Category: NHBPM

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.

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.

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.

Day 5: Soapbox on self care #NHBPM

Posted on by Grayson

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.

Day 4: My bare necessitiees #NHBPM

Posted on by Grayson

“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?

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

Posted on by Grayson

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?