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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.

My nose is full of… stuff

Last Sunday I finally had the septoplasty, turbinate reduction, and maxillary antrostomy. For those playing at home who aren't doctors - the cartilage in my nose was crooked, the bubbles that humidify air when we breathe in through our noses were too big, and the openings to my cheek

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Uterus Free!

The hysterectomy was my fourth major surgery. What makes this one weird is that I don’t really feel the effects of it just yet. My first surgery was a microdiscectomy (removing herniated disc material) at the L4-5 (lumbar spine). I went into the ER because I had so much pain I cried every time I took a step and I couldn’t walk upright. As soon as I woke up from the surgery the pain was gone.

The second surgery was the spinal fusion. That one sucked because they did some nerve damage, but the sensation in my left leg was back to normal. (I went to see the surgeon because of the declining sensation in my left leg. He ruined the sensation in my right.)

My third surgery was the tendon transfer to correct the foot drop from the second surgery. I was in a cast but knew that I’d be able to move my foot up and down finally again. They had me try when they changed out my soft cast for a hard one. It was so cool.

But this time? This time they took out an organ that gave me problems. I mean, I’m not bleeding now, but I’d gotten a break just before the surgery and wasn’t bleeding then. I think it’s going to take me a couple months with no bleeding to really feel like something was done. I mean. I have the pain from the incision and the memory of the doctor pulling out the drain they put in. That was the single most painful experience of my life. I cried while they did it and I cried after. It was horrible.

I haven’t worn light-colored pants since 2002 since I could never be sure what my uterus was going to do. I don’t think I’ll stock up my closet with khaki pants anytime soon, but it’s nice knowing that I could if I wanted to.

Walking on Sunshine

The change in my mood has been remarkable since I found out that I would be moving forward with the hysterectomy. For people who are chronically ill, the difference between getting good treatment and not is HUGE.

Being chronically in pain or ill is depressing enough. When you compound it with feeling frustrated that your medical providers aren’t listening or don’t seem to be working toward a solution to the problem it becomes almost unbearable. At that point it’s like there’s no end in sight. The thought of living that way FOREVER is pretty heartbreaking.

I saw the ENT this week as well. He reviewed my CT scan with me and sure enough, my septum is deviated. He said that with surgery I will be able to breath better and suffer fewer sinus infections. Since I’m trying to do a half-marathon (that idea seems crazier and crazier to me now as I cut into my training me), I need to be able to BREATHE while I walk quickly/jog. So, we’re moving forward. My tentative surgery date is November 5. That’s probably too close to the hysterectomy, so we’ll likely be pushing it out a week or so.

I am so thrilled to be moving forward on these two things. Finally not having to worry about endless bleeding and heavy bleeding is such a weight off my shoulders. It’s seriously felt like there was an elephant trying to balance on my head or shoulders. It’ll take a bit after the septoplasty, but to be able to breathe well at night should reduce some of my fatigue during the day and give me the energy I’ll need to train and finish the half.

The other thing I’m excited about is that my shrink gave me a prescription for ADHD medication. I tested “average” on the cognitive skills assessment, which would normally mean no drugs for me. However, given my symptoms she thought I could try it for a month and see if it helps. I won’t be starting until after the hysterectomy though. It’s probably a good time to start since I won’t be doing too too much physically and will have be largely focusing on mental tasks.

These last couple months have been great in terms of moving forward in my health. I hope this trend continues into the foreseeable future! I’m not sure what else I can control at this point, but who knows.

A weird thought

A few days ago my friends and I started joking about turning my body parts into characters in a novel. I was building out a whole storyline based on my medical history, not just about the problems with my uterus.

But, the more I thought about my uterus as a character (played by Julia Roberts), the weirder it got. I have this image in my head of Uterus standing outside of a house, sad and lonely, having just been kicked out by everyone else because she’s been so disruptive (screaming and throwing blood everywhere).

I have always been the person who felt bad for stuffed animals left over at the end of a season, and I tended to buy them myself. When I see someone who’s been excluded, I feel bad. So then I got to feeling bad about kicking Uterus out.

I mean, it is weird, the idea of taking a part of your body and essentially throwing it away. However, if my arm were causing me the kind of problems my uterus does, that shit would be off my body so fast. My cycle (or lack thereof) wreaks havoc in my life. On top of all my other conditions, I just cannot deal with it. It is a physical and mental strain I just don’t want to deal with anymore.

This isn’t about me not physically having children. The idea of being pregnant has always freaked me out. It seems like a parasite just taking your nutrients and making you feel like shit. In my opinion, there is nothing LESS NATURAL than dealing with that for 9 months and then trying to shove something the size of a small watermelon out of something the size of a lemon. I hear the hormones make it so you don’t remember any of that mess, which is how mothers are able to love their children.

Still.

I also know what happens next in the scene. The people in the house feel bad about kicking Uterus out, so they let her back in. You know what she does next? She continues to go apeshit, shrieking and throwing blood everywhere. HOW ABOUT NO?

I’ve played this game with my uterus before. Thinking everything is getting better only to learn that no, everything is the fucking same. While that sounds like a party, I think I’ll pass. I’m over having Carrie as my uterus.

So, goodbye and good riddance.

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.

 

 

 

Trouble getting going

I feel like I’m trapped in molasses right now. I think I want to do things, but actually getting up and doing them is challenging. I did make cookies today, which surprised me, since I haven’t been able to get up the will to do it the last couple of days. This may have happened because I was hungry, and haven’t gone grocery shopping since I got back.

I’m really struggling with the WILL to do things as well. So I guess it’s sort of like a two-phase problem. There are some things I don’t have the will to do, and others that I want to do, but feel stuck.

I’m also not really able to sort of stick to goals I’ve tried to set. Like blogging. I try to do it three times/week. Clearly that hasn’t happened recently. I get busy and this gets dropped by the wayside. Knowing that I want to do it, I should plan for it, but I don’t. On Monday I had a meeting that I needed to be somewhere from 8am-1pm. Then I wanted to go to the doctor, but got sidetracked by something else, and didn’t get back from the doctor until after 7:30pm. By then I was pretty spent for the day.

I guess the real problem is that I don’t treat the things I want to do seriously. Part of the problem with working from home is that the day doesn’t have the structure that working from an office does. Things sort of just slide around. When I worked from an office, I knew that I had X amount of hours when I got home to get things done. I felt some pressure, and that encouraged me to do what I wanted.

Now, the days just sort of slip by. Before I know it, I’m as tired as I get, and I crash. It doesn’t help that I’m tired throughout the day as well. I suppose constant fatigue can get in the way of goals at times.

I am working on getting the fatigue issue sorted out. I saw an ENT the other day and learned that my nose is blocked – so I’m not getting the right amount of air in. We’re trying a nasal spray for two weeks and will see where I’m at, maybe do a sleep study. At this point I would love to have some energy during the day to get things done and feel like myself again. I hate feeling wiped out all the time. It’s gotten old.

Perhaps I should cut myself a little slack.

My fibro isn’t Lady Gaga’s fibro

Lady Gaga has fibromyalgia. I’m sorry for her. Having fibro sucks.

And apparently people are now talking about fibromyalgia. This is GREAT. A lot of people, doctors included, don’t think fibro is a real thing. They think it’s all in the mind or some bullshit like that. It’s not. Functional MRIs can now show us that fibromyalgia is a real thing. In case you don’t believe Lady Gaga, here are 15 other celebrities who have it.

What concerns me about Lady Gaga sharing her experience is that people are going to hold her up as the model for fibromyalgia, and compare the rest of us to her.

It’s not fair to say, “Well, Lady Gaga swings from a trapeze while singing during her shows and she does shows all the time. Why can’t you come to a party?”

That’s not how chronic illness works.

First of all, fibromyalgia is characterized by three main things: widespread musculoskeletal pain, fatigue, and localized tenderness. How strong each of these is and how often they affect someone depends on the individual. There are an estimated 5 million people with fibromyalgia, so you’re basically looking at 5 million different cases with different symptoms.

Second, a lot of people with fibromyalgia have other chronic health issues. That’s right. As if having fibromyalgia wasn’t crappy enough, we get hit with more. Take me, for example. I have lupus, Hashimoto’s thyroiditis (which may be an expression of the lupus), anxiety, depression, Type 2 diabetes, IBS, and chronic back/leg pain (after a spinal fusion that went kind of wrong). All of these affect my “activities of daily living.” So even if fibro isn’t kicking my ass on a given day, something else probably is.

Third, medical things aside, we’re all VERY different people. We have different expectations for ourselves, different lifestyles, and different life situations. Lady Gaga and Morgan Freeman and whichever other celebrity has fibro are all in a completely different place financially than I am. They may have help to do things that I don’t have – someone to clean their house, someone to do their hair, someone to drive them places. Us normal fibro sufferers have to weigh the costs of our actions against our plans for the day and week. If I know that I have to do laundry, wash dishes, and vacuum, I know that I’m not doing much else that day. Those individually cause pain. Together they’re a nightmare.

So yay, fibromyalgia is getting some attention. I just hope that people do research on it and don’t just assume that it’s the same for all of us. Because it’s not.

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.