The Yoga Verdict

About a month ago, in “The Plan, update #4”, I made a big deal about wanting to change my workout routine and giving yoga a try. I’m rather ashamed to admit it, but after publishing that post, I kind of ignored it. Ok, I seriously ignored it. The DVD arrived, I popped it in the player and bored myself to tears in about 5 minutes. So, I turned it off and didn’t give it a second glance until today. I could take the easy way out, say that the DVD was just too boring for me to suffer through and that it was a waste of money, but that’s not true. Yes, I was bored by the slow pace of the exercises, but that’s because at the time, I was looking for something more vigorous. I moved onto Jillian Michaels’ Thirty Day Shred and found it infinitely more satisfying.

The problem is, being in the middle of a nasty fibro flare makes Jillian considerably more difficult. I’m still trying to stick to my routine, but I’m finding it harder and harder to recover. When I woke up this morning, I was so stiff I could barely move. I started having flashbacks to The Wizard of Oz, when Dorothy and the scarecrow meet the tin man… If I had thought that spraying myself with WD-40 would have helped, I’d have done it in a heartbeat. Which brings me back to the previously discarded yoga DVD.

One of the most important things that I have learned since starting my get healthy plan is that once I get moving, I feel better. My mood improves and the pain doesn’t seem as a bad. The hard part, of course, is getting myself to move in the first place. Let’s be serious here, when we’re in pain, the last thing we want to do is move. Unless of course that movement results in a comfy pillow and some chocolate. Thankfully, I have a new carrot dangling in front of my face: a little bit of movement = guaranteed relief. With that in mind, I finished my morning cup of tea (green tea!) and faced Ms. Barbara Benagh once again.

I started out with her 20 minute Sun Salutations routine, and let me say right now, this time it was not boring. The slow, gentle pace was exactly what my muscles needed. By the end of the routine, I was feeling energized and <gasp!> limber. It actually took effort not to start squealing like a four-year old who’s just been let loose in Candyland. No, I’m not exaggerating. 🙂 As a matter of fact, I felt so awesome that I decided to try a second twenty minute routine, Strength & Balance. Both routines challenged my strength, flexibility and endurance, but gently. I didn’t feel rushed and throughout the routines, the instructor offers helpful (non patronizing!) advice on how to modify the poses if you need to.

At this point, I feel positively amazing. Part of that is because I’m just proud of myself for doing it and even more proud that I was able to follow both routines the whole way through, something I wouldn’t have been able to do a few months ago. The cherry on top is that I physically feel better; my muscles are limber again and while they are still a bit sore, it’s at a much more manageable level.

Of course, as with any new exercise, the real test is still to come: how will I feel tomorrow and will I be able to get the same results consistently? I certainly hope so, but I’ll keep updating as I go along.

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THE Plan and the flare up

I have good news and bad news. Since asking which one you’d like to read first is pointless, I’ll start with the bad news that way we can end on a high note!

Ok, the bad:

As predicted in my last post, I am in the middle of a fibro flare. I was really hoping that it was just a fluke or a rough patch, but since it’s gone well past the week mark and shows no sign of stopping, I’m officially calling it a flare up. My trigger points are seriously unhappy lately, to the point that some of them are actually visible to the untrained eye. They look (and feel) like marbles under my skin. Thankfully, they tend to come and go, so they’re not constantly exposed, but they are unpredictable.

For those of you who are unfamiliar with trigger points, here’s an overview.

Trigger points (some times called tender points) are one of the main ways doctors diagnose fibromyalgia; they stand you up and literally poke specific spots on your body to see if they cause an unusual amount of pain. There are 18 points doctors look for and if 11 or more them cause pain, congratulations, you have fibro. Here’s a picture to show the official 18 points they check:

The number of spots that actually hurt can vary widely from person to person and time to time. For me personally, I generally have 16 out the 18 active at any given time. Usually, these trigger points are only painful when you touch them, if you’re really lucky, only when you apply a bit of pressure.

During a flare up, all bets are off. Like I said earlier, my trigger points become inflamed and actually stick up out of my skin, when they’re particularly pissed off, even wearing a t-shirt can be extremely painful. It feels as though I’m being stabbed in the back with a white-hot poker, complete with that radiating pain you get from a nasty burn.

The only thing that I’ve found thus far that helps with trigger point pain like this is having trigger point injections. Basically, a doctor jabs a needle into the offending spot injecting a tiny amount of anesthetic. Even with the anesthetic, it’s a breathtakingly painful experience, so it’s only something I do as a last resort. Let’s just say that right now, I’m seriously considering it. 😦

Along with my trigger points being angry, my sleep is all kinds of messed up. The issue is that I’m having trouble falling asleep and when I do finally pass out, I tend to sleep so heavily that I don’t move and wake up feeling stiff and disoriented. It’s also taking a lot longer to shake the morning fog. Usually, I wake up, take my morning meds and I’m good to go in about 20-30 minutes; lately, however, it’s taking 45 minutes to an hour, even after taking my meds with a full glass of cool water. For the record, I’m not complaining. I’ve suffered through days at a time with no sleep whatsoever, so I’ll happily take the sleep I can get even if it’s not great.

On the plus side, I’m still breathing! 🙂 That is always a good thing, because it means there’s still hope for things to get better. (I know, sometimes I’m so optimistic I make my own teeth hurt.)

I did take a few days off from exercising, but since it made absolutely no difference in my pain levels, I started up again. Before the flare up, I had started doing Jillian Michael’s 30 Day Shred every other day. I’ve thus far done 10 days of level one, and I am amazed at the results. Not because I’ve lost any weight, but because of how quickly my endurance has been improving. Last week, I astounded myself by jogging 2/3 of a mile. Yesterday, I jogged a full mile, 1.1 miles, to be exact. Again, I didn’t jog all of it at once, I broke it up into segments of about 1/4 mile at a time. As if that wasn’t amazing enough, all the jogging brought my 5k time down by about 5 minutes! Back in June, I was thrilled because I walked 5k in 50 minutes, now, just over a month later, I can do it in 45:05. I’ve met my interim goal, now on to the next phase: 5k in 40 minutes.

Do I feel terrible? Yes. Does that mean I give up on my goals? No. Absolutely not.

 

Fibro flare up

anyone-can-give-up-inspirational-quote

The pain started this past Tuesday and has been ramping up all week. It feels as though my muscles are wrapped around brittle glass instead of the bones that should be there. It’s a sharp, grinding, burning pain, that seems to just appear out of nowhere. It started in my left foot, which is an unusual place for my fibro to hit. Normally, the pain is in my hands/arms and back, sometimes it hits my legs, but never my feet. I initially thought maybe I’d injured my foot exercising, but by Thursday, I was feeling the exact same pain in my hands as well.

I slept miserably last night. As soon as I laid down, the pain shrieked up my back and then down my arms; it’s very hard to sleep when your body is shrieking at you. Once I did fall asleep, the nightmares started, so the little bit of sleep I got was nowhere near restful. <SIGH>. Needless to say, I did not want to get out of bed this morning. I’m proud to announce that I managed it anyway.

It’s really hard to stay positive when you’re wrapped in layers of pain, but I’m trying. To be honest, as wonderful as it was to have a break from the misery, it just makes it seem so much worse now. It’s like being dropped into a tub of ice water after laying out in the hot sun all day; it’s a shock to the system.

Don’t worry, I’m not giving up. As soon as I get this posted, I’m going outside for my walk. I may have to shorten it a bit for today, but I refuse to sit on my butt until this flare up goes away. It will go away, I just don’t know how long it will take. On the upside, the flare up will help me add some things to “How to Fight Fibro”. See? Positive thoughts, hard at work.

Ok, slight change of topic here, but I want to make a point about positive thinking. What people don’t seem to understand is that thinking positively doesn’t make the pain go away. It just makes the pain more bearable. For me, the hardest part about fibro pain is that utterly pointless. Pain is supposed to be an indicator that something is wrong, it’s supposed to be fixable! By giving my pain a reason to exist, (for example: if I’m hurting, I’ll be more likely to write about things that help make it better), I’m making it easier for me to deal with, which helps to keep me from falling even further into mental misery.

Now, it’s back to the fight, wish me luck!

Getting Past the Grief

As promised, I started seeing a therapist last week. Not my most favorite thing in the world, but it wasn’t as bad as I was expecting it to be. The first visit was mostly just an assessment, to see if she thought she could help and to make sure I could stomach being there. I told her all the basics, family background, medical history, I’m sure you get the idea. At the end of the visit, she told me that yes, she feels she can help me (yay!), and she also took some time to explain her theory on fibromyalgia patients.

In her experience, patients who suffer from fibro (or other chronic illnesses), are in a cycle of continuous grief. In a nutshell, we’re all grieving the things that have been taken from us by our illness; every day is a reminder of what we can no longer do, and the grief continues on. This is where she got my attention. I’d never thought of it that way before. I always just assumed I was in some kind of depression, brought on by the fibro itself, but her idea makes sense.

In order to better acquaint myself with this new perspective, I thought I’d try an experiment and take some time to think about all of the things I’m grieving. I know, it sounds like I’m doing the exact opposite of what I described in my plan, but hear me out. My thought is this: if I recognize all of the things that are causing me to be in this constant state of mourning, maybe I can finally let some of them go, rather than continue mourning their loss. Here goes nothing…

One of the things that weighs the heaviest on my mind is the loss of my dreams. When I was 11, I went to a concert given by the local high school’s Chamber Orchestra. The concert was a way of getting kids my age excited about learning to play an instrument; for me at least, it worked like a charm. I was hooked the minute they started playing, and when the violin solo started, I knew exactly what I wanted to play. I remember telling my mom right then and there that I was going to sit in that first chair one day.

Soon after, we were up at the music store picking up my rental instrument. Once school started and my lessons got underway, I drove my babysitter nuts with my incessant and admittedly, dreadful practicing. I worked my little fingers to the bone, and managed to land my first “major” solo the following school year. To say I was thrilled would be an understatement. By the time I reached the seventh grade, I was hounding my parents for my own instrument; that old rental just wasn’t good enough for me anymore. Eventually, they gave in, and we took that sad old violin back to the music store and traded it in for a new, shiny, honey colored “beauty”.

That same year, my school instructor suggested that I take private lessons to help me over the summer, which I eagerly took up. My first private teacher was a violinist in the Virginia Symphony, from her I discovered my next goal: to be a symphony violinist. Of course, I didn’t want to be just any violinist in the symphony, I wanted the chair of the Concert Master. I’m sure I drove my parents crazy with my constant prattling about all the solos I would get and how much money I was going to make.

I got older, and while my finger tips became callused, my beautiful, honey colored companion (who, for some reason became known as “Bob”), picked up some hard-earned nicks and scratches. In high school, I started taking lessons year round; I needed to get ready for my spot in the Chamber Orchestra! I “suffered” through the ninth grade in the “lowly” Concert Orchestra, although I was very proud to be one of two competitors for that coveted first chair. Finally, at the end of my freshman year, I was allowed to audition for the Chamber Orchestra. Not only did I make it in, I made it in as a violinist in the first section; not as the first chair, mind you, but at least I was in the right section.

My lessons ramped up and I went to as many competitions and extracurricular concerts as I could manage. All City, All State, Regionals, Senior Regionals, Festival, you name it and chances are I was in it at least once over the remainder of my high school career. Not to toot my own horn too much here, but I was pretty darn good. I’d be lying if I said I was “the best”, but I was among the top 5 violinists in all of the competitions I attended.

Finally, my senior year arrived. My chance to land that first chair spot that I had wanted since I was in the fifth grade. Disaster. Right at the start of the school year, I over did it and developed tendonitis in my right wrist. I couldn’t play. My orchestra director was less than sympathetic. Rather than saying “Rest up and get better”, he booted me to the second violin section, which to me at the time was just about the worst “punishment” he could have given me.

Not long after that, I was in a car accident that changed the course of my life. In a fit of stupidity induced by teenage invincibility syndrome, I whipped my little Honda Accord around a corner entirely too fast and managed to roll the poor thing end over end no less than three times. In all honesty, I should not be here writing this blog.  That accident should have killed both myself and my little brother. The responding police officer was so stunned that we both made it out alive and with only minor injuries that he told my mom he “couldn’t bring himself” to charge me with anything.

The injuries I sustained in the accident healed, and we all got on with our lives. The wrist problem, however, persisted. I didn’t injure it in the car accident, and I (unhappily) followed the doctor’s advice to let it rest for a few weeks. The pain wouldn’t go away. Convinced that the doctors I had been seeing were all idiots, my mom found a hand specialist for me. That poor doctor ran himself ragged trying to figure out what the problem was. I underwent every single test he could think of: MRIs, EMGs, X-rays, physical therapy, cortisone treatments… Nothing turned up and nothing helped the pain. As a last-ditch resort, I had arthroscopic surgery done on my wrist; it turned up nothing but a teeny tiny cartilage tear. The doctor cleaned up the tear and after a few follow-up visits, sent me on my way, convinced he’d fixed it.

Needless to say, I didn’t play my violin a whole lot my senior year. I managed to make it to all of the school concerts and one or two extras, but it was difficult to play with my body screaming at me that something was horribly wrong.
A few months after the surgery, I started having the same pain in other parts of my body. Long story short, it took another year or so to get diagnosed with fibromyalgia.

In the mean time, I all but gave up playing. I didn’t bother to audition for any of the ensembles or orchestras during college, and I resigned myself to being a has been or rather, a “could have been”. I still have poor old Bob, but he’s gotten rather dusty in his lonely, padded prison. Every now and then, I pull him out and play through a few old workbooks, but my hands have forgotten how to play and it usually just depresses me.

That, my friends, is just one of the things that was stolen from me by this invisible assailant, and I mourn its loss on a near daily basis. Looking at it now, I guess this is actually the story of two losses. Not only do I grieve for the loss of my ability to play the violin, but I’m also mourning the loss of that little girl who truly believed she was going to be “the best violinist, ever”.

This was certainly not an easy story for me to tell, as evidenced by the pile of tissues sitting next to me, but I honestly do feel a bit lighter now that it’s out. Only time will tell if I’ve actually managed to lighten my burden or not, but stay tuned, because I’m not done quite yet. There are more stories to share, as well as the hope of new dreams to replace the ones that have been lost.

Things never to say to someone with Fibromyalgia

Seriously, these are things you should never say to someone who suffers from fibro!

  • “Oh, everybody gets tired! I’m tired and achy too!”
  •  “You’re so lucky, I wish I could stay in bed all day!”
  • “There’s nothing wrong with you, it’s all in your head!”
  • “But you don’t look sick”
  • “You just need to get out of the bed in the morning, and then you’ll forget you have it!”
  • “All you need to do is get out and do some exercise!”

Thanks to Fibrofaery for posting this list, and make sure to go check out Fibrofaery’s Blog!

I have also been on the receiving end of many such well meaning, but ignorant comments. For the most part, I believe that many people are, (or try to be), sympathetic to this condition, but struggle with how to express it. I admit, we fibro sufferers tend to be a sensitive lot. For most of us, it took years of suffering through specialist after specialist telling us that they couldn’t find anything wrong before finally being diagnosed with Fibromyalgia. We’ve had to deal with countless doctors and nurses implying and sometimes, even making accusations that we’re merely drug seekers. If I get a cold or a sinus infection, and I have to go to an urgent care center, 9 times out of 10, the very first thing the doctor says to me is: “We do not prescribe pain medications to patients with Fibromyalgia”. Add these things to the depression, anxiety and other mental issues that come with fibro and you get a group of people who can be very difficult to talk to. It’s hard not take offense when people say such ridiculous things to you ALL the time.
Here are a few of my least favorite things that I’ve heard over the years:

  • “That’s a shame, you’re so young!”
    Fibromyalgia is an unpleasant disease to have no matter what your age. Yes, I was diagnosed at the age of 18, and while I understand what a horrible fate this must seem to people, please try to understand that I am still trying to live my life. I have to do things a bit differently than other people, but my life isn’t over, so please, keep your thoughts on my age to yourself.
  • “If there’s nothing physically wrong, can’t you just ignore the pain?”
    I am fully aware that there is nothing physically wrong with me, but my brain doesn’t. According to my brain and my nervous system, there is some kind of catastrophic damage to whichever body part is hurting at any given time. You can try to override these signals, but in the end, there is no way to reason with your body.
  • “You look great, you must be feeling better!”
    Want to know a secret? Sometimes, if I’m feeling particularly bad, I put extra effort into my appearance to hide the fact that I feel terrible. Now, that being said, please DO NOT turn it around and say “You look great, are you in pain?”. How about you just leave it at “You look great”. That’s all I really want to hear.
  • “Let’s get you out of the house, that’ll perk you right up!”
    Sometimes a change of scenery can help, but most of the time, all it does is give me a new setting to hurt in. I’m not trying to be stubborn or anything, but sometimes, I just need to find a comfy spot to curl up in and wait for the misery to pass. Prodding at me to “go out and do something” is only going to make me grumpy, which in turn makes the pain worse. If I feel that getting out of the house will help, I’ll suggest it myself.

 
Hopefully, this list will at least make people stop and think about what they’re saying, but if not, it at least gives me, (and my fellow fibro sufferers), somewhere to vent :).  If anyone out there has any other things they ‘d like to add to this list, please leave a comment!

Unlocked

Be warned, I’m about to do something that I’ve never done before, and it may come across as a bit awkward. I hope you can bear with me on this one.

This post is dedicated to all of the family and friends that I have locked out of my life over the years. I wasted a lot of energy trying to keep people away from me because I didn’t want to admit I was “disabled”. I was humiliated by the fact that I couldn’t always do the things that others take for granted. I have had days where the pain was so bad that I physically couldn’t get out of bed, days when walking the dog was a daunting task, and days when I couldn’t think clearly enough to load the dishwasher. I wanted to pretend that everything was fine, that I was perfectly normal, that I stopped working by choice, rather than inability. In order to keep up those appearances, I distanced myself from nearly everyone. I am able to admit this now not because my abilities have changed, but because I am starting to accept that for me, these issues are a fact of life.

I have pushed some people so far away from myself that “no more hiding” isn’t enough. In order begin making amends, I am not only inviting you, I would like to welcome you back into my life. I want to introduce you to the “real” me, not just the shadow person I allowed you to see. In my isolation, I found creativity and a strength that I didn’t even know I had; I want to share these things with all of you.

I understand that for some of you, it’s too late. I pushed too hard for too long and that you have given up on me entirely. For those that remain, I hope you can forgive me for allowing myself to become such an isolated hermit. I know this is not going to be an easy road to travel, but I do not ever want to that person again. Starting now, I am opening the doors and throwing away the key.

THE Plan

“You can’t change anything about the disease, so I don’t understand how you plan to change how the fibro makes you feel.”

I swear, if I hear that statement or any similar sentiment one more time, I’m going to unleash the full fury of my red-headed temper.

No. I cannot change the fibromyalgia. I can however, change MY reaction to it. Think of it this way: you’re wearing brand new shoes and you step in a lovely pile of doggy doo. How do you react? You have a choice: you can rant and rave, you can cry or you can laugh. Whether you realize it or not, you choose how you react. It just happens so quickly that most of us don’t even recognize that it was a choice.

I am choosing to laugh.

When the pain starts, rather than get depressed and angry (aka turn into a gumpy porcupine), I am choosing to think happy thoughts and redirect those unpleasant emotions. Yes, there will be days when I’m in so much pain I literally can’t get out of bed. I can’t change that, but I don’t have to lay there and feel sorry for myself either. I can call a friend, I can watch The Lion King (it’s my default “feel better” movie, don’t laugh!), I can even lay there and sing random songs at the top of my lungs if that’s what it takes to perk me up. Even better, maybe I can pull up my laptop and share my feelings here.

I realize that this is a slightly strange sounding plan, but for right now, it’s THE plan. I’ve tried more medications than I care to think about, they either don’t work for me or make me so addle brained that I can’t even manage to feed myself without destroying something (true story!).  At this point, my pain management doctors literally can’t even come up with any new drugs for me to try- I’ve gone through all of them. I’ve done physical therapy, all that did was irritate me and make me even more depressed. I’ve also tried going to a chiropractor, various herbal supplements, stress management therapy, relaxation training… You name it, and over the last 12 years, I’ve tried it, (with the exception of acupuncture- the thought of it alone is enough to make me queasy).

I won’t deny that I’ve spent the last few years allowing myself to be a miserable wretch- that much is undeniable. The thing is, at the time, I didn’t understand that I was choosing to be that way. It’s taken a lot of heart ache and emotional trauma to pry my eyes open to that fact. It took me hitting rock bottom to see that I was responsible for my own suffering- it’s not an easy thing to realize. It’s so much easier to blame outside forces. That little shift in perception has made all the difference for me. I can see, now, with startling clarity how my every action fed into the negativity surrounding me.

Feel free to ask questions, I don’t mind trying to explain, just please keep the disbelief and negativity to yourself 🙂

As of this moment, my new plan is being severely tested- I’ve been in non-stop, 8/9 out of 10 level pain for about 5 days now. To be quite honest, the pain is starting to wear me down. I haven’t sprouted quills yet, but my temper is bubbling very close to the surface. It’s getting harder and harder to not simply break down and cry. I had hoped that when I had a flare up like this I might be able to go for a walk or do some other kind of exercise, but since the pain is centered in my knee and it doesn’t want to support any weight, the best I can currently manage is a Quasimodo like hobble. I’ll come up with something though, I’m not ready to give up yet! I plan to get back on track with my daily walks tomorrow; even if I can only manage a few minutes, it’s better than being cooped up in the house.

No more hiding

My name is Christina and I have fibromyalgia.

Up until very recently, that is how I identified myself; in my own head anyway, I didn’t actually go around introducing myself to people like that. My point is that after I was diagnosed with Fibromyalgia in 2001, I slowly but surely stopped thinking of myself as anything other than a sick person. My disease became what defined me as a person and it took control of my life. I got caught in a seemingly endless cycle of pain, insomnia, confusion and depression, and I couldn’t see any way out of it. My family did their best to be supportive, but I got so sick of being asked: “How are you feeling?” and “Are you in pain?”, that eventually I started to withdraw from everyone around me.

Fibromyalgia is a particularly insidious condition: it leaves you inexplicably exhausted and often in so much pain that it’s difficult to think clearly, yet, there is nothing physically wrong with you. You go from specialist to specialist explaining how much pain you’re in and suffering through test after test only to be told that they can’t find anything. Eventually, the doctors begin to suggest that maybe it’s all in your head and you start to believe it. Even after I was finally given the diagnosis of Fibromyalgia, the lack of any tangible evidence of the illness continued to plague me. I was angry at my body for betraying me, for making me feel excruciating pain for no apparent reason. I was humiliated whenever someone would ask me why I was limping or holding my arm strangely and the only answer I could give was that it was because of this invisible disease.

I did what I could to hide my pain, unfortunately, the only way I could really hide it was by keeping people away from me. Before I even knew what happened, I had turned into a grouchy, miserable, hermit. I created my very own “pit of despair” (if you haven’t ever seen The Princess Bride, I highly recommend it!), and there I sat, huddling in my own misery. In 2008, I was forced to stop working altogether because I just couldn’t handle the stress. I applied for disability and spent years fighting for it before it was finally awarded to me in 2012.

Meanwhile, my life fell apart, my relationships disintegrated and suddenly, I was alone. I am somewhat ashamed to admit that even after all of this, it took me several more months to realize that I was the cause of all my problems, not the Fibromyalgia. My epiphany came one night when I was sitting in the empty house wallowing in self-pity; I had been half heartedly contemplating suicide when I had a sudden vision of myself lying on the bathroom floor, covered in blood. It was in that moment that I realized I needed help. That one terrifying vision kick started my survival instincts and provided me with enough adrenaline fueled clarity to allow me to see the truth: the only thing keeping me from being happy was me.

I made the decision right there and then to get help, to finally go and speak to a therapist about how to deal with my illness. That first decision to seek help kept me going for the next few days until my appointment with my pain management specialist where I told my doctor the truth: I was depressed and in desperate need of someone to talk to. I had known that I was depressed for a long time, but like my pain, I was trying to hide it; when I finally admitted it out loud, I felt as if a long-lost part of myself fell back into place. I found the strength to step back and look at the mess I had made of my life and then I found the resolve to change it.

Which brings me (finally!), to the reason I’m writing this blog in the first place. I know that I am not the only person out there who suffers from this despicable disease, and I’m willing to bet that I’m not the only one to ever get lost in it. I want to share my story not just because I don’t want to be alone with it anymore, but also because I hope that maybe it can help someone else. I’m not a therapist or an expert of any kind, I’m just a woman who has decided that enough is enough. I refuse to let Fibromyalgia rule my life anymore. I can’t change the disease, I can’t make it go away, but I have come to realize that I can change the way I react to it. So, I’m going to start by putting my story out there, my first change is to stop hiding.

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