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Daily Journal with Mitochondrial Myopathy

Day by Day with a Movement Disorder

My Journey with a Mitochondrial Disease - "But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint." Isaiah 40:31 KJV

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Diagnosis in 2006 - Parkinson's Disease and Peripheral Neuropathy, then in 2007 - Essential Myoclonus. Finally in 2011, after a muscle biopsy, I was diagnosed with Mitochondrial Myopathy as well as Peripheral Neuropathy.

Share my journey - coping with the testing, the medicines, nutrition, digestion problems, exercise, the emotions, uncertain diagnoses and no telling what else!

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Looking Forward to a Busy Week This Week

Day by Day with a Movement Disorder Posted on April 26, 2009 by DBMay 21, 2016  

I feel really good today, and that’s something to celebrate! I didn’t even have to fight to stay awake in church today, the way I have for some time now. I think my body is adjusting to the steady level of glucose in my system, or at least a lot more steady than it used to be.

I continue to read everything I can find about ways to improve my diet and keep my blood glucose level in a healthy range.

Not that every day has been as good as today has been. We had our usual Date Day Friday, and the weather was gorgeous. That made for some pleasant yard sale shopping, but it meant we were stopping at a lot more sale signs than we have since last spring. Somewhere around lunch time I just ran out of energy. I ate what I thought was a reasonable lunch, but had the highest glucose reading I have measured so far several hours later. And to add to the general fatigue and yucky feeling from too much glucose in my system, my hands and feet were noticeably swollen. By the time we got home I was really very uncomfortable, and did very little Friday night or yesterday, either. Thank goodness that rough patch is over for now.

I’m looking forward this week to seeing my doctor to ask him about my test results from the Glucose Tolerance Test, go over my log of a month’s worth of glucose readings with him, and get an A1C test done. Oh, and I should tell you that I’ve been pleasantly surprised that all the finger sticks (for right now I’m testing before and 2 hours after every meal) aren’t nearly as bad as I thought they would be.

Here’s my understanding of how the A1C test I will have this week works. Every time a person’s glucose goes too high, the red blood cells are changed, as they react with the excess “sugar”. Once the glucose level comes back down, those changed blood cells do NOT change back to normal. So, for the life of that red blood cell, there is a chemical marker that the A1C test can read. If I have had lots of episodes of high glucose over the last few months then lots of my red blood cells will have this chemical marker in them. This test is almost like a diary of the last two or three months worth of sugar levels. It’s the last step in the diagnosis process to decide whether or not I have pre-diabetes or actual Type II Diabetes, as I understand it.

Then, later on this week I have my first appointment with an Internist who specializes in Hypertension and other Diabetes related problems, particularly Kidney problems. Don’t get me wrong. I am not having any trouble with my kidneys now, and I want to keep it that way! He comes highly recommended by my Gastroenterologist, which means he will be someone who can coordinate with my Gastro about my diabetic diet and my digestive problems and elimination difficulties.

I feel like this is going to be a very important week for me, and I am anxious for it to get going! I would appreciate your prayers!!!

Posted in Quality of Life | Tagged A1C Test, blood glucose, diabetes, diagnosis, diet, elimination difficulties, exhaustion, nutrition | Leave a reply

Now on Antibiotics for Stomach Inflamation

Day by Day with a Movement Disorder Posted on August 11, 2008 by DBMay 30, 2016  

We received the answering machine message Friday that the Endoscopy biopsies were all good, but did not get a chance to talk to the nurse about what my Gastro had found. So I called first thing this morning, and he is putting me on the pre-packaged set of antibiotics and acid reducer pills normally used with ulcers.

She did say my stomach lining is very inflamed, but she never actually used the word “ulcer”, so I’m assuming it falls more under the term Gastritis. I will have to do the research again on Primidone, because my Neuro said he had never heard of that as a possible side effect.

I do know that Primidone headed me in the direction of constipation as soon as I started taking it, so I was blaming the tummy problems on it. But as bad a reaction as I had to the Clonazepam, it could be that it was that medicine that inflamed the tummy, and I just felt too miserable to realize my tummy was getting worse.

Regardless of where the blame should be, I now have a treatment plan to deal with it. I also remembered to ask her if it was OK for me to continue to drink the decaf versions of all the High Anti-Oxidant teas that I get each day. Hubby is poking a cup at me all day long! LOL!!! But it’s part of our Super Nutrition routine that I am glad to continue. Some days I get as many as a dozen cups of various herbal teas. As you might imagine, I get a lot of exercise just going back and forth to and from the bathroom!

Posted in Medicines and Supplements | Tagged bloating, Clonazepam, diagnosis, diet, elimination difficulties, endoscopy, Gastritis, Gastroenterologist, nausea, nutrition, pain, Primidone, Quality of Life, stomach, symptoms | Leave a reply

A NEW Name for My Blog

Day by Day with a Movement Disorder Posted on July 23, 2008 by DBMay 30, 2016  

I have been thinking about changing the name of this blog ever since I was told I did not have Parkinson’s. We were also told that the Peripheral Neuropathy diagnosis was either originally a wrong one, or my nerves had healed. Peripheral nerves can regenerate up to a point, so that may be what happened. Particularly since hubby and I have been doing everything we could to learn about the best foods and best choices among alternative medicines, vitamins, and minerals to assure that I am getting the optimum benefit from everything I put in my mouth.

So, when I started having trouble with Blogger this week, it looked like the ideal time to find a new name for my blog. Who knows what diagnosis they will come up with sometime in the future, so I finally settled on Day by Day with a Movement Disorder. It’s general enough to cover whatever the docs decide to call whatever I have if they change their minds again, and it opens the door for discussing not only the disorder that I have, but other similar disorders.

I have just recently been asked to explain Essential Myoclonus in more detail and also received a request to post something about Dystonia. So I can see that this name may be a good one. I sure hope so. It was not easy erasing that title, after looking at it so many dismal and glorious days. And it will take awhile to change over all the links, etc., that will have to be changed, including a new banner. But it does not all have to be done in one day, that’s for sure!!

Posted in Quality of Life | Tagged diagnosis, diet, Dystonia, Essential Myoclonus, Movement Disorder, myoclonus, nutrition | Leave a reply

Choking Episode

Day by Day with a Movement Disorder Posted on February 6, 2008 by DBFebruary 6, 2008 8

I’m still feeling remarkably well, considering it’s been weeks now since I took a PD med. Reading a post on PLM makes me think it’s at least in part due to the 6-8 cups of green tea I’m drinking most days. Taking the Turmeric and eating a lot of the Super Foods, mostly raw, probably has a lot to do with it, too.

I’m doing my neck exercises each morning, using the cervical collar daily for about 15 minutes, and using the TENS when I need it, so I’m not hurting much, either.

But I did have another choking episode this morning. It’s a little hard to explain. I’ve done it several times lately with my own saliva, but this morning I had a mouth full of tea when a tiny amount just slipped down the wrong way. I wasn’t really swallowing, either. That’s what has been happening with saliva, too. I may not know how it’s happening, but I sure know the results! I end up coughing and gagging for several minutes each time, and it hurts. I’m going to have to try to figure out exactly what is happening, so I can decide the best way to prevent it.

Other than that, I’m feeling fine. I worked really hard on our collectibles and toy inventory yesterday, and pretty well wore myself out, trying to get it stored in a more logical and organized way. But it was good exercise, and I’m glad I was able to do it. I also added another pile to the lasagna compost. That is slowly building up an area of rich material about 100 square feet or so and over a foot high. I haven’t done any walking or Tai Chi for some time, and I do need to get back to it, now that I’m feeling better.

There was a good explanation of voice exercises on PLM, too, so I guess I’ll try to add those exercises to my daily routine, too.

And, to finish this post on a positive note, neither one of us have a single doctor’s appointment this whole month!!!

Posted in Uncategorized | Tagged appointments, cervical collar, choking, exercise, facial exercises, nutrition, Quality of Life, swallowing, TENS | 8 Replies

Tummy’s Back to Normal – PT Continues

Day by Day with a Movement Disorder Posted on January 16, 2008 by DBJanuary 16, 2008 6

It took a couple of days of very careful, limited eating, to get my tummy back to a normal situation, but I’m much better now. I’ve gone back to using the glycerin suppositories, and that’s helping the most, other than to avoid some questionable foods.

I talked to my PT Monday, and told her my neck was much better, and that I was surprised they had not had me doing any exercises. She said they wanted to get my muscles calmed down first. So, she is going to add some tomorrow. I told her I wanted to be stingy with my visits, in case I needed to come for something else later on in the year, so she has me on Monday and Thursday now, instead of 3 days a week. Of course, that frees up our Date Day, and that suits me just fine.

I’ve been extremely busy trying to help all the families who have been asking for help find lost lovies, ever since the msnbc.com article came out about our Plush Memories Lost Toy Search Service. We had well over a thousand hits that first day, and our traffic is still about double what it was before the article.

I’m fighting the poison ivy again, and I’m not sure which one of us is winning right now. I have found that I can take one Benadryl at night, and that stops the itching until in the afternoon. Then I take a non drowsy type that the pharmacist said I could use. It doesn’t work all that well, and by early evening I’m in misery. It gets in my blood stream or something, because I end up with rash and blisters in places that it should not be. Very delicate skin itches ten times more than arm or leg skin, I guarantee it!!!

I see the Dermatologist in another couple of weeks, so I will certainly ask him about anything I can do to dry it up quickly.

I think I know where the poison ivy is coming from. We’ve been bringing our outside cats in at night when the weather is below freezing. I am pretty sure I’m catching it from them. We had the brother and sister kitties neutered last week, and the little girl is somewhat frail, so we did not want to take any chances with the cold. The only other possibility is that the wood chips I’m using for the compost have the vines ground up in with it. Our back yard is just full of poison ivy, so that’s certainly possible.

I’m continuing to limit my reading of anything Parkinson’s related, but nothing has changed as far as my foot tremors and facial tics go. Oh, and I still haven’t started back using the TAP. I decided to get my neck calmed down, plus see if the mouth tic was related to maybe my tongue moving around on the inside of the mouthpiece in my sleep, and it getting to be a habit. Well, the neck is calming down nicely, but the mouth tic is still there. So I think I can stop blaming the TAP for that.

Since I’ve been taking the Benadryl at night, I’m sleeping quite well, even without the TAP. Funny, the Benadryl is working much better than all the fancy sleep meds ever did, and I’ve tried almost every prescription they make at one time or another.

Posted in Uncategorized | Tagged cats, elimination difficulties, glycerin suppositories, muscle spasms, nutrition, pain, Parkinson's, pharmacist, Physical Therapy, Quality of Life, stomach, symptoms, TAP, tics, tremors | 6 Replies

Less Computer Time = Getting other things done!

Day by Day with a Movement Disorder Posted on December 28, 2007 by DBJune 1, 2017 15

Well, I have pretty much stuck to my intention to stay away from places where PWP are describing their symptoms. I have visited the PLM site a few times, and even made a few comments, but I have been cautious about the type of posts I opened, to avoid reading about anything tremor related. I have not done any research on PD, either, other than to try to find a correlation between heavy steroid use with Parkinson’s. This was not for my benefit, but for one of my readers, who asked some interesting questions.

My neck continues to be very stiff and painful, but I can put up with it, knowing I will be getting help next week when I start Physical Therapy.

I am pretty much caught up with posting requests for help on the Plush Memories Lost Toys Search Service, and we are over the Christmas rush on eBay. I still need to put a new post on our Yesterday’s Memories blog, and there is always work to do on the BLOG VILLAGE TopList that I run.

So, I have been getting some much needed house clutter cleaning done, but there is plenty more that needs to be done. I would like to have the house straight for the New Year. At least it can start that way LOL.

We did have a great Christmas, seeing all of our family all at once, and enjoying being with our grandchildren. It looks like we actually managed to buy them some things they will enjoy, and that’s not easy to do when they hit those preteen and teen years. They all have birthdays right after Christmas, so we will be seeing them again real soon, too.

Hubby gave me a blender for Christmas, so now I can learn how to make Raw Foods Smoothies, something I have been wanting to try for some time now. Jackie, from The Vegan Diet, clued me into The Raw Food Coach, and since we eat a lot of raw foods, anyway, I have been learning as much as I can about what foods are the best for me. I have been doing a lot of research on the high anti-oxidant Super Foods, and we are gradually changing our diet to include lots of them daily.

We have had a lot of fun at our house of late with trying to get our very spoiled (neurotic) inside cat to accept our two outside cats as occasional inside visitors. They are too young to leave outside all night when it is freezing, so we bought a pet cage for them. They don’t mind being in it at all, which surprised us, but it sure makes going out of town easier. We keep our inside cat in the hall bathroom when we are gone, and now we can keep the outside cats protected, too. Our only problem is that Miss Queen Fluffy doesn’t like having them inside. There have been quite a few fights between Fluffy and Mr. Salt. Miss Pepper stays out of the rough stuff, as she has some kind of nerve damage to one of her hind legs. She is the main reason we decided to bring them in on cold nights and when we are out of town. Fluffy surprised us last night and behaved the whole time they were in the house. Maybe she’s finally adjusting to them, I hope.

One of my anonymous readers has given me a clue as to what my diagnosis might be, if it’s not Parkinson’s. So, I have started doing some research on Dystonia. Also, there was a new post today on PLM discussing Ataxia, and that sounds familiar, too. I already feel better, knowing that there are other conditions that my symptoms seem to fit. It makes me feel less like this is all going to turn out to be psychosomatic. I can’t bear the thought that my body has been going through all this due to an emotional problem. With other possibilities in sight, I am in a much better frame of mind than I was yesterday, thank goodness. So, Marion, the glass is looking more and more like it’s half full, again.

As always, I appreciate your prayers and concern, and love to hear from you, even if it’s just to say HI!

Posted in Uncategorized | Tagged Ataxia, cats, Christmas, diagnosis, difficulty walking, Dystonia, family, hope, house cleaning, muscle spasms, nutrition, pain, Parkinson's, PatientsLikeMe, psychosomatic, symptoms, tremors | 15 Replies

Decided Against It

Day by Day with a Movement Disorder Posted on May 28, 2007 by DBMay 28, 2007 6

I do appreciate the feedback you gave me on the decision about joining the St. Vincent’s facility, but we finally decided not to do it at this time. Time was, after all, the deciding factor. It was going to eat up about 3 hours each day I went, and to get any good out of it, I would have to have gone at least 2 days a week, if not 3. I think I can accomplish just about as much with home exercise equipment and our time at the walking track, which is about 5 minutes from home. Of course, in this day and time, we have to take gas prices into account too, and we do live a long way from any of these kinds of sports facilities, with some really bad traffic to contend with both ways.

I continue to accomplish more and more when I exercise in the mornings, but I’m paying for it each night with a lot of sore muscles. DH fusses at me for over doing it, but it doesn’t ever seem like I am at the time. It’s only later in the day that I realize I’ve over taxed my muscles. I think some of this pain I experience is coming from the Peripheral Neuropathy, particularly since I went off the Cymbalta. My Neurologist wasn’t the least concerned about me taking it in conjunction with the Zelepar, even though the Pharmacist had warned me about the combination. So, I may yet go back on it. But for now, I’m still adjusting to adding the Requip back to my meds, so I don’t want to add 2 new drugs at the same time.

The Requip is beginning to upset my stomach, just the way it did last time. I’m having lots of heartburn and belching a lot. Nothing else has changed, so it has to be the culprit. I’ll put up with it if it doesn’t get much worse than this, but I’m still planning to ask for the Neupro patch when I go back to Dr. S in June.

Just to document where I stand physically:

I can now sit down and stand up from a straight chair without using my arms, at least in the morning. I can’t by the evening, though. Sofas and soft chairs I haven’t mastered yet. I can walk over 3000 steps a day on the pedometer most days. I’ve put the handicap toilet seat away for now, as I can deal with the standard one, as long as I have the sink cabinet to hold onto. I’m still using the cane when we go to yard sales and such, where the terrain is unknown, and I still don’t go up and down flights of stairs if I can avoid it. Crouching down to get things in and out of my kitchen cabinets is difficult, so I usually depend on DH to do that for me. I lose my balance too easily, particularly with something in my hands. My core muscles, those of the trunk, are definitely getting stronger as I continue to exercise, as I can now lift my behind when I do what’s called the Bridge. It’s a simple exercise, really. All you do is lie on your back, feet on the floor, with your knees raised, and try to lift your bottom. Until recently, I couldn’t lift more than a half inch or so, but now I’m coming completely off the floor.

I’m doing the Tai Chi short form almost every day now, and I’m getting pretty good at it again. My balance continues to improve.

The biggest problem I am having right now, I suppose, is the insomnia. As soon as I started back on the Requip, it started back again. I haven’t been able to sleep past 3:00 AM for some time now. I get a lot done on the computer, but I really need the sleep! I’ve tried napping later in the day, but that doesn’t work unless I’m in the car. Then I can doze off almost instantly ;).

So, I am progressing, but I have lots of room for improvement. Eating healthy foods and exercising are just as much medicines for me as anything that comes in a bottle!

Posted in Uncategorized | Tagged balance, cane, drug interaction, exercise, gas, GERD, insomnia, nausea, nutrition, peripheral neuropathy, Physical Therapy, Quality of Life, stomach, Tai Chi | 6 Replies

Daughter’s Gastric Bypass Horror Story Continues

Day by Day with a Movement Disorder Posted on May 19, 2007 by DBMay 19, 2007 4

Our older DD had Gastric Bypass surgery over 2 years ago now, and her health problems from it continue to show up. All last year she battled with Peripheral Neuropathy so bad that she was almost not able to walk at all. She was in and out of the hospital something like 50 or 60 days last year, while they tried to bring her nutrition level up to a point that her body could recover. She thought she was over all that, even though it meant she had to gain back a lot of the weight she had lost.

During that same time period, she was having constant problems with crumbling teeth and abscesses. Now, the dentist tells her that the real problem is that the jaw bone is deteriorating, so the roots of the teeth are not stable. He is planning on pulling them all and putting her in dentures.

And, now, on top of that news she received this week, her eye exam showed serious problems, which they thought at the time was weak muscles from the Neuropathy. So, she went to an ophthalmologist, who says she has holes in her retina. She now has an appointment with a retina specialist.

To say the least, she is overwhelmed. We spent a long time on the phone last night with her sobbing away, and understandably so. When she decided to have the bypass surgery, we did all kinds of research, and at the time it seemed like the best way to improve her quality of life. Obviously, that was not the case.

I realize there are people out there who are so morbidly obese that they are existing, not living, in their present condition. DD’s health was such that she was in serious danger. But now, it’s hard to think that she (we) made the right decision.
If you know anyone who is considering this surgery, please let them know that there are people who have major regrets about it.

Posted in Uncategorized | Tagged Gastric Bypass Surgery, nutrition, peripheral neuropathy, Quality of Life, retina, weight loss | 4 Replies

“I Want to Go Home Now”

Day by Day with a Movement Disorder Posted on February 27, 2007 by DBFebruary 27, 2007 16

The human mind is a fragile thing when age or the onslaught of disease takes its toll. Since we’ve already been Care Givers for my mother and DH’s father, who both had Alzheimer’s, we’ve heard many, many pitiful pleas and angry demands for us to take them “home.” My Mama was in the hospital, with me there 24 hours a day for 35 days, recovering from a broken hip and going through rehab. She never could get straight in her head where she was, but I expected things to be better once I got her back into her own home.

I was very disappointed to find that she didn’t know she was in her own home, when we did get her back there. Each day involved question after question about when we would be leaving, why wasn’t I taking her home, who were these strange people, etc. No amount of reassuring her that she was home, and that the people were her family, would appease her. At one point she was in a panic, because she was worried about her dog being alone at the house, with no one to care for him. What could I say? She was remembering the house I had grown up in, and a dog I had as a little girl. So I had to play along that Cindy was being well taken care of, and for her not to worry.

We moved Pop out of his home, and moved him in with us. So his constant requests to go home at least made sense!

But I was not prepared to have these same conversations with my Daddy! He’s old – VERY old – but has been more or less lucid most of the time, even after he fell on Thanksgiving weekend. Well, he’s been lucid about everything EXCEPT that he was still in his own home! He’s forever asking me for his cap and jacket, so we can head home.

I’ve come to the conclusion that what they all mean when they ask to go home is to go back to a time when they were in control. A time in their lives when they had privacy. A time when someone else did not pick out the clothes they would wear, or decide what they would have for lunch, or when it was bedtime. A time in their lives when they could still drive, take a walk around the block, or, in Daddy’s case, cut the grass.

As Care Givers, we can do our best to keep them safe and comfortable physically, and we can even play along with their delusions at times, but the one thing we cannot do for them is to give them back that control over their own lives that they so long for.

My Daddy will be 102 in less than two weeks. His body becomes noticeably more frail each day, his speech has become all but nonexistent over the last few days, and we can get very little nutrition or fluids down him. It frustrates him to try to talk when he can’t get the words out. He can no longer help us when we turn him in the bed. His days and nights are spent for the most part sleeping. Sure he wants to go home. Who wouldn’t want to return to a better time??

I both rejoice and am deeply grieved that he soon will be truly HOME. Seeing my dear Mama again. Walking with a full strong stride. Enjoying seeing all the wonderful sights that his blind eyes have been missing for many, many years. Hearing the angelic choir in all its glory. And I betcha he’ll be on a riding lawn mower keeping the yard cut!!!

I’m already grieving his loss. Just writing these last words has the tears flowing. But he’s lived a long life, with much to be proud of and to enjoy. It’s time for him to go home.

Posted in Uncategorized | Tagged care giving, confusion, death, family, grieving, hallucinations, Heaven, Love, nutrition, Quality of Life | 16 Replies

Downs and Ups with Daddy

Day by Day with a Movement Disorder Posted on February 10, 2007 by DBFebruary 10, 2007 6

A lot has been going on with Daddy this week that has kept us both pretty busy. I called the Podiatrist’s office Monday about his heel, and they said he would come by Wednesday evening. The regular Hospice nurse came and took a look at it and changed the bandages, telling me that the key thing was to keep the blister from breaking open. She promised that we would get the rippling kind of mattress this week, too, which is supposed to help with pressure sores, such as those on his bottom and heel.

Monday night was the worst I’ve had with Daddy. His usual bedtime is 6:30, but he wasn’t sleepy then. That’s not too surprising, since he sleeps so much during the day, but part of his night medicine is a Tylenol PM, so I can’t let him stay up too late after taking that, or it would be dangerous to try to transfer him into bed. So, I put him to bed a little after 7:00PM. He spent the next 5 hours talking wildly about things like when was he going home, who were all those people, where was his bed, where was I going to sleep, and on and on. He would call me to the back every 15 or 20 minutes, and nothing I told him appeased him. When I told him he was already in bed, he would disagree, telling me he was in the car, and wanted to go home. About midnight he finally went to sleep, but the whole craziness started over again off and on every few hours until it was time to get up.

Not surprisingly, he was wobbly all day Tuesday, and I was worn out, too. So, Tuesday, Wednesday, and Thursday night I gave him 2 Tylenol PM! He slept soundly, and his walking was much better during the day. His appetite has even shown signs of improving a little.

His Podiatrist ended up coming out yesterday evening. He immediately set to cutting the whole top of the blister off!! Mind you, Hospice had told me to do everything I could to keep the blister intact. I was SO glad I had called him! He showed me a dark place in the tissue that was already beginning to develop into a deep decubitus ulcer, and said it would not have healed if it were not fixed so it could drain. He also told me to keep it open to the air as much as I could, instead of keeping it all wrapped up.

I think I’ve finally gotten my point across to the Hospice people that I expect preventative care as much as possible. So the rippling air mattress came yesterday!! It has many crosswise sections of air filled tubes that slightly inflate and deflate back and forth from the top to the bottom of the bed and back. For getting in and out of the bed, it can also be set to inflate completely for a firm surface. I think this will actually help, and may even keep him from getting any more sore places on his bottom.

He still has times when he doesn’t know whose house he’s in, but the hallucinations are not as disturbing to him as they were. His strength is returning, and with the improved appetite, he feels more like walking. So, a week that started as the worst yet has prospects of ending as one of the better ones. I’m keeping my fingers crossed!!

Posted in Uncategorized | Tagged care giving, decubitus ulcer, difficulty walking, hallucinations, heel blister, Hospice, nutrition, Podiatrist, pressure sore, Quality of Life, Tylenol PM | 6 Replies

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  • The Wrist Drop of Saturday Night

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