My favorite tales

I sometimes forget that multiple sclerosis is a serious disease. And that things like the daily wearing of disposable underwear and typing with my left (non-dominant) hand were hard and demoralizing at first. They only became standard for me after I learned the new way I could do them. 
 
Once when I was feeling really sorry for myself I watched the movie The Bone Collector. I became enamored with the lead character who was completely paralyzed and bed-ridden, but discovered the he could still work as a detective. 
 
He found he needed a team to do his legwork, but that his brain was as sharp or maybe even sharper than ever (and did I mention that he’s played by Denzel Washington? Yummy!).
 
Additionally, every day he has to convince himself not to kill himself. Well really, that would’ve entailed convincing someone else to kill him or help him kill himself, which is probably illegal in his state.
 
Read the book
 
I bought the book and re-read the story. I wondered about the author and how he came to the story. What made him think of it? I don’t want to kill myself but it does make me think of the emotional battles I do often fight. 
 
It doesn’t comfort me to know that doctors now consider chronic depression, which is exponentially more common in MSers than in the general population, to actually be a symptom of our disease, a bug in our brain chemistry.
 
As an aside, one of my friends recently “exercised her right to die” in Oregon. She basically just stopped eating and drinking, and passed away peacefully several days later. So really if he wanted to really do it without help, he could have. But I digress…
 
Watched TV show
 
It has now been made into a weekly TV show. It shows on Friday nights which is, I think, a pretty dead time slot for television. It reflects the wishy-washy confidence of the network I guess.
 
I became fascinated with the workarounds that he found for himself. And in the end I thought if he can do it I can do it.
 
It was the first in my fascination with people who overcome or persist in spite of their disability. I collect the stories now, and revisit them when I’m blue. It reminds me that I have successfully persisted quite a bit!
 
What I’ve learned this week

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MS med makes cold worse?

I never get annual flu shots because I don’t want to help my immune system in any way. I’m at war with my immune system to a certain extent because it is at war with me.
 
So when I got this cold at first I kinda thought it was cute, because my immune system seems like such a bully.
 
But now three weeks into the monster cold — which I only call monster cold because I don’t usually get colds — it has lost its charm.
 
Seldom sick as a kid
 
I was never a very sickly child. I had chickenpox once, and mumps, which kept me out of school for the requisite time but I was not prone to getting regular colds.
 
As a young adult, I did occasionally catch whatever was going around, but was never down for more than a few days.
 
Once I was diagnosed with MS, though, I noticed how rarely now anything makes me sick. I assume that this is evidence that my immune system is superstrong and to be fought against as it is attacking me by misguided accident.
 
But now obviously my immune system is not in super mode.
 
Gilenya works
 
The fact that I got this cold suggests to me that the current MS med I’m taking is doing it’s job for me, thwarting my immune system by restraining lymphocytes from being released by my thyroid. (See previous post on Gilenya.)
 
However, it is driving me nuts not being able to speak. My laryngitis was so bad at one point: I had called customer support for my new HP laptop and it was voice-response only. It couldn’t figure out what I was asking for. Frustrating.
 
A friend gave me a bottle of Echinacea left over from when she was fighting a cold.  But it’s from 1997 and in small print on the side it says “Not recommended for individuals with auto-immune conditions.”
 
And while there is now some debate over whether MS is in fact an auto-immune disease, I prefer to err on the side of caution.
 
Does OTC negate it?
 
I’m not sure if avoiding taking any cold medication is the wiser decision here.
 
My doctor did advise me that “being on Gilenya doesn’t mean you can’t take symptomatic cold remedies.” But he also concedes that it is “(h)ard to relate this particular problem to Gilenya…”
 
So do I risk feeling better and maybe blocking the great work this drug is doing?
 
I think I’ll just go back to bed and think about this tomorrow!
 
Things I’ve learned this week
 
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MSer: Plan snacks

Waiting for my neighbor to deliver a plate of Thanksgiving day food, I pictured myself as a hungry baby bird, waiting with my mouth open and crying piteously.
 
Unfortunately, she was, at the same time, experiencing utter oven failure. With a house full of guests, doing their annual Thanksgiving day potluck, her oven had crapped out, and calling to tell me she would be late was, understandably, the last thing on her mind.
 
As I waited for her, I spiraled emotionally down, finally landing at full-on self-pity. I felt helpless, useless, needy, and ashamed.
 
When she finally arrived, flustered and apologetic, I muttered my abbreviated sob-story, burst into tears, and greedily ate the food she brought.
 
The moral of this story is that letting hunger overcome you is one recipe for the blues: you get weak, which leads to frustration, anger, and tears.
 
De-brief
 
What I should’ve done, for her and for me, is have a regular eating schedule, which includes well-planned snacks! 
 
I don’t know if this is relevant to all MSers, but I tend to not think about food until I am hangry. Those around me can tell when I’m overdue for food.
 
The National Center on Health, Physical Activity and Disability (NCHPAD) has some great articles on eating (as well as on wheelchair exercise, and mental health, among others).
 
Helpful tips
 
This is what I gleaned this time:
 
  1. Eat every four hours, even at this holiday season, and snacks should always include one protein and one carbohydrate to keep up your energy.
  2. Watch portions. Snacks are smaller than meal portions. They shouldn’t “fill you up” but rather help you to be “not hungry.”
  3. Choose your snacks to contribute to your calorie and nutrient needs, rather than considering them as “extras.
  4. Limit yourself to a 100 calorie snack if your meal is in one hour or so (one hour = one hundred calories); two hours, have a 200-calorie snack.
  5. Don’t mix snacking with other activities. Snacking absentmindedly while multi-tasking can lead to overeating.
  6. Keep snacks on-hand at all times. Carry two tasty, nutritious, ready-to-eat snacks in your bag so you don’t run out. Always be prepared!
I could’ve just had some Cheerios with Almond milk in a bowl and sated myself. Sigh.
 
Some other quick, two-food snacks include peanut butter or cheese with apple slices, raw veggies and cottage cheese, or 10-12 baked tortilla chips and salsa.
 
I know this already, but still I hadn’t planned ahead. Once I hit famished, I could think of nothing helpful.
 
Lesson re-learned. 🙂
Like you need to be urged to eat snacks!
 
Other things I’ve learned this week
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Absolutes, hope and MS

“This house is not for you. You should be in assisted-living. You will never again be able to climb the stairs, or even get into the kitchen, past all this clutter.”
 
I’m sure she’s right. But once I heard the word never I stopped listening.
 
Because in my mind, this is my only life. And I believe that really anything could happen tomorrow. No one knows the future. She can’t know the future. 
 
I could live another fifty years! And I do not want to live another fifty years in assisted-living. I wouldn’t want to pay for that anyway. I’d like to use that money to travel, maybe. Or make accessibility improvements to my current home. Or buy a lakehouse as a second home.
 
Never or always
 
In our house we say, “In case of emergency, break glass.” It’s important to us to have some sort of “safety net.” That is kinda how we plan. Just know what you’re going to do next if it all goes to hell. What is your next, first step?
 
Then don’t spend your precious life, the only one you have, obsessing over it. If you believe in a God or some sort of benevolent hand, it will all work out. If you don’t, you can just say “S@#t happens.” You’ll wake up tomorrow either way. You can start dealing with it then.
 
It happens to me frequently (although some may say I’m just framing these incidents in my life as “emergencies.”)
 
Just one example
 
As an example: the wheelchair.
 
Years ago I asked for a prescription for one from my neurologist. Next I went to a “wheelchair store” and saw that everything was like $3000 and up. And when I contacted my health insurance provider about it, they basically told me to come back after I’d met my $2500 deductible first. 
 
Since I was still walking, albeit with a cane, and there were other health issues going on in our house at the time, I didn’t think it met any level of urgent yet.
 
Some time later, we found a used one for free on Craigslist. As that seat wore out and the wheels began to deteriorate, we found a $300 one at the local Walgreen’s (although pricier than free, it was no $3000!). 
 
This year my most recent one did come from my health insurance.  It is very basic, but they bought it for $1260 and I only paid a copay of $4.13.
 
Time passes, s@#t happens, we live our lives the best, and happiest, way we can.
 
What I’ve learned this week

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Chronic illness & bullying

bul·ly  |  ˈbo͝olē  |  noun.
a person who uses strength or power to harm or intimidate those who are weaker
 
My first run-in
 
In sixth grade, I started at a new school with some, but not all, of my classmates. As part of a program for faster learners, I was moved to the junior high school to merge with other smart kids from a handful of different local elementary schools.
 
My best friend from the neighborhood — I’ll call her Deirdre — was a year ahead of me in school. So this was a new school for her, too. And she was a little surprised and irritated that I was there with her, a year before I was supposed to be there.
 
I was a smarty-pants. She now hated me. And with several of her new friends, she began showing up at recess calling me names, taunting me, and hinting at violence to come.
 
Present day
 
Bullying can happen in any relationship. Add chronic illness to the equation and the level of frustration can be overwhelming. This abuse aims to render physical or psychological harm to another.
 
Although we usually think of domestic violence when we think of abuse, there are other, less obvious forms. Abuse can be verbal, where “cruel, demeaning language is aimed at another person.”
 
It can be neglect, “when a person is deprived of essential care…or opportunities to engage with the outside world.” Or even just handling a person roughly or aggressively while assisting them.
 
Whatever the form, bullying and abuse are not acceptable, and should not be tolerated.
 
Dependence
 
An article by the Mayo Clinic points out that “Bullying was once considered a childhood rite of passage.” But today we realize that it can have like a lifelong effects in someone’s physical health, self-esteem, and emotional well-being.
 
Today, as an adult with chronic illness, I depend on friends and family to do for me. Most of the time I use a wheelchair to get around so I am constantly in situations of “perceived power imbalance.
 
But I also realize that I can be a bully, too. The MS Society cautions that our caregivers “can be abused by a person with MS who uses foul or demeaning language or lashes out with sharp fingernails or a cane or crutch.”
 
We need to remember that life with chronic, unpredictable disease can be challenging not only for us but also those who love and care for us. It helps to occasionally stop and put yourself in the other person’s shoes.
 
Conclusion of junior high bullies
 
In junior high, the daily abusive behavior was confusing and upsetting. The power imbalance was clear: three older kids with shrewd awareness against a younger, naive and seemingly impertinent one. 
 
Later that week I cried to my parents about it and together we came up with a plan.
 
I started calling out a hearty greeting to Deirdre by name whenever I first saw her group advancing. This had the effect of dissolving their angry demeanors into teen-girl giggles. Which I suspect embarrassed them.
 
Whatever the case, after several days of this, they lost interest in me and I never heard from them again.
 
What I learned this week
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43 hours without electricity

Or lessons I learned from the outage.
 
We lost power on Saturday night at 8 PM and it stayed off until Monday afternoon at 3 PM. 43 hours. Not anything like what other people have gone through, but disturbing nonetheless.
 
There were a few emails the day before, warning us that they would need to shut off electricity in advance of the powerful wind as a precaution. Given the recent, disastrous fires, it is easy to agree with the reasoning.
 
But really? Is this the best PG&E HQ could come up with in the two years since Paradise? I think this is a distressing lack of imagination! Even my cousin in Washington said “Somehow many other countries have figured out how to run the power lines underground. Perhaps they could draw us a little picture.”
 
OK, I do believe in climate change, both natural and man-made, but I also
living in Hayward and suffered through the Oakland Hills firestorm in 1991, so this is hardly a recent problem. If burying the lines was so expensive back then, we could’ve at least started saving then. Maybe had a bake sale? Just sayin’
 
The outage
 
We lost power on Saturday night at 8 PM and it stayed off until Monday afternoon at 3 PM. 43 hours. Not anything like what other people have gone through, but disturbing nonetheless.
 
With advance notice I was able to put fresh batteries in my flashlight and charge up my iPad and cell phone. In present day society, being able to text and listen to podcasts while the power is out is not a hardship. I was able to ration my battery accordingly.
 
Like camping
 
I am heat sensitive like many MSers but I do not use an Air conditioner at this time. Luckily if  I needed an air conditioner I could be driven to a local cooling station, for example. Usually in a community in crisis there are places that are running on a generator.
 
Another friend asked do you have a plan if you have to get out? Answer yes. In fact my husband keeps the gas tank in the truck above the half full level at all times, and has it already stocked with emergency supplies. So at a moments notice (well for me that’s more like 10 minutes!) we just have to get ourselves out the door and into the truck.
 
Debrief
 
Ultimately this could have been way worse. Clearly my exit plans rely on rely on friends and family to help me out of the house, or to drive me somewhere. I‘ll continue to mull exit options for the future, but I guess you never know what you don’t know until after the event.
 
So for the next power outage should get: hand crank radio, solar powered or battery-operated cell phone/iPad charger, maybe some cans of cold coffee and a battery operated fan?
 
Which makes me think of preparing for camping or a zombie apocalypse (digression: would zombies be a danger to me since I notice that mosquitos no longer will bite me now that I’m taking a DMT, probably my blood tastes bad to them, although that is anecdotal so could be applicable just to me…)
 
What I’ve learned this week
  • Hoarding is twice as common among people with MS versus the general population
  • Most of us have inherited some core limiting beliefs about money, like ‘Money doesn’t grow on trees’ or ‘Waste not, want not’ so changing your underlying programming is critically important in manifesting a different reality. Cairns, J. A. (2015). The abundance code
  • 30 days is a good length of time for developing a new habit. Scott, S. J. (2015). Exercise every day: 32 tactics for building the exercise habit (even if you hate working out).

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Walking on sunshine

I’ve been using a wheelchair for the most recent fifteen years of my life. But curiously I’m always walking in my dreams!
 
In them I’m usually not at home. I’m usually walking around a building, a shopping center, a store. Even outside.
 
And it is only recently that I’ve started to occasionally notice that I’m holding a cane or crutch in my dreams. But I am still walking. 
 
When They Were Young
 
In my dreamscape, the wheelchair does not ever appear. It seems my brain knows it does not belong.(I wonder if someone who has been confined to a chair since birth appears moving that way in their dreams.)
 
I used to be proud of my long legs; now they get in the way a lot of the time. Still, I would not like to have them removed, so that’s something. Even as inconvenient as they can be, there’s always the chance that I’ll need them someday.
 
But I also used to consider my legs to be fat. I was ashamed that their was no space showing between my thighs, for example. Now that I’ve lost so much muscle, they’re definitely skinny, but not in a good way.  Be careful what you wish for!
 
Is Dreaming Visualization?
 
I’ve been reading about sports visualization. And I wonder if I can take advantage of the finding that your body experiences muscle movement whether it’s real or imagined. To rehearse what it would be like to walk again.
 
Since the brain does not distinguish between real and imagined actions (see here), does it count when I’m sleeping? Am I getting the experience of walking in my dreams? 
 
There are also new products that potentially would allow me to be more mobile, like using a lifeglider, for example.  Yes, I definitely would need legs for this!
 
Now
 
These days I spend most of my time indoors in a wheelchair.  I am reluctant to get overheated, to spend a lot of time outside in the sun, so I stay inside like a housebound vampire.
 
It is not really a hardship for me because I like to spend time alone, to think and read and learn. I enjoy research and I don’t miss hiking or yoga or Tai Chi outside. I don’t miss it but I wish I had the choice to go outside at a moments notice if I wanted to.
 
At this point I understand that I may never walk again. Unless a cure is found, or even a way to reverse the damage done to my myelin. 
 
But then again I see no harm in adding guided visualization about walking to my daily routine. 🙂
 
What I’ve learned this week 
  • Objects, as coins, tools, etc., used by a teacher to illustrate everyday living are called Realia plural noun [ree-ey-lee-uh, -al-ee-uh, rey-ah-lee-uh] 
  • Muscle memory is real
  • Get free online classes from prestigious schools like Yale 
  • One recommended place to get your prescription eyeglasses online for $15ish

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MS and Turmeric

After the assault on my liver, I realized that it now needed my protection. So I have embarked on a mission to consciously try to support it.
 
Like limiting my use of non-prescription drugs and my alcohol intake, moving more (exercise: isn’t that always the case?), staying hydrated, and eating healthier.
 
And I started adding Turmeric to my diet.
 
What is it?
 
You’ve likely heard about this: the new big thing in the long line of big things. It’s an herb that has been shown to affect inflammation as well as protect against heart disease among other things.  Since inflammation is such a problem with MS I paid attention.
 
It turns out that not only is consuming turmeric one way to combat chronic inflammation, it also has been used in traditional medicine to tone the liver and may even have a “protective effect” on it.
 
Yay, two for one! So I’m trying to drink turmeric tea regularly and use the spice in cooking, for example. 
 
Where to get
 
It is used in Indian cooking like yellow curries and is often found in mustards (Some food producers use curcumin, derived from turmeric, as a golden-yellow coloring additive for butter, cheese, canned beverages and other products. When looking for it on the nutrition label under ingredients, look for the name of E100.)
 
It can be found in the spice aisle of your local grocery store or ordered online from Amazon, for example.
 
We’ve been growing turmeric now for a couple of years. I can use it as tea by grating it into a tea ball and soaking in hot water with honey.
 
Food ideas
 
Experts suggest that where there’s turmeric, there should be black pepper. It increases the bioavailability of turmeric by 2000 percent! 
 
Others have added a “good fat” like coconut oil to activate it.
 
Some recommendations I found online:
 
I just stirred up a tsp of tumeric and a tsp of coconut oil.  Put a thick layer between two gingersnaps.   Delicious!
 
I use in my coffee in the monrning. A pinch of turmeric, a pinch of cinnamon and little of black pepper. It tastes good and I have had no pains and no infections. I am going on 81 years old.
 
I use in coffee with spices, too, with some almond milk and stevia, Sometimes organic cocoa.
 
You can also add turmeric to sour cream or your favorite dips and serve it with fresh vegetables 
 
Turmeric is especially complementary to egg dishes, such as egg salad, frittatas and omelets.
 
 
Finally,  I found a few other things that turmeric Can be good for:  teeth whitening and arthritis pain 
 
I’m really curious to know if turmeric and chocolate milk would go good together. I’ll keep you posted on that.
 
What I learned this week

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Too old for Gilenya?

In the Gilenya Facebook page we recently had a discussion about this article: Meta-analysis of the Age-Dependent Efficacy of Multiple Sclerosis Treatments
 
A meta-analysis in scientific thinking is a review of multiple previous studies to try and confirm a new hypothesis. In this case, whether the efficacy of MS drugs declines with the age of the patient and finally becomes ineffective.
 
MS Drugs
 
Drugs approved for MS are not drugs that can cure the disease. Nothing can cure the disease. We still don’t even know what causes it.
 
So the drugs approved for MS are basically drugs to halt progression of the disease. (And like I said, the cause of which is still unknown, so what halts the progression is still technically unknown.)
 
At this point there are so many DMT drugs for MS (17 to date) that attempt to work in many different ways. It can be a crapshoot.
 
But this article concludes that all DMT drugs that work on MS begin to decrease in efficacy after the age of 53. I wonder if this is why my doctor keeps asking me how old I am?
 
Are expensive
 
MS drugs, especially in this country, are exceedingly expensive. Not to mention the hundreds of others that aim to treat symptoms.
 
In one example, in 2004 the MS Society estimated that “the major drugs approved by the Food and Drug Administration (FDA) for relapsing- remitting MS can cost between $10,000 and $14,000 a year.”
 
Given the news that the cost of prescription drugs in the U.S. is now the highest in the world. Can you imagine what our costs are today?
 
And are difficult to measure
 
And speaking as someone who now has entered the secondary progressive phase of the disease without active exacerbations, it is often hard to tell if the drug I’m taking makes a difference.
 
The only really accurate test we have is the MRI, which can show If there are newer lesions. The idea is that if there are newer lesions the drug that you’re taking is probably not working as its goal is to keep new lesions from forming.
 
But there have been no tests that show that new lesions have any correlation with symptoms. So does the appearance of new lesions on the MRI mean that the disease itself is advancing? Has being on this drug made any difference.
 
What I’m wondering
 
So here’s my dilemma. I have continued to decline over my lifetime.
 
And it is concerning to me that I keep paying x number of dollars to stay on this drug all while studies are showing that stopping it now might not hurt me.
 
On the other hand, other studies show that some people who stop it, even those that switch to something else, experience a major rebound exacerbation resulting in further decline from which I cannot recover.
 
And there is no way to tell in advance how I will respond.
 
Ergo, if I stop the drug based on these latest studies, I will never be able to get back to where I am now if I decline further after doing it.
 
I will be meeting with my neurologist next week and having a chat about this. Stay tuned.
 
Things I’ve learned this week
  • Nasturtium leaves, flowers and pods are all edible
  • Lede is a real word, as in “Way to bury the lede, Amy!” Apparently that’s the noun! I’ve been imagining that phrase wrong.
  • Weight-bearing describes a person who is able to carry their own weight with at least one leg
  • Three inputs to your brain for balance: sight, auditory (vestibular), and proprioception, which is the medical term that describes the ability to sense the orientation of your body in your environment
  • Maybe a picky eater is actually only picky about the method by which the food is prepared
  • Inspiration porn example: ‘He asked her to the prom even though she has Down’s syndrome.’ But should be just like it’s not cool if you say ‘He asked her to the prom even though she is Asian.’
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My MS in September

I used to love buying new school supplies even after I graduated. Like paper for the printer and pens and notebooks for a new journal. And colorful folders and sharpies and glue and glitter. Ah school supplies! 
 
Anyway, enough of my reverie. Back to the post at hand. I usually have a set routine in the morning that goes kinda by the wayside during the summer, and especially now because I’m between jobs; I’ve kind of let it lapse.
 
But now it’s September and back to routine so I thought I would share my morning routine with you:
  1. I wake up in the morning, wiggle my toes and put my knees to my chest and rock side-to-side a little bit.
  2. I sit up and hang my legs over the side. I bend over, touch my toes, then back up a few times just to get the blood kind of going.
  3. I turn off the white noise machine next to my bed and turn on the light there which I leave on for the rest of the day
  4. From the drawer next to me I retrieve the pill container where I keep a weekly supply of pill doses (I take stuff twice a day). I swallow my Gilenya and a few other meds and supplements in the morning using the waterbottle that I keep on my nightstand and refill as needed.
  5. Then I scoot the wheelchair over to the side of the bed and maneuver myself into it 
If the bed is dry I will just pull the covers up and smooth the duvet cover over everything. This is how I make my bed now. Otherwise I will remove the “chux” (see below!) to handwash in the sink, then make up the bed.
 
I now sleep with chux which are (these https://www.parentgiving.com/shop/reusable-underpads-30/c/ ) reusable bed pads for when I leak during the night. 
 
This is the sexy reality of my life: I have a leaky bladder (this is what we are currently calling incontinence? Uh, OK…) It is the bane of my existence and the most embarrassing symptom I have right now.
 
I roll myself to the bathroom and do my morning ablutions. If I have items to handwash, I start a sink full of warm water and good smelling, no-rinse Soak then throw them in.
 
Finally I eat something green before even having coffee (i’m keeping a bowl of frozen peas mixed with nuts, dried cranberries, and a few chocolate chips, moistened with salad dressing and eat a few spoonfuls while the water is heating), then have oatmeal with walnuts before anything else.
 
I only have 1 cup of coffee (have I mentioned my leaky bladder?), then have tea, cocoa, bouillon, cider or just plain water the rest of the day. 
 
Eating something green first thing in the morning is the most recent habit I have added to my routine. It’s my concession to The Wahl’s Protocol. Next I want to add some regular daily meditating somewhere in there!
 
Things I’ve learned this week
  • Reusable bed pads are called chux.
  • It’s okay, may be preferable, to eat apple seeds, so core and all.
  • The Bletchley Circle (BBC TV series) only ran for two seasons from 2012-2014 but the concept was apparently tried in the US with The Bletchley Circle: San Francisco in 2018.
  • Waterpik Water Flosser replacement tips should be replaced every six months, and if you buy one at a garage sale you should replace the existing one immediately! (Also you can download a user manual at the company’s website.)
  • Most peppers are not overly spicy but the ones with the black seeds are hot! Use gloves when removing the seeds and don’t rub your eyes!

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