Get Freaky Friday: link roundup & more on #ChronicSex

Are you getting married but can’t do regular wedding rings? Check out these alternatives!

Mental health issues can be crippling. If you’re in love with someone dealing with anxiety or depression, definitely read up on them. It may surprise you when you learn that your partner’s anxiety is why they work so hard or just how consuming depression can be.

Both of those can cause very real and awful physical pain too, so brush up on ways to support your loved one through that.

Making sure that you follow the six steps laid out by Arthur’s Place – communication, picking your moment, preparing your body, foreplay, positions, and confidence – can make all the difference. So can sex toys!

Mariah is one of my favorite people, hands down. She wrote this great piece back in 2014 about how to initiate a conversation with your doctor about sex. It’s a must read! She also has written great pieces about scheduling sex, how RA can affect your sex life, how to talk with your partner, and how to improve your sex life.

No matter your condition, you can have a great sex life. Rachelle Friendman lives with quadriplegia and still does! She also proves that you can still look super sexy, no matter what. After all, Oracle/Barbara Gordon from Batman has historically been sexy and disabled.

Beauty & confidence start from within, so make sure you work on your self-love & self-care.

There has been a standard in the media regarding depicting female versus male pleasure. Many movies that show females orgasming, etc, get NC-17 ratings instead of the R ratings movies showing men cum get. Perhaps, though, this is changing with Magic Mike, 50 Shades (BARF, but okay), and other films along with strong feminists who embrace their own sexuality like Nicki Minaj.

Speaking of orgasms, here are 23 facts about them that you never knew.

Idolizing virginity & purity and shaming sexually active youngsters does not do anyone any favors. In fact, those comparisons to chewed gum do tons of mental damage, especially when you consider that a large number of first sexual encounters are forced in one way or another. We should, in all honesty, begin sexual education far earlier than we do.

Come enjoy the cuddle sutra!

Oh, and by the way…

 

I am not my PTSD

I am not my PTSD.

It makes it harder to be me, though, to participate in the ‘real world.’

There is no back button to avoid the trigger, no fast-forward button to make time go faster, no play button when I feel stuck.

There is no pause button in real life to easily push when you’re triggered at work, playing with your pets or niblings, at home, during sex.

I cannot tell my niece to stop everything. I cannot tell my pets to stop needing me. I cannot tell work that I need to binge on Netflix comedies instead of being stuck in a seven am meeting with several doctors.

There are times I can’t be as close with my niece, because she is the spitting image of my sister at that age. Sometimes watching her be silly and have fun and be safe reminds me of the things I couldn’t do to help me sister not be beaten, assaulted, put down every day of her life.

There are times when I can’t even let my husband touch me, times when him brushing his hand against my arm isn’t just painful from my fibromyalgia but causes a remembrance of an assault.

There’s no pause button in real life, no way to go back and say I need a moment. We all want explanations. Explanations are great, but don’t make the person explaining feel any better.

My PTSD is the thing that is probably the worst in my life. I never know when it is going to hit and there are few coping mechanisms that I can use to combat it. Sure, I can pull up Netflix and watch The Unbreakable Kimmy Schmidt at work when I have time. I shouldn’t, but I can. There are times when listening to music is helpful, getting out raw emotion or making me just want to dance.

There are times when being held by my husband, playing with our pets, talking with my sister, playing with my niblings… where these all do more harm than good. No one should have to live that way.

By the way…

 

My illnesses make it hard to do my job, but not in the way you’d think

At a not-so-recent meeting at work, I was put in a very awkward position and now I don’t know what to do.

I can’t go into a lot of the details, but some people in the meeting were speaking ill of someone in the political scene by comparing them to children needing special education… and laughing uproariously about it. I didn’t laugh, but I also said nothing.

At other meetings, there is little involvement from patients. I’ve tried to advocate strongly for it, but things already move too slowly or we’re not at the place in the process yet.

Don’t get me wrong. I work with some amazing people, and many of them love the work I do on patient things and health activism. But that doesn’t change the fact that there are others who don’t get it, who turn around and use conditions of patients they see every day to mock someone else, and then don’t get that it’s inappropriate.

Sometimes that translates to having a really hard time doing my job because of it and I don’t know what to do.

Issues of job security make it so that I want to keep my mouth shut. My entire being is screaming at me for saying nothing. How is it that these doctors I see far more often than my own can make me feel so inferior? What am I doing here in this job? How can I be an ePatient when I won’t speak up for others in all aspects of my life?

This meeting was pre-MedX and, honestly, if this happened again, I would speak up now. I’m sure docs would think it’s not appropriate behavior to do so, but I also don’t care so much now. People matter, especially in healthcare, and if you’re picking on people with ableism involved? Maybe you shouldn’t practice anymore.

Oh hey, you should join us for…

 

Political Rantings Regarding Refugees

Before I started NSSD, I used to write a more general blog. Since I was working on my undergraduate degree in religious studies, history, and politics at the time, I wrote a lot about the intersection of those areas.

I try really hard to not get into those subjects here, because I know how separating they can be. Trust me – it’s a part of why I have no relationship with my mother.

The recent attacks in Paris, France, have brought up xenophobia, racism, and religious discrimination across the entire world… but nowhere more than in the United States oddly enough.

France is actually increasing how many refugees it brings in. On the flip side, the US is trying to BAN refugees from Syria. Even those whose parents were essentially refugees like Rubio & Cruz are trying to say we don’t need to help these people.

It’s not enough to ignore the plight of the Syrian people – we have to actively not help them?

Mind you, this is happening as we start the holiday, feel-good, love-and-help-one-another season.

I know that as someone who isn’t religious, it is easier for me to see the hypocrisy. Let’s break this down a bit though…

We live in a country that:

  1. has a folkloric history of peoples emigrating here due to ‘persecution’ especially of the religious kind;
  2. is cited (incorrectly but that’s for another time) as being founded as a Christian nation;
  3. has a poem about inviting others less fortunate here for a better life from Emma Lazarus:

 

Give me your tired, your poor,
Your huddled masses yearning to breathe free,
The wretched refuse of your teeming shore.
Send these, the homeless, tempest-tossed, to me:
I lift my lamp beside the golden door.

The United States, the melting pot of the world, the savior to many, isn’t living up to our end of the bargain. And yet, we find the time to argue over how Starbucks having a non-holiday endorsing red cup is a war on Christmas and Christianity?

Dear GOP et al – YOU are running the war against your own religion.

So many of you live in the 1% that holds so much wealth.

So many of you run the corporations that employ workers in horrible situations overseas while complaining about job creation here.

So many of you turn people away from your religion by your proselytizing while forgetting to practice what you preach.

You want to be scared of Muslims? They’re afraid of the Daesh more than you are, because your lives aren’t directly threatened by Daesh (who, by the way, we helped create just FYI).

If you don’t want to help, you should probably turn over your iPhone, made proudly by the son of a Syrian immigrant. Maybe that’ll motivate you?

By all means, though, let’s not help people who are being systematically murdered and actually need our help…

After all, we have more overpriced crap made by sweatshop factory workers we exploit in other countries to sell for the over-commercialized holiday that is supposed to remind us to love and help each other.

 

A post for parents

Hey guys.

How are things?

I know I don’t always address y’all, and that isn’t cool. If you’ve read a lot on my site, you’ll know that I don’t really relate well with the whole parenting thing. I’d love to, you know, not feel like an orphan. Where’s a tardis to turn back time when you need one?

In my recent life as a guinea pig mom, I’ve started learning a lot more about mothering and just how amazingly difficult it can be to handle a sick kid. I know guinea pigs aren’t kids, but gosh, they really are my baby boys. They’ve each had issues that T and I freaked out over, made vet appointments, and loved on those boys a lot more than normal.

I’m not stranger to worrying about and helping with kids, having rushed to California earlier this year due to my then-newborn nephew’s congenital heart defect and resulting open heart surgery. He’s doing well now, but still. And his big sister is so smart. I think of them every day.

I can’t imagine what it’s like to deal with this all as a parent, from the practical matters of working or income with doctor’s appointments to the lack of pediatric rheumatologists forcing you to have long breaks in between visits you have to travel hours for to watching your baby be sick and yet so amazingly them.

So here’s a post for you, to recognize all the things you do and all the emotional crud you go through while you hide it to fight for your kids.

You freaking rock.

 

I’ve Pissed Off Lucille Ball’s Family/Licensing Agency

I just got off of a phone call with a man who works with the Lucille Ball estate. It was a phone call I could have gone without, mostly from his demeanor unfortunately. It was your standard older-male-to-younger-female-who-clearly-doesn’t-know-anything-at-all type of call.

Oh, yes, it was that pleasant, complete with the interrupting cow syndrome. Finally, the third time he interrupted me I called him on it and he at least was cordial in that regard only for the remainder of
the call.

How did we get here?

This all started when, on Thursday, the local ABC affiliate where I live put up an interview they had filmed with me in early October discussing my petition. MeTV also picked it up. By 4:30pm Friday, both the stories had been taken down and I wasn’t told anything.

I contacted MeTV via Twitter and I was told the family asked them to take down the story. They direct messaged me with some further information:

“Due to continuing discussion over Lucille’s condition, her family asked us to remove the post.”

“The specificity of her condition has not been confirmed by medical professionals.”

The phone call with the individual I mentioned earlier though came from my local ABC affiliate who kindly asked this person to contact me. They had received the following:

Please tell everyone this: there was no confirmed diagnosis of Lucille Ball ever having rheumatoid arthritis. She had some sort of condition when she was in her late teens but it did not continue throughout her life and she never had any symptoms nor did she take any medication for this debilitating disease.

They were also told that this is an “internet rumor” they’ve been trying to address… though they would be in support if Lucy did have it.

Below is an excerpt from Lucy’s autobiography Love, Lucy where Lucy shares in her own words what she went through:

One winter day, I came down with a bad cold that turned into pneumonia. I stayed in my room restlessly for several days, tossing with fever, but then hurried back to Hattie’s. I needed that thirty-five dollars a week.

I was standing on the dais for a fitting when suddenly I felt as if both my legs were on fire. The pain was excruciating. Hattie kindly sent me to her own doctor, around the corner on Fifth Avenue. He told me that the pains were arthritic, possibly rheumatoid arthritis. This is an incurable disease which becomes progressively more crippling until the sufferer ends up in a wheelchair for life.

“You must to to a hospital at once.” Hattie’s doctor told me.

I did some rapid calculations. “I only have eighty-five dollars to my name,” I told him.

He then gave me the address of an orthopedic clinic up near Columbia University. That night I was waiting my turn for three hours while the city’s poor, some of the horribly crippled, went in and out. It was ten o’clock before my turn came.

The clinic doctor examined me and shook his head. I was by this time crying and half fainting from the pain. He asked if he could try a new and radical treatment, some kind of horse serum, and I said yes, for God’s sake, anything. For several weeks I stayed in my room, and he came and gave me injections; finally, when my money ran out and my legs still were not better, there was nothing left to do but go home to Jamestown… Daddy was back home again, thank goodness. He lectured me on taking better care of myself, and DeDe, although still working all day long herself, devoted evenings to massaging my legs and cheering me up.

For the first few months I was in such pain that time passed in a kind of blur. We kept up the horse serum injections, which were then considered a highly experimental, even last-ditch experiment. I was a guinea pig who survived, and the pain gradually subsided. Finally the day came when, with the support of Daddy and the doctor, I shakily stood up. We found that my left leg was now some-what shorter than my right leg.

It also pulled sideways, and to correct this, I wore a twenty-pound weight in one of my ugly black orthopedic shoes. The metal weight felt cold against my foot, and the pain as I clomped around was like needles…

In the late spring from 1930, I was still convalescing at home, my legs thin as matchsticks…

[Ball, L., & Hoffman, B. (1996). Love, Lucy. New York: Putnam. pg 46-48. Bolded parts are my own and not Lucy’s.]

Lucy modeling for Hattie Carnegie

This was not osteoarthritis in nature due to it disappearing. I don’t expect the family to know everything Lucy went through but when one of the children wrote the forward to the book, I expect that they address the contents.

I asked the gentleman I spoke with about why there had not, instead of completely removing the stories, been a comment made on the story from the family, as they apparently let the local ABC affiliate I interviewed with know that they would love to have included this if only Lucy actually had it. I got a canned response on how he would pass along my input for future use.

This could be a great PR piece, showing that the estate cares about representation of chronic and invisible illnesses, that the family listens to people even if there isn’t agreement on what happened. Instead, I get to write this scathing blog post about how very rudely I was treated.

I was told that the stories won’t be allowed back up by any means, comment or no.

I know I can’t really change their minds on any of this.

I obviously have a few problems with all of this.

  • Why was I not contacted about this initially? The person I spoke to said first that my contact information was nowhere and then, once I said that it would’ve been easy to find, that contacting me wasn’t the priority but that getting down the stories was. Still, once that happened, why wouldn’t you go to one of the sources of the ‘misinformation’ you’re trying to correct?
  • I brought up that, regardless of whether or not it was rheumatoid in nature, Lucy herself has said this was arthritis as you see above in Lucy’s own words. The person I spoke to apparently didn’t know the autobiography existed, which is strange, but also was still adamant that Lucy didn’t have arthritis at all without looking into it at all.
  • Let’s pretend the above excerpt from Lucy’s autobiography didn’t exist and this was an internet rumor… Why would the family not use this opportunity to address it as such? Why is having this illness so bad that they can’t just issue a statement one way or another?
In any case, you would think that the estate and/or the family would want to clear the air about all of this. I challenge them to do so. If Lucy didn’t have arthritis, staying quiet is not going to do anything to stop this. If she was, a confirmation would do a lot for a lot of people. If the family doesn’t think it’s anyone’s business, then they should say that too.
Normally I would say that children shouldn’t be involved in this type of stuff, but knowing that Lucie chose show business like her mother, I’m a little less sympathetic. She knows what it’s like to have fans and to need to address issues in public right? You would think she’d clear the air.
I would hope that the family will listen to the outcry from myself and others in the chronic illness community and clear the air in a way that isn’t creepy and doesn’t involve being scoffed at by some old dude that doesn’t even know enough about Lucy to be running the estate.
I hope to stir the pot enough to get some kind of statement. 
I’m not going to be silenced on this subject I can assure you.
I will let Lucy speak for herself until such a time comes that the family actually issues some kind of statement on this issue instead of censoring websites and requesting that organizations take down content that the family doesn’t agree with… Honestly the fact that they swooped in and did so is a scary commentary on our media – one that I won’t go into, but that certainly needs to be addressed because I want to sit in a dark room with a tin foil hat on right now.

 

YourCareMoments

Have you heard of this new site called YourCareMoments?

It’s, like, kinda awesomesauce.

And by kinda, I mean lots. Why? YOU GET PAID to do surveys based on your illnesses that help to further research and understanding of what we go through.

What’s not to like about that?

The sign up process is super simple – you just sign up here and give some basic information about yourself.

Not all illnesses are in there yet, and not all illnesses that they have are getting researched, BUT they probably will shortly!

Every so often, you’ll get emails like this one asking you to participate in a survey that YourCareMoments thinks you’ll be eligible for. The nicest thing is that, unlike some survey sites where you do this long 40 minute survey only to be found ineligible, these questions are designed for you to know if you’re right within the first TWO QUESTIONS.

The money you get depends on the length of the survey, but the ones I’ve done have each gotten me about $7 for 5 minutes or so of questions. They send me a link and I can deposit that into my PayPal account.

I’ve used that money to help other chronic illness people have enough gas to get to appointments and such. It helps me feel good to be able to give back like that.

So come join me in getting money by participating in research and helping to improve the lives of others living with chronic illnesses!

 

Happy birthday Arthur

Normally, my birthday wishes to Arthur wind up with me flipping it off.

This year, I’ve been grieving Arthur not being around as much.

It’s a catch-22 isn’t it? Because I don’t want to be sick – but I’m also missing a huge part of me, the biggest constant throughout the last 22 years of my life.

Not having contact with my family only intensifies that grieving. Arthur not being around is like losing someone close to you. He has been my best friend for so long, out of necessity more than choice, but still.

Many of us talk about this idea that having a chronic illness is like having a third unwanted person in your relationship.

Do I appreciate feeling better and being able to do things? For sure. But I miss him.

I don’t miss waking up with stiff joints, but I miss when he would gently wake me up and spend time with me in bed.

I don’t miss him sidelining me, but I miss knowing how my days were going to go.

I don’t miss staying home from work sick and in pain, but I miss watching Let’s Make a Deal with him while we eat comfort foods.

I’m learning how to walk again, with joints not constantly angry. I’m learning how to move, how to exist, what I look like without constant rash. It’s like a quarter-life crisis.

Perhaps part of the problem is knowing that, when I’m alone, now I’m truly alone… alone with the feelings that I still have a hard time processing… alone with the memories of growing up and being abused… alone with the self-anger I’ve felt from my PTSD, being angry that I can’t just turn it off… being mad at choices I’ve made or things I didn’t do right.

So much of the zeal I have for the things I do has been because I *knew* I would never be better. Now I sometimes find myself struggling to finish things up (like emails – sorry!).

We talk so much about how to try to be well with chronic illness that there is so little out there about what happens when we get there. I have heard those ideas echoed in cancer communities as well – what do you do when you’ve beat your foe, even if just for now?

In any case, Arthur, my friend, this body functions better without you, but this brain is having a hard time adjusting.

My petition for Lucy got me on the news!

You may remember my petition to get Lucille Ball’s rheumatoid arthritis shown in the upcoming biopic.

The week after MedX I sat down with WKOW, a local news station, to discuss why this is important to me. It aired today!

Come check it out – you also get to see where the magic of writing happens for me as well as a pretty cool duck picture we picked up this summer.

EDIT: Please note that after this post went up, WKOW and MeTV (who had also done a write up) were asked by the Lucille Ball estate to take down the stories. I am awaiting further conversation with them on the petition and what is going on. I will update once I have all the information. – KS Nov 16, 2015

Medical Monday: how to file a grievance with a health care provider or system

So much can go wrong when we’re interacting with anything involving our health. Doctors and health care systems are, sadly, not immune from making mistakes. This is something that we chronic patients have to understand in order to be fully engaged in our care.

Perhaps you went in with an abscess that a doctor saw as a pimple and laughed like like I have.

Perhaps you’ve shown up in an office green and obviously ill only to be dismissed.

We’ve all likely been there. It’s enough to leave you sick but now you’re upset with your care and your concerns are not being heard.

What do you do?

One thing that some people feel comfortable with would be to speak with another member of the staff where you receive care. Perhaps the doctor was the offender so you might want to talk to his nurse, or vice versa. You might even speak to the clinic manager, which is kind of like the head nurse in some systems, or the head doctor or dyad.

Another idea is to contact someone else in charge of clinic operations. There is often someone who works more of a 9-5 that helps coordinate maintenance and such, but can hear complaints as well. You can sometimes find this information, though it isn’t always readily available.

You can definitely go through patient relations. Depending on the size of the system you’re involved with, this could take a while if the offense isn’t super huge and egregious. There are sadly some systems that don’t necessarily care as much about one patient’s experience and so may not be helpful with this route.

One of the more popular things to do, though, is to contact the health care system via social media. This often gets a faster response even in slower systems because you’ve now made the complaint public. By doing that, you put pressure on the system to acknowledge the issue and work with you.

This route isn’t for the shy or reserved. Unfortunately it can take a bit of back and forth to really get help even here. However, as I said, the system is then under pressure to perform.

This can be true for insurance companies as well as we see here with Anna, fellow SJIA fighter and all around awesome person, trying to get access to Orencia.

The bottom line is that, in order to have your complaint heard and acted on, you have to be loud and assertive enough to do so.

Not sure that’s your thing? It might be worth analyzing why you think that. If it’s because you don’t feel you’re worth the fuss, please do yourself a huge favor and read up on self-care and self-love.