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.

 

I wish I was still flaring

Having such a low sed rate is weird. It’s too weird.

I keep waiting for the other shoe to drop, but in reality I kind of more hoping it does.

My whole identity is based off of me being a fighter. If, for now, I’m winning the battle against Arthur, who am I?

It brings up all these emotional issues to deal with too – like above on the nature of self, past issues I’ve pushed down too long and now have to deal with, and more.

I’m no longer afraid I’ll randomly go into the hospital and never come out. I’m afraid of what happens if I continue to be better.

I’m in physical therapy twice a week, which is good but kicking my ass. Building up strength is something I’ve never been able to truly do from the ground up.

Part of me wishes, though, that I was running, that I could take out my emotional turmoil and anger on my body.

I guess that’s a form of self-harm, but it’s one that helps me process.

Or not – it helps me hide from processing anything, everything.

I wish I was still flaring. My body doesn’t know how to move. Like Lucy, I’m having to learn to do things all over again. When it was a constant back and forth, I was okay with it.

Now I have to see all the damage – mental, emotional, physical, dental – piece by piece.

I have to face the fact that my mother didn’t do jack shit for my body growing up, and negatively affected my soul.

I have to see my body the way it is and know that this is what I truly have to work with, that $20k of dental work and bajillions of dollars in mental and other physical work has to happen.

I could use weeks of PT and mental therapy alternating while I get my dental crap worked on. Work is already unhappy about the time I’ve taken off for PT alone – so much so I have to redo my FMLA paperwork to prove that I’m sick enough for this crap.

I’m doing what I’m supposed to do, rebuilding myself. No one got mad at the six million dollar man for recovering from all his surgeries and crap. Would it be the same if I were recovering from a more obviously severe and well known illness like the big C? Would my office mate be as angry? Would my supervisor or HR? I thought society was supposed to support this type of journey? Am I not inspirationy enough for the inspiration porn club?

I don’t know that I’m strong enough to face all the issues I’ve discussed but not fully dealt with – my mother, my molestation and sexual assaults, emotional and medical neglect, illness issues, feeling like I don’t do enough for others, inadequacies, triggering PTSD moments… These are not things one can address one at a time, not now, not without that distraction of pain.

As horrible as it sounds, I miss it. It was comforting. I knew standing and dancing at a concert would lead to angry knees. I knew sitting at my desk would piss my neck off. I knew I couldn’t do certain things like vacuum.

I don’t know who I am anymore.

It’s easy sometimes for us to climb up from so far in the rabbit’s hole. We swear we can see the top, and we keep pushing even when we fall.

Right now, despite the things I’m doing, it feels like I’ve finally hit that bottom and am really looking at all the steps to get way back to the top.

If and when I get there, I don’t even know that I will be able to climb out all the way… It isn’t what happens if I don’t, but what happens if I do?

 

A $20k smile

The above is an estimated for the bulk of the dental work I need done.

It doesn’t include work already done, or the root canal and crown already scheduled later this month.

It also doesn’t include the coverage or discounts I get with insurance.

When all is said and done, my mouth would have cost me around $20,000 total without insurance. My sister has it beyond worse and always has.

This is what having an abusive & neglectful mother gets you.

This is what not being taught to take care of yourself gets you.

This is what having multiple chronic illnesses gets you.

At least my mouth will always be a reminder of why I refuse to interact at all with my mother.

 

My mother is going to hell, and I’m fine with that

I’ve shied away from sharing much in the way of many details on how I grew up. It’s become apparent to me though that, like with my illness journey, I need to share as much as possible. It will help me to explain more about myself and my illnesses in the long run.

This isn’t just for me, but for others who have lived through similar situations. They need to know they’re not alone.

I was born to a single mother who was not ready to be a mother, as many mothers are. The fact that she was raised in an abusive household herself does not go unnoticed… and yet, it is not to be seen as an excuse either.

I remember being beaten during potty training for having accidents. To this day, I hate going to the bathroom when people can hear me because I feel as though I’ll be judged or harmed. Yes, I realize I’m 27. My brain doesn’t care.

My sister was born before I turned four, a product of a relationship gone wrong once again. My mother went into a deep depression for which she never got treatment post-partum. She was horrible to Kelsey from the start, ignoring her cries out of spite while pampering me. She tried to make me in her image, trying to dye and perm my hair by the time I was four years old.

By the time I was in kindergarten and had gotten sick, this gap in treatment grew. There is always a gap between a very sick sibling and the others, but this was different. My sister’s maladies were ignored altogether. Since my mother believed that the MMR vaccine caused the onset of my SJIA, neither of us received other vaccines under my mother’s care. From the time I was seven on, neither my sister nor I received dental or medical care of any kind – not when we had abscesses, wisdom teeth, or more.

That alone is enough to warrant the way I feel about my mother, that she would medically neglect an SJIA child… It gets worse.

In addition to the neglect, my mother and grandmother both beat my sister horribly. I’ve mentioned a few times incidents with a belt and my mother. They used her to do things like deep clean the bathroom by giving her positive feedback only on those things.

To add to that, they “ran” a daycare. When my mother was home, she did crafty things while I wound up molested by one of the other children. My sister suffered this repeatedly. As a result of all this, my sister acted out a lot. Negative attention was basically all that she got after all.

Oh, and we didn’t go to school. I was pulled out about a month into first grade and my sister never went… not until fourth grade. We didn’t get social skills and interactions with children our own age. By the time we were allowed to go to school (in my case, again), we had missed out on the foundations of an education.

They’ll tell you, my mother and grandmother, that they taught us.

They did jack shit.

I was given quizzes based on shows on the History channel for the first few months, written by my mother… who also had me write a paper on why Hitler was an amazing man.

I’m not kidding.

After that time, she stopped helping and I did everything to TEACH MYSELF from history to math to playing the piano. I did start in eighth grade doing very well, though interacting more with the teachers and smart kids than others. That was fine for me at least.

My sister was bullied constantly. She started speaking with a counselor about it and spoke too much about other things for my mother’s liking. We were told that we were going to be taken away from mother if sis kept speaking to this woman.

It’s a shame because it really did help her.

One day, my mother had me come with her to visit her boyfriend at the time two hours away. It’s worth noting that this man was married at the time he started dating my mother. She found out within five months and continued to date him, using the wife’s endometriosis as an excuse to keep going (which is just such bullshit as someone who knows and loves to many with that disease). He made a million jokes inappropriately about me and to me in front of her and she thought nothing of it.

This wasn’t the first time we’d visited, but my sister was at a sleepover so it was the first time I would visit alone with my mother. By the end of the night, she wanted to stay there. Instead of staying at his house, my mother got a ONE BED hotel room.

She had sex with him right next to me, without giving a shit about whether or not I was asleep.

I laid awake, freaked the fuck out and wanting to just die.

It got worse.

He sexually assaulted me.

It took me six weeks to tell her, long after bruises had gone. Her initial reaction was to question if I even knew what I was saying. That couldn’t have happened.

I laid awake that night too, crying again because my mother failed to believe me.

She kept fucking him long after she knew.

Sis saw him try to kiss me at one point when mother forced us to stay the night there again, this time while the wife was there with an elaborate story about being a coworker’s family. Only when sis shared did mother believe.

She still kept treating us like shit. The neglect kept happening. The emotional abuse kept happening.

At one point, my grandmother tried to hit my sister in front of friends I had. That gave me the strength to grab the phone and dial 9-1 – threatening to finish it off. Of course, that was to her an overreaction.

See, my grandmother was the worst offender in number of times she abused my sister. Once, I helped hide sis when we were very young. Grandmother asked me why sis was scared and I said something along the lines of ‘because you’re big and fat and scary and hurt her a lot.’ That was met with the same incredulity.

There is much more I could share especially into my teenage years – how my mother’s current husband and her commit fraud against the state of Wisconsin, how they’ve broken laws and then been upset when people rightfully need help, how this man feels the need to prove that he has a penis to anyone who might challenge his ideas, words, or thoughts.

This man, a tea partier in nature, has pushed my mother to live up to the worst of her potential. She began to be emotionally abusive even more to my sister’s daughter shortly before sis & fam moved out of that house.

I refused to see sis stuck there. I refused to see Missy grow up as we grew up.

So what does this all mean for right now?

I have 10+ medical conditions, almost all of which I’ve had for my entire life but am just finally getting taken care of. I’m dealing with structural issues with my body that could’ve been prevented, as is sis.

Sis and I need thousands upon thousands of medical and dental treatment. I’m lucky to have a good job with adequate insurance. Sis does not.

We both need and have needed a ton of therapy due to our anxiety, depression, and post-traumatic stress disorder from growing up with our mother.

This is a post that is all over the place. I know it may not make sense to some or all. After today, after sis needing emergency dental care that will cost far too much for her, I couldn’t wait anymore. I needed to get this out and get so much of this told.

If my mother is reading this despite the cease and desist letter sent to her, I hope that she knows how horribly she screwed up. There are many things I hope for her, but they’re all negative and not the types of things that one should share aloud about another human being – even if they’re completely inhuman and inhumane in all action and thought. I know that I’ll never talk to her again, but I knew that when she uninvited herself to my wedding. I also know that she won’t care about anything I say, using that same old adage about me exaggerating and misunderstanding everything.

But I know the truth about things that happened. Now, you do too.

If you’ll excuse me, I have cheesecake and wine to finish.