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.

 

 

 

I’m so proud of the NFL today!

Y’all, I am just THRILLED at the response from NFL players, team owners, and coaches. I teared up reading this post from Mother Jones about how many players/owners/coaches took a knee, stood with arms linked, or just straight up decided not to take the field for the national anthem. I’d also like to give a shout out to all the performers who took a knee this weekend.

This issue has been going on for over a year now, since Colin Kaepernick decided to take a knee during the anthem. For doing that it seems like his career is completely derailed, which is incredible bullshit. But that isn’t the point I’m trying to make. My point is that in a year, people have not figured out that this isn’t about the anthem or the flag.

People (who don’t appear to have served in any branch of the military) go off about how it’s disrespectful to servicepoeple and veterans if someone kneels during the anthem. These people have somehow woven together the military, the flag, and the anthem.

  1. The flag represents the country. Period. Yes, the military fights for the country, but they’re fighting to protect our freedoms. These freedoms include – wait for it – the right to free speech. An act can be speech. An act like, kneeling.
  2. The national anthem is racist as hell. It’s been chopped by a stanza because the missing stanza talks about slaves and basically the worthlessness of their lives. Pretty sure we should be looking for a new national anthem. Perhaps, America, the Beautiful?
  3. They aren’t letting veterans speak for themselves. As I saw posted on Facebook earlier today, veterans are not a monolith (rather like people of one race aren’t – like black people or Muslims). They don’t all think or feel the same way about issues. So I am sure there are veterans who hate that anyone takes a knee during the game but there are many others who are pleased to see it because it means that their service is validated. People are exercising the rights they fought to protect.
  4. If they want to talk about dishonoring the flag, they should worry more about bikinis that rest on someone’s cooter and not someone who isn’t actually touching the flag when they kneel. (We do all kinds of things that dishonor the flag (per the Flag Code) all the time. Every day. Almost every change we get.)

I don’t know if this focus on the military is just a way to try to shit away from the fact that people (probably almost all white) still don’t get why black people are upset at the way things are going in the US. That we are still a damn racist society and that it’s systemic.

I saw someone who said he’s pissed because people are looking at the police officers and saying/thinking they are ALL racist. While that is demonstrably untrue for the majority, its’ also incredibly fucking stupid. He was trying to point out that there are just a few bad apples. The problem he’s ignoring is that a few bad apples placed in positions of authority sour the entire bunch. THAT is the problem. THAT is what’s being ignored. THAT is what we have to solve. Until people can get on board with that, we’re going to continue to wallow in shit.

And Trump. That guy. He’s proven, conclusively, his leanings toward white supremacists. He says that there are “nice people” on both sides (talking about the alt-right Nazis and the “alt-left”) but that people who kneels are “sons of bitches.” What else do we need to just admit that he’s got some really fucked up ideals and that he shouldn’t be POTUS? Even his friends are turning on him now – people who donated millions to his campaign, opened rallies for him – are saying that he’s wrong.

Well, it’s about damn time.

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.

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.

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.