Category: NHBPM

Day 29: Goals for 2013 #NHBPM

Posted on by Grayson

“If I could accomplish anything/one thing in 2013 it would be…”

FUCKING GET BETTER.

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!

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

Posted on by Grayson

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.

Day 26: I’m a #rheum pimp #NHBPM

Posted on by Grayson

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!

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?

Day 24: The Holy Grail of Spoons #NHBPM

Posted on by Grayson

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

Posted on by Grayson

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

Posted on by Grayson

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

Posted on by Grayson

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?