Normalizing the horrid ways I’ve been treated

April 13, 2019

For seven months my therapist has spoken with a woman who fights hard for her health, who does her own research, fights with insurance companies, argues for the tests she needs, pushes her way in to seeing the best doctors. So it’s no surprise that when I expressed my fear that I might one day just give up the fight, my therapist asked a question to which she thought she knew the answer: “But is there really any chance that you will give up?”

She definitely looked surprised when I said yes, but it was the look on her face when I told her why that surprised me.

Here in Massachusetts, there’s a large doctor network (Harvard Vanguard now, previously called Harvard Community Health Plan for you local folks) where the doctors refer patients within the network, read each other’s notes about patients, see each other’s patient test results, etc. These days this isn’t so unusual, but back in the 80s and 90s it was. Going to these doctors seemed like a good thing, because they communicated with each other. I spent my entire childhood and my early adulthood there.

When my therapist asked if I might really give up I said yes, because it’s so exhausting to keep fighting. And who knows if getting better is even an option? Sometimes I really want to just give up, to say that this as good as it’s going to get and I’ll maintain what I have, but there’s no point in trying for more. And then I do it anyway. Even though it’s exhausting and all-consuming and overwhelming. But maybe one day I won’t. After all, I gave up once before.

I’m not talking about taking short breaks, while knowing I will resume the fight again in a few weeks or a few months. I’m talking about actually giving up, choosing to stop trying altogether. After all, it’s what the doctor told me to do.

I had been undiagnosed for around 7 or 8 years. I had seen many doctors and even had exploratory surgery which yielded no answers but did manage to permanently increase the pain. Sadly, one downside of that doctor network is that I only saw the doctors that I was referred to, and I was referred to the ones who could properly diagnose me, like a rheumatologist. That would have been very helpful. Instead I saw surgeons, orthopedists, and other specialists who didn’t have any answers. Of course, I was also sent to a psychologist, but that didn’t help the pain for now-obvious reasons.

I will never forget the day, almost 20 years ago now, when I saw yet another doctor for yet another opinion, endured yet another painful examination, and was told to stop coming in. She didn’t mean I should stop coming to her office, but to the entire network of doctors. She made that very clear. And since the other doctors hadn’t been able to help, had been condescending when I suggested that perhaps my different symptoms were related (it was years later that I found out they were in fact related, and earlier treatment could have helped a lot,) and generally hadn’t tried to help me if there was no immediately obvious problem they could name, I gave up. I was done.

For a couple of years I stopped seeing doctors for anything more than annual checkups and acute situations. I didn’t even consider attempting to get better. I would simply be in horrible pain every minute of every day for the rest of my life.

Obviously that didn’t last forever and one day, practically out of the blue, I decided to take advantage of my ability to see a doctor without a referral for the first time in my life. I found a rheumatologist and was diagnosed within a week of that visit with an autoimmune condition. It was my first correct diagnosis. But before that, I had given up.

You would think my point in telling you this would be to show the value of self-advocacy, doing our own research, etc. That’s not my point today. That has been my point in many other posts and it will be in many more to come, but today my focus is on how I have normalized that horrible incident with the uncompassionate doctor. When I casually mentioned that the doctor had said I should stop coming in, I saw the look of horror on my therapist’s face. She’s not naive. She has worked in the medical system for many years. She knows this kind of things happens, but she hasn’t normalized it like I have.

That’s not to say I think it’s ok. And if someone dared say that to me again, I would react very differently now, that’s for sure. I certainly wouldn’t stand for anyone saying that to someone I care about. But back then, I was scared and shy and tired of trying, so I accepted it. And over the years I have seen and experienced so many forms of terrible treatment by medical professions and by the systems that are meant to support our health that I am no longer stunned. I am sickened and angry, but no surprised.

I don’t like that I have become so jaded, but I guess that is what 27 years of chronic illness does, at least in the U.S. medical and benefits systems. And what I find even sadder is, I know I’m not the only one.

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“Don’t let the hormones make you think that you’re crazy”

April 8, 2019

I’m an over-thinker. I always have been, I just didn’t realize it was possible to be any other way. In more recent years, as I have had a lot more time to think and a lot less ability to do other things, I have found myself thinking things through even more. This can be incredibly useful, and has allowed me to research my health condition, for example. But it can also lead to trouble, like when I worry about what certain things mean.

I read a lot, too. I read books, blogs, news articles, Facebook posts. I read about chronic illness. This reading means that I find useful information, but I also learned about things I would probably be better off not knowing. I often wish I could unlearn things.

One thing I wish I didn’t know what how much sicker and more disabled some people are than me. Obviously I knew this in an abstract sense, but being involved in the chronic illness community makes it a lot more real. I also see the high rates of mental illness among those with physical chronic illnesses. I worry that one day I could develop some of these issues. I could become more disabled, develop new physical chronic illnesses, develop mental illnesses, or all 3. This isn’t something I worry about all day every day, but it comes to mind a fair amount.

Last week I had a horrible bout of anxiety. I was nervous about the upcoming iron infusion, and the closer it got, the worse I felt. By the evening before, I was a complete wreck. I should have used some medical marijuana, but for some reason that didn’t even occur to me until the next day! I did everything else I could think of: I messaged some close friends, told them I was anxious, and asked for distractions. The kid videos, cat video, stories about their lives, etc. were very helpful. I read the questions my therapist had suggested I ask myself to determine if my anxiety is founded. I ate comforting foods while still having to avoid inflammatory foods, thanks to the food reaction a week earlier. The next day I stayed busy as much as possible. I was annoyed but managed not to panic when I got my period, only 3 weeks after the last one. I had a friend come with me to the infusion. But I was still a wreck.

On the way to the infusion, I told my friend who it would work. It’s a very short thing, but they keep patients around for a while afterwards because there’s a not-insignificant chance of a potentially fatal reaction. “No wonder you’re anxious,” she said. As I responded, “Oh, that has nothing to do with it” I realized how strange that was. I wasn’t worried about a horrible reaction. So why was I so anxious? I couldn’t figure it out.

Several days later I went to my therapy appointment and I immediately brought up the extreme anxiety. It was worse than just about any I’d had before – it rivaled how I felt the night before my food surgery several years ago, and that made no sense! We talked it through for a while. Eventually she pointed out that I have been hypothyroid lately, right? Yes. “Hypothyroid can cause anxiety. In fact, any psychiatrist who has a patient with anxiety will test their thyroid function.” (I pointed out this unfortunately isn’t the case and she said, “If they’re any good, they’ll do it.” Boy do I like her!) Then she pointed out I had unexpectedly gotten my period that morning, and I usually get more emotional a day or two beforehand. Of course, I hadn’t connected the two because I hadn’t known my period was coming. And then she said it:

“I know you worry about developing mental health problems, but don’t let the hormones make you think that you’re crazy.”

And I instantly knew she was right. I worry so much about developing anxiety (yeah, I know, totally counterproductive, right?) or depression but so often, the worst of my anxiety, depression, or other similar feelings are related to my hormones. When I was feeling down last fall it turned out to be a problem with my thyroid medication. When I suddenly feel like crying for no reason at all, it’s always my hormones. At that moment, that was exactly what I needed to hear.

So yes, in this case I would have felt anxious anyway, no doubt about that at all. Medical procedures worry me for a lot of legitimate reasons, and the last time I got iron infusions it didn’t go well, but I wouldn’t have typically felt this anxious by any means. On a scale of 1-10 I would have normally been a 5, not the 8+ I had been experiencing.

I immediately felt better. It was the hormones. That’s all. I have no doubt about that now that I have had some time to think about it (and my period has ended.) It was horrible timing, but there you go.

Could I one day develop horrible anxiety or depression or something else that has nothing to do with a hormone imbalance? Absolutely. Anyone could, but also, my paternal grandmother, father, and sister all had/have depression; my mother and several of her first degree relatives have anxiety. But that also doesn’t mean that every instance I experience is the sign of something chronic. It could just mean that my hormones are temporarily messed up.

Let’s face it, odds are good that I will eventually develop a new chronic illness. It could be physical or mental, and either way, I will have to deal with it. I worry about both, because I feel like I can’t handle anything else, yet I have felt that way before and have somehow managed to handle each new thing. For now, though, all I can do is keep trying to deal with my current health problems the best that I can, while attempting to not worry too much about what may or may not come in the future. And reminding myself that when I find myself feeling overly-emotional, it’s probably due to my hormones.


Fallout from the mystery trigger

March 28, 2019

It started with horrible eczema on my hands. All day they were fine, then they were dry, tomato red, painful, cracked, and bleeding. Later there was gas. Then abdominal pains. Then constipation. Finally diarrhea, as my body got rid of the offending element and everything else I had eaten.

Clearly I ate some gluten or corn at some point. But I wasn’t all that sick, all things considered. This didn’t last as long as some other episodes. Plus, I’m super careful. Still, I had stayed over at my parents’ house, and even though I tried to be careful, there were crumbs everywhere, and we all pet the dog before and after meals. And we ate out at a restaurant that has always been ok for me, but maybe they made a mistake? I just don’t know, and not knowing makes it even harder.

The next day I was fatigued, but that makes sense. After all, my body had been through a lot. I had turned off my alarm clock and slept much longer than usual. Still, I was worn down, so I spent the day watching tv. I didn’t eat as much as usual, but I ate. I figured I would be fine by the follow day.

Yet I woke up today still feeling fatigued. It’s close to noon and the fatigue and brain fog are both intense, and much worse than what I typically experience. I am having trouble thinking clearly, and I wonder how much sense this post will make when I read it in a few days. Assuming I’m feeling better in a few days. Because who knows?

Now I am wondering how long this will last. I already canceled my therapy appointment tomorrow, but I have a big family event the following day – should I go? Even if I’m feeling better, would I be up to the hour-long drive in each direction? And to make it even worse, I finally scheduled that iron infusion, and that’s just 5 days away. I want to get it over with, but will my body be strong enough?

I don’t need to decide these things yet, but I will have to soon. If I skip the family event, I need to give another person time to make alternate travel arrangements. If I reschedule the iron infusion, I can’t do that at the last minute, especially since a friend is arranging her schedule so that she can go with me.

I have no idea when I will feel better. It could be later today or in a month. And what’s especially frustrating is that I don’t know what caused this! I wish I knew. Was it corn? Gluten? Something else I can’t have that I’m not even aware of yet? Was it the restaurant or my parents’ house or somehow something else?

I’m frustrated more than words can say, but there’s nothing I can do. Which is why in about 90 seconds I will once again be sitting on the couch, watching hours of tv. Because I just don’t have the energy to do anything else. Not even the many things I wanted to do today. And it’s all because of something I ate, even though I don’t know what.


I don’t know what to hope for

March 21, 2019

I read a lot of stories about patients improving to the point of their symptoms going into remission and even being able to take a jog or get a job. Of course, I also read stories about those who get much worse are are unable to care for themselves. Right now I fall somewhere in the middle, and I very much want the former but worry about the latter.

It’s hard to be involved in the chronic illness community and not hear these stories, I suppose. I read blogs and follow various Facebook groups. I imagine I would see a lot more if I was on Instagram on Twitter, but that’s more than I can manage right now. So often I worry about getting permanently sicker. It’s one of my biggest fears. But every now and then, I wonder, could I get better?

Now I’m not fooling myself. I will never job – my knees are permanently unable to support jogging. I can’t imagine how my symptoms would ever go fully into remission. But what if I could still get significantly better? Is that even possible?

When you sprain an ankle, your expected outcome is to completely heal. When you get a cold, your expected outcome is to completely recover. But when you have chronic illness, there simply is no “expected outcome.” I read stories by thyroid patients whose symptoms went into remission, but they usually caught it early on and immediately treated it properly. I did not. I read stories about folks with adrenal insufficiency who recovered completely, but they usually caught it early on and were able to remove the offending stressor. I did not catch it early on and my stressor is my chronic illnesses, which will never go away. So what is realistic for me?

There are no answers. I know that. But that doesn’t make it easy to wander through this maze of diagnoses, doctor appointments, and tests, constantly striving for better health but not knowing what to aim for. On a scale of 1-10, the year after I started this blog I was probably at a 3. Now I’m probably at a 5 or 6. I know I will never be at a 10, or even a 9. But is an 8 possible? Is a 7 possible? Already I wonder if I have reached my maximum possible health. But at the same time, I keep trying.

I keep trying because I see the possibility. I have given up many times over the years. I stopped trying to get better because I didn’t know what else to try. Now I have a list of things to try. I don’t know if any can help, and some may even hurt, but how can I not at least try? Some are obvious, like my upcoming infusion (yes, I’m doing it) for anemia and low ferritin. Increasing my pregnenolone makes sense, because blood tests show it’s low, and it’s necessary for progesterone and cortisol production. But should I take Cortef to treat my adrenal insufficiency? Or maybe my fatigue isn’t from adrenal problems at this point but from something else? I continue to find and elimination sources of corn in my diet, most recently realizing that my calcium and vitamin C supplements contain corn. I stopped those a couple of weeks ago and already feel much better. Maybe there’s more corn sneaking into my diet? I have no idea how careful I need to be and don’t want to go overboard, but eliminating corn seems to help. I want to try LDN (low dose naltraxone) which some patients report has helped with their autoimmune disease.

There are more specialists I want to see, supplements I want to try, dietary changes I am considering. Each of these takes ages, and can easily be derailed. I was going to try increasing my pregnenolone this week, but then I found out my compound thyroid was made as a slow-release version, which no one told me (and the doctor didn’t order!) and that explains some of my current problems. I am going to start the correct version of the medication in a few days, and by the time I have adjusted to that, it will be time for my iron infusion. I will need to wait a few weeks after that to see how I’m feeling and if I need a second infusion before I consider other changes.

Any time I make a change, I wait for weeks, sometimes months, to make sure I still feel ok. And so often, some other symptom or reaction gets in the way and I need to delay my plans. That means it will probably take me 2+ years to get through my current list of 9 things I want to try.

It would be so much easier to give up. I’m in a pretty good place, and maybe I should just be happy with where I’m at. But then I think about having to miss my very close friend’s surprise party last weekend because I didn’t feel up to going. And I think about the pain several days ago that was so bad, I had trouble functioning. And I think about those days that the fatigue wears me down unexpectedly. And I think about what happens if one day I want to get married, and I can’t even have the kind of wedding I want because I won’t have the energy for it. And I think about how much I want to spend the entire day with my nieces and nephews but I don’t have the energy for it.

And then I decide to try again. Because maybe I won’t get any better than where I’m at right now. Maybe this is as good as it gets. But maybe it isn’t. Maybe I can nudge my way up to a 6.5 on that scale, and wouldn’t that be worth all of the effort?


Between a rock and an iron infusion

March 12, 2019

I feel so stuck, and I can’t get this out of my head.

It’s pretty apt, as you’ll see.

I have been anemic for ages, but mostly it was ignored. Whenever I tried taking iron supplements they made me sick, and eating iron-rich foods didn’t help, so instead I did nothing. After all, most of my iron tests were fine, it was only my ferritin that was low, and that wasn’t a problem, right?

Then back in 2012 I started doing my own research into why I was so sick and I found all sorts of useful answers. I would be so much sicker without that research (shout out to public libraries!) Among other things, I learned that low iron levels would impede my thyroid improvement via medication, so I had to address it. My regular doctors weren’t helpful, but I managed to see a hematologist in 2013. He prescribed iron infusions and those more than did the trick – my ferritin levels went through the roof.

Over the past six years my ferritin levels have slowly come back down to within the normal range, then lower within that range, until finally 10 months ago I became anemic again. Oy.

I put off dealing with it while I managed some other health issues, but finally I took iron supplements that my naturopath recommended as being especially easy on the stomach. We started out with 1/2 the normal dose. At first I felt ok, so I figured there was no problem. But after weeks of feeling sicker than usual, I finally realized the problem had to be those iron supplements. Within a few days of stopping them I felt a lot better, but I had lingering symptoms for another month and a half.

After that experience, I didn’t want to try iron supplements again. My naturopath suggested taking an even smaller dose, but I had been so sick for so long that I just couldn’t bring myself to do it. Some folks recommended cooking with cast iron pans, but they’re too heavy for me to lift. A friend found something called Lucky Iron Fish and I actually bought one. It’s like cast iron pans, but you boil it in water and then drink the water to get the iron off of it. I chickened out and it’s been sitting in a drawer for months. I don’t want to risk getting so sick again.

But I have to do something. That’s the problem. I made an appointment months ago with a new hematologist, and it’s finally coming up next week. I made the appointment with the idea that I would get iron infusions again but now that the time is here, I’m hesitant. What if the infusions make me really sick? Back in 2013 I don’t know how they made me feel. I was doing so poorly that it was impossible to tell. I had only started seeing my naturopath two months before, had just being adrenal supplements, and hadn’t even started natural dessicated thyroid as my new medication yet.

Now I am in a better place. Overall I feel hugely better compared to where I was in 2013. On the other hand, I’m still struggling every day, and the tiniest thing can make me feel like crap for weeks or months; like those iron supplements I took last fall. So I want to risk a major setback? And unlike supplements, I can’t change my mind and stop. Once I have an infusion, that stuff is in my body.

And what’s in the infusion besides iron? Chemicals? Additives? Other things that could make me ill? I already have a long list of things my body reacts badly to: everything from the dye used in brain MRIs to lavender, corn, various medications, gluten, the pesticides on apples, broccoli, and so much more. And those are only some of the things I’m aware of. I have been thinking lately that there are probably more things I am reacting to. What if some of those things are in the infusion?

So I’m rightly scared and I don’t know what to do. I’m hoping the hematologist has some brilliant idea that I’m currently unaware of, but otherwise, I’ll have to make a tough decision soon. Should I risk the infusion? Try the iron fish? Remain anemic?

For anyone who has dealt with iron infusions, I would love to know what you think! Making medical decisions is often hard, so this is nothing new, but that doesn’t make me feel any better about it. Because no matter which option I choose, I know it could potentially be very bad.


I just want to be me

February 24, 2019

There are so many big, obvious ways that chronic illness can stop us from doing the things that make us feel like ourselves. Like not being able to work or having to give up a favorite form of exercise. But then there are the smaller things that most people don’t think about. And lately those have been bugging the hell out of me.

Don’t get me wrong. Not being able to work really sucks. And I should have a dog. I adore dogs. I dog sit a lot. And yet, I can’t manage having a dog every day, so no dog for me. And yeah, that sucks. Then there are things like no longer being able to dance. I miss that. And I wonder if I get married one day, will I not even be able to dance at my own wedding? That idea is so sad that I don’t like to think about it, and get it comes to mind anyway. Then again, will I even be able to have a big wedding? My guess is that my adrenals wouldn’t be able to manage that. Those are big things. Then there are smaller things.

Like I was telling a friend about how I hadn’t kissed anyone in 6 months. He suggested that if I’m on a date with someone I like then I should just go for it. But I pointed out the big problem: gluten. I can’t kiss someone who has eaten or drunk gluten. Or who is wearing lipstick or chapstick that might have gluten in it. So I have to tell them, which can be awkward on a first or second date. Like, there was the woman I mentioned it to on the first date. She was all done, with nice clothes, makeup, lipstick. On our second date she was dressed up with nice clothes and makeup, but no lipstick. And when we ate dinner, she ordered hers gluten-free also. Ah hah! Clues! And yes, we kissed that night. More recently I went out with someone and managed to bring it up. But then he ate gluten with dinner anyway. So obviously, no kissing there. I used to make the first move all the time. In fact, the first few people I kissed I had made the first move. I can’t do that anymore, not unless I know they are gluten-free. And that totally sucks. I can’t simply be me.

And there’s the money thing. I want to try and earn some money. Not only does my health not allow me to do much, but even when I can work a little bit, there’s the issue that my government benefits prevent me from earning a little money. I need to either earn enough to get off of benefits, or earn nothing at all. Because if I earn $1000, I will keep about $250 and the rest will get eaten up by a reduction in benefits. And that sucks.

I want to play with the kids in my life. I am auntie to 11 wonderful kids, and I’m too tired to do much with them. I have managed to host a couple of sleepovers, but even those were exhausting. I want to babysit more, chase after them, take them for outings. And it hurts that I can’t do that.

There’s a list of projects sitting next to me. Things I really want to do, if only I could manage to do them. If only I had more good hours in the day. These are the things that make me feel like me. I do enough to hold onto my sense of self, but there’s so much more I want to do. There’s so much my health won’t allow me to do.

I think about the kinds of things I have done over the years, back when I was healthier. I think about the kinds of things I would like to do now. I want to go out for drinks with friends in the evening, go out dancing, ride a bicycle. But mostly I want to act naturally, follow my instincts, and just be myself. And I find it incredibly frustrating that I can’t do that basic thing: just be me.


Getting taller thanks to physical therapy

January 27, 2019

There are so many topics I want to write about but they’re negative (I mean, the name of the site is Chronic Rants, after all), and I really need to focus on something positive today. So let’s talk about a surprising benefit of my physical therapy.

When I was a kid, my hands and feet were bigger than my mom’s, so we figured I’d be taller than her 5’2″. When I was diagnosed with scoliosis, x-rays were done to see how much more I would grow. The doctors predicted I would be around 5’3″. But as I grew, my scoliosis got worse and compressed my torso. In the end, I was only 5’1″.

2019-01-27 12.35.47

Now, being short isn’t the end of the world, but let’s face it, it can be super inconvenient. In fact, a lot of my neck pain comes from being short. Reaching up to get things off of high shelves, reaching forward for the steering wheel, sitting awkwardly in chairs because I can’t lean back and have my feet on the floor at the same time, and so much more can cause problems. I have even developed arthritis affecting the big toes in each foot as well as the start of bone spurs in those toes. My doctor told me to stop standing on my toes. Easier said than done! I stand on my toes to reach shelves in my apartment, to get things off of shelves in stores, and even to sit on a toilet (ok, I’m not standing on my toes, but they’re still at that angle, because I’m too short for my feet to be flat on the floor.)

And never mind my inability to find anyone in a crowd or see over the person who sits in front of me in a theater.

I go to a lot of doctor appointments (no surprise there!) and they often weigh me and measure my height. I range between 5’1″ in the morning and 5′ 0.5″ later in the day. I can be a little taller as I go about my day thanks to an extra inch or so from my sneakers or winter boots. Unfortunately, due to toes issues I can’t wear heels any more. It’s not like I wore them every day, and I didn’t wear super high heels, but once upon a time I would occasionally wear heels to work and enjoy being 5’3″. I would often wear heel to parties so that I wouldn’t have to crane my neck as much when I stood around talking to people. Taller folks laugh at that, but it really helps. But now, no more heels for me. For the rest of my life.

So I’m short. I don’t love it, but I’ve accepted it. It’s not like I have a choice. I’m not looking forward to shrinking as I get older, and I hope to minimize that with my physical therapy, but even so, with my scoliosis, I know it will happen.

So imagine my surprise when I went to a doctor appointment right after physical therapy and they measured me at 5′ 1.5″! I was thrilled. I know PT helps with my pain and discomfort. That’s been obvious from the start. And my current physical therapist is the best I’ve had. I travel way out of my way to see her. In the past, PT was 6-12 weeks, then sending me home to continue on my own. When my problems recurred, I was blamed for not consistently doing my exercises. But let’s be real here: sometimes they won’t happen. If I have a week where I feel like shit, where I’m too fatigued or in tons of pain or have a super heavy period, then I won’t do those exercises. And then when I resume them after a week or two, damage has already been done and I won’t be able to get myself back to where I was at before the short break. That’s not my fault, it’s just how my body is.

My current PT is different. She sees me every 1-3 weeks all year long. We space things out in a way to get insurance coverage throughout the year, meaning we make a lot of adjustments in the autumn based on how many visits I have left. This means I maintain a certain baseline that works well. If I come in with a complaint, she focuses on that, like this week when I had a lot of neck pain. If I come in without any particular pain, she focuses on general posture, loosening muscles, and straightening my spine.

And it must be working. For the first time in many years I have a lot less pain on a consistent basis. When I first started seeing her, I would come in with a lot of pain to every session. If I didn’t see her for 3 weeks I was in agony. Now, 3 weeks is usually doable. I recently had to stop seeing her for 6 weeks due to some family issues she was dealing with. By the end I had some pain, but it wasn’t too bad. I was amazed!

Obviously PT was working well for me, but getting that height measurement just put a number on it. She was pleased when I told her. But then something more surprising happened. A few weeks later I saw a different doctor and they measured me. This time I wasn’t coming directly from physical therapy. In fact, my last PT appointment had been 3 days prior. But when they measured me, I was 5′ 1.5″ again! I was floored.

I don’t know if this will last. I don’t know if it will even happen again. All I know is that for once, I have concrete, numerical proof that something I am doing is actually working. I’ll take it!

Now excuse me, because it’s time for me to do my physical therapy exercises.

 


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