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My new word for 2017: Me

My word for the year was “determined.” Really, it was, “I am a determined unicorn.” A good friend of mine says that we shouldn’t pick words in an attempt to outsmart the Universe, but I feel like my choice of determined is sort of kicking my ass. It seems like what I did was invite challenging situations to show just how determined I am. Like my regular life wasn’t enough for that. Ahem.

When I picked “determined” I was thinking about my commitment to my growing direct sales empire and making sure that I’m doing the most I can to succeed. I have been making strides toward that though the first 4 or so months not so much. I got caught up in being overwhelmed and having situations sort of fall apart that made it harder to do. I didn’t have focus. Some of that was because I had no idea how to keep all the ideas that were flying around in my head coordinated. Y’all, I don’t know what the hell happens up there, but it’s like a party with a loud DJ and no chaperone to tell it to stop.

I also wasn’t on the right meds at the beginning of the year. My emotional state was a bit of a mess, though I felt a bit better physically. Now I’m on the right meds, but my body is sort of taking a crap on me. To really have things move along sort of smoothly, even a little smoothly, is that my body and mind need to work in conjunction a bit better. They both need to be sort of okay. I still have some anxiety issues and dips into the dark places in my mind, but it’s happened less often. My body though? Ugh. I seem to be out of a fibro flare that lasted a good long while, so that’s positive. I just wish my lady garden would get with the program.

That all brings me to the point that I still need to be focusing on ME. I need to focus on getting my body together. I need to be more functional. Less tired. More able to wake up and get going. I need to take advantage of the fact that my mental health is more stable so I can be creative. Creativity is how I know that I’m okay. If I’m not creating, something is wrong. I read a lot more when things aren’t great. It doesn’t require any effort on my part.

I have found ways to keep the craziness in my head somewhat controlled. I am working on systems to make sure I complete things I want to complete and still get to create. I need to get a bit better about it though to fully explore everything I’m interested in. But, I really need my body to get more with me before I can do that. I hope that happens somewhat soon!

Anyway, thanks for continuing to read along! I do hope to add some more sound to this at some point so you can hear me rather than just read me. Maybe even a video from time to time! And as always, I appreciate the kind and positive vibes you send me. I do think they make a difference!

Waiting is the pits

IN my never-ending saga of medical drama, I had a D&C yesterday so that the doctors can try to figure out why my uterus hates me. This isn’t the first time I’ve had one. I had polyps in 2008 that they took out by D&C. I assumed it was polyps this time too. I was wrong.

Turns out, it was an abnormally thickened endometrial lining with cystic lesions and increased vascularity. That doesn’t sound good, and Dr. Google confirms that’s likely the case. They’re calling it endometrial hyperplasia and the goal now is to determine if that’s true, the type (with or without atypica), or whether it’s cancer.

So now I wait.

I’ve already researched the hell out of all of it. Apparently 30-33% of cancer cases started as endometrial hyperplasia with atypia. If it’s atypia or cancer, the uterus comes out. If it’s cancer, the ovaries go too. I’d like to keep the ovaries to avoid an early menopause, but I’m not fucking around with cancer. Most of the time if there’s cancer in the uterus, it’s also in the ovaries. Thanks, but no thanks.

So I’m left with two weeks before my appointment, knowing the results will likely be available after a week. That’s the type of waiting that kills me. SOMEONE knows what’s going on, but it’s NOT ME. I want it to be ME. Even if I couldn’t see the doctor, I could get the report and obsessively research whatever it is. I like to be informed so I can ask good questions while I’m with the doctor, rather than getting the information and not knowing what to ask while I’m there.

At the end of the day, it is what it is. I’m trying to fill my time with creative and productive activity so I don’t worry. I ordered a puzzle that should be here before too long, which will hopefully take me some time to complete. I’m going to try to spend more time designing cross-stitch patterns, t-shirt and sticker designs, and some things for the direct sales companies I work with.

It’s still going to be a tough two weeks. I doubt I’ll make it that long. I think they have my appointment with the wrong doctor anyway, so I may try to do a walk-in appointment. I also need to go to the dentist for a cavity and also get a pap smear (since the doc saw something she thinks needs to be checked out to make sure it’s not cervical cancer – joy), so maybe I’ll sneak in then.

Before anyone tells me that it’ll all be okay, I won’t need a hysterectomy, please understand that whatever is needed, I’m fine with. I’ve had problems for so long that the idea of hysterectomy is actually a relief. I just need to get things better, so I’m less stressed and have less pain. I can’t deal with that on top of everything else.

I’m trying to keep it simple, stupid 😉

Wiped out

This week has been long and draining. I have had less energy than the last few months. It’s made being productive an incredible challenge. Because I hate losing, I’ve been doing things I want to (since it’s on an app that asks me whether I’ve done things and I won’t lie to the app), but it hasn’t been as exciting for me to do.

I’ve accepted that pain and discomfort are a regular part of my life now. I didn’t know that in 2014, and for a long while I expected that everything would turn around and I could go back to my old life. Accepting it hasn’t really made life easier. I guess I don’t get disappointed as often. I don’t wake up and then get sad when I realize that my right leg still doesn’t work the way it’s supposed to.

I think the real problem is that acceptance only covers what exists at the time you accepted your life. New problems don’t get factored in, particularly for things that never would have occurred to you. Perhaps that is why this week has been worse. I’m dealing with something new and mostly unexpected. Well, blah on that.

My life feels a little like Frogger. I’m darting around the highway trying to get to the other side while avoiding a collision with a car. (Side note, I’ve seen a frog get hit by a car and it is NOT pretty. Strangest thing was that the frog seemed to purposely jump under the tire.) Jumping around while the highway is packed is exhausting. You move forward only to have to move back. Then you jump sideways and realize you didn’t get anywhere, so you panic and jump without really looking first.

Argh. I’m tired. I hope this finds you better than I feel now.

Spoonie Life Complication #2: How much is too much research?

Spoonies spend a lot of time at the doctor. I have to go every three months for blood work and follow-up to make sure everything is under control. That’s for non-acute issues. If I get sick in the meantime, I have to go back.

One of the problems I’ve had, and I know other Spoonies have faced the same issue, is that we have to advocate for ourselves. It can take a while to get a diagnosis with something like fibromyalgia or Hashimoto’s. It’s frustrating because we know something is wrong, but we can’t get treated for it. So we stay sick. And we get pissed off. So we go to the internet.

Now, I know that Dr. Google is no substitute for a real medical opinion. However, the internet is a wealth of information, and we can get access to medical research and studies somewhat easily. For a frustrated person, this can be amazing. We’re able to arm ourselves so we can ask our doctors better questions. Let them know that we are invested in our care.

At some point though, the question is how much is too much research? I’ve recently been to have a new issue checked out. I got weird vibes from the radiologist when she went from being chatty and friendly to saying “Your doctor will tell you what it means.” Well, okay.

After meeting with the doctor, who indicated things were mostly fine except for one issue, I went home a touch confused. So I hit the internet. Mostly what I’ve done is make things harder for myself when really all I can do is wait and see what happens further down the road.

I want to be well-informed, but at the same time, I don’t want to worry needlessly. It’s just a rough position to be in.

But, it’s a pretty common part of being a Spoonie.

Validation Status: Pending

I have trouble getting help when I need it. Whether it’s physical health or mental health, I tend to put things off.

When I was 20, my senior year of college, I started having trouble with my periods. They went from being normal periods to unbelievable torrents of blood. The kind of blood loss that you would think could kill you. But, I knew from friends that sometimes it’s like that. I didn’t think much of it.

But, it continued for two years and I couldn’t deal with it anymore. It was insanely overwhelming to deal with the heavy bleeding. So frustrating every month to have the same thing. I went to the doctor, but all my hormone levels were normal. They put me on birth control and I got some relief, but ended up with terrible cramps.

The next year I read about the amount of estrogen in the birth control was using so I stopped. I went back to heavy blood flow, but the blood flow became constant. It wasn’t always heavy, but it was there at least 3 weeks per month. I kept on, but it started to interfere with my work. It was 2008 and by then I’d moved to the other side of the country so I sought out another doctor. This time they decided to do an ultrasound.  This is when they discovered polyps in my uterus.

After they took care of them, things were okay for a while, but now it’s 2017 and I’m back to where I was in 2008. Things have been off for a while, but I resisted the doctor.

The first time I remember having suicidal thoughts was in 2008. My life had hit a point where nothing seemed to be going right. It felt like I had no control over anything that was going on and that there were no good outlets. I even had a plan, to minimize the damage it would have on the lives of people I cared about. Somehow, this didn’t seem out there to me. It didn’t seem like I should talk to someone. I thought because I could rationalize it in my head and talk myself out of it, that I was okay.

I was in an abusive relationship, living with the man, for months. After we broke up, I didn’t get help. I figured that because I worked my way out of the relationship, that I was okay. Even though the smell of his cologne on someone else took me back for years, I didn’t do anything.

When I was 22, I was raped. It was a friend, and I was in a compromising position with him, so I thought that I was the one who created the situation and that it was what I wanted. It was my first time, and what he said was, “Well, I guess you’re not a virgin anymore.” And that was that. Even when he said later, “Are you ok with what happened? You know, since I didn’t ask you first?” I didn’t think anything of it. Even though he used the textbook definition of RAPE. I never talked to anyone about it for years.

My problem is that I need validation from other people to know that what I’m feeling is legitimately a concern. It wasn’t until coworkers convinced me I needed to go to the ER because I could barely stand and couldn’t walk upright that I did something aggressive about my back problem. I ended up having surgery THAT DAY because the problem was so bad.

After I broke up with my abusive boyfriend, someone asked me, “How could you let that happen?” I internalized that to mean that it was my fault that I’d been in the relationship. Therefore anything I felt after was also my fault and not something I should get any help for.

It was only a couple years ago that a few people suggested I might want to get psychological help for the rape and consistent low feelings I was having. Even then, I thought I was fine.

I recently had stomach pains so bad that I couldn’t stretch my abdomen. It wasn’t until Mr. Lyndsy said I should go to the ER that I even truly considered going. It’s like the things that happen to me aren’t anything. I had a spinal fusion and tried to go to work 2 weeks later because the doctor told me I could go back when I felt like it. I took that to mean I shouldn’t be out of work at all.

Now, if this were a friend coming to me, I would have told them they were nuts to go back to work two weeks after a spinal fusion. That rape is traumatic. The list goes on. But when it comes to me, what I feel or experience isn’t enough. It doesn’t have meaning on its own. It’s hard to put into words. But it’s sort of like feeling like I don’t matter. But even that’s not the right description. I guess it’s more that I always feel like I’m exaggerating.

I don’t know when this started. It could be from when I was growing up. I sprained an ankle when I was in high school. I missed a stair and came down on my foot sideways. My dad din’t take me to the doctor, just gave me gel to put on it. My mom told me if I thought it was that bad, to call the doctor myself. To me, neither took it seriously, so it wasn’t an issue. Never mind that it swelled up to twice its size after every basketball practice. I never went to the doctor.

When I was 7, I threw up. I went to the bathroom for the toilet, but I didn’t make it in time. After my mom got everything cleaned up, she told me that if I missed the toilet again, I would have to clean it up. When I told my mom about the constant bleeding, she told me that it couldn’t be real or I would have told her about it. After my abusive relationship ended, I asked her to fly out to help me. She said she was busy at work, so she didn’t come.

Most of the time I kept things to myself. I never wanted to be a bother to anyone. I still really don’t. I apologize to Mr. Lyndsy all the time because I am so sick all the time. He tells me to stop being ridiculous, but the feeling that I’m a dead weight is always there. I guess I feel like I need to justify any expenses that I cause because of my health.

I guess, the long and the short of it is that I need to have a chat with my shrink.

Life on a continuum

A good friend of mine wrote a book and she’s letting me take a crack at editing it. I just hit a part where she talks about how life is on a continuum, specifically related to where we think we are in relation to someone else.

I regularly think life isn’t fair. I went from being an active person to someone who spends a good portion of my day in bed. I’ve mentioned before that I have pain every. day. That hasn’t changed in three years and it doesn’t look like it’ll change anytime soon. That sucks.

But, there are people who feel worse than I do and those who feel better. That doesn’t really matter. I’m not them and they’re not me. My life isn’t their life. Their life isn’t mine. I have no idea where they live, whether they’re married, etc.

I wrote once about choosing not to have a child because of my health conditions. Well, it seems more likely than not that even if I wanted to, it’s not something my body can do. A doctor recently confirmed that it would be a “very high-risk pregnancy” given my age, diabetes, and lupus. But like I said, it seems that my uterus is actually quite hostile to the idea.

I get angry about that. I don’t even have the *choice* that so many other people get. Sometimes it’s made me hostile (only to myself, never at anyone) when there are pregnancy or birth announcements. But, I trust there’s a reason. So many things in my life have happened that put me in one place or another where I never expected to be but from which wonderful things happen. Right now I get great healthcare. I’m grateful for that because I desperately need it. Were I in the US, I don’t know that I would be getting that or that I could afford it if I were in the US.

Sometimes when I talk about how I’m unhappy with my constant physical pain or mental health issues, I get kickback from people who want to remind me that I should be grateful for what I do have.

Complaining about my current state doesn’t mean I’m not grateful for what I do have. But being happily married doesn’t change the fact that constant pain sucks. A lot. I don’t know how anyone on Earth could say that constant pain isn’t a big deal. Or that being so depressed that thoughts of suicide aren’t infrequent (though they happen less often now than before).

Just because someone thinks I’m better off than someone else, does not give them the right to tell me I can’t experience sadness or anger over the hand I’ve been dealt. It’s horrible to be denied that. It also means I’m not fully feeling emotions, which is unhealthy.

I can be grateful and pissed off at the same time. I can be sad about one thing and happy about another. I am more complex than that. We all are.

I will give you your suffering if you give me mine. I will give you your happiness if you give me mine. We all deserve that.

Spoonie Life Complications #1

*If you don’t know what I mean by “spoonie” read this.**

I labeled this post #1 since I am quite certain that there will be many more in the future. The one currently affecting my life is this: Spoonies do not have the luxury of not planning things.

I know there are many people out there who like to plan. But, for spoonies, planning isn’t a luxury. It’s a necessity.

Mr. Lyndsy and I are planning to move back to the United States as he’s decided to take a friend up on a longstanding job offer. For some, it’s just a simple matter of picking a place to live and going from there.

Unfortunately, I need to know whether the job comes with insurance. Given how crappy healthcare is in the US, I have to make a somewhat concrete plan. I cannot afford to live with crappy or no insurance. ONE of the medications I take for diabetes costs $350 without insurance. (Where I am now it’s covered by insurance, but even if it weren’t, it’s about $9 per month.) Even with insurance, I have doctor visits every three months, at a minimum. I see a rheumatologist, nephrologist, endocrinologist. I see a psychiatrist either every month or every three months. At $45 each, the cost adds up quickly.

After the spinal fusion I took off work for about two weeks before going back. I believe I’ve mentioned before that I didn’t take off enough time. I worked for two weeks before asking for leave on short-term disability so I could get better. Rather than let me take off the time, they terminated me. Since then I have worked part-time, from home. Given how poorly I feel just doing household activities, I am decidedly unsure whether I can even work a full-time job, which would be a requirement if I have to have the job that comes with health insurance.

Of course, a job with health insurance isn’t enough if my medications aren’t covered or if my co-pays are high. I can’t not go to the doctor. I have serious chronic illnesses. So now, I’m looking at picking a job that not only offers health insurance, but also pays well enough to cover those things. I’ve heard that Starbucks offers insurance coverage to most of its employees, but I’m not sure a barista’s pay is enough to cover my health life.

Okay, great. But that’s not enough. This job I’ll need to have, what do they expect me to be able to do? What’s the sick time like? When can I use it? Is there a minimum amount of time I have to be there to be able to use it? I’ll have the same questions about vacation, in case I burn through my sick time. There are days where I just can’t get out of bed. Is there a probationary period that would be affected by my need for sick time?

These questions don’t go through the minds of people who are generally healthy. They think about vacations they want to take, not wondering if they’ll even get to take any time off for something fun.

I know there are people who look at spoonies like me and think, “It must be nice to be home all day.” To them I say, no, no it is not. Because we have to deal with the feelings of inadequacy that come with not being able to be out, working, earning an income. We feel awful – unable to justify taking money from others and our partners, who have gone to work to earn that money. We don’t feel like we can spend it for us, for fun things.

I was once a person who worked 26 days straight – including weekends, more than a regular 8-hour shift each day. I left for work at 5am and didn’t finish with either work or class until 9pm. I did that for months because I believed in what I was doing and it was necessary. Now I’m a person who has trouble waking up in the morning. Who can’t stand and do dishes for more than 5 or 7 minutes at a time. Whose back hurts while dealing with a single load of laundry. I have trouble remembering what I’m doing AS I’M DOING IT. I forget basic words (yes, the other day I said “machine that washes the dishes” because I couldn’t remember “dishwasher.” It happens to everyone, but it doesn’t happen to everyone all the time, every day). Sitting and working at a computer hurts my back and arms. Breaks don’t always help. Good luck being a lawyer full-time! That’s ALL they do.

I hate that my life has been reduced to trying to figure out how long each day I can work, what I can do if I am to work, and whether I can do it long enough during the year to not exhaust my sick and vacation time. But, this is my life now. The only thing left to do is live it. What people need to do, however, is step outside themselves for a minute to consider what someone else may be going through.

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Day 30 is finally here!

THE END IS HERE! Not like the apocalypse, but the end of my self-imposed water only month. Not going to lie, I’m glad to be over it.

To be fair, drinking only water hasn’t been *that* bad. I saved a ton of money. I don’t think I ever really paid attention to how much I spend getting soda at fast food places. The soda is one of the reasons I go, but I just sort of slide into the pre-set value meals, even if that’s not really what I want to eat. (On a side note, I think I’m over most of the fast food chains. Blech. That food tastes so greasy and nasty.)

My skin is clear, but my skin is usually pretty clear. It had been giving me some issues, but I have no idea whether that was hormonal or related to my beverage consumption. Apparently it’s not food related.

I think I compensated for not having soda with other sweet foods. That may explain why my weight hasn’t gone down. (Actually, it’s gone up…)

I did finally settle into a sort of “water, blah” about it. I am still really excited about having a Wild Cherry Pepsi tomorrow, but I do think this has cured me of my lust for juices. I do want to limit my soda consumption going forward since it is loaded with empty calories. I may even give up my beloved Coca-Cola except in limited circumstances (movies, delicious fountain Coke from places I know to have the perfect mixture) since I don’t really crave it anymore. I do also miss strawberry lemonade.

While I’m not sure this little experiment was worth it, I’m not sad about having done it. This was never about quitting side and all other beverages altogether, but rather a way to see the impact it could have.

Stop telling us what to do

You care, I know you do. I appreciate that you care.

However, you need to find better ways to show how much you care. Telling me what to do, what I should eat, how I should move, etc. is not the best way to show me how much you care.

You think you’re helping. You’re not.

I’ve seen more medical professionals than I care to count. I have had to fight with them to even get diagnoses, to get treatment that would make me feel even a little bit better. I have spent countless hours researching my condition online, consulting with Dr. Google. Looking for alternative treatments, new things to try, talking to people who have fought this battle before me.

Chances are good that you aren’t a doctor or even have any medical training. You know someone who knows someone who has the same thing and some random root from Chile helped them. Or maybe they gave up all sugar and only eat broccoli and avocado now.

I’m glad that worked for some random person I’ll probably never meet. I love hearing when people who struggle like I do get better. No one should have to deal with the things I deal with. Chronic pain. Brain fog. Depression. Anxiety.

But, I need you to respect the fact that I’m on the path I’m on. You telling me over and over to stop eating sugar doesn’t add anything useful to my life. Instead, I feel like you think I don’t know how to take care of myself. Like I haven’t talked to the doctors. Haven’t researched. Haven’t tried to figure out what’s best for me. You don’t know what’s best for me. Stop acting like you do.

You also may be ignoring the fact that I could be going through a rough patch. One where I’m struggling to get up everyday, so we should just be glad I’m eating at all. You’re probably not with me 24/7, so there’s no way for you to know what I put into my body when you aren’t around. Don’t assume that what you see is my whole life.

Because the reality is that there are probably very few people, if any, who really get the full picture. Who see me when I struggle to wake up and get out of bed. Who see how I struggle to walk through a grocery store or how sometimes breathing is painful. Who know how many voices in my head tell me I’m a failure. That I should be doing more with my life than I am. Over and over I hear, “You’re not really sick. Get up. Get moving.”

Until you’ve actually trudged a mile in my shoes, or spent a whole day in bed because the pain is pretty much unbearable, please do not bestow your unwanted advice on me. For some of you, it’s a compulsion. You feel like you *have* to share with me because you know it will help. You won’t feel like you’ve done your part until you do.

Just stop. Ask me how I’m feeling. Ask me how you can help. Tell me something funny to get my mind off of whatever I’m going through.

If you can’t stop, you may soon find your way out of my life. I spend enough energy dealing with shit, I don’t need it from anyone else.

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Waterlogged

I read this article based on research by a blogger who only drank water for a month. For some people this isn’t a big deal since that’s almost all they drink anyway. I’m not one of those people. I probably average a soda per day, along with a glass of juice per day.

Y’all know my issues (chronic pain from back issues/tendon transfer, diabetes, thyroiditis, IBS, fibromyalgia, insomnia, anxiety, depression, lupus) which cause pain, brain fog, fatigue. At this point, I’m looking for things that will help alleviate any of the symptoms I feel on any given day. This research seems to suggest that consuming only water may help.

I currently weigh 210 pounds (I gained back 20 of the pounds I lost when I switched to the low FODMAP diet to figure out whether I have IBS or IBD) and my forehead is totally broken out. That could be related to my menstrual cycle or it could be diet-related. I don’t think I ever had a breakout this bad in my teens.

So today I start 30 days of drinking only water. I already hate the idea of this. Like HATE it. I dislike depriving myself of anything because it makes me want it more. However, I hate feeling like shit all the time more, so we’ll give it a go. I’m taking the one-day-at-a-time approach. If I fall off the wagon, I fall off the wagon. And then re-start.

If I notice any tremendous difference in a week, I’ll give an update.