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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.

Licensed Professionals, BE SMART

The rant to follow probably applies to a broader group of people than licensed professionals (doctors/nurses, lawyers, CPAs, etc.), but for right now, I’m going to contain it to these people. Why? Because I have a lot of experience with some and I am one.

  1. Arrogance isn’t smart. It’s obnoxious. No one likes to associate with arrogant people (unless they’re pretty fucking arrogant themselves). Perhaps check in with some people, not just your friends, about how you come across.
  2. Unless asked, keep your opinion to yourself. First of all, spouting off what you know about something just makes you look like a douche. If no one asked you, why are you offering? To show off what you know? No one likes a know-it-all. Second, you could get yourself in trouble with your licensing agency.
  3. Be wary on social media. Seriously. Social media seems like a great place to share. You can reach potentially hundreds of thousands of people. That’s not always a good thing. Even if you keep your profile locked down, it’s not hard to copy and paste or take a screenshot, and suddenly what you thought was a semi-private conversation has now gone viral.

Where did this come from, you might ask? I posted about how excited I was to have found a gynecologist who will do the hysterectomy for me! I am SO STOKED about this. My days of suffering will hopefully come to an end soon!

Well, someone I went to high school with is now a gynecologist herself. She jumped into the thread to ask why I wanted a hysterectomy. Then proceeded to tell me how I should be pursuing a more conservative course of treatment, that she surprised that I even found a doctor to do it, and talked down to me.

Despite my consistent posts about everything that’s wrong with me, she had no idea about any of my medical history. She has never examined me. I haven’t even seen her since perhaps 1999.

Why was she offering an opinion then? Your guess is as good as mine.

To make sure I wasn’t being too harsh, I asked a dentist friend to look at it. He immediately recognized how unprofessional (and stupid) it was of her to make the statements she made. Someone else messaged me to ask if it was likely that she was getting kickbacks for the medical product she recommended.

Worse than that, I had a discussion with a couple friends who told me that people they knew used the product, and more than a handful had serious issues with it. The product in question is an intrauterine device designed to prevent pregnancy and manage heavy periods. This “friend” undersold the risks that come with using it – perforation of the uterus, the IUD getting lost (LOST IN THE UTE!) and requiring surgery to get it out, and deep depression.  I and a friend both know someone who’s gotten pregnant using it (fuck your 0.1% of pregnancy).

When I spoke with the doctors I knew an IUD wasn’t for, but now I am MORE THAN SURE. I already have depression, I do not need to chance making it worse.

If I had taken this “friend’s” recommendation and used the IUD and something had gone wrong, would she be liable? Possibly. As a lawyer, I would caution all my friends who are licensed professionals against offering advice the way this doctor did. No sense in testing your malpractice insurance.

So yeah, be smart, friends. Be smart.

I hate doctors: Part 76,589

Y’all know about the troubles with my uterus, so I’m not going to go into them again, except to add that this summer I had a 90-day stretch of bleeding WHILE ON PROVERA. Yes, you read that correctly – NINETY DAYS.

And for funsies, 10 of them were of the “how am I still alive to bleed anymore” variety. So yeah, that was fun. I was good and kept going to the gym, but not without nearly destroying a ton of my workout pants.

Anyway, I’m desperate to get rid of my uterus. It’s been the bane of my existence since 2002. I “became a woman” (God do I HATE that expression) in 1995. That means that for 7 years things were fine, and for the last 15 they have been absolute shit. Just complete and utter shit (not unlike Trumplestiltskin).

I figured, what with 90 days of bleeding, the doctor would agree that shit is really fucked up and it’s time to just get rid of the damn thing. At a minimum I expected that we’d at least follow up and make sure that the endometrial hyperplasia is gone (that was my diagnosis after the D&C).

Well, there’s a new head consultant in town and he doesn’t think the endometrial hyperplasia is a big deal. Uh, what? That seems like something we should follow up on since it causes an increased risk for cancer (not a huge risk, 1%, but I’d still like to just make sure).

Not only will we not follow up on that, he just wanted me on more drugs to deal with the heavy bleeding. Hormones haven’t really worked for me in the past (see above re: 90 days of bleeding while on progestin), so I’m not sure why he thinks that would fix things.

We went round and round about the Mini Pill or an IUD, neither of which I want. So then we chatted about a hysterectomy. We chatted at length. “You don’t want kids?” “No, I don’t.” “What if you change your mind?” “I won’t.” “Well, hypothetically, people can change their minds.” “Yes, I agree with you. But I’m me.”

I explained all the reasons I don’t want my uterus: My body can’t sustain a pregnancy, I’m like quadruple high-risk (diabetes, thyroid issue, lupus, age), I have mental health conditions that are heritable and I have NEGATIVE interest in passing them on, even if the chance is slim.

He went on to tell me that it could be a complicated surgery. Yes, thanks, I get that. I’ve had a SPINAL FUSION.

My favorite part was this exchange:

Doctor: I cannot make you take treatment you do not want.
Me: That’s true.
Doctor: Similarly, you cannot make me do a treatment I do not want to do.
Me: That’s also true.

So we hit an impasse. I didn’t want what he offered and he didn’t do what I think is best for my body.

I got so frustrated I cried.

This guy could not let go of the fertility aspect. Even though he asked me at one point, “You’re 36, don’t use contraception, and you’ve never been pregnant.”

HOSTILE UTERUS, DUDE. GET WITH THE PROGRAM.

Seriously though, this was a waste of an hour of my time that I am not going to get back. He HEARD me but he damn sure wasn’t LISTENING. I have had major problems for FIFTEEN YEARS. YEARS, my friend. And that’s enough?

The fact that I’m telling you how much it impacts my life to bleed heavily and for extended periods of time isn’t enough. I made him well aware of the list of other conditions I have. Did not matter.

Ultimately he passed me off to another doctor to talk about an endometrial ablation. I left unsatisfied because I was pretty sure that wasn’t the answer. Some research later, it’s definitely not. I’ll still meet with that doctor and see if I can convince her of the validity of my choice for a hysterectomy.

If she can’t help me, then I’ll talk to someone else. And if they don’t work, someone else. I will go until someone is going to fucking listen to me and UNDERSTAND where *I*, their patient, am coming from.

 

 

 

Happy Birthday to Me!

This is a weird birthday for me. For the first time since I can remember, I didn’t stay up until midnight to ring in my birthday. I was tired and wanted to make sure I could get up today and celebrate.

Well, that plan failed. I couldn’t get myself roused until after 1pm. I wanted to get up earlier, but I could not get my body to cooperate. I had weird dreams too.

I’m also just feeling a bit out of sorts as well. I’m on a ton of meds right now and I’m not sure I have a full grasp on how they affect me. Also, I’ve got money worries which always weigh on me heavily. I finished The Alchemist by Paolo Coelho and I’m sad that I don’t know what my Personal Legend is. This isn’t exactly a new feeling, but reading the book really drove it home.

On top of that, I’m just feeling a little stuck, like I mentioned Wednesday. I think it’s probably depression, but knowing that doesn’t tell me how to get unstuck.

Also, I feel old now. I mean, I know I’m not old. But my body is falling apart. I take more meds than my grandparents. Mentally I feel pretty young and when I look at my friends, I don’t feel like they’re old either. There’s just this unsettling feeling that I can’t get rid of that makes me feel old. It’s depressing me.

Mostly I just feel like everything is swirling around me and I can’t control any of it. I know that’s not true, but that’s just how it feels. The mental image I have is of paper with clues and ideas are flying around my head and I’m trying to reach out to grab them so I have some idea of what is going on.

It’s just so UGH. Not really how I want to spend a birthday. But I suppose it’s inevitable. Birthdays are times of reflection. This is just a weird spot in my life. (One that seems to have lasted for quite some time.)

So yeah. That’s where I’m at. I’m hoping for clarity soon.

Done

I’m done. I think I probably hit this point a few weeks ago, when my irritation with everything lasted for days. I woke up irritated.

I don’t really know what it is. Mr. Lyndsy and I have been apart since August 10, but we’ve been apart this long before. That could still be it.

I’m not sleeping well either. But that’s nothing new. Maybe it’s catching up with me.

I can’t string together many non-irritated days anymore. That’s problem.

I know that irritation like this can be a symptom of anxiety. Unfortunately I can’t walk around stoned on Xanax all the time though I should consider it for the next few days until I’m back with Mr. Lyndsy.

I don’t like being irritated by everything. I don’t like not wanting to be around people. But I can’t be nice when I’m like this. And I’d rather not do and say things that will upset people.

Being me is hard sometimes. I don’t think all my pieces work particularly well together. An extrovert that can’t be around people nicely? That doesn’t work.

I have been exhausted lately. So much I want to and need to get done before I eventually get on a flight back to the sandbox but I just want to sleep or lay in bed. I’m tired of being tired.

Ugh.

People are exhausting

I’m a direct seller with a few companies. One of the companies I’m with just announced some major changes.

Rather than be calm and rational and THINK THROUGH things, people are freaking out on the COMPANY’S GROUP PAGE. I even saw a comment from someone who hadn’t watched the company’s announcement, but instead just ran with what she’d heard other people saying.

The people complaining are people who aren’t making many sales each month. This means they aren’t actually making that much income either. But they’re worried that the company is taking it away. They say they’re working hard.

Here’s the thing. Working hard doesn’t always mean you’re working the right way. If you’re doing the same thing over and over you’re probably getting the same results. When something isn’t working you have to step back and re-evaluate your plan. Try something new. Jump out of your comfort zone. That’s how changes happen. That’s where you find success.

But really, what the ever-loving fuck is wrong with people? If this is how they’re responding on this issue, I’m guessing this is how they respond to other things as well. Rather than actually taking the time process information, they’re letting knee-jerk reactions carry them forward, yelling about it, and getting inflamed by the other people who didn’t bother thinking things through either.

I’m guessing that’s how we got our asshole president.

And of course, because people freaked out, the company changed the requirements to make it easier. Now all those people who didn’t bother thinking shit through have been rewarded for their idiocy.

This is why we can’t have nice things.

It’s fucking irritating and I’m already in a foul mood.

BLARGH.

My Week Unplugged

I took last week off. I went into the middle of nowhere with a friend and unplugged from social media and the computer for the most part.

It. Was. AWESOME.

Everyone should do it when you can. I was so much less stressed out. I kept up with the news some, but I wasn’t inundated with posts from friends. It’s not that I don’t like the posts, but it certainly gets to be a lot. (I sort of live in an echo chamber on social media.) I also didn’t work at all, which really helped my stress levels.

We started at an AirBNB in Northern Michigan. I say started at because we did end up having to leave, which was not the plan. The deadbolts didn’t go into the frame of the place; there were open electrical things because switch plates were missing; the shower was skeevy; there was no door on the bedroom (it was only a one bedroom place, not two like the ad said); the queen bed was where the living room used to be I think; there was only a curtain between that bed and the bedroom so you could easily reach out and touch someone (anyone remember that AT&T ad?); the “kitchen facilities” consisted of a burner, a toaster oven that I’m not sure worked, and a microwave that we had to move to where the TV was since none of the plugs were three-prong (we had to plug it into an adapter); there was a blanket covering a section where the wall was missing and it was just insulation; there was a sliding glass door with no curtain on it so anyone could peek into the house and see the person in the queen bed; the AC unit was plugged into an extension cord next to the queen bed so thank God we didn’t need it since it would have had to be plugged in right over my friend’s head; the ad showed photos of water sports but wasn’t near any water; it was in a sketchy neighborhood and we got creepy stared at when we went out for walks; and the sheets were musty and gross – we couldn’t be sure whether they were actually clean.

But, we were going to stick it out. Until the toilet failed and the showed backed up with it. We got there on Sunday and expected to leave on Saturday. The toilet failed Tuesday night. Messaged the owner to let him know and he told us to plunge – that it always worked for him. (So right there I’m getting pissed off since he knows this is a problem and gave us NO warning.) After a while we check the toilet and the water has gone down and it can be flushed. Except that it wouldn’t flush again Wednesday morning. That’s when we decided we were done. When you’re chronically ill and occasionally have nasty bouts of stomach ickiness, you don’t live with a shitty toilet. (See what I did there?)

Owner was totally cool with us leaving and refunded the money for the days we didn’t stay. I think in an attempt to get us to leave a good review, he told me he’d already called the septic company to come out. Then he offered to let us stay Thursday and Friday nights for free if we were still in the area. (We weren’t – we headed to Detroit to go to the zoo and a Tigers game.) Then he rescinded the offer because he had his local plumber go out and that guy told him that his septic had failed. To further piss me off, the owner told me that he knew he was on borrowed time with the septic. He also shared that he wouldn’t be able to rent for the rest of the season. My heart broke for him. Or not.

The obnoxious thing about the experience was that we couldn’t have known it was going to be messed up from any part of the ad or the reviews. Everyone talked about how great it was. We wondered whether everyone had had problems and he just gave people their money back so they would leave good reviews.

This would completely put me off AirBNB but I’ve had a prior good experience with it. I will probably be very critical of the ads in the future and message the owner with questions they’d never expect (like, “have you had problems with the toilets recently?”).

If you’ve had experiences with AirBNB, please share them with me. If you all have had mostly funky experiences, I’ll stay away from it going forward. Also, I wonder if there’s a difference between international and local to the US AirBNB.

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.

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Feeling like a burden (Spoonie Life Complication #3)

A few months ago I got stressed out which led to a horrible back spasm. I tried to fall asleep, but was kept awake by the pain. It was so bad I actually had tears in my eyes. I couldn’t find any position in which I was comfortable. I hemmed and hawed about whether to wake up Mr. Lyndsy. I posted about it on social media – asking whether it was okay to wake him up.

Overwhelmingly the answer was “Yes! Wake him up!”

But I still didn’t do it until a time when he might have been up anyway. (Obviously he wasn’t awake since I had to wake him up, but it was after 7am when he’s usually up.)

Once up he put some ointment on my back to try to soothe the spasm, but it didn’t help much. A little while later we headed to the doctor to get some drugs that would actually help.

Mr. Lyndsy was upset I hadn’t woken him sooner. People online were surprised I didn’t wake him sooner.

Here’s the thing, I constantly feel like a burden already. I didn’t want to be EXTRA burdensome by disturbing his sleep.

Spoonies, even those with the most supportive partners, often feel like burdens because we can’t do all the things we think we should be able to. Some of us can’t work full-time like we used to. Others can’t help keep the house clean or cook. These things make us crazy. We try to do what we can, even to the point of hurting ourselves, but we rarely feel like it’s enough. (Occasionally this is made worse by outsiders who add their commentary about how bad they feel for our partners, having to pick up the slack.)

We try to be as un-needy as possible all the time. We minimize pain we’re having or hide it altogether. We just don’t want to burden those we love.

So when something happens that we believe is going to be an additional pain in the ass, we’re indecisive about what to do. Can we manage on our own? How much should we try before we go to our partners? What’s the pain point that we really just can’t take it anymore?

That’s where it has to get before we’ll reach out. Especially if our partner is doing something they really enjoy, like sleeping or playing video games or out with friends.

It all comes back to the fear that one day we’ll be too much for someone. One day our partner will hit their breaking point and that will be it. So rather than push it to that point, we do everything we can to be as self-sufficient as possible. Because we believe we’re already a weight on our partners’ backs every day.

1

Goodbye to a friend

My last year of law school I took a class on politics. Thoroughly bored with the law, I wanted to spend time in a class where I would enjoy the material. An adjunct professor, Peter Schalestock, taught the course since he had extensive experience in politics.

The very last class of the semester I had a presentation to give so I didn’t read the assigned material figuring I wouldn’t get called on. Apparently I wasn’t the only one. Instead of looking away while Peter was searching for someone to discuss the material, I looked directly at him. And then he called on me.

Rather than try to bullshit my way through an answer, I said, “I’m not going to lie, I didn’t read for class.”

He responded, “But you looked like you had something to say.”

“Oh, I always have something to say. It’s just not always relevant.” The entire class laughed, including Peter.

After the class was over, he and I got to talking. For an hour in the entrance to the law school. Six months later, he was at the campus bookstore while I was working in the office next door. I ran out to say hi. At the end of the conversation, he handed me his business card and said, “Now you can prove to your friends that you know a Republican.” I got a good laugh at that.

Eventually I did email him and we started hanging out. He was swamped that election season. He was an election law expert and there were tough contests across the country. Surprisingly he spent a good deal of time in Montana. I asked him why that was, since there were probably more moose than people there. That became a running joke for us and that year for Christmas we exchanged moose gifts. He got a stuffed moose from me and I got a moose shot glass from him that I still have.

Not long after he moved to the East Coast for work, but we stayed in touch. I got a RUDY card from him for my law school graduation (he worked on the campaign until it imploded). When he visited Seattle we got together.

I was sort of floundering my last year of law school. I knew the law wasn’t really for me, but worried about that since I’d spent three years getting the degree. He assured me that there were other things I could do with myself and that it was okay, even normal, for me not to want the lifestyle of a lawyer.

We stayed in touch through Facebook over the years, exchanging messages here and there.

I found out today that he passed away yesterday. He’d had a long battle with his heart, and it seems that it finally gave out.

The world lost a great man with his passing. He was genuinely kind-hearted, brilliant, and funny. I will miss him greatly. In honor of our friendship, I bought myself a new necklace. When I wear it, it will hang close to my heart.