Year: 2012

Day 25: Patient advocacy, always evolving #NHBPM

Posted on by Grayson

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)

 

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?

Darth-ritis

Posted on by Grayson

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.

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 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 the 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

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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 🙁

Day 23: Hey doc, listen up! #NHBPM

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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 🙂

Day 22: Danka #NHBPM

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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.

Day 21: Insane in the membrane #NHBPM

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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.

Day 19: Traveling with Arthur #NHBPM

Posted on by Grayson

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!

Day 18: The bedside manner police #NHBPM

Posted on by Grayson

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?

Day 15: Medical companies should use social media #NHBPM

Posted on by Grayson

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.

Happy birthday Arthur!

Posted on by Grayson
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.