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My Body, My Choices

Bodies are complicated things. No two are alike and the different combinations of things means that even when there are similarities in diseases/symptoms, how they interact with each person can vary wildly. However, that doesn’t change the fact that what we each have going on affects how we deal with the world. And each of us individually knows our bodies and interactions better than anyone else. I want to share what MY body is like and how it affects ME every day. I figure I’ll just start at the top and work my way down.

MY BRAIN
Problem
: My brain isn’t wired to function in a neurotypical society – ADHD, depression, anxiety, insomnia
Effect: Working in traditional 9-5 jobs without flexibility is a nightmare. Without medication, I have trouble focusing for any length of time, I am easily distracted, and often forget what I’ve just said or just been told. I grew up believing that to be loved and accepted, I needed to accept that things were my fault, that monetary success was THE key to happiness, as is thinness and conforming to beauty norms. My depression and anxiety feed off this and send me messages, every day, that my inability to be neurotypical means I’m a failure. That my physical ailments, over which I have little control, have left me in a position where I will *never* be successful or happy. I take two antidepressants, an anti-anxiety medication as needed, and a medication for the ADHD so I can focus. I also have trouble falling asleep – my brain races and will not let me fall asleep, no matter how physically tired I am.

MY FACE
Problem: Deviated septum, maxillary sinus blockage, turbinate hypertrophy
Effect: Inability to breathe well through my nose, chronic sinus infections, poor quality sleep. Sleep is when the body and brain have a chance to recharge and heal. Because I can’t in oxygen, I get crappy sleep. Crappy sleep means I don’t heal. Additionally, it makes running and other cardio exercise difficult. I just had surgery to correct these problems, but I am still in the recovery period.

MY IMMUNE SYSTEM
Problem: My immune system mistakes my healthy tissues for invaders and attacks – Lupus, Hashimoto’s thyroiditis, Type 2 diabetes
Effect: Probably the biggest and strangest thing is that I am basically allergic to the sun. I develop a rash on my face which eventually feels like it’s on fire if I don’t remove myself. Repeated sun exposure also leads to rashes on my arms. The sun is a source of Vitamin D which gives us energy. I have to take a supplement to get to normal levels. More annoying than being allergic to the sun is the constant fatigue. The thyroid regulates a ton of the body functions through thyroid stimulating hormone. My body thinks that my thyroid is an invader and attacks it, causing pieces of it, with the hormone to dump into my body. This causes all sorts of fun problems like menstrual irregularities, fatigue, feeling too hot, not being able to cool down once I get warm. I’ve had to alter my diet to avoid overloading my body with sugar which can cause fatigue and brain fog. Lupus also causes small joint pain in my fingers and toes.

I’m pretty sure that the root of many of my problems is Lupus, which should have been diagnosed when I was younger. It causes reactions to antibiotics that appear allergic, but aren’t. I had such a reaction at 4. I think had it been diagnosed, I may have been able to get treated earlier (instead of starting last year) and I may have been able to avoid the thyroid issues and diabetes. There is also some concern that my kidneys are being affected.

MY MUSCULOSKELETAL SYSTEM
Problem: A developmentally narrow spinal canal and nerves that don’t fire appropriately – Spinal issues and fibromyalgia
Effect: Widespread body pain that comes when it feels like and stays as long as it likes. This includes pain in my upper back, shoulders, wrists, hips, and knees. It can be triggered by stress, food I consume, and trauma (like surgery). Because my spinal canal was small, when I herniated discs, I was in extreme pain as they pressed on nerve roots. This led to two back surgeries, the second of which was a spinal fusion in the lumbar region of my back. I still have some lumbar issues and have pain on certain activities. Additionally, a complication of that surgery was that I woke up with foot drop, the inability to pick up my foot. Bad physical therapy further damaged my leg. This led to a tendon transfer, which gave me the ability to pick up my foot, but has probably caused hallux rigidus in my big toe so that it doesn’t have the range of motion it used to. I also have nerve damage so I cannot feel most of my big toe on my right foot or my second toe. I also have joint pain in the metatarsals of my right foot. I take an antidepressant to subdue the widespread body pain and occasionally other medication for acute joint pain. Fibromyalgia also causes stomach issues like IBS. I have to very careful what I eat lest I have a horrible stomach reaction.

MY REPRODUCTIVE SYSTEM
Problem: Irregular menstrual bleeding and hormone issues – uterine polyps and endometrial hyperplasia, PMDD
Effect: From about 2002 until I had my uterus removed this year, I had irregular menstrual bleeding. This was prolonged periods and/or heavy periods. Sometimes I bled 20+ days/month, another time I bled straight for 90 days. This is challenging to deal with mentally and physically. Never knowing when you may start bleeding and how strong it may be makes planning things difficult. I would go to the bathroom at work to discover that I had ruined yet another pair of pants. Additionally, I have PMDD, which is essentially PMS on steroids. It affects people different ways – I get slammed with major depression and anxiety. I hoped that having the hysterectomy would lessen the effects, but that hasn’t been the case.

So you’re thinking, okay, but what does that really mean in terms of your life? Best thing I can do is run you through a typical day.

11:30am-1:30pm: Wake up. Feel bad about having slept so late and letting the day get away from me. Think about how I will never really be a financial contributor to my household if I can’t manage to get up earlier and be more productive. However, body is wiped out and still doesn’t want to get out of bed, even though I am awake. It usually takes me 20-30 more minutes to get up and moving. Also, I probably didn’t go to sleep until 3am or 4am and woke up several times in the night, so even though I’ve slept many hours, I’m still fucking exhausted. I do not feel refreshed.

I drag myself out of bed and take my thyroid medication. It needs to be taken 30 minutes before I eat anything else. I then think about what I’m going to eat. My stomach is usually pretty sensitive when I wake up, so I debate for a while what I can eat that won’t make me feel sick. Sometimes I eat, sometimes I don’t.

I hop on the scale to see where I’m at and how my body is processing what I’m feeling these days. Lately I’m down in weight because the surgeries ruined my appetite. Regardless, I see my stomach in the way of the numbers on the scale and reflect how fat I am. Now not eating anything doesn’t seem like the worst idea.

Since I’m still tired, I get back in bed with my laptop and check email and social media. Since I currently do direct sales and work from home as a lawyer, I handle those emails. Unfortunately, I get distracted by 17 other things and can’t remember what I started out doing. Eventually I remember, but beat myself up for getting distracted in the first place.

Mr. Lyndsy comes home for lunch and I feel bad that I haven’t made him lunch, done the dishes or anything else related to the house. I know that after the surgeries I’m not really supposed to, but since I’m the one who is in the house all day, I feel responsible. I do know that he’s an adult and can handle making his own lunch, but like I said, I feel bad that I’m home all day, making very little contribution to our finances, so I *should* be doing more around the house.

I see doctors pretty regularly, especially since I currently have some surgery complications and follow up, so I throw clothes on and head outside, praying the sun is hiding. It’s gotten cooler here now, but I get warm with a lot of movement, so I hope I’ll be okay. During the warmer months though, simply getting from the apartment to the Uber makes me hot and I take hours to cool down. This takes longer if I’m out grocery shopping or moving a lot. My body is usually in some form of pain at this point as well. Sitting for any length of time causes lower back and hip pain. My stomach may be aggravated as well, so I’ve probably made several trips to the bathroom. These days though, I can’t tell when I need to poop, so it happens after I’ve started experiencing some type of stomach discomfort.

Once I’ve finished whatever I’ve been out doing I am usually worn out. I started the day exhausted and fatigued and nothing I’ve done has lessened that any. I am grateful to get home and crawl back into bed. I wait for Mr. Lyndsy to come home. He is usually home around 6pm, which is our dinner time. I realize I haven’t done anything to prep dinner. He’s also usually pretty tired, so we end up not actually making anything and either ordering out or eating something like a sandwich or just crackers. Yesterday, for example, I ate yogurt for breakfast, pineapple for lunch/dinner, and rusks and cookies for a later dinner.

Mr. Lyndsy usually falls asleep around 9pm. He’s up early and since he also sleeps poorly is pretty constantly fatigued. By this point in the day I feel pretty bad about myself. I have done nothing to contribute to the household. I’m tired. I’m in pain with a sinus headache, body pain, I feel too warm. Yesterday was a banner day because I was also emotionally done. The PMDD was in full gear, exaggerating all of the usual depressive and anxious messages about my lack of self-worth and inability to provide value to the world. This is when I start to serious consider that perhaps I would be better off not living anymore. I hurt all the time, I don’t provide value, and there doesn’t appear to be an end to it. Why live like that? Is that really living? Maybe it’s time to just let go.

That may seem like an extreme reaction to you – after all, this stuff isn’t my fault. I don’t make my body attack itself. I don’t control the wiring in my brain. The problem is that I remember I lived a different way. At one time in my life, I felt like a fucking rockstar.

I USED TO BE A BAD ASS
In my last semester of law school I worked as an extern at a large prosecutor’s office. One of my professors was an adjunct faculty member and he was a senior deputy prosecuting attorney assigned to their homicide division. He encouraged me to do the externship and work with him. At the time I didn’t have any interest in practicing law, but 4 credits not stuck in a classroom sounded like BLISS.

Well, it was the perfect match for me. The prosecutor was so impressed with the work I’d done as an extern that he convinced the elected prosecutor to hire me for a job that didn’t actually exist. He was prosecuting a quadruple homicide at the time and it was a capital murder case. He wanted MY help with it. Yes, me. A 24-year old who just graduated. To put it into context, he hated trying cases with anyone. He only did it if the office made him. So, that’s a massive compliment to me. The elected prosecutor agreed.

For the next three years I worked a ridiculous number of hours on the case. I was a full-time graduate student during 2 of the years. I know at one point I worked 28 days straight, probably 10 hours per day. Otherwise I maybe didn’t work on Sundays. I worked alongside local police and fire departments, the state patrol crime lab, leading DNA experts, and an ATF task force.

And I wasn’t just an errand girl. Yeah, sometimes I ran and got coffee and lunch. But after the jury returned its final verdicts (guilty and for the death penalty), we chatted with them. Turns out some of the evidence they found most compelling was evidence I’d uncovered through research or things we discovered because of an insight I’d had. (For example, by reviewing photographs of the defendant, I realized that some of the injuries on his neck weren’t scratches, but were ligature marks left by someone pulling on his chain necklace. The necklace was sent for DNA analysis and the DNA of one of the victims was found on the chain.) Don’t get me wrong, it wasn’t that I’d single-handedly done anything. My boss is a master in trial. He had the vision, I just helped him execute it. He’d tell me he wanted the evidence presented in a certain way, and I found a way to make it happen. After it was all said and done, he said he couldn’t have done it without me.

AND NOW
I can barely get out of bed some days. I have trouble focusing long enough to read a book and follow it. I can barely do 8 hours awake, let alone 8-10 hours of work and travel. I fight the demons in my head most days. I don’t feel like I add value to the world.

There may come a time when I decide I’ve had enough. It will be at a point where it’s clear that things won’t change or will only get worse. People often think that a person’s choice to end their lives is a rash decision. At least for me it wouldn’t be. I know what I was and what I am now. I know what feels like living and what doesn’t. No one else gets to make that call for me. Also, there isn’t anything that someone could say or do that would affect my decision. I live in this body and mind every day. I know that when it’s done, my energy will return to where it came from for someone else to use and change the world. That’s okay with me.

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.

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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.