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.

Day 14: D’oh #NHBPM

Posted on by Grayson

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.

Day 13: The Secret Garden #NHBPM

Posted on by Grayson

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.

Sleep Studies Suck

Posted on by Grayson

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

Posted on by Grayson

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.

FEEL THE BURN

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.

Day 9: Screaming bloody murder #NHBPM

Posted on by Grayson

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.

THIS DOES NOT LOOK LIKE A PRETTY FUCKING BUTTERFLY

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!

Day 8: How to approach writing about others #NHBPM

Posted on by Grayson

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.

Day 6: Taking the high road #NHBPM

Posted on by Grayson

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.