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When to make a change

Sometimes I like to torture myself by thinking about what I’d be doing with myself if I felt well enough to work like a normal person. If I could be doing anything, what would I do?

I do direct sales. I picked what I did because I like the products. However, I think I’m a shitty salesperson. I hate feeling like I’m pressuring anyone into anything.

What I’m thinking about now is whether to give it up. I’m not really making money at it, but that’s probably because I’m not really working them. I’m not looking for new customers for the products. You can only sell to your warm market for so long.

I don’t know if it’s that I don’t know how to do it or because I’m not committed to the sales part of it. For my main company, I love the product. I live in it. But for some reason it’s not translating into sales well.

Do I give it up? I’ll have to hustle to even be able to do that, but should I move on that course? Did I just put myself in a weird position because I’m not around the product all the time? It’s hard when I can’t go to vendor events because I’m just not in the country.

Ugh. Being an adult is such a crock of shit sometimes.

It’s also never a good idea for me to make decisions when I’m not feeling particularly well. I just want to give up EVERYTHING when that happens.

Part of the issue is that I’m focusing on getting my health in line right now. That is, without question, my number one priority. Without my health being as good as possible I’m just kind of miserable. Feeling like that makes doing anything fun really hard. Being tired makes doing things hard.

I guess I shouldn’t make any decisions until I’ve exhausted (see what I did there), every possibility for making myself feel better. It’s like not going grocery shopping when you’re hungry.

Thanks, friends, for listening while I ramble.

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.

 

 

 

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.

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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??*

 

Layer by Layer

I’ve been working really hard this summer to try to learn as much as I can about my chronic health issues. As I’ve peeled back different things, I’ve learned more. One thing I believe I’ve learned is that I have ADHD.

Yes, I know, I can’t diagnose myself. No, I haven’t been diagnosed by a doctor yet. No, I wasn’t diagnosed as a kid.

It started with a Facebook post.

What struck me was “I literally cannot recall the words that just came out of my mouth.” That happens to me with alarming frequency. It also applies to text messages and instant messages on FB/Google. I’ll type things and have no idea immediately after that I wrote them.

However, it had never occurred to me that this was something that happened to other people. I always thought it was weird, but that was it. So I posted it and asked if it was really an ADHD thing. I was told it is.

Which led me to do some research on ADHD. It was then that I learned that I have a LOT of the traits: Inability to finish projects I start; delayed start on any project that involves a lot of thinking; impulsivity (mine is spending and eating); finishing people’s sentences when I can’t wait for them to do it. There were others, but these were the highlights.

I thought back to when I was a kid as well. I was never diagnosed, perhaps because I was always a good student. I LOVED school (until I hit high school). But, I was always a chatterbox. If a teacher didn’t re-direct my behavior I talked to other kids who were still working. In high school a Spanish teacher offered to just give me a B if I didn’t talk to anyone else in class. When something didn’t interest me, I didn’t deal with it. I stopped being a great student in high school because I was bored with school. High school was also when I developed a dislike for authority figures and was defiant.

I’m tired of being the person who doesn’t finish projects. I’m tired of being the person who can’t compete in direct sales because of my inability to make plans long-term for myself or follow through on them. I hate that I’m not controlling my spending and how it affects things I want to do.

I am REALLY tired of being distracted all the time. Of forgetting what I set out to do when I stand up. Of getting up to get water, and finding 30 things to do on the way. I want to be able to focus on things. I want to remember important things I need to do.

I won’t see my shrink again until September, but that doesn’t mean I can’t work on things in the meantime. I’ve borrowed books from the library on ADHD that include coping behaviors so that I can start NOW to do what I can to make things better for me. I have a planner that’s broken down into hourly segments so I can put myself on a schedule so I get things done. I’m using an app called Habitica to track my To-Do list so things don’t get forgotten (like paying bar dues). I’m going to start posting my goals where I can see them so I remember to do them. I’m very “out of sight, out of mind” and that’s a detriment.

I want better for my life. It’s going to take a lot of work on my end to come up with workarounds. But I’m tired of feeling like a failure, so whatever work it takes is worth it. I’d appreciate any positive thoughts you can spare and wishes of good luck!

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…

Fatigue is a TOTAL DRAG

I know I’ve mentioned before that fatigue is one of the symptoms of fibromyalgia, diabetes, thyroid issues, lupus, etc. Since my thyroid and diabetes are under control, I suspect it’s not them. It could be the lupus. But the most likely culprit for the cause of the fatigue is fibro.

I don’t know what’s going on, but the last few weeks have been *really* bad. I downloaded and app for the AppleWatch that tracks your sleep for you. I figured that I’d have some issues since I know I don’t sleep particularly well – I wake up a lot, I toss and turn (can’t figure out why), but I didn’t expect that it would be this bad.

From the output, my deep sleep ranges anywhere from NO DEEP SLEEP to no more than 45-50 minutes usually. Most people need/get 2 hours of deep sleep.

This wouldn’t be a problem except that deep sleep is the restorative sleep. This is the time your body takes to heal itself. Because my body isn’t really getting a chance to do that, I’m constantly fatigued. I have pain. My brain is sluggish.

I tried using binaural beats to help induce delta waves, but that had limited results. It doesn’t help that right now I’m at a hotel with a crappy bed that’s way too small for me and Mr. Lyndsy to share it comfortably. Perhaps when I’m back in my bed and I have space, the binaural beats will have more of an effect. I hope so anyway.

When I’m back with my own doctors I will definitely be chatting with them about this. I’m sure (read: I hope) they’re all familiar with the necessity of deep sleep. I have no idea what the plan may be to correct it though. I’m not sure that my shrink will want to prescribe any kind of sleep medication since I’m already on an anti-depressant that’s supposed to be addressing it. I’m not also not sure that’s the correct solution since I do fall asleep and I can stay that way for 8 hours. (I think that’s a side effect of exercising 6 days/week.)

I am desperate to find a solution because I’m pretty sure at some point the body just shuts down when it’s not getting the time it needs to heal. At this point I can’t afford to have any more health issues. I have enough trouble managing the ones I have!

This is something I was thinking about the other day. Currently I work part-time from home, but at the point we move back to the United States (if we do), I may have to go back to work full-time outside the home. Right now I don’t think my body could do it. These days I’m not really taxing my body and mind the way working full-time does. Sitting at a desk for hour after hour while typing causes an immense amount of pain in my upper back and arms as well as my lower back. Additional pain will only exacerbate the brain fog.

I have a friend who has been going through the Social Security Disability process. Her doctor said something that has started to resonate with me: Her main job is to manage her illnesses.

At the time she shared that I didn’t understand what that meant. Now I have a better idea. I work out which keeps my body pretty stable and I sleep better when I work out (which isn’t saying much, apparently). I rest when I need to so that my body doesn’t collapse on me. I eat better, which is probably helping my body – giving it more energy for the workouts which are helping me sleep better.

But until I get all, or as many as possible, of my health issues worked out, working more isn’t a possibility. My focus right now HAS to be on getting things under control. They just aren’t right now. I’m working on it, but I’m not there yet.

And that’s okay. These are BIG issues for me. They take time to resolve. There’s just no way around that. Organs are being affected. My musculoskeletal system is involved. My brain is a little fried right now.

So right now, my priority is my body (or, as it is now known, My Preciousss). Once I get my body better sorted, I think many other things will follow.