Lupie problems

So my hives are completely out of control again, and I got hit so hard with fatigue this afternoon that I had to leave work early. I came home and slept for 3 hours.

I’ve been trying meds again that didn’t work when this happened last fall – the difference being that by the time I got to an allergist last October, the ER had already put me on prednisone, and that complicated things. The hope was that the antihistamines would work this time. They’re not so far, and I’m not hopeful.

I’ll likely end up back on Xolair, which I can’t afford and need to apply for aid to get. I got aid last time so not worried about that.
What does worry me is that it seems like I’m going to need the worst case scenario drug. So I think things like, what if the lupus never lets up off attacking my skin and I become a long-term Xolair patient? What if Xolair stops working? What about the side effects? It makes my hair fall out. 

This is about the point where I start to get despondent and wonder how the hell I’m going to be able to be a grad student and work full-time and have Lupus. So this is also the point where I’m grateful for all the lupie and chronic illness blogs I read.

Seriously, these bloggers give me life. Like, none of us asked for this shit, but here it is, and we have to keep living. We have to do our best to not let it totally derail us. I hate warrior rhetoric as a rule for chronic illness or bad stuff like cancer, but at the same time…I have these inner reserves of tenacity that I need to tap into. I have a lot of fight in me, and that’s exactly what I need.

People who share their experiences do help me. On days like today, it helps to be reminded that its okay to not be strong all the time. It helps to be reminded that we all have days like this.

It helps to hear them say, “Its hard, and we all get discouraged sometimes, but don’t give up.” It helps to have encouragements and positive affirmations.

I feel awful today, but I’m not going to wallow in it. I’m frustrated now, but tomorrow morning, I’m getting up and I’m dealing with this damn flare. That means trying some med combos and being patient for the next few weeks to give them a chance to work. 

Ultimately, I think I’ll end up back on Xolair. So, okay – there are two levels of aid to apply to. I got that. I’ll need monthly injections and I need to get them at 1pm – my boss will understand, so I’ll talk to him. I have plenty of Cortisone 10 to get me through the day, so that’s covered.

The fatigue, well…I need to keep recognizing when my body needs to rest. My boss has told me I can go to reduced full-time if my health requires. I’m trying to avoid that…but it’s there if I need it. 

I don’t like this…but I got this.I can do this. 

Finding yourself in the words of others

Many connoisseurs of literature and poetry have waxed philosophical about how art imitates life, and how we find ourselves in the art we create. But as I get older, I find that I don’t just recognize who I am in the words of others, but also who I’m not – or not anymore.

I’m rereading Jeannette Winterson’s memoir called Why Be Happy When You Could Be Normal?, which was gifted to my by a friend several years ago because he knew I’d connect with it. I read it through for the first time in a matter of hours, underling sentences as I went that were eerily familiar – the sorts of sentiments that I felt in my gut because they weren’t just sympathetic, they were truths. But in between my outlines are vast expanses of words that I can’t relate to, words that describe experiences that I’ve never had and never can have. It’s the blending of the two that makes this book so attractive – how so many poignant fundamental truths of my experience are being described by someone whose experiences, while similar, had enough differences to make the discovery of the startling similarities that much more exciting.

I returned to that book this week, because I’d been meaning to for a while, and it seemed like time.

This book is an account of Winterson’s childhood and coming of age – she was adopted by born-again Christian parents, had a father who was largely absent, and a mother who was distant and strange. It describes the effects of not being loved, and how realizing that she was a lesbian compounded the issues she had with her mother, that ended in her leaving home at 16. By 25, she was an award winning novelist.

Continue reading “Finding yourself in the words of others”

I’m allergic to outside.

So I got some allergy testing today that the docs were unable to do when all my skin-related issues started up due to the drugs I was on at the time.

I learned that I’m allergic to half the goddamn state. Like, pretty much everything that grows or lives on or around my property, I reacted to. So now I’m sitting here like…

flowers

Not really, though. I love flowers, and intend on continuing to leave my house on occasion, despite the fact that I’m basically allergic to outside.

Oh, and the hives? They’re mostly likely not connected to the allergies. The hives are most likely immunological. They say “most likely” because they can’t definitively prove it, but there’s no longer question of the hives possibly being an allergic reaction. They’re immunological in nature.

lupus

Damn Lupus! *shakes fist vigorously at immune system*

So I’m back on two meds to help control the hives. Affordable meds. We’re trying to avoid going back to the $300/mo injections if we can because no thanks. Crossing my fingers that the affordable med combo will get the hives under control this time. It failed to last time, but the hives were much worse, partially because the prednisone taper failed twice. But that happens with pred…it’s hard to get off of, took me three tries…so the hope is that these other meds will work on their own now since I did mange to get off the pred, and have been off of it for 6 months.

I’m not treating the allergies at this point, because they’re not actively bothering me. Just have to resist the urge to roll naked in the grass or lick tumbleweed or sniff rabbits. (In other words, there go my weekends.)

I used to love summer.

I’m not loving this whole fatigue triggered by high heat thing. I ventured out of the house both yesterday and today, which resulted in me having to lay down when I got home each time. Summer is hard on the immune-impaired. I’m not a big fan of being cold, but I find I’m at my best, energy-wise, when I’m slightly chilled. We’ve had a steady streak of 90 degree + days here in Colorado lately, along with a lot of extra rain because we’re also experiencing climate change…so it’s been hot and slightly more humid than I’m used to. And my body does not like it one bit.

However, I did manage to score some magical jewelry for my pains…

20160724_134527

They’re probably not actually magical, but they remind me of something magic. Or perhaps the fatigue is making me more whimsical than usual.

So, having #Lupus is fun

I’ve been joking that I think the Lupus is bored, because it’s come out to play. I had an issue with hives and swelling last fall and into this year that could only be controlled with a drug called Xolair. They took me off the Xolair in May, and I was fine until last weekend.

The hives are back. The joint pain is slightly worse, I’m fatigued as hell, and I have no tolerance for heat. Which sucks because I hate air conditioning, and I used to love the heat. Now it wipes me out. It was 96 in Denver today, and I was outside a bit after work. I had to lay down when I got home, and I’ve had a hard time shaking off the fatigue. 

Right now I’m fatigued. My brain doesn’t want to function. I have hives on both legs. My knees hurt. And just for extra fun, I’m also having weird reactions to several antihistamines. 

I start PhD level coursework in September, and all I keep thinking is…can I do this with Lupus? 

And you know, I don’t know what’s coming. But here’s what I do know – the Lupus may cause some frustrations and may present some challenges (have you ever tried sitting through a graduate level stats class while covered in hives?) What it won’t do is stop me from trying and fighting and persisting. (I got straight A’s last year, hives and all.)

I accept that Lupus slows me down. But I’m going to do whatever I can to keep it from stopping me entirely. 

That little inspiring message aside, if anyone’s looking for a good investment, invest in the company that makes Cortizone 10. I swear I’m increasing their revenue. I wish they sold it by the tub. I want to take a Cortisone 10 bath. (DAMN these hives!!!)

(Also, don’t get Cortisone 10 in your eyes. Just trust me on that one.)

What happens to black people in this country is beyond fucked up

Every time a black person gets shot for being black I’m full of rage over it, but what happened to Charles Kinsey inspires a special sort of rage.

For those of you who don’t live in the U.S., Charles Kinsey is a behavioral therapist who was trying to help an autistic patient who had gotten away from a group home. The autistic man had a toy truck he was playing with, and Mr. Kinsey was trying to get him to safety.

Part of the problem is that we live in a society encouraged to be hypervigilant, so some idiot called the cops saying there was a man with a gun threatening suicide. How you mistake an autistic person playing with a toy for a man with a gun threatening suicide is beyond me, but welcome to ‘Murica.

When Charles Kinsey was shot, he was laying on his back on the ground with his hands in the air. He had already identified himself as a therapist and the other man as an autistic patient. He specifically told the cops that the object was a toy truck, not a weapon.

He was LAYING ON THE GROUND. He did NOT HAVE A WEAPON. He had EXPLAINED THE SITUATION. He was CLEARLY not a threat. He was the one trying to help the autistic patient who was the person the cops were called about.

But Charles Kinsey was shot anyway.

He was then handcuffed and left bleeding on the ground for 20 minutes before receiving medical treatment, and the autistic man was shouted at to lay down on the ground as well. He resisted a bit, because he’s autistic and probably was very confused about the situation.

Luckily, Mr. Kinsey did survive and is expected to recover.

But WHAT THE FUCK. That cop didn’t feel threatened. Charles Kinsey was clearly not doing anything wrong, nor was he endangering anyone. He had explained the situation, but all the cops saw was a black man. So for no reason whatsoever, except that he was black, one of the cops shot him.

And this isn’t the first time that a black person shot by police has been left laying there, bleeding and handcuffed, while the cops just stand around and wait. They don’t administer First Aid, they show absolutely no compassion whatsoever. They just fucking stand there. Like the cops in Cleveland did after shooting Tamir Rice – and in that case, they even refused to allow the family members attempt to help and comfort a dying 12 year old boy who was killed for playing in a park while black.

Amazing how cops don’t feel threatened by violent white criminals and manage to take them into custody without incident, but black people who are unarmed and cooperative get shot simply for being black. Or get shot without any sort of attempt to try to figure out what’s happening, or get shot even when they’re cooperative and calm.

Black people aren’t the problem. Racism and hatred are the problems.

Why am I writing so much about narcissism?

Well, I mean, it’s timely considering that this has been the election year from hell.

But also, I’ve been in the closet about this for years. Glossing over the childhood I had, attempting to be polite to people who were abusive to me for the sake of maintaining a tenuous relationship with people who can’t stand me and who I mutually don’t much care for.

A few months ago, this thought started tugging at me – the idea that I don’t think I should accept being around people who barely tolerate me. Quite frankly, I think the only reason they started worming their way back into my life is because they’re getting older, and they’re terrified of what that means. I think they were just keeping me around in case they needed me someday.

I deserve better than that.

So I’ve raised my standards. No more tolerating people who I have no respect for and who have no respect for me. I was emotionally/psychologically tormented as a child, and into my young adult years. I had to do a lot of work to recover from that, and I am DAMN proud of the person I am today. I love myself, and that’s not something I was always able to say.

More childhood experiences, as well as the impact of my childhood, will be coming. Because even though I’m in a good place, I often talk to my husband and our therapist about how it’s an ongoing process. (He was abused as child as well; oddly enough, that’s what we bonded about on our first date.) We’re both way better than we used to be, and we’re both more aware of behaviors that stem from having been abused children, but it’s still something we have to continue to work on. Adults who were abused as kids always have that abused kid inside them, and that kid needs a lot of love and care and reassurance.

But I promise I’ll temper the child abuse posts with other sorts of things, too. It’s just sort of exploding out of me right now because it’s the first time that I really feel *free*. My abusers still read this blog, but I don’t care. I have nothing to hide, nothing to be ashamed of, and I won’t be intimidated into silence.

Nor will I continue to support the notion that because I share DNA with people that I owe them something. I don’t owe them anything.  :-)

The story of the red jacket

Narcissists have a constant need to control you via money. So many fellow narc survivors report this that I think it’s fairly safe to say that it really is a particular trait of a narcissist that they’ll do their best to make you financially dependent on them, and then dangle it over you. And almost everyone in my support group has eerily similar stories about narcs and money.

To me, being a neurotypical thinker, it’s like…WHY would you want someone around you who was only there for your money?

And I think the answer is that a normal person wouldn’t. Normal people want to be valued as human beings, rather than for their money or possessions.

Narcissists are wired differently. Narcs want to surround themselves with people they can control, and they see money as an easy way to control others. That’s why so many tend to be obsessed with money.

But like most victim of narcissists, I eventually overcame my narc’s ability to control me. Allow me to tell you the story of the red jacket…

Continue reading “The story of the red jacket”

For anyone out there dealing with abuse by a narcissist…

I’m in an online support group for people who have grown up with narcissistic family members. One theme I keep hearing over and over, across age groups and cultures and genders, is people who question whether or not they’re actually the problem.

See, there’s this thing called gaslighting, which is the process of manipulating someone into doubting their sanity or memory of how things occurred. Narcissists are pretty adept at this – they turn everything around on you, tell you constantly that everything is your fault, make themselves out to be the victim, and sometimes flat out deny that they said or did things you know they said or did.

So here’s my message for anyone who feels abused or mistreated, but at times wonders if maybe they’re actually the problem…

Continue reading “For anyone out there dealing with abuse by a narcissist…”

Bathers by Renoir & why artists have always portrayed the human form accurately

I was lurking around a subreddit where some commentary got off topic, and someone make a comment about how aside from Rubens, who “probably had a fetish,” no other major artists ever depicted any bodies other than the thin, “fit” bodies we so idealize today.

That’s…just not true. I give you Renoir, a name that most of us should recognize…

Continue reading “Bathers by Renoir & why artists have always portrayed the human form accurately”

If you want to understand my childhood…

If you want to understand my childhood, read this article from everyday feminism and pay special attention to #5 and #6.

The article is about seven ways that adults mistreat children. #5 states that:

Children do not have to withstand parental harassment or abuse, whether it be physical, sexual, emotional, psychological, spiritual, manipulation, gaslighting, aggressive, or passive-aggressive.

#5 also points out that when a parent does abuse a child, it’s often excused as an act of love. Ever heard “tough love”? Yeah, that’s a phrase that is used to excuse all sorts of bad behaviors. Your parents told you they wouldn’t love you if you didn’t get straight A’s? It was just tough love. They just wanted you to do your best. Your parents called you names and tore you down? It was just tough love. They just wanted you to be a better person. *eyeroll*

The fact is, sometimes parents/caretakers don’t love you. Sometimes they’re just abusive assholes. Being someone’s parent/caretaker doesn’t give you the right to treat that person like shit, and “tough love” often isn’t really love at all.

#6 is about how some parents use their ability to make rules for their children as a way of wielding power over another human being. It states:

Children are not to be given rules as a way of wielding your power over them, but as a way of teaching them how to not unnecessarily or unfairly step on the toes of others in the world.

It also makes a great secondary point: “Fear doesn’t glean respect. It creates non-consensual submissiveness at best, which has nothing to do with respect.” This is a point that my own family members appear to not grasp. You can’t demand that someone respect you, and creating an environment in which your children are scared doesn’t mean that your children respect you. It just means they’re afraid of you.

Of course…there are some parents who delight in scaring the holy hell out of their children. They get off on it. One of my caretakers growing up used to brag about the fact that I was fearful of her. Now that I’m an adult, she can’t figure out why I don’t respect her. She laughably concluded that it was because she was just too nice to me – in her mind, if I had been punished more and made more fearful of her as a child, then I would be loving and loyal and respectful.

You can’t scare, punish, or abuse someone into loving and respecting you. If you think you can, then you need help.

Point #7 in this article is also a huge pet peeve of mine – adults who feel that children have less rights than they do. I mean, no, children don’t have the right to vote or drive a car, but they are entitled to basic human rights. Including privacy, which is something I see a lot of my peers struggling with. Oversharing on social media is one way I think children are grievously violated by parents.

But there was no social media when I grew up, so this issue manifested itself by me simply being told that I had no right to do certain things. In particular, I was told that I didn’t have the right to be angry. At times, I was even told I didn’t have the right to have certain facial expressions that my caretaker didn’t like.

The fact is, children do have the right to have feelings – they even have the right to be mad at their parents, or be upset about a decision that their parents made on their behalf, and they have the right to express that. It’s not a parent’s place to dictate to a child how they’re supposed to feel – it’s up to parents to help them understand how to manage and express those feelings in a healthy way.

I mean, of course a child will be upset when you have to enforce a boundary or have to teach them that actions have consequences. Of course they’re going to be angry and feel that you’re being unfair. Of course they’re going to argue with you. Of course they’re going to see how far they can push boundaries and test how much they can get away with. And guess what? They’re probably going to lie, too. Even excellent parents are going to upset and disappoint their children. Even excellent parents are going to have children who sometimes lie to escape consequences. That’s what children do.

Telling a child that they have no right to feel certain things is a violation of that child’s basic human rights, and is an indication that you don’t regard your child as being as fully human as you are. Children aren’t less human than adults – they’re just smaller and less able to self-regulate. They need boundaries and guidance and yes, they should experience age-appropriate negative consequences when necessary. But no child should ever be abused.

Anyone else have these experiences? I’m always curious to hear how other people have dealt with the long-term effects of bad/abusive parenting.

__________

(Please note that this is a safe space – I will delete any comments attempting to defend or rationalize the abuse of children.)

How to understand ‘police deaths by race’ statistics (or, why police killings are absolutely racially motivated)

The data analyst over at CrankyDataAnalyst demonstrates that even though more white people are killed by police every year than black people, you’re still more likely to be killed by police if you’re black. Click here to read her explanation of how this seemingly contradictory statement is absolutely true.

Body positivity, art deco, and a little bit of obsession

There’s a book I’m rather fond of called The Last Nude by Ellis Avery. It’s a fictional account of an affair between painter Tamara de Lempicka and one of her models.

Though the story is fiction, Lempicka herself was real. She lived and worked in Paris during the 1920s to support herself and her daughter after a divorce. She was a known bisexual.

The painting referred to a lot in the book is this one – La Belle Rafaela.

La Belle Rafaela Tamara de Lempicka

Rafaela, in the novel, is a young runaway turned prostitute turned model who becomes involved with and falls obsessively in love with Tamara. In reality, Lempicka did paint this particular model more than once, but aside from her first name, no one knows anything about her.

Continue reading “Body positivity, art deco, and a little bit of obsession”