying at a hotel, make sure to ask if they have an elevator. If not, try to get the first floor.
  • If you're driving a long distance, make you can take little rest breaks to stop and stretch - and if you drive like me and the fiance do, these are great spots to switch drivers. Also, pillows are great in this situation.
  • Plot things out ahead of time and make sure to have alternative activities. If you like hiking, make sure you can have a more sedentary activity just in case your body decides hiking is a no-go.
  • Communicate with your traveling partners how you are feeling so that everyone is on the same page. I have been saved numerous times from the fiance noticing something I was in denial about during travels.
  • Have a mobility aid to back you up! I took a cane on our big vacation this year and ended up not needing it at all. Having it there though took a lot off my mind.
  • For heaven's sakes, NAP! Don't fight the fatigue all the time and make sure that you can do some of your planned activities on different days if need be.
  • If you're flying, don't be afraid to ask for a wheelchair. It'll make boarding go faster and people are very willing to help.
  • Plan snack breaks to keep your energy up. Cashews, while fattening, are great for this.
  • Make hand sanitizer your friend!
  • Let anyone who will be coming for thanksgiving or other holidays know how dangerous it is for you to even get a cold and ask them to stay home if they don't feel well.
If you have any more tips to share, please do so in the comments!

Happy travels!

Sunday, November 18, 2012

Day 18: The bedside manner police #NHBPM

Today's prompt is "I want to change THIS about healthcare."

There are so many things I wish I could change about healthcare. Golly. The biggest issue - and I think we can agree on this - is dealing with doctors who either don't listen, don't believe certain conditions are real, or who don't think you know enough about your own condition because you didn't go to medical school.

Unfortunately, right now there is little you can do when you encounter these kinds of docs other than to leave them behind in the dust. Some of us go to free clinics or are a part of programs that won't allow us to switch doctors. For this bunch, I feel saddest of all. There is really nothing to do aside from perhaps report the doctor to some kind of board or website and hope that it gets investigated.

In a perfect world though, we would be empowered patients and be able to do something!

Imagine a world where, when you get a craptastic doctor or nurse, you could compile all the information from your meetings and submit them to a kind of bedside manner and reeducation police. This way doctors would be reprimanded and reeducated if needed when they step out of bounds, don't listen to your complaints and troubles, or decide you have a fake disease.

The police would be made up of a combination of patients and medical professionals who, able to see both sides of the situation, are better equipped to pinpoint the problems and get the situation under control.

Wouldn't it be nice to be a part of a world where you could stop feeling helpless about your crappy docs and really do something?

Saturday, November 17, 2012

Day 17: Health playlist #NHBPM

Today, I was charged with putting together a health playlist. I have taken to YouTube to do so, since it's accessible to most and easy to share with you guys! You can either follow this link to start listening or I think just watch below? Warning though - there are about 100 songs so maybe just click the link!

Thursday, November 15, 2012

Day 15: Medical companies should use social media #NHBPM

There has been a lot of talk lately in the social media world about the frustrations surrounding the fact that a lot of medical companies aren't really on social media. From one perspective, it does make sense. Having some site where people can have unmonitored interaction or to lambaste you freely could leave the potential for a lot of problems.

From the position of us patients though, it really would do a lot of good.

One of the best things about having an online community with people who have taken similar meds or gone through negative reactions is that you can get advice on how to handle issues that arise from meds to exercises to many other things. Wouldn't it be nice to be able to contact the manufacturers of a medication when you have an issue?

Many companies have ways to contact them, like a support line. The problem with that is that, even with registered nurses answering the phone, they all just tell you still to contact your doctor. Obviously, there are reasons for that and it's understandable but it seems that there is really no recourse, no way to contact the company back to let them know what the real issue was - if it really was the med or an interaction or something else. With social media, that could be somewhat fixed.

Facebook pages allow you to review companies and their products as well as just popping in to say hi or whatever. Couldn't there be a similar form to fill out for negative medication reactions? That way others can see and know about the possibilities - and how to handle that situation - and the company could be made aware of it too.

In this day and age, social media is so key to many businesses. It is the main 'word of mouth' now and companies need to get with the times. I think each company needs a dedicated social media person to handle these issues and best think on how to respond, to record issues, and to follow up with clients. It won't take away me going to my friends first/concurrently but it will alert companies to issues they may otherwise not know - and that information could help doctors figure out why people all the sudden start back spasms the same time as starting a new drug or other reactions. It could really change lives.

Wednesday, November 14, 2012

Happy birthday Arthur!

Dear Arthur,

Can your birthday really be happy?

19 years ago today, you gave me my first sick day. You popped up with rash, with fatigue, with swelling. I didn't even know it was you at first. You're good at disguises. I thought you were someone else, someone acutely frightening but no less scary in reality than you.

Over the last 19 years, you have made me miss numerous things from most of elementary school due to having to be homeschooled to stopping grad school early to my niece's blessing... though to be fair, I'm not sure if that was you or Phoebe Fibro. I'm pretty sure you invited her though and you're responsible for your house guests.

You have caused me immense pain that I can't even explain. You've attacked my eyes, my lungs, my heart. You've forced me to buy a cane and to have more ace bandages than a middle school nurse's office. I don't wear shoes that support my feet well often, because you swell up and make it impossible. I fall asleep at random times. I have gained weight because of being on steroids for two years and not really being able to work out because, again, of you. I've gone severely depressed and contemplated suicide from a very young age because I knew the things you would do, you could do to my body. You have forced me to stop eating due to tummy pains, to limit what food I can eat, and to altogether literally get sick all over like you did Monday. You make me writhe in pain, not be able to sleep, and wish that I was anyone else but me.

But you know what Arthur?

Despite all the things you have done to me, I graduated high school with honors and with an international baccalaureate degree. I started college as a sophomore and there I met the love of my life. I went from being afraid to go and be a part of the world to late night visits to diners with friends, hiking, and going on vacations hundreds and thousands of miles away. I have learned to live in spite of you, to prove a point to you that you seem too daft to get - you are Arthur. You are a part of my body, but you are NOT a part of me. You will NEVER be. I refuse to let you limit me more than you clearly have the power to. I will not live my life focusing on the things you are capable of, because life is both too short and too long to live like that. I refuse to do that, to put my future husband or my sister or my niece through that. I will take care of myself, but I will not allow you to run my life.

So happy birthday you bastard.

PS: If I had a dick, this is where I'd tell you to suck it.


Day 14: D'oh #NHBPM

Today, I'm kind of building off a few prompts and sharing the issues that I have had in some support groups that have either led me to leave them or to correct serious misinformations.

For me, the best way to deal with any negative feedback or incorrect information is to be incredibly educated about your illness - know the stats, symptoms, medications, etc.

It's a very interesting to study. For the most part, I think that we all expect people who are outsiders to not understand our illness or to be promoting misconceptions or miracle cures. Sadly, I think the majority of wrong information actually comes from us ourselves.

In the last few months, I have left a lot of support groups because there is A) a ton of freaking drama and I just can't handle it, and B) a lot of idiots. The two may be related.

There are a lot of people joining support groups lately to spout junk about natural remedies, cures, and lies they sell themselves to deal with their disease. The latest one I ran into was a guy assuring someone that she would totally go through remission and shouldn't really worry about her Still's right now.

Um, what?

Turns out, a lot of doctors apparently are skewing the facts (or are complete idiots which totally would not surprise me) and telling people that Still's is a one time thing for the majority of people and that, given that, they will be able to return to their normal lives soon.

Again, what?

It would be so easy to get very defensive and just go off about how I have been sick for 19 years (pretty much exactly today actually - more on this later), how I've done a million things from juicing to natural remedies to more and it never did anything, and how despite a trillion prayers, blessings, copper bracelets and more I still am ill.

Oh, it is soooo easy.

But the right way to approach it is with information. Only 20% of all Still's patients experience any kind of remission. Of that, the majority is short lasting and when the disease does pick back up it is often worse. That's not according to me - that's according to the Arthritis Foundation and an article written for them about Still's by the foremost SD doctor, Dr. Cush.

By having that knowledge, I was able to give an explanation why someone was giving misinformation and it was appreciated by many - both those who did know this and were drafting probably their own angry responses, and those who didn't and really wanted to know their odds of remission.

We have to be real with each other. Lies and misinformation only separate us and make the case of why we need to raise awareness somehow seem less.

Tuesday, November 13, 2012

Day 13: The Secret Garden #NHBPM

Today's prompt is to share my favorite book and talk about how it ties into my health or my life. My favorite book does both.

My great grandma had MS for many many years. For most of the time I can remember her, she was in a motor scooter - which definitely frustrated her but she turned it into a plus by doing fun things like pretending we were racing cars in my backyard with me and my sister.

One of my only real memories of her before the scooter became a permanent fixture in her life was a visit to the movie theater to see The Secret Garden. The story - whether it be book or movie - always reminds me of her, her tenacity in the face of her illness. It also reminds me of how dangerous it can be to only focus on being sick and that I need to remember to - wait for it - stop and smell the flowers.

The story focuses around a little British girl, Mary, who lived with her parents in India. Her parents were very wealthy and so Mary was raised mostly by servants until the day cholera hit their home. Mary's parents and many of the servants died. She then has to move back to England to live with her uncle, whom she has never met and is kind of a dick who travels like constantly.

He's a dick cause his wife died and he decided to hide everything they enjoyed together because it was too painful for him. Eventually, Mary finds out about two of these hidden things - the garden her uncle and dead aunt tended together and their son whom everyone says is very ill. His father has not really ever spent time with him, most likely because of how similar he looks to his mother. The child is 'so sick' that he doesn't see anyone but his nurses and his uncle, a doctor. The child is convinced that he will die he is so ill.

Mary is eventually able to bring the garden back to life and, due to the son's somewhat princely stature, he is able to get outside and help tend the garden. Being out and about in the end eventually helps him to feel much better. The uncle/father is led to the garden and, despite the fact that he should be pissed beyond all belief, he is pleased - both to see his son well and the garden beautiful again.

You should really find the movie, if only to see Maggie Smith be a hard ass as the main caretaker of the children and the house. She's like 80 times as badass as in the book but I just assume that's what Maggie brings to every character.

Monday, November 12, 2012

Sleep Studies Suck

And it's not just cause of alliteration.

I toss and turn like a banshee in the night and I like to be on my side - both things that are made much more difficult when you're attached to 36 wires.

But I'm getting ahead of myself.

I got to the sleep study and waited for about 10 minutes for a sleep tech to take me and the other two gals back to the orientation room. We heard a dude talk about the dangers of sleep apnea and what a sleep test was like and then we were taken back to our individual rooms. My favorite part of it all?

A guy in a hospital bed!

There was a House marathon! And I also had a spinning chair!

They should have known better!

But looking at the shit I was about to be attached to wasn't very exciting.

Those are hanging off my head??

My lab tech came in and glued the metal probes to my head and also attached other sensors to my face, chest, and legs. Then the trick was getting comfortable in bed with all that on...

That never happened. My neck wasn't being able to get enough support because of the pillow situation with all those sensors. I also wasn't able to really get on my side once I had gotten my fill of House. Sleeping in a bed with crap support wasn't so fun either. Needless to say, Friday was not a good neck or back day at all.

I do not have sleep apnea, but they did observe something else called alpha intrusion. Basically, this means that my brain was sending waking waves during stage 4 or REM sleep. While they weren't always intense enough to wake me, they were intense every time to bump me out of REM. This means that I was not getting enough restful sleep - which explains why I slept for 2 hours when I got home... after spending half an hour in the shower and using half a bottle of conditioner to get all that goo out of my hair.

Submit this baby to Playboy!

This alpha intrusion is very common in people with pain and chronic illness. It's a very interesting thing to learn about, as it isn't anything I had ever heard before. I wonder how many of us deal with that?

Day 12: Wiiiiii #NHBPM

Today I get to tell you about my favorite health related game. It would be really easy to say it's Pandemic 2 but I'll try to take it seriously.

I don't use it as often as I should, but I freaking love my Wii Fit.


Not only are there "normal" workouts like yoga or strengthening exercises like pictured above, but there are all sorts of games and tasks you can do like skateboarding or segwaying (I'm not kidding) or even extreme hula hooping. The things are usually pretty easy to do, even if you are having a tougher day. Clearly some of them - like free running - aren't maybe the best for us. But rhythmic kung fu totally makes up for that.

It's like I'm back in high school!

One of the things I like the most about it is that there is a focus more on how strengthening your body and working on your posture and balance helps to make you healthy. Sure, they do also focus on weight and BMI but that isn't the main focus. With a gigantic BMI I can totally appreciate that.

It was worth the extra money for the board and game to me - despite the fact that I barely use it. I also barely use our gym membership that costs us 60 bucks a month. Having the Wii Fit allows me the ability to not feel like I need to leave the house to try to workout - which is important since sometimes I want to workout but leaving the house or driving isn't necessarily the best or easiest thing for me to do.

Sunday, November 11, 2012

Day 11: Humor is the best medicine #NHBPM

Today I get to write about my favorite non-health related thing that improves my life. It is really easy and tempting to write about people in my life and subjects I've talked about a lot before. I've touched on some of the things that definitely help me get through my days - mostly music and humor. Later on in the month, I'll touch on the music aspect of things.

Humor, ladies and gentlemen, is how I get through the day. It always has been.

I can't handle a lot of emotion. Crying, to me, always makes me feel too vulnerable, too weak. Being sad and melancholy is not something I am good at, even when I try. And all deities forbid I should ever have to give a eulogy at a funeral service. That's the ultimate sad time and everyone is watching you.

Ah, okay, I'll just do that.

I have always loved Monty Python and, in many ways, I find myself identifying with them. They use their intelligence not to gain really anything from it but to improve people's lives - in a very silly way obviously. Then again, I like just about all British humour (see what I did there?).

Rowan Atkinson is a comedy god. Not only is he extremely intelligent (hello engineering degree!), but he gets paid to be incredibly silly.

Also comedic gods? Hugh Laurie and Stephen Fry:

Not to mention, again, that these two men are incredibly smart. Stephen Fry had been labeled a genius as a child and despite dealing with some tough mental issues he has bounced back and is stronger now because of it. Hugh Laurie, of course as I've mentioned before, is like my hero. Not only is he intelligent and hilarious as a performer and writer, he's quite a talented musician also.

By the way, this is incredibly hard to play on the piano. It took me 15 minutes just to make it up to the point he sings the last time I tried to play it. I feel quite blessed to have seen him perform live.

Okay, I'm done trying to impress you with my love of the hilarious and get down to business.

We've all heard the saying about laughter being the best medicine. Yeah, yeah, whatever right?

No seriously, it actually is incredibly great for you! It releases endorphins that help to relieve pain and also reduces stress. It can help lead to decreased risk of things like heart disease and strokes and help to promote bonding with the people you are around.

So watch these videos and laugh and stay healthy :)

Friday, November 9, 2012

Day 9: Screaming bloody murder #NHBPM

Today, I tell you a descriptive story about a memory. It is about the day I freaked the fuck out of a bunch of clinic girls. And I was like 5 or 6. #LikeABoss

I can't exactly place this on my mental timeline of my illness, but it's a fun story nonetheless.

Little kids kind of always hate needles, even the butterfly ones.

At one point when we weren't sure what I was going through and I was incredibly ill - so ill my doctors thought I was dying - I was getting blood drawn like EVERY DAY. This is not even an exaggeration. I wish it was. Pretty much all of the memories I have of the blood draw clinic area have blended together, save this exciting day.

I was not sleeping well and, well behaved as I usually was (especially for a "dying" girl), I was showing being tired and feeling gross. I was hurting all over. I needed a nurse who knew how to handle my poor battered arms, which by now looked like they belonged to a cleanly drug addict. I can still see scars from all the pokes.

The room smelled like metal and latex. It was kind of chilly and that didn't help my attitude.

My nurse was not very lucky. On any other day, I would have been cute and laughing and whatnot. While I still was, I was also not having a pleasant day to say the least. She went in once with the needle and missed the vein. She tried again - by wiggling the damn needle IN MY ARM - and I don't even remember if she got blood.

I screamed bloody murder. We aren't talking about a kid who is whining or one who is throwing a tantrum. I am literally talking about a blood curdling scream.

My memory is fuzzy on the rest, but I remember watching a million nurses running into the room to make sure I was okay. I vaguely remember ice cream? Maybe when I got home? I dunno.

All I know is that is probably a day that poor nurse never forgot. Oops!

Thursday, November 8, 2012

Day 8: How to approach writing about others #NHBPM

I took the day off yesterday you guys. I was having too much fun celebrating the election results and using my minor in political science :) In other news, today is a day from Hades as I have 3 doctors appointments and one tomorrow morning. I'm writing this really Wednesday night cause there is just no way at all. Why?

My Thursday schedule roughly:

  • 7am - wake up
  • 715 - actually wake up after hitting snooze
  • 8 - get in shower and quickly dash to West Clinic
  • 9 - GP appt to figure out why I've had a sore throat for 1.5 weeks before I shoot up my Enbrel and cause shenannigans
  • ? - get coffeeeeeee ALL THE COOOFFEEEEE
  • 1040 - Rheumy NP to hopefully go over neck x-ray and med options
  • 12 - no more caffeine or naps :(
  • 12-7 make out with my fiance and maybe eat something too? Maybe.
  • 715pm - report for sleep study
  • 7am Fri - sleep study done!
  • 10 - therapist to unwind
Um, yeah. The caffeine issue is... well, an issue. Especially as I'm off my muthafuckin' sterrrroidddssssss 

Anyway, on to today's post!

I am supposed to write about how you chose to write about others in your blog. I guess I might as well bring up the fiance!

At first, my blog writing was mostly for him and so referring to him so blatantly would have been weird for others reading. I tend to write my blog like I'm writing for an invisible friend or something anyway. As my blog grew, I began to talk about a lot more intimate things and was worried about how this could reflect on our relationship. Thankfully my third party writings have paid off and it's been fine :)

I do try very hard to not name people with the exception of others dealing with autoimmune arthritis. I don't want to call out anyone who might not appreciate it. I rarely talk about my family, save my sister with her health issues. I may talk about others with whom I have relationships but it's usually some kind of passive-aggressive letting off steam that I don't necessarily want them to know is about them... they probably figure it out anyway but oh well I guess?

Obviously if you are friends with or find me on facebook, you'll figure out who all of these people are for reals - you'll see my incredible fiance and know about our sex life or see my sister and know about our struggles to handle our health issues for so long. You might even see super cute pictures of my niece!

Do I super try to be covert? No. But I also respect the rights of people to not be involved in my talkings all of the time. And that's not bad.

Tuesday, November 6, 2012

Day 6: Taking the high road #NHBPM

I am supposed to write about a time I had to take the high road. This being election day, the prompt seems fitting no?

I could go on and on about why I voted for who I did by tearing down the other main opponent. I could talk about how I vehemently disagree with like everything one candidate does. But I am taking the high road and instead talking about the awesomeness of the man I voted for.

The things that Obama is doing with health care reform really are the major reasons that I cast my vote for him on Friday. A few years ago, I contacted an insurance company in an attempt to get insurance. This had to be like spring of 2008. I was told due to my illness that the insurance through this company would have been about $2,000 a month and - this is my favorite - it would NOT cover anything related to my Still's... since it's a systemic disease in all honesty it would not have covered jack shit. When Obama began to run for president, he discussed the issues with preexisting conditions that he had dealt with in his own family. I knew that he would do something, he would right this wrong.

He supports research with stem cells, something that could hold a key for helping us to develop better drugs and even perhaps cure some of these autoimmune diseases. It could be a very exciting situation if it actually would be able to go through with any of the studies here in the US would be able to go through...

I won't talk about the negative effects on the chronically ill if a person who believes that having an emergency room as health care for the poor is adequate gets elected... I may have just lost the high road. Oops!

I vote my conscience. I think about the things that will affect the people that I know, the friends that I have. What president will be better to help my friends like Sick Mama who is left in an emergency room for hours on hours screaming in pain but no one will help her because of no insurance? Which one will be better for my niece and my sister?

All I know is I have to go pick up a pizza and break open the vodka in the pantry so that I can make it through tonight because damn. As a political science minor, my stomach is crazy on edge.

Monday, November 5, 2012

Day 5: Soapbox on self care #NHBPM

I'm hopping up onto my health activist soapbox. But it's okay you guys! It's today's prompt!

It irks me to no end when people don't take care of themselves. I think it is one thing when you don't know you have a health issue, but to know you have a problem or an illness and to ignore it just - uh - I can't formulate words even.

Here's the deal - even if you have terrible self esteem, you don't have to take care of yourself for yourself. I mean, obviously you should, this should be something you want to do. We all have people in our lives, though, that we care about and that depend on us for one reason or another. Maybe it's your sister who needs to have you for mental and emotional support, or maybe it's your significant other who needs you around for that and more. Maybe you have children and they depend on you financially. Even if you don't care enough to take care of yourself, you should care enough that these people need your support.

There are people who do a million things for others and don't do anything for themselves including taking care of themselves and the logic is "Oh, I have to help and take care of these people first!" Here's the deal - if you're dying out of neglecting to take care of yourself, those people are going to lose you. Wouldn't it make more sense to take care of yourself the right ways and be able to be around longer? There's a reason the airlines all say to tend to your own oxygen mask first.

That little bugger should have grown up faster. Then this wouldn't be an issue.

I wish that more people would understand the logic in this idea. Sadly it is a huge issue in the #rheum community all over the world. We think that we are not enough because we are damaged and so we have to make up for it by coddling and helping others. Our self-esteem won't let us realize how important it is for us to take care of ourselves and we end up with infections, deformities, and worse.

I am sure that part of the issue is how society still treats women. We have come a long way from the infancy of our country, but we still get paid less than men do - and are more likely to have an autoimmune disorder than men too.

I could keep ranting and raving and explaining, but I think it would just drag down the point. We have to take care of ourselves. Or, at least, I'd rather take care of myself than end up like a pile of peanut brittle at the bottom of the stairs.

Sunday, November 4, 2012

Day 4: My bare necessitiees #NHBPM

"Write about what's in your bag/purse/backpack every day."

Well, for starters I always have my wallet with me. People might think "duh" but it's not because I'm neurotic about someone stealing the little money I do have - it's because I have a list in there of what I'm allergic to, my meds, my health issues, and my doctors/emergency contacts. If I manage to not have my wallet, then I always have my phone with the same information. I really should get a bracelet but meeeeh.

I shouldn't have that attitude.

I also always make sure to have a pen. When you need one you never really have one.

I always have to have chap stick and lotion also, especially heading into the drier months. I usually will have cough drops then too.

No matter where I go though, I always make sure to have my little thing of pills with me. No matter how many purse transfers I go through for whatever reasons, I always have that and I always refill it (or at least check to see if I need to) once a week when I refill my daily pill holder. Some days I don't need that second NSAID dose or a multitude of muscle relaxers, but it's always better to have them and not need them than to need them and not have them.

What are some of the must-haves you carry with you?

Saturday, November 3, 2012

Day 3: How do you deal with relationships gone bad? #NHBPM

Today's prompt is to talk about something I don't know much about but that I would like to.

It's tough to think about because in reality when I want to know about something I have always been the kind of person to go right to the internet or a library and learn as much as I can. I guess you could say that it's the one downfall to how I've approached education - I learn enough to satisfy my curiosity on a subject and then I move on.

I guess the biggest thing would be how to deal with relationships gone bad. No, nothing is wrong between me and the fiance - I mean relationships in general. There are a number of people that I have a hard time dealing with because we disagree so much on certain subjects. Even when trying to avoid those subjects, there is still a lot of tension and hostility. It makes it even worse when someone assumes that the source of all my hostility stems from one specific event and not logic being applied to many situations.

I have always been the odd girl out, the kind-of loaner. In eighth grade, when I returned to school after having to be homeschooled a few weeks into first grade because of my Arthur, that was very apparent. I fell into a great group of kids and never had to worry about being a loaner again really. It was that way until college. Surprisingly when you move across the country and have no ties in the new place, you revert to old ways.

As someone who uses a fair amount of logic, it's easy to say that relationships are similar to a bank account and when someone takes way more than they give you should close the account. It's always so much easier in your head to think that than it is to apply that to people - especially if you're a person who was taught to speak up when something was wrong and to stand for what you believe in. If you're friend is racist, does laughing at his jokes or pretending to send a message that you're okay with that? If someone thinks everything you do is wrong and spending time with them turns into a Bible class or an attempt to change you, at what point do you void the relationship? If someone is constantly bailing out on you, do you still try to make plans?

I guess, long story short, I'd like to know more about how to make relationships work for me better and to try to limit the drama and stress that they seem to cause... maybe I could be sane then?

Friday, November 2, 2012

Day 2: Tony Snow was a smart guy #NHBPM

Today's prompt is to pick a quotation and run with it.

The secret of learning to be sick is this: Illness doesn't make you less of what you were. You are still you.
-Tony Snow

Oh Tony, but what if you fell ill so young that you didn't really have a 'you' to begin with?

I always talk about how I'm lucky to have fallen ill at such a young age, how I wasn't like a high school track star who fell ill or a marathon runner or an archaeologist in the desert climbing up to perilous caves for excavating. I was a little girl in kindergarten. In fact, I fell ill on November 14th, 1993. In a fortnight, my illness will be 19.

It's hard to think about the kind of person I might have been without this. Surely I would not have been picked on every day in school for being heavier, because I would have been able to be more fit. I wouldn't have gotten weird looks for having an ace bandage on for one day. I would have been able to participate more in PE. I would have finished graduate school and probably have a better job than the one I have right now. I'd feel a hell of a lot more useful that's for sure.

But I am me, the little girl whose sexual abuse started not too long after the onset of this odd illness - the little girl who was homeschooled and finished 'normal' high school with honors, with an international baccalaureate degree, and as a valedictorian. I think that was all related to my illness though. What do you do when you can't play sports? You spend time with friends and, if they're brainy, you all end up as valedictorians together.

I like who I am and I know that the decisions I have made have led me to where I am right now. It is always hard to wonder what I would have been though without my illness.

Thursday, November 1, 2012

My favorite thing about social media #NHBPM

November brings with it the start of National Health Blog Post Month and since I've been lax on updating things, I figured it wouldn't be a bad idea to have to write a post every day this month.

Today, I had the choice between 'why I write about my health' and the topic you see before you. Since I wrote about the former earlier this year, I figured I wouldn't bore you with it again :)

To me, social media has opened up a whole new life. At first, I used these things to stay connected with my extended family 2200 miles away and my high school friends who, six years after graduation, I still miss dearly. But as I did start to share the battles I go through with my illness - and the battles I've gone through since childhood - I was able to meet so many people who helped me to realize that I am not alone. For me, social media is an online health community. On twitter, I will rant about things with my family, wedding planning, and more - but the bulk of what I share all has to do with the health community that I am a part of.

Social media not only allows me the ability to watch my cousins grow up through pictures posted on facebook but also lets me ask questions about situations and in reality has probably saved my life. Back in July when I had C-diff (UGGHHHHH) really the only reason I got help was because a number of friends kept pushing me, kept checking on me, and really forced me to go - as much as you can from 9 hours away.

And even more than that, social media has given me a family that I did not have before. My extended family is full of people who share too much with each other and gossip and it ends up being a very catty situation. My social media family never judges me like that and they are always there for me, whether they're in England and I'm up at 4am or they're just an hour away from me.

Without social media, my only real rock in my support system is my fiance. I love him to death, but we all need more than one person to share woes and accomplishments with sometimes - and to push us when we'd rather not move.

So, with that, I love you all and you're awesome :)