Archive for the ‘diverticulitis’ Category


I have good news! Are you interested?

I went to my pain management and spine specialist last Wednesday after work. During the appointment we went over the X-Ray results for my hips and lumbar spine due to the exacerbated pain I’ve had since the fall my beastly dog caused on a walk. There was a concern that my hip fractured or broke.

I’ve mentioned before that my lumbar spine already has bulging discs. The X-ray was for just the lumbar and hips, and since my MRI during the summer, that’s deteriorated, likely due to the fall.

Neither of my hips, which have arthritis, are broken or fractured. That’s the excellent news. The arthritis, however, has also deteriorated and has done so more significantly in my left hip. That’s likely due to the fall.

I’m relieved that there aren’t any fractures. That means that we can take “putting a pin in it”off the table. That’s a huge relief. I guess now I’m wondering what my treatment options are, because I met with the APRN instead of the doctor. When I have pain that, in the moment, is at least a 10 what do I do? I can’t support my body when I’m standing up because the pain is so severe. I feel as if my skeleton is being ripped apart and shattered with a hammer. It’s scary, and it takes my breath away.

Since I’m 42 and never had a bone density test, I’ve requested one to be ordered. I know that it’s been an issue in my family, and with the arthritis, maybe it can help with therapy. I’m already doing aqua-therapy but anything at all that might help relieve this pain and I’m in. The APRN didn’t indicate that the degeneration is severe enough for surgery to repair the arthritis, so I’m guessing that’s not an option right now. And honestly I think that has to be a last resort.

It’s funny, though… my PT for aquatherapy seems to think that surgery with additional PT is preferable to additional medications. She has Fibromyalgia, too, so I’m assuming that she’s aware that every time someone like us has a surgery it further suppresses our immune system because the body has to fight so much harder than is typical to heal, and to fight off even simple infections and illnesses. We also have to cope with having all of the medications administered during a surgery coursing through us for months which affects the medications we’re already on. Anesthetics stay in the body for up to two years, especially when it’s administered in large doses.

I would rather exhaust all other options before considering surgery. Just like before I agreed to try pain medications, I exhausted every other possibility first. And sure… I kicked myself and wondered why I didn’t go to the pain management specialist years sooner when my PCP first suggested it, but this isn’t the same thing. I have a hard enough time healing from paper cuts. 😉

I know, I’m putting the cart before the horse. It was just a conversation I had with my PT on Friday. I’m just trying to work it out in my head a bit. And maybe the APRN didn’t let on how bad it really is. She’s been known to do that.

Oi. I need chocolate. Good chocolate. Better yet, I want someone to give me good chocolate.

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I don’t write about this often even though I’m sure a lot of you could empathize. Fibromyalgia and weight issues often go hand in hand.

The thing is, it’s usually not for the reasons you might think. There are many who have Fibro that are underweight, and can’t seem to gain no matter how much effort they put in to make sure they get a calorie packed diet. There are many who are overweight and can’t seem to lose no matter how healthful and active they are in spite of the pain.  I don’t know if people realize just how hard it is to have an appetite when you’re in moderate to severe pain 90% of the time. Pain suppresses the appetite. Many medications suppress the appetite as a side effect. With Chronic Fatigue Syndrome as a co-diagnosis, it’s hard to eat if you’re so fatigued you can’t even chew or blink, let alone cook a full meal or go grocery shopping very often.

The fact is that no matter how healthfully we eat and are active in spite of the pain and fatigue, we have to deal with the biology of the disorder and additional health issues and co-diagnoses that are part of the very real chronic disorder that has a mind of its own. We do the best we can when we can as often as we can. We just hope it’s enough.

I’ve been fat, and I’ve been slender. I’ve been in between too. People treated me better when I was in between than when I was fat. People treated me far, far, far better when I was slender than when I was in between or fat. Because due to Fibromyalgia, my weight blew up to 280 lbs on a 5’4″ frame.

Give me a moment to digest the fact that I’m divulging this sort of information.

When I was That Fat, people treated me shamefully in public. People, nurses, treated me shamefully in doctor’s appointments. People feel obligated to say nasty things about food intake and exercise, and apparent lack of willingness to conform to anything healthy yet have the nerve to complain about being heavy. It’s still acceptable to fat shame here in America because A.) people think it’s helpful to point out the fat and ugliness of it and B.) they think it’s motivational to be rude and mean and C.) some people just think it’s funny to shame people due to their size and act like bullies.

Since I started to lose the weight, in the typical Fibro start and stop fashion, I have dropped 85 lbs so far. This number is accurate as of 1 1/2 weeks ago. And let me tell you, I’m thrilled over breaking that 200 lb barrier. It took me six months to do that with tripled efforts, which means for me trying to fit in 2500 calories a day with as much full fat in whole foods as possible. I try listen to my body when the fatigue takes me down. Managing the pain, managing the relief so that I could move more easily has helped. A few months ago we got a wonderful new mattress so being more rested helps.

During all of time, with each 15 lb mark of weight loss, I see and feel a difference.

Oh, not a difference in how I feel physically. My pain is still there in full force and in fact I’m in far more pain than before I started to lose the weight I gained. That weight that never belonged there.

There’s a difference in how people are treating me and looking at me. People are offering me their places in line again. They’re smiling at me again, more smiles with each pound I lose. More doors being held open for me, where when I was fat, people made it a point of looking me in the face and letting the doors close.

There are people asking me if I need help. People are complimenting me out of nowhere lately on my clothes when I run errands after work. Strangers.

People are noticing my pain now. They are actually seeing my face. They see the pain in my face AND my body, and then they see my cane, and they’re kinder.

I’m not behaving any differently. I’m still me. The only real difference is my weight. This all feels good because I never realized before how kindly people treated me when I was slender. I sure did notice while at my fattest how poorly people treated me. I was invisible to many, less important. Even certain family members. Slimming out somehow is legitimizing.

That angers me a bit, but saddens me more. I think maybe I don’t need to explain why. You guys are pretty intelligent.

But guys… I’ve lost 85 lbs. I know I’m poopooing it, but I am happy about it. Maybe my pain isn’t better, but I know that my risk of Diabetes is down; my risk of Heart Disease is down; and even though I have very low cholesterol intake, my body was producing more bad cholesterol on its own while heavier. I was also drinking more coffee, though, which raises the bad cholesterol readings. Yes…. yes…. while still a coffee fiend I did reduce my coffee intake to two cups tops a day.

My next goal is 25 more. I know it’ll be slow, and that’s okay. If I never lost another pound but suddenly magically had Disney Princess hair, I’d die happy in old age (somewhere in the far future, I hope).

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I survived another birthday. I survived another year. I survived the changing of the leaves. I’m surviving the bipolar change in seasons so far. I’m surviving working.

I’ve been blessed to see my daughters grow and spend time with my loving husband.

I feel as if I’ve been able to begin healing relationships that need it, but I know there’s room for improvement. I know that I need to put more effort into additional healing, additional relationships.

I’ve just looked back on what I’ve written. It’s odd how I’m using the language, “I survived.” It’s odd that I chose to write about that, using that language, before I wrote about my family and relationships. Is that what pain has done to me in this past year? Has it really progressed that far again? I was going to write about something else but this probably tells me more about myself at this very moment than anything else I was planning to write.  That’s a little bit jarring.

This post isn’t at all what I expected, so I think I may need to come back to the subject later. How odd. Forgive me.

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I stumbled across this article on a new-to-me blog that I’m now following. It has some great tips that I never considered when thinking about going to the emergency room as someone who has chronic pain and related issues. This blog entry is talking about CRPS, which is Complex Regional Pain Syndrome. It’s a chronic pain disorder that is separate from Fibromyalgia but can be a co-diagnosis with Fibromyalgia. Each disorder can also be misdiagnosed for the other. She goes into more detail with each bullet point, and you should click the link to see the reasoning why. I’ve begun using these suggestions at work and although it’s been a couple of years since I’ve broken down and gone to the ER, I’m going to be taking this advice.

Considering the Emergency Room? Here Are Some Pointers to Keep in Mind if You Have Chronic Pain. |.

 

  1. Make sure that you have a regular physician who treats your chronic pain.
  2. Show that you have tried to contact your regular doctor before you go to the ER … only using the emergency room as your treatment of last resort, as opposed to the primary place you go for pain medication.
  3. Bring a letter from your doctor.
  4. Bring a list of medications.
  5. Work cooperatively with emergency room staff. It might not be fair, but if a patient comes in screaming and shouting that they need pain medication right away, the staff isn’t going to like it.
  6. If you have a CRPS card, hand it to them and ask for it to be put in your file.
  7. Ask for a nurse advocate or make sure someone is with you.
  8. If at all possible, use the same Emergency Department as the last one you went to, your pain will be that much more believable if you always use the same place.
  9. …keep a folder handy with all those details written down, as well as a copy of most everything I need to bring with me

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Using All The Spoons

Using All The Spoons

I think I’ve said that flare-ups suck donkey balls.  I’m fairly certain that I’ve said it, but if not, I’ll say it now.

Pain flare-ups from Fibro suck donkey balls.  Especially when said flare-ups last more than just a few days or a week.  I’m going on a little over a month.  Feels like it’s getting worse instead of better.  I can understand why some who have Fibro turn to narcotics or to medicinal Mary Jane.

I’ve been in such a bad pain flare-up that I just can’t seem to get out of it, and I’m having trouble now caring about how I handle it.  Not caring about avoiding trigger foods; it’s an effort to ignore the danger foods at picnics and as a guest at someone’s house.  Not caring about how much pain I’m actually in as long as I can rest and not think about much.  Reading helps.  I doze if I watch TV.  The chronic fatigue hits badly during this flare.

I can’t even muster up enough energy to feel discouraged.  My body is tired, my brain is tired, and I’ve been feeling Mom Guilt over not being available for all of the girls’ school things the way I should be.  The way I promised I would be, and I promised wouldn’t change when I went back to work.  I never imagined my weekends would be for recovery and I would dread going out anywhere most times on a weekend, especially on a Friday after work.  I dread going anywhere on a day after work.  I’m off today, though, to attend a PPT and for another appointment.

Since starting work again, my social life has definitely tanked.  I’m just too tired.  Friendships have suffered.  My wallet enjoys the paycheck for sure.  So do our groceries and bills.  But I’m nearly too tired for anything else.  Gracie frequently asks me when my boss is going to fire me.  My youngest, 9, recently informed me that she also hates it when she’s home and I’m not there to greet her off the bus.  The girls are all three of them upset that the “new” routine of 19 MONTHS now means I’m not home as much as they’d like.    They’re upset that I’m in more pain more often, and it seems to them I’m more tired all the time.  I probably am.  So, you know, Mom Guilt.  Especially when I have to send The Husband in my place.  The sad thing? The girls are getting used to it and don’t complain much any more when I’m in so much pain or feeling so sick from the pain that I can’t go with them all.

Weekends are usually used, when possible, to recover from the week.  I try to take it easy and do what needs to be done at a leisurely pace.  Of course that isn’t always possible.  The flare is not going away, and I wonder if my inability to have any sort of recovery time is to blame.

The past two or three weekends were unheard of.  Just on Memorial Day weekend: two birthday parties and a barbeque, one party for each day of the long Memorial Day weekend.  This weekend we had my beautiful niece “Kay” sleep over and she’s just a joy to have around no matter what.  Thinking about her is making me grin while I write this.  Then Sunday after bringing her home, we celebrated three more birthdays and stayed out all day long.  I overdid it both weekend.

I did wake up with a new pain in my right shoulder which could be due to being manipulated and maneuvered by my PCP yesterday at my physical.  I could have slept wrong last night, but in any case it’s there.  Sharp.  Worsens when I walk or move my left arm (what???) or turn my head or try to flip pancakes.  I’m going with “happened during the physical because of how she made me position myself.”  OH!!! I’m so special that she likes to see me for an annual physical every six months now.  ::sigh::  But here’s why I love her: she has clearly done a lot of homework regarding Fibromyalgia.  She wasn’t quite as knowledgeable the last couple of times I saw her.  She was ok with the knowledge but a lot of it had been somewhat outdated.  This time she was on the ball and up-to-date and far more compassionate.  She’s always been compassionate but she was able to connect so many issues I’ve had for years and asked me a lot of questions and said,

“Oh, don’t blame yourself on this.  It’s the Fibromyalgia.  You try.  You work hard.  But you still have the Fibromyalgia and that makes it harder.  I’m not worried about your weight.  Maybe you now pay attention and eat more calories and get more fat… your body is making too much sugar and you don’t get enough calories.  But you eat right, you are active and you work and spend time with your family.”

I do love this doctor.  She’s really good, with a great bedside manner.

I was so anxious about going to that appointment.  I always have anxiety going to my physicals.  When I walked in yesterday it was an increasingly high pain day, and she noticed.  I think everyone noticed.  I think I’ve fooled myself into believing that when I’m having breakthrough pain, pain that my Gabapentin can’t reduce my daily pain to “still hurts but is tolerable and can be ignored,” I can still hide the face that I’m having severe pain.  Pain that, if I weren’t taking the Gabapentin I would be writhing on the floor crying.  Anyway, she noticed and was very gentle and I could see the compassion on her face.  I didn’t see that compassion on my rheumatologist’s face.  I’m still certain that my rheumatologist thought I was drug-seeking.  Luckily my PCP knows me and has since I was 25.

We actually talked about that yesterday: pain management and being fearful of looking like a drug-seeking addict.  She turned to me and said,

“Don’t ever say that.  You need to manage the pain.  Pain is not good for the rest of your health.  If you’re in pain, you can’t be healthy or do anything.  Besides, you went far too long to even ask for help managing your pain. ::scoff::”

And then I remembered how she has tracked my pain, and how when I asked her how to go about diagnosing and getting a rheumatologist, etc, she chastised me for waiting so long to ask for help managing the pain (gently and like a mother).

I know, pain is a bummer of a topic but hey, it’s sort of in my face right now.  It’s not really a bootstrap moment.  But that’s another blog entry.

I know I have a lot to be grateful for.  I’ll even do a gratitude journal, which I haven’t done in a long time.  It’s not about not being grateful.  It’s not about not counting blessings.  It’s about, well, the nature of depression, anxiety, and the pain that came and triggered it.  The pain is just so much to deal with that I think when it gets this bad for so long, my brain breaks a little bit.  My word recall and memory are sucking wind.

Hell, just do a search in my search bar for “fibro fog” and Fibro and you’ll find a mess of stuff about why I feel this way in my brain.  My brain is so foggy right now I don’t think I can go through the whole fact thing again and repeat it in this entry.  It’s already taken me five or six stops and starts and several revisions on this entry.  🙂

I know I’ll shake it off eventually.  For now I think I need to feel this.  I need to go through it and cycle it.  I make great efforts to remain positive as long as possible every day, but I admit that it’s much more difficult when the pain is so high and I lose hair in handfuls from the flare up, sometimes three times in a week.  Maintaining the positivity and the hope for extended periods of time… well… that can feel fake and make the anxiety and depression feel worse.  But then I don’t want to bring anyone else down.  That feels stressful and… I snap.  And I know I’m not as nice as I should be.  I find it harder to censor my brain-to-mouth stuff, and people look at me funny.  Well, half the time it’s probably because it came out with words in the wrong order or I stated the definition of a word instead of the word itself.  But with my nice-filter off… oh, I’m not nice.

I can be vicious.  I don’t like being vicious.  It’s worse if I feel as if someone has personally attacked my character and motives.  It’s much, much worse if I don’t get my morning coffee.

Pain, pain, go away, come again, like, never.

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Fibromyalgia Awareness: Pain Flare Up

I’ve been working my way through what feels like an endless flare and as each day goes by, it seems harder and harder to get through.  Of course I still get up each day and as each individual day goes by, the day is harder to get through.  It’s par for the course, really, but this has been a really long flare that’s been going on for well over a month.  I’ve had mini-flares within the flare.  Weekends let me know just how badly I’m really taking care of myself during the week by slamming me with the CFS.  I wish I could give in to it, but 3/4 of the time I really can’t.  When I do, it’s sweet heaven and drifting into sleep, pained as it is, gives me the only relief I can get sometimes.  I’m still on a half dose of my Fibro med and have about seven days left on it before I can titrate up.

But now? During this past week specifically? The CFS is starting to kick in during the week.  I’m having worse trouble in the mornings not just getting up out of bed (that’s always a given) but waking and shaking off the grogginess.  I’m afraid it won’t be long before I can’t hear the blaring alarm that’s next to my head nor feel the vibrating phone alarm under my pillow.  I’m feeling the CFS at work now.  I’ve been successful in shaking it off at work, but I’m worrying about reaching a point where I can’t shake it off so that I might not be able to drive home. I already keep my cane close by and use it frequently.  During my flares I use it nearly constantly.  My balance is much worse; I can fall over out of nowhere for no reason; my sciatica gives me bursts of searing pain and completely goes out on me; I get other back pain and myofascial pain and other random pain that requires the support of the cane so that it helps ease things.

I was out at the store a week or so ago to run an errand and a lady came up to me to tell me that she used to use the same cane.  It’s purple with colorful flowers all over it.  I thought she was coming over to be nice.  Then she said,

“I was at a therapy session one day and my physical therapist saw my cane and asked me why I used it.  I told him why and his response to me was to throw it away and just stop using it.  And do you know he was right? It was the best thing I ever did.  You should do the same thing! It will be the best thing you ever do! You’re too young to use a cane!”

The smile that I’d had on my face must have faded instantly and I must have had daggers suddenly shooting out of my eyes, because the smile she had been showering me with faltered.

“That’s so nice for you.  I don’t suppose you have Fibromyalgia like I do.  I wish I could just throw away my cane.  I’ve done physical therapy but it not only didn’t work, it made my chronic pain disorder worse.  The cane helps me relieve some of the pain, but without the cane I wouldn’t be able to rely on my balance and I would fall more often.” 

Then I saw a light bulb.  I had been afraid I would see a slack jaw.

“Ah, I have a friend that has Fibromyalgia.  My mom, God bless her, had it too.  I understand.  Bless you.”

Then her smile returned and I felt at ease again enough to return her smile.  As I continued shopping I started to feel a different kind of unease and my frustration returned because I kept turning that incident over and over in my mind.  As I’ve gone over the past week (or more) I’ve continued to think about it.  I’ve been trying to figure out why it continues to nag at me.  It’s more than the immediately apparent unsolicited advice.  It’s more than the rampant incorrect assumptions being dumped all over me in that exchange that lasted all of 3-5 minutes.  It’s more than how quickly a seemingly positive random interaction soured.

Then throughout the past week or so, I found that I was paying more attention to how people respond when they realize I’m using a cane or I’m in visible pain.  When they can “see” my invisible disability by proof of the cane they’re very polite and smile and will give way.  People sometimes will offer to give me their place in line if they see I have fewer items in my cart/basket.  People are even more compassionate if I have my girls with me and they’re on their best behavior with me.  If I’m feeling tired and I’m sure it’s on my face, again, people are even more compassionate.  If I’m moving slowly, carefully, and purposefully, people are kinder and gentle.

But only if I’m smiling.  Only if I don’t let the pain visibly show too much in my face and posture.  Only if I can manage to control vocalizing unexpected bursts of severe pain that take my breath away.  Because if I’m not smiling… if I look like I’m ready to cry… if people can see just how much pain I’m in and maybe even hear it then the discomfort is palpable.

As it turns out, my pain and discomfort and feelings of sickness due to the pain aren’t really about me.  Of course not, why would my disability be about me? The things I go through are about everyone else.  I’ve always known this on some level, but I didn’t realize until recently just how much.

I can’t just deal with my pain and try to get through it.  I have to help others through my pain as I’m trying to cope with it myself.  I have to reassure them and explain it to them.  Until I thought about it, and thought about specific recent incidents in a new way, I didn’t realize just how much effort it takes to put up the appearance that my pain isn’t nearly as bad as it is even when it’s so bad that I can’t hide it and it breaks through and takes my breath away and I shriek.   I realized that I could not only see the discomfort others feel over my pain but that I was actively pushing against it trying to care-take others’ feelings and worries about my obvious pain… even strangers.

I reassure people that I am, in fact, all right (fine, even) and “this is normal for me.”  Because somehow, if “it’s normal for me” then I must be used to it and I must have a high pain tolerance.  I do have a high pain tolerance, but come on.  Pain is pain.  Severe pain is severe pain.

People will ask with fear, “Are you all right?” and I can tell that they’re hoping I’m going to minimize the situation, brush it off for them.  It’s rare that I tell the truth about how bad it is.  It’s par for the course.  It’s my normal, yes, and I have to get used it.  I have to endure it. Even when my baseline pain increases, I just have to get used to it.

I have to say I’m fine because it’s expected.  No one wants to hear the details of pain or what Fibromyalgia is like or what it means for my life and my family.  No one wants to know what struggle it is for you to even be standing up right in that moment.  You suddenly feel like you’re that elderly relative that’s asked how they’re doing and they give you the laundry list of every single ache, pain, illness, bowel movement, skin tag removal, kidney stone, colonoscopy, and family gossip because you see That Look come over the other person that lets you know they just don’t want to hear it.

Except I’m not really all right. I just can’t let anyone know how “not all right” I am because pain like this? Nonstop, constant, chronic pain that has severe flare ups? It’s taboo.  I’m not really supposed to say, “No, I’m not all right.”  If I say that then that implies, apparently, that I have expectations of other people to actually physically or verbally or emotionally help me and I shouldn’t impose that on people when it’s not their business and they don’t know what to do.

Maybe that’s what’s most uncomfortable for other people.  It’s uncomfortable because they don’t know how to make it better (they don’t have to make it better), they don’t know what to say or do, they don’t know what’s appropriate because there’s no rule book.  If someone else’s pain can’t be easily soothed because it’s more than surface pain (or what I call Less-Than-Labor-Pain Pain or for men to relate, Less-Than-Kidney-Stones-Stuck-In-Your-Urethra-Pain Pain that never, ever stops) this “look” comes over someone’s face.  This look that says my pain is not only uncomfortable emotionally for them but it’s an inconvenience.  I’ve put them into a position where they have no choice but to think about and deal with something that they haven’t ever had to think about before.  I’ve put them into a position where they can’t actually help.  I’ve put them into a position where they have to witness someone else’s pain and discomfort and yes, agony, and they don’t know the right thing to do.

 

What’s right is:

  • Please, try not to make someone else’s disability be about you
  • Please remember that those of us who have chronic pain are not lazy or making it up
  • Please don’t judge us as drug seekers… we are trying to relieve pain that causes many people to commit suicide; and if we are on pain relieving medications, don’t assume that we’re addicts.  If the medications work in some manner then they’re doing their job
  • Please remember that we are not intentionally inconveniencing you no matter how frustrated and annoyed you may feel over our pain
  • Please understand that we are not choosing this and if we had the choice we would make it stop forever and ever, Amen
  • Please know that without a doubt, we have tried every natural non-narcotic remedy that we can think of because we are desperately afraid of the mere whiff of appearing to be a drug seeking narcotics addict even if the pain relief medication/s we take are not narcotics nor addictive
  • Please remember that as uncomfortable as you are about someone else’s chronic severe pain, that other person is far more uncomfortable than you are 24/7
  • Please treat people with respect… not just people that have disabilities, but all people and that way when you see someone that has a disability you don’t have to wonder how you’re supposed to treat them
  • Please don’t apologize
  • Please don’t assume that you’re required to help unless we ask you, but we always appreciate heartfelt offers of help
  • Please be compassionate

 

Do I sound bitter? My apologies.  This flare up over the past nearly-two full months is having an effect on me that’s not pretty.  I’ve had ever-increasingly worse CFS due to the pain.  I think I said that already.  Fibro Fog is sort of chucking me on the chin here.  It’s easy to tire because the pain comes on so badly that all my body wants to do is attempt to sleep in order to escape.  Soon I’ll be allowed to titrate up from the lowest dose of the medication I’m on, which should help, so I pray that my insurance won’t take the stance that I’m a drug-seeking addict even though my prescription isn’t for a narcotic.  You know, because they’re idiots.

After all, I have laundry to do.

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Originally blogged on the blog:

love explosions

when the love for your child overwhelms you

Tone it down. Please click those words, the ones that say Tone it down.  I really can’t add anything useful to that blog post because it was stated all so perfectly.  Read about why a person’s tone of voice doesn’t make their side of the argument invalid.

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