5 years gone

Five years ago my stepfather Pat took the truck to Steeler Heaven. It was sudden, but not surprising, when he left us. His heart had been giving him shit for a little while and you could see it as he moved around. When he died, I was glad he wasn’t suffering anymore. It’s not how he wanted to live and everyone who knew him understood that.

It certainly threw my mom for a loop. I have no idea if she was in denial about his health or truly didn’t see it. It’s taken her a long time to get to an okay point. She’s got the dogs to keep her company and occasionally we joke that Pat’s messing with them, making sounds only they can hear so they bark like 17 mail carriers are coming to the door.

I still miss him every day. He never got to meet Mr. Lyndsy, which is exceptionally sad because they have a lot in common. They both love football (just not the same football). Passion for a sport is apparently the same, regardless of the sport. Mr. Lyndsy even has some of the same mannerisms that Pat did. I also think if Mr. Lyndsy were ever hospitalized, they’d also have to take the TV remote away to keep him from watching his teams play since the stress would drive the hospital’s monitors crazy.

I like to think that Pat would be proud of me for the choices I’ve made, for exploring new parts of the world, and doing the best I can do given the situation I find myself in. He knew all about pain affecting how you live and how much it sucks. He’d probably tell me to go easier on myself and just do what I can since I’m no good to anyone if I’m totally wiped out and stuck in bed to recover.

I’m sorry he didn’t get to spend more time with his granddaughter or meet his grandson. Pat was basically an overgrown kid himself, which is why he could have so much fun of them. I’m sure he would have liked to see the father his son has become.

I still cry when I miss him. He had a special kind of orientation toward life that made you want to live more, push boundaries, and see just what you can accomplish. You don’t often meet people who live with the kind of bravery he did. He was himself, whether that was good or bad for the time. You could always count on that.

I hope that wherever he is he’s got a nice cold beer (preferably a Guinness), an excellent hat, and socks that have been washed sometime in the last few months. Since it’s early in the football season his socks probably are still mostly clean. If it were later in the season I can guarantee they’d smell like something a dog buried and then unearthed.

Here’s to you, Pat. May we all live as courageously as you did.

Trump should serve as a warning to all of us

I haven’t been even a little coy about my contempt for Donald Trump. He’s a tiny-handed, narcissistic, man-child still seeking his daddy’s approval and ruining our country in the process. But, he can do something positive for us. He can show us all how living a life filled with expectation leads to unhappiness.

It’s my belief that the happiest people are the people who have learned to live with no expectations. They don’t expect life to be easy, they just expect it to be what it is. Life isn’t fair. It’s not easy. It’s not filled with happiness all the time.

However, Trump and people like him expect that life will just unfold before him perfectly. I don’t know if it’s how he was raised (but I suspect so), but he acts like he expects everyone to just do what he wants them to. Like he’s what the world revolves around. He expects that his worldview should be or is the dominant worldview. He expects that money should get him whatever he wants. I mean, maybe it got him his wife, but I don’t think that’s working out for him as well as he expected it to.

And that’s the problem. Expectations rarely work out the way we think they will. We see things from our limited perspective, discounting the people around us, who all have their own motivations and expectations. We also can’t predict the world of larger events – things like natural disasters, the criminal or nasty intentions of others.

Our expectations also imply that we know what’s best on the grander scale. When we get focused on a set of ideas, and it blocks us from being able to see other possibilities. These possibilities could bring us rewards we never dreamed of because we couldn’t comprehend them, but we’ll never see them because expectations clouds our vision. It’s truly sad for us.

Because Trump has expectations, he acts out of fear that the expectations will not be fulfilled. Acting out of fear is rarely (I would say never) a good idea. It’s more short-sighted than allowing life to unfold, which means precluding a whole series of other potentialities. Fear is the greatest liar in our lives. Nothing cuts us down faster than fear.

And we can see what it’s doing to the United States. Fear leads to unrealistic nationalism, racism, homophobia, etc. It’s not the United States I love so much. It’s not a United States with possibility. It’s backward-looking and limiting. With our resources and population, we should be leading the world in science, technology, mathematics, economics, etc. But we’re not. Until our Dear Leader gets his head out of his ass, we’re going to continue to skid, out of control, backwards, to an era where equality was a dream.

Wiped out

This week has been long and draining. I have had less energy than the last few months. It’s made being productive an incredible challenge. Because I hate losing, I’ve been doing things I want to (since it’s on an app that asks me whether I’ve done things and I won’t lie to the app), but it hasn’t been as exciting for me to do.

I’ve accepted that pain and discomfort are a regular part of my life now. I didn’t know that in 2014, and for a long while I expected that everything would turn around and I could go back to my old life. Accepting it hasn’t really made life easier. I guess I don’t get disappointed as often. I don’t wake up and then get sad when I realize that my right leg still doesn’t work the way it’s supposed to.

I think the real problem is that acceptance only covers what exists at the time you accepted your life. New problems don’t get factored in, particularly for things that never would have occurred to you. Perhaps that is why this week has been worse. I’m dealing with something new and mostly unexpected. Well, blah on that.

My life feels a little like Frogger. I’m darting around the highway trying to get to the other side while avoiding a collision with a car. (Side note, I’ve seen a frog get hit by a car and it is NOT pretty. Strangest thing was that the frog seemed to purposely jump under the tire.) Jumping around while the highway is packed is exhausting. You move forward only to have to move back. Then you jump sideways and realize you didn’t get anywhere, so you panic and jump without really looking first.

Argh. I’m tired. I hope this finds you better than I feel now.

Validation Status: Pending

I have trouble getting help when I need it. Whether it’s physical health or mental health, I tend to put things off.

When I was 20, my senior year of college, I started having trouble with my periods. They went from being normal periods to unbelievable torrents of blood. The kind of blood loss that you would think could kill you. But, I knew from friends that sometimes it’s like that. I didn’t think much of it.

But, it continued for two years and I couldn’t deal with it anymore. It was insanely overwhelming to deal with the heavy bleeding. So frustrating every month to have the same thing. I went to the doctor, but all my hormone levels were normal. They put me on birth control and I got some relief, but ended up with terrible cramps.

The next year I read about the amount of estrogen in the birth control was using so I stopped. I went back to heavy blood flow, but the blood flow became constant. It wasn’t always heavy, but it was there at least 3 weeks per month. I kept on, but it started to interfere with my work. It was 2008 and by then I’d moved to the other side of the country so I sought out another doctor. This time they decided to do an ultrasound.  This is when they discovered polyps in my uterus.

After they took care of them, things were okay for a while, but now it’s 2017 and I’m back to where I was in 2008. Things have been off for a while, but I resisted the doctor.

The first time I remember having suicidal thoughts was in 2008. My life had hit a point where nothing seemed to be going right. It felt like I had no control over anything that was going on and that there were no good outlets. I even had a plan, to minimize the damage it would have on the lives of people I cared about. Somehow, this didn’t seem out there to me. It didn’t seem like I should talk to someone. I thought because I could rationalize it in my head and talk myself out of it, that I was okay.

I was in an abusive relationship, living with the man, for months. After we broke up, I didn’t get help. I figured that because I worked my way out of the relationship, that I was okay. Even though the smell of his cologne on someone else took me back for years, I didn’t do anything.

When I was 22, I was raped. It was a friend, and I was in a compromising position with him, so I thought that I was the one who created the situation and that it was what I wanted. It was my first time, and what he said was, “Well, I guess you’re not a virgin anymore.” And that was that. Even when he said later, “Are you ok with what happened? You know, since I didn’t ask you first?” I didn’t think anything of it. Even though he used the textbook definition of RAPE. I never talked to anyone about it for years.

My problem is that I need validation from other people to know that what I’m feeling is legitimately a concern. It wasn’t until coworkers convinced me I needed to go to the ER because I could barely stand and couldn’t walk upright that I did something aggressive about my back problem. I ended up having surgery THAT DAY because the problem was so bad.

After I broke up with my abusive boyfriend, someone asked me, “How could you let that happen?” I internalized that to mean that it was my fault that I’d been in the relationship. Therefore anything I felt after was also my fault and not something I should get any help for.

It was only a couple years ago that a few people suggested I might want to get psychological help for the rape and consistent low feelings I was having. Even then, I thought I was fine.

I recently had stomach pains so bad that I couldn’t stretch my abdomen. It wasn’t until Mr. Lyndsy said I should go to the ER that I even truly considered going. It’s like the things that happen to me aren’t anything. I had a spinal fusion and tried to go to work 2 weeks later because the doctor told me I could go back when I felt like it. I took that to mean I shouldn’t be out of work at all.

Now, if this were a friend coming to me, I would have told them they were nuts to go back to work two weeks after a spinal fusion. That rape is traumatic. The list goes on. But when it comes to me, what I feel or experience isn’t enough. It doesn’t have meaning on its own. It’s hard to put into words. But it’s sort of like feeling like I don’t matter. But even that’s not the right description. I guess it’s more that I always feel like I’m exaggerating.

I don’t know when this started. It could be from when I was growing up. I sprained an ankle when I was in high school. I missed a stair and came down on my foot sideways. My dad din’t take me to the doctor, just gave me gel to put on it. My mom told me if I thought it was that bad, to call the doctor myself. To me, neither took it seriously, so it wasn’t an issue. Never mind that it swelled up to twice its size after every basketball practice. I never went to the doctor.

When I was 7, I threw up. I went to the bathroom for the toilet, but I didn’t make it in time. After my mom got everything cleaned up, she told me that if I missed the toilet again, I would have to clean it up. When I told my mom about the constant bleeding, she told me that it couldn’t be real or I would have told her about it. After my abusive relationship ended, I asked her to fly out to help me. She said she was busy at work, so she didn’t come.

Most of the time I kept things to myself. I never wanted to be a bother to anyone. I still really don’t. I apologize to Mr. Lyndsy all the time because I am so sick all the time. He tells me to stop being ridiculous, but the feeling that I’m a dead weight is always there. I guess I feel like I need to justify any expenses that I cause because of my health.

I guess, the long and the short of it is that I need to have a chat with my shrink.

Life on a continuum

A good friend of mine wrote a book and she’s letting me take a crack at editing it. I just hit a part where she talks about how life is on a continuum, specifically related to where we think we are in relation to someone else.

I regularly think life isn’t fair. I went from being an active person to someone who spends a good portion of my day in bed. I’ve mentioned before that I have pain every. day. That hasn’t changed in three years and it doesn’t look like it’ll change anytime soon. That sucks.

But, there are people who feel worse than I do and those who feel better. That doesn’t really matter. I’m not them and they’re not me. My life isn’t their life. Their life isn’t mine. I have no idea where they live, whether they’re married, etc.

I wrote once about choosing not to have a child because of my health conditions. Well, it seems more likely than not that even if I wanted to, it’s not something my body can do. A doctor recently confirmed that it would be a “very high-risk pregnancy” given my age, diabetes, and lupus. But like I said, it seems that my uterus is actually quite hostile to the idea.

I get angry about that. I don’t even have the *choice* that so many other people get. Sometimes it’s made me hostile (only to myself, never at anyone) when there are pregnancy or birth announcements. But, I trust there’s a reason. So many things in my life have happened that put me in one place or another where I never expected to be but from which wonderful things happen. Right now I get great healthcare. I’m grateful for that because I desperately need it. Were I in the US, I don’t know that I would be getting that or that I could afford it if I were in the US.

Sometimes when I talk about how I’m unhappy with my constant physical pain or mental health issues, I get kickback from people who want to remind me that I should be grateful for what I do have.

Complaining about my current state doesn’t mean I’m not grateful for what I do have. But being happily married doesn’t change the fact that constant pain sucks. A lot. I don’t know how anyone on Earth could say that constant pain isn’t a big deal. Or that being so depressed that thoughts of suicide aren’t infrequent (though they happen less often now than before).

Just because someone thinks I’m better off than someone else, does not give them the right to tell me I can’t experience sadness or anger over the hand I’ve been dealt. It’s horrible to be denied that. It also means I’m not fully feeling emotions, which is unhealthy.

I can be grateful and pissed off at the same time. I can be sad about one thing and happy about another. I am more complex than that. We all are.

I will give you your suffering if you give me mine. I will give you your happiness if you give me mine. We all deserve that.

Spoonie Life Complications #1

*If you don’t know what I mean by “spoonie” read this.**

I labeled this post #1 since I am quite certain that there will be many more in the future. The one currently affecting my life is this: Spoonies do not have the luxury of not planning things.

I know there are many people out there who like to plan. But, for spoonies, planning isn’t a luxury. It’s a necessity.

Mr. Lyndsy and I are planning to move back to the United States as he’s decided to take a friend up on a longstanding job offer. For some, it’s just a simple matter of picking a place to live and going from there.

Unfortunately, I need to know whether the job comes with insurance. Given how crappy healthcare is in the US, I have to make a somewhat concrete plan. I cannot afford to live with crappy or no insurance. ONE of the medications I take for diabetes costs $350 without insurance. (Where I am now it’s covered by insurance, but even if it weren’t, it’s about $9 per month.) Even with insurance, I have doctor visits every three months, at a minimum. I see a rheumatologist, nephrologist, endocrinologist. I see a psychiatrist either every month or every three months. At $45 each, the cost adds up quickly.

After the spinal fusion I took off work for about two weeks before going back. I believe I’ve mentioned before that I didn’t take off enough time. I worked for two weeks before asking for leave on short-term disability so I could get better. Rather than let me take off the time, they terminated me. Since then I have worked part-time, from home. Given how poorly I feel just doing household activities, I am decidedly unsure whether I can even work a full-time job, which would be a requirement if I have to have the job that comes with health insurance.

Of course, a job with health insurance isn’t enough if my medications aren’t covered or if my co-pays are high. I can’t not go to the doctor. I have serious chronic illnesses. So now, I’m looking at picking a job that not only offers health insurance, but also pays well enough to cover those things. I’ve heard that Starbucks offers insurance coverage to most of its employees, but I’m not sure a barista’s pay is enough to cover my health life.

Okay, great. But that’s not enough. This job I’ll need to have, what do they expect me to be able to do? What’s the sick time like? When can I use it? Is there a minimum amount of time I have to be there to be able to use it? I’ll have the same questions about vacation, in case I burn through my sick time. There are days where I just can’t get out of bed. Is there a probationary period that would be affected by my need for sick time?

These questions don’t go through the minds of people who are generally healthy. They think about vacations they want to take, not wondering if they’ll even get to take any time off for something fun.

I know there are people who look at spoonies like me and think, “It must be nice to be home all day.” To them I say, no, no it is not. Because we have to deal with the feelings of inadequacy that come with not being able to be out, working, earning an income. We feel awful – unable to justify taking money from others and our partners, who have gone to work to earn that money. We don’t feel like we can spend it for us, for fun things.

I was once a person who worked 26 days straight – including weekends, more than a regular 8-hour shift each day. I left for work at 5am and didn’t finish with either work or class until 9pm. I did that for months because I believed in what I was doing and it was necessary. Now I’m a person who has trouble waking up in the morning. Who can’t stand and do dishes for more than 5 or 7 minutes at a time. Whose back hurts while dealing with a single load of laundry. I have trouble remembering what I’m doing AS I’M DOING IT. I forget basic words (yes, the other day I said “machine that washes the dishes” because I couldn’t remember “dishwasher.” It happens to everyone, but it doesn’t happen to everyone all the time, every day). Sitting and working at a computer hurts my back and arms. Breaks don’t always help. Good luck being a lawyer full-time! That’s ALL they do.

I hate that my life has been reduced to trying to figure out how long each day I can work, what I can do if I am to work, and whether I can do it long enough during the year to not exhaust my sick and vacation time. But, this is my life now. The only thing left to do is live it. What people need to do, however, is step outside themselves for a minute to consider what someone else may be going through.

4

The Kid I Cannot Have

I recently decided that I do not want to have kids. I resent that I had to make that choice.

You may be wondering, “If she resents it, why did she make that choice?”

My 35th birthday is in a couple of weeks. The statistics about pregnancy after that age are readily available and definitely not positive.

But that’s not why I don’t want to do it.

Mr. Lyndsy has pretty great genes. He’s 35 and in good health. He broke a vertebra in his back and an old ankle injury gets him sometimes, but he spends his days in activities with kids who are twelve years old and does pretty well. He still plays sports. His father is in his 60s and still VERY active. He’s smart. He’s funny.

I’m smart. I’m funny. But that’s where the good stuff ends.

I was born with a bad back, or so said the neurosurgeon who fused my spine. Even now I still have back issues, just located in a different place. I have chronic pain in my foot from the nerve damage and tendon transfer.

I have Hashimoto’s which causes my body to ebb and flow through periods of almost manic energy and then into a state of fatigue. I’m lucky to have an endocrinologist now who was willing to treat it with medication, but it took going through three doctors before him.

Even with the Hashimoto’s treated, I have to contend with fibromyalgia. Random flares of body pain and bouts of fatigue so oppressive I don’t want to get out of bed. When you do finally get out of bed to do something, brain fog kicks in and you can’t remember why you up in the first place.

Of course, that’s not the only reason I don’t want to get out of bed some days. Depression and anxiety also like to jump into the fray, further knocking me down. The commercials that say depression has a physical component aren’t kidding. The body aches and fatigue are on top of feeling like your soul has done a round with Mike Tyson.

Diabetes can be a result of lifestyle choices. But sometimes, when your body is under attack from a bunch of other shit, diabetes gets you anyway.

For shits and giggles my kidneys leak protein. They aren’t supposed to. We do not yet know why it happens.

Perhaps my favorite is that I seem to be allergic to the sun. Prolonged sun exposure (as little as 30 minutes) results in a butterfly rash across my face and bumps down my arms and into my hands.

I have walked on the edge of the ultimate blackness. Been in that place where dying seemed like a much better idea than living. I managed to walk away from the desire, but my kid may not be so lucky. And it hurts because I know that all of my love wouldn’t be able to save him or her from that edge.

I don’t want that for my kid.

I had 15 doctor appointments in one month. I had blood draws for probably 40 lab tests. I spent a lot of time going to and from the hospital for those appointments. I have spent 9 nights in the hospital. The place where you’re supposed to get healthy, but health is impossible when you can’t sleep because someone is coming in every hour or so to make sure you’re okay.

I don’t want that for my kid.

There’s a long ass list of foods I don’t eat anymore because they upset my stomach. I can’t eat some of my favorite treats, unless I’m willing to risk an explosion of diarrhea at the worst possible time.

I don’t want that for my kid.

Standing, walking, and sitting cause pain. Running is out of the question. Sports don’t happen. Theme parks require sunscreen and a hat, and even then my face feels like it’s on fire and my arms look like something out of a sci-fi movie.

I don’t want that for my kid.

So I won’t have one.

I feel like I’m making the choice any good parent would make.

That doesn’t mean I like it.

I resent the hell out of it.

But it’s the choice I have to make. For my kid.

 

Well, am I just Polly Positive or what?

Alright, I’m kidding about that I’m not Polly Positive. However, I realized something strange about myself as I was trying to fall asleep (unsuccessfully, I might add). My view on living positively has changed a lot over the years. Let me explain how I even went down this rabbit hole of thought.

I follow someone on Facebook who is a product designer. She posted that she’s been terminated from her independent consultant position due to a conversation she had that she thought was private. At first that struck me as horrible since she was really quite successful at what she did. Apparently someone in the group conversation snitched on her.

That got me thinking about where I could end up myself if people linked my worlds together. If someone found my little corner of the internet here or some of my other projects – could I end up in trouble?

So I thought about it. I panicked, wondering whether I should quit everything except the job that brings me the most income. I didn’t like that idea since it is like the death of creativity and I need, and I mean NEED, a creative outlet.

I have long held the belief that you shouldn’t talk about someone behind their back unless you’re willing to say it to their face. For some reason, that never translated beyond the context of people and interpersonal relationships. It never occurred to me that it would have any applicability anywhere else in my life.

That, my friends, was completely incorrect.

When I started this blog back in 2006 (OH MY GOD IT’S BEEN 10 YEARS!) it was a place for me to be angry and to vent about things. I was in a completely different place in my life then – I spent the majority of my day around people who were stressed past any point they’d been stressed before. The pressure on everyone to perform was enormous. After a while that wears you down. You don’t have the energy to filter through the emotions and we just sort of fell on the easiest one to find at the time – anger, frustration, and irritation.

What I didn’t realize at the time is that staying mired in the muck of bad feelings just made it harder to get away from them. We fed on each other’s stress and negativity. It seemed like it validated our existence.

Since then I have learned that positivity, looking for joy in all of life, and finding meaning in what you’re handed (even if it seems like a heaping pile of cow dung) actually bring longer-lasting and healthier results. I can probably only see this way now that I am taking medications to help me stave off severe depression.

I don’t want to post or produce content that only serves to bring us down. I want to be a force for happiness and good. I don’t want to rant about problems without first having tried to come up with a solution, even part of one. There are so many serious issues that we need to talk about. That we need to come together and work on. I don’t have time to waste on negativity, griping, and bringing other people down.

There’s more than enough success out there that we can all enjoy it. Why focus on anything but trying to find a way for all of us to succeed? Anything we can do for one of us enhances life for all of us. THAT is my focus now. THAT is what I want for all of us.

I’ve been wondering why posting here hasn’t been like it used to be. It makes sense though since I am not who I used to be and this blog is just an extension of me. I may not always be a ray of sunshine, and I still love my clouds, but now I focus on the fact that the rain clouds bring water which brings growth.

Bloom