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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.

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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.

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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.

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A Food Challenge

Mr. Lyndsy left yesterday. After 40 fun days in the US he’s back in the sandbox. And I’m here. Without him.

However, he made our separation interesting. He told me that while we’re apart, I should work on eating better. I’ve got the working out thing down, but the next part is to change my food habits. This means eating fresher foods, avoiding processed foods, things high in sugar, and not too many carbs (especially the simple ones).

I know he’s right about this. That doesn’t mean I want to do it. Because you know, M&Ms, cupcakes, soda.

However, to not focus on us being apart and how much I absolutely LOATHE it, I decided it would be fun to see his reaction after I’d been at the gym for a month without him seeing me every day. It’s hard to see changes when you’re around someone every day, but a month? That can be quite a long time when you’re putting in the work like every day.

Eating better just ups the chances that the changes will be that much more dramatic. Which makes it exciting. Of course, I am NOT a patient person so when I hop on the scale tomorrow I’m going to pissed that I haven’t lost 10 pounds after just one day of healthy eating.

Yes, I know that’s irrational. But you should know that about me. I still believe unicorns.

Anyway, here’s to healthy eating for like 32 days. I’m looking at it sort of one day at a time. Because right now I’m hungry and all I can think about is candy.

FEED ME THE CANDIES.

I mean, I’m thinking about pineapple. Yeah, pineapple.

*I picked this picture because it made no sense. A pineapple just sunbathing on someone’s lawn??*

 

I guess I have to keep working out

I work out 6 days a week. Sunday is my rest day (right now anyway, that will probably change when I’m back in the sandbox).

What I have discovered the past 3 Sundays is that I sleep a lot on rest days. Like, not up and moving until after 1pm. When we were driving back on our road trip, I slept while Mr. Lyndsy drove.

Mr. Lyndsy doesn’t see anything wrong with this. It is, after all, the rest day. He believes I should take it to rest. I don’t like that I’m doing it. I feel unproductive and tired. He said, “Join the club.” I guess he’s exhausted on his rest days too. The problem is that it’s not like I have much to do. He goes to work and his job is both physically and mentally engaging. I don’t have that.

What dawned on me the other day though is that this is exactly what happened before we started working out after getting back to the U.S. In the sandbox I’m not up until 1pm or even later some days. I’m only up in the mornings for doctor appointments or group meetings. If I don’t have anything to do, it is almost physically impossible for me to get my body moving. Even on previous trips to the US, I wasn’t up until 11am.

Before I considered what was happening on the rest days, I was excited! I thought I’d beaten whatever was keeping me trapped in bed. To say that I’m disappointed is an understatement. I suppose I should be focusing on the fact that working out DOES get me up, but when you’ve got as many medical conditions going on as I do, it’s nice to think you’ve conquered something and can take it off the list.

I still feel fatigued during the day, every day. Some days are better than others. I still think this relates to the lack of quality sleep I have going on. I’ll investigate this when I’m back in the sandbox, but it’s something I can think about and research in the meantime. I may as well go back to my doctors armed with as much information as possible.

My shrink told me that if the meds make me tired, I should let my body rest. But we have since changed the medication and I’m on an extended release form. That should have alleviated the problem of oversleeping. Now that I suspect I’m not getting quality sleep, that changes the equation. At least in my opinion. But what do I know?

I really want to try to work out the best possible scenario for myself. I’m tired of being fatigued. I’m tired of being distracted all the time. I’m tired of not being able to focus. I like that my mind explores loads of different things and makes connections in lots of different ways, but at the same time, standing up and not remembering why is very frustrating.

At any rate, working out is now more important than ever for my health and my life. While I was committed to it before, my resolve is even stronger now. 

A New Way of Life

I knew that I would enjoy working out to prep for the Disney Princess Half Marathon in February. I have always enjoyed working out since I get a sense of accomplishment pretty much every time I do it.

I had NO idea that this was going to become a THING for me. I’ve hit the point where when I’m frustrated or pissed off, I want go to the gym and hit the weights or even *gasp* run/walk. That’s completely new. Working out was a means to an end – be ready to do 13.1 miles and not get picked up by the bus of shame.

Now though it’s just part of my almost daily life. I don’t know if it’s because I’m working out 6 days/week, or if it’s because I’ve been going with Mr. Lyndsy, but it’s something that I can see continuing forever. There may be some bumps in the road depending on how things go medically in the near future, but I’ll cross that bridge should I come to it.

The catch to this is that I haven’t really been eating better. We went on a road trip and I definitely over consumed sugar and crap. I justified it as needing a boost in energy, but that doesn’t really fly. Now that we’ve landed back at the house, it’s time to get this part right too. I don’t feel like I see a tremendous difference in my body and I’m sure that’s due to the fact that I haven’t been eating well.

I’m an impatient person and I know that Rome wasn’t built in a day. I didn’t put the weight on overnight (though it feels like it) and I won’t lose it overnight either. However, that doesn’t change the fact that I just want it all to fall off.

It takes 21 days to form new habits (I think I read that somewhere) so I need to find a way to make eating better a habit. I’m just so lazy…