I wonder if other MSers wonder what the future will bring for them. It's been on my mind lately and more so now that I caught this story from Facebook that showed MS in mice being cured at McGill University. Here's the link to copy and paste if you'd like to read more:
http://www.physorg.com/news169211700.html
I also saw on Facebook today a comment by another MS blogger about seeing an older MSer using a walker and being helped to the bathroom by her daughter. She hoped for a cure so she wouldn't be in the same situation. I responded that I would like a cure too because I don't have any kids or a spouse to help me if I was in the same situation.
I sometimes wonder about life with MS five, ten, twenty years from now. I know MS brings with it so many surprises. That's perhaps the most difficult part of the disease when you're in remission, the unknowing of what will happen next. Will I wake up unable to move part of my body? Will I wake up with vision issues, unable to see from one eye? Will I wake up with such weakness or numbness that it affects how I move?
They say people don't get MS until they get MS. That may be partly true in some sense. MS is so different for each person who has it that even if we all blogged about it no one would be able to keep up. Heck, I can't even keep up with all the blogs I have listed on my page.
But I worry. Will I sleep through the night without leg cramps? Will I wake up tomorrow with my numbness back? Will I make it through the school year? Will I remember the words I want when I am speaking?
What happens to me when a big relapse comes? I have so many stairs to get in and outside which makes even things like getting the mail or getting groceries a marathon. I have had to use a cane in the past when I have had severe leg weakness. I have had times where I couldn't drive because of leg weakness.
Who will be there to help me? I have no children I can put to work on small chores and I have no spouse. I live alone. I sometimes fear that I will need help but I won't have anyone to help me with that.
Sometimes living with MS is a scary thing. I can't let that run my life or ruin it but it is something I think about.
Thursday, August 13, 2009
Wednesday, August 12, 2009
Adding to my home pharmacy
Today was a day for drinks with the girls but I didn't go. Instead I made the decision to finally call the neurologist's cute initially guy and ask him for another prescription. I have mentioned before in other posts that he offered me Ditropan for urinary urgency at my last appointment and I said no.
Then I almost had some accidents this past week and I thought about my almost accident on my last day of work. (And that was a day when I could use the bathroom whenever I wanted!) I decided to give this stuff a try or else I was never going to be able to drink at a normal level ever again. I don't drink much now and even less when school is in session.
So I put a call in and waited for him to call back. I told C.I.G. (cute initially guy) what I wanted and he promised to call in the script for me. He did and I just picked it up a little while ago with some A&W diet root beer. (I have been jonesing for soda in the worst way lately and this way I could have soda and root beer floats!)
I'll start the med tonight with the rest of my pharmocopia, which is a word I think I may have just made up. Then again, it could be a real word just spelled horribly wrong.
Side effects include dizziness (what's new?), weakness (again, what's new?), dry mouth (so I drink more) and possible vision problems. Hopefully the dry mouth won't be working against my urgency at the same time. Drinking more = needing to go more, right?
I'll keep you in touch with how it all works.
Then I almost had some accidents this past week and I thought about my almost accident on my last day of work. (And that was a day when I could use the bathroom whenever I wanted!) I decided to give this stuff a try or else I was never going to be able to drink at a normal level ever again. I don't drink much now and even less when school is in session.
So I put a call in and waited for him to call back. I told C.I.G. (cute initially guy) what I wanted and he promised to call in the script for me. He did and I just picked it up a little while ago with some A&W diet root beer. (I have been jonesing for soda in the worst way lately and this way I could have soda and root beer floats!)
I'll start the med tonight with the rest of my pharmocopia, which is a word I think I may have just made up. Then again, it could be a real word just spelled horribly wrong.
Side effects include dizziness (what's new?), weakness (again, what's new?), dry mouth (so I drink more) and possible vision problems. Hopefully the dry mouth won't be working against my urgency at the same time. Drinking more = needing to go more, right?
I'll keep you in touch with how it all works.
Sunday, August 9, 2009
Mishmash ...
Finding Nemo Alert**
I missed the last 15 minutes or so of the movie and I need to know how it ends. I mean I can guess how it ends but I need to read about it. So can anyone help me? Lanette, are you out there?
I think I left off with everyone in Sydney and the pelican gently putting Marlin and Dori(e?) back in the water at the dock. Then Marlin was telling Dori(e) to leave him alone and he was starting to swim away. I think they had tried to get to Nemo but it didn't work out.
Brother update**
I went out to lunch with my brother and my parents this afternoon. We went to the Chinese buffet and we were there almost two hours between eating and mostly talking. My sibling brought his digital camera and I looked at 600 pics of his month-long trip throughout Europe. He also brought me some paper money from different places to look at and some post cards.
It was good to hug him because the last time I saw him was in the early part of 2009 when my dad was really sick and going through three open-heart surgeries. My brother gave up his leave to Australia and was flown home from Iraq. At the time my brother and sister were both in Iraq and both had come home because my dad was so sick.
This time when he was home I knew he didn't have to go back to Iraq so that was a real relief for me. I know he will go back to Germany where he is safe for now. His unit has been home (in Germany) for about three months or so. One of those months was his European tour. Since his unit has come home there have been three suicides amongst his fellow soldiers. That gives one food for thought. Sometimes coming home is safer but not easier for soldiers.
Potential trip**
My brother and my sister are planning to go to Italy for Christmas. My sister is stationed in Kentucky now that she is done with her tour in Iraq. My parents are supposed to be going to Las Vegas for the holiday. My brother mentioned that I could come with the siblings to Italy. At first I said no because of the cost but now I am thinking about it.
I have wanted to go to Italy for a few years now, mostly due to Frances Mayes and her books Under the Tuscan Sun and Bella Tuscany. There are also some great cooking shows on PBS that focus on real Italian food that make me salivate when I see them on the weekends.
Anyway, back to the topic now... I am really thinking this whole thing over. My brother doesn't plan to come back to the US again any time soon. His next tour will be in Afghanistan and he already has a potential deployment date for that tour. My sister will also most likely be deployed again which means who knows when we'll be able to spend another holiday together. So this might be our only chance to enjoy Christmas together in Italy for years to come.
Anyone want to send in donations for my potential Italian holiday?
I missed the last 15 minutes or so of the movie and I need to know how it ends. I mean I can guess how it ends but I need to read about it. So can anyone help me? Lanette, are you out there?
I think I left off with everyone in Sydney and the pelican gently putting Marlin and Dori(e?) back in the water at the dock. Then Marlin was telling Dori(e) to leave him alone and he was starting to swim away. I think they had tried to get to Nemo but it didn't work out.
Brother update**
I went out to lunch with my brother and my parents this afternoon. We went to the Chinese buffet and we were there almost two hours between eating and mostly talking. My sibling brought his digital camera and I looked at 600 pics of his month-long trip throughout Europe. He also brought me some paper money from different places to look at and some post cards.
It was good to hug him because the last time I saw him was in the early part of 2009 when my dad was really sick and going through three open-heart surgeries. My brother gave up his leave to Australia and was flown home from Iraq. At the time my brother and sister were both in Iraq and both had come home because my dad was so sick.
This time when he was home I knew he didn't have to go back to Iraq so that was a real relief for me. I know he will go back to Germany where he is safe for now. His unit has been home (in Germany) for about three months or so. One of those months was his European tour. Since his unit has come home there have been three suicides amongst his fellow soldiers. That gives one food for thought. Sometimes coming home is safer but not easier for soldiers.
Potential trip**
My brother and my sister are planning to go to Italy for Christmas. My sister is stationed in Kentucky now that she is done with her tour in Iraq. My parents are supposed to be going to Las Vegas for the holiday. My brother mentioned that I could come with the siblings to Italy. At first I said no because of the cost but now I am thinking about it.
I have wanted to go to Italy for a few years now, mostly due to Frances Mayes and her books Under the Tuscan Sun and Bella Tuscany. There are also some great cooking shows on PBS that focus on real Italian food that make me salivate when I see them on the weekends.
Anyway, back to the topic now... I am really thinking this whole thing over. My brother doesn't plan to come back to the US again any time soon. His next tour will be in Afghanistan and he already has a potential deployment date for that tour. My sister will also most likely be deployed again which means who knows when we'll be able to spend another holiday together. So this might be our only chance to enjoy Christmas together in Italy for years to come.
Anyone want to send in donations for my potential Italian holiday?
Saturday, August 8, 2009
Finding Nemo and my brother!
I have never watched "Finding Nemo" before and it's on TV tonight. I'm watching and enjoying it. I'm not generally one for kids' movies but I have been interested in this one because Ellen DeGeneres does a voice in it. I think she's a hoot. I catch her television show a lot too. Can't wait for her new episodes to air in the fall.
As for my brother, he's been in Germany since he came back from Iraq. He just made a surprise visit home tonight. My parents didn't know he was coming and neither did I. My sister (she's also in the Army in Kentucky since her tour in Iraq) knew he was coming home but never mentioned it. I guess no one told me because they thought I'd tell but let's face it, with my MS, I am more than likely to forget. Half the time I forget what people first tell me because I just don't retain it. It's that whole pause-delay thing again but it happens with plain English too.
Another random tidbit... I went to the library yesterday and picked up the new Diane Mott Davidson caterer mystery called "Fatally Flaky". I love to read her novels and this is her brand new title that came out last month. I was reading something else but switched to her book this afternoon while I lolled around in bed. It's so good.
I also have a major desire for cake. I want cake with some ice cream. It's more than a month away until my birthday but I want that cake now. CAKE. I'm like Cookie Monster gone awry from cookies to cake. Me want cakey!
That's all the randomness I can muster for today.
As for my brother, he's been in Germany since he came back from Iraq. He just made a surprise visit home tonight. My parents didn't know he was coming and neither did I. My sister (she's also in the Army in Kentucky since her tour in Iraq) knew he was coming home but never mentioned it. I guess no one told me because they thought I'd tell but let's face it, with my MS, I am more than likely to forget. Half the time I forget what people first tell me because I just don't retain it. It's that whole pause-delay thing again but it happens with plain English too.
Another random tidbit... I went to the library yesterday and picked up the new Diane Mott Davidson caterer mystery called "Fatally Flaky". I love to read her novels and this is her brand new title that came out last month. I was reading something else but switched to her book this afternoon while I lolled around in bed. It's so good.
I also have a major desire for cake. I want cake with some ice cream. It's more than a month away until my birthday but I want that cake now. CAKE. I'm like Cookie Monster gone awry from cookies to cake. Me want cakey!
That's all the randomness I can muster for today.
Friday, August 7, 2009
Fresh smell (and no it's not me)
Okay, I am going to admit my major dorkiness for the day. I have changed the bedding on my queen sized bed and I am loving it. I love, love, love the smell of fresh sheets, pillow cases and a comforter.
I inhale all the smells of the laundry sheets and detergent and smile like a giant goofball. I sprawl all over my queen-size bed and just smell it. I hold the pillows up and smell them. Then I turn on my back and feel the fresh bedding beneath me.
The only thing better would be if I had a clothesline to dry my bedding on. Alas, I live in an apartment and there's no way that I can wrangle that to fruition.
I also will tell you something else. I sleep on top of my comforter with a little blanket on me. I have a Sesame Street blanket from when I was in college that I use. Why not sleep under the comforter on the sheets? It's just the way I roll. I've been doing this since about fifth grade.
Usually my wonder cat, Franklin, hears the whole shenanigans going on with the changing of the bedding and he comes rushing up the stairs. He likes to be in the midst of it all. He gets in the middle and is on the sheet as I am trying to fit it in the corners but this time he missed the whole thing because he was sleeping on the sun porch. Wonder of wonders that I could make the bed all on my own.
My name is Weeble and I love the way my bed smells right now. Yep, that makes me a dork but I'll take it.
I inhale all the smells of the laundry sheets and detergent and smile like a giant goofball. I sprawl all over my queen-size bed and just smell it. I hold the pillows up and smell them. Then I turn on my back and feel the fresh bedding beneath me.
The only thing better would be if I had a clothesline to dry my bedding on. Alas, I live in an apartment and there's no way that I can wrangle that to fruition.
I also will tell you something else. I sleep on top of my comforter with a little blanket on me. I have a Sesame Street blanket from when I was in college that I use. Why not sleep under the comforter on the sheets? It's just the way I roll. I've been doing this since about fifth grade.
Usually my wonder cat, Franklin, hears the whole shenanigans going on with the changing of the bedding and he comes rushing up the stairs. He likes to be in the midst of it all. He gets in the middle and is on the sheet as I am trying to fit it in the corners but this time he missed the whole thing because he was sleeping on the sun porch. Wonder of wonders that I could make the bed all on my own.
My name is Weeble and I love the way my bed smells right now. Yep, that makes me a dork but I'll take it.
Thursday, August 6, 2009
Good news
Good news: The thigh numbness is gone. I am chalking it up to an MS fluke.
In other MS news, I am going to call cute initially guy and ask for a new med to be added in to the mix. I had another almost near accident today and thinking about another near accident last week at work makes me reevaluate things. He suggested adding in Ditropan the other day to help with bladder urgency.
I think if I start it now then I'll get any potential side effects out of the way before school starts. By the way, did I mention that our school building is closed for the entire month of August? That means I can only get my new room in September to get the room set up. Which also means that I just cannot worry about the whole school thing right now so I am not.
Other than that there's nothing else new. My legs and back are still giving me some impish problems but not anything bad. I'm just watching and waiting. Most of my waiting is spent in bed asleep or reading. I do love me a good nap and a good book.
Later taters! (Also stolen from Mike!)
In other MS news, I am going to call cute initially guy and ask for a new med to be added in to the mix. I had another almost near accident today and thinking about another near accident last week at work makes me reevaluate things. He suggested adding in Ditropan the other day to help with bladder urgency.
I think if I start it now then I'll get any potential side effects out of the way before school starts. By the way, did I mention that our school building is closed for the entire month of August? That means I can only get my new room in September to get the room set up. Which also means that I just cannot worry about the whole school thing right now so I am not.
Other than that there's nothing else new. My legs and back are still giving me some impish problems but not anything bad. I'm just watching and waiting. Most of my waiting is spent in bed asleep or reading. I do love me a good nap and a good book.
Later taters! (Also stolen from Mike!)
Wednesday, August 5, 2009
A bit on my thigh
No, I won't be showing it to you but my right thigh is numb. I woke up this morning with this new symptom. Could be the start of a new flare and that just wouldn't be fair, especially after I saw initialy guy yesterday.
I now return you to your regularly scheduled internet. (Borrowed that from you, Mike!)
I now return you to your regularly scheduled internet. (Borrowed that from you, Mike!)
Tuesday, August 4, 2009
Neuro appointment
A quickie:
Drove out to see the neuro today, err rather his N.P. or his P.A or something else with initials. I get the funny guy who speaks good English; that was my choice when I first went there. The other doctor is good but when he speaks my hearing is on a pause-delay system and by the time I understood what he's said, he's on to talking about something new.
So I go to see funny guy and I don't really have much to report. I talked about the urgency issues for #1 and #2. He suggested Ditropan (sp?) for issues with number one but I told him I'd rather hold off on more meds for now.
He suggested I actually take the fish oil that I store in the freezer and that will help me with my leg cramp issues. The more I do physically, the more I cramp.
I told him I noticed that I walk slower but that's just the nature of this beast. I can walk, heck I could even do something akin to a run if absolutely needed (it just wouldn't be pretty or feel good).
We shot the chit for a while as we usually do and then he brought up the oral meds coming out within the next year or two. He told me flat out that they would not be suggesting or allowing any of their patients to start on the oral meds right away. He said that he is hearing their efficacy rate to be around 45%, which he says is lower than anything out on the market already. They are coming with some hefty possible side effects like heart problems and lymphoma. Then again Tysabri, my current med, comes with the possible side effect of PML and death.
So I won't be switching from Tysabri any time soon. I will watch what happens with the oral meds for the first few years and then see what happens. Maybe down the road I won't need to take time off each month for an infusion. Maybe I'll just pop a(nother) pill and that will be all I need to fight off MS, plus all the symptom meds.
Either way, in the meantime I'll still be seeing the kinda cute initialy guy. I have another appointment in six months and we're not doing any new MRIs unless something comes up between now and then.
Sounds like I am doing okay for being on summer vacation, folks. Now if we can just make it through setting up my new room at school in early September and make it through the whole school year we'll be doing swell. It would be the bees' knees, baby.
Drove out to see the neuro today, err rather his N.P. or his P.A or something else with initials. I get the funny guy who speaks good English; that was my choice when I first went there. The other doctor is good but when he speaks my hearing is on a pause-delay system and by the time I understood what he's said, he's on to talking about something new.
So I go to see funny guy and I don't really have much to report. I talked about the urgency issues for #1 and #2. He suggested Ditropan (sp?) for issues with number one but I told him I'd rather hold off on more meds for now.
He suggested I actually take the fish oil that I store in the freezer and that will help me with my leg cramp issues. The more I do physically, the more I cramp.
I told him I noticed that I walk slower but that's just the nature of this beast. I can walk, heck I could even do something akin to a run if absolutely needed (it just wouldn't be pretty or feel good).
We shot the chit for a while as we usually do and then he brought up the oral meds coming out within the next year or two. He told me flat out that they would not be suggesting or allowing any of their patients to start on the oral meds right away. He said that he is hearing their efficacy rate to be around 45%, which he says is lower than anything out on the market already. They are coming with some hefty possible side effects like heart problems and lymphoma. Then again Tysabri, my current med, comes with the possible side effect of PML and death.
So I won't be switching from Tysabri any time soon. I will watch what happens with the oral meds for the first few years and then see what happens. Maybe down the road I won't need to take time off each month for an infusion. Maybe I'll just pop a(nother) pill and that will be all I need to fight off MS, plus all the symptom meds.
Either way, in the meantime I'll still be seeing the kinda cute initialy guy. I have another appointment in six months and we're not doing any new MRIs unless something comes up between now and then.
Sounds like I am doing okay for being on summer vacation, folks. Now if we can just make it through setting up my new room at school in early September and make it through the whole school year we'll be doing swell. It would be the bees' knees, baby.
Sunday, August 2, 2009
Today
To what we call today, that is what I've decided to write about. What did I do today? First off, I woke up around three a.m. for the bathroom and was up for a while. Don't ask me why but I decided to eat breakfast then. Yes, at three a.m. And what did I eat? A bowl of my freshly made veggie beef soup.
Then back to sleep after being up, eating, and reading for a bit. I slept until almost 8:30 a.m. I was up to feed the cat, go to the bathroom, and then back to bed to read. I fell asleep again and woke up around 11 which was just in time for my alarm. Well, I had twenty minutes to spare with the alarm so I was doing well.
Shower and coiffing and then some online time before I left to go to my parents' house for lunch. I managed to cut myself in the shower while shaving my legs in the same place I always cut myself. This led to major bloodletting and a nasty looking cut on the back of my right ankle.
I drove to the grocery store to pick up some already barbecued chicken and fruit for the luncheon with my parents. I arrived at their house on time. I could notice that my left arm was weaker than my right as I was helping out by shucking the corn. I could also feel a visible weakness in my back and a slower walking rhythm. I was still tired after we ate and I realized that I had forgotten to take my morning meds cocktail. I also don't take Provigil during the summer so I sleep a lot. I wanted to lie down over there but I didn't have my C-PAP so there wasn't an afternoon nap.
I had a nice visit and I was hoping for a phone call from my brother in Germany as he usually calls my parents then. No dice today though.
I drove back home and read and tried to sleep. It was too late for a nap according to my body clock so I am now looking forward to an early bedtime. I go to see the neurologist on Tuesday and I know he will not be happy with my weight and lack of concerted exercise. I imagine we'll talk about finishing the school year out for the last two months and my plan for the new year starting in September (the day after Labor Day is when we officially start working). I'll mention my tiredness and my walking which is soooooooo slow compared to everyone else, and my bowel and bladder urgency. When I have to go, I HAVE to go right then. Sometimes it just comes upon me likethisfast and I have to go within seconds or I will have an accident.
Yes, I have had accidents. That's embarrassing to put out there but it's true. There have also been times when I have been at work or out and have almost had accidents, too. My shrink has suggested using "products" to deal with this but for now I can usually get to a bathroom in time when the feeling comes on me. I just have to monitor how much I eat or drink at certain times. You'd think I'd lose weight with this kind of program. Plus, being 38 and dragging my cart around at Wal-Mart with a giant bag of "products" in it is not cool when you run into your 10 and 11 year old students.
So that's my life today, totally in the present. Could be better, could be a lot worse.
Then back to sleep after being up, eating, and reading for a bit. I slept until almost 8:30 a.m. I was up to feed the cat, go to the bathroom, and then back to bed to read. I fell asleep again and woke up around 11 which was just in time for my alarm. Well, I had twenty minutes to spare with the alarm so I was doing well.
Shower and coiffing and then some online time before I left to go to my parents' house for lunch. I managed to cut myself in the shower while shaving my legs in the same place I always cut myself. This led to major bloodletting and a nasty looking cut on the back of my right ankle.
I drove to the grocery store to pick up some already barbecued chicken and fruit for the luncheon with my parents. I arrived at their house on time. I could notice that my left arm was weaker than my right as I was helping out by shucking the corn. I could also feel a visible weakness in my back and a slower walking rhythm. I was still tired after we ate and I realized that I had forgotten to take my morning meds cocktail. I also don't take Provigil during the summer so I sleep a lot. I wanted to lie down over there but I didn't have my C-PAP so there wasn't an afternoon nap.
I had a nice visit and I was hoping for a phone call from my brother in Germany as he usually calls my parents then. No dice today though.
I drove back home and read and tried to sleep. It was too late for a nap according to my body clock so I am now looking forward to an early bedtime. I go to see the neurologist on Tuesday and I know he will not be happy with my weight and lack of concerted exercise. I imagine we'll talk about finishing the school year out for the last two months and my plan for the new year starting in September (the day after Labor Day is when we officially start working). I'll mention my tiredness and my walking which is soooooooo slow compared to everyone else, and my bowel and bladder urgency. When I have to go, I HAVE to go right then. Sometimes it just comes upon me likethisfast and I have to go within seconds or I will have an accident.
Yes, I have had accidents. That's embarrassing to put out there but it's true. There have also been times when I have been at work or out and have almost had accidents, too. My shrink has suggested using "products" to deal with this but for now I can usually get to a bathroom in time when the feeling comes on me. I just have to monitor how much I eat or drink at certain times. You'd think I'd lose weight with this kind of program. Plus, being 38 and dragging my cart around at Wal-Mart with a giant bag of "products" in it is not cool when you run into your 10 and 11 year old students.
So that's my life today, totally in the present. Could be better, could be a lot worse.
Saturday, August 1, 2009
And now...
Yesterday was all about the beginning of my life with multiple sclerosis. Today's writing will be about my life with MS now. I am doing much better with it. I've been diagnosed since December 2005, seriously ill with it since December 2004. Looking back I can see signs of it before even then. I was always seriously fatigued, even going back as far as high school when I should have been full of vim and vigor.
There's lots of little things that connected the dots to the diagnosis of 2005. Severe pain and weakness in my arms thought to be carpal tunnel syndrome, falling down when I tried to maneuver a curb at the mall with my friend BJM. Cramps and twitches during and after my running.
Then came three days in the hospital and a final diagnosis.
Since then I do not spend all my extra time on MSworld.org searching through posts. As a matter of fact, I stopped by the other day for the first time in about 4 months! Now I do spend time reading some of my favorite blogs written by fellow MSers. And there are lots of blogs out there, trust me.
My family recognizes the MS now. As a matter of fact, my mom wants me to move into an old folk's home so I can live without stairs. There are lots of stairs where I live now. (I'm not moving in yet!)
I now take a medicine called Tysabri which is a once every four weeks IV regimen. I call it my tune up. I have no site reactions or post injection reactions like I did with the shots that I started with a few years ago.
I'd like to write more on this but I am feeling tired so I'll end this for now. More to come, I promise.
There's lots of little things that connected the dots to the diagnosis of 2005. Severe pain and weakness in my arms thought to be carpal tunnel syndrome, falling down when I tried to maneuver a curb at the mall with my friend BJM. Cramps and twitches during and after my running.
Then came three days in the hospital and a final diagnosis.
Since then I do not spend all my extra time on MSworld.org searching through posts. As a matter of fact, I stopped by the other day for the first time in about 4 months! Now I do spend time reading some of my favorite blogs written by fellow MSers. And there are lots of blogs out there, trust me.
My family recognizes the MS now. As a matter of fact, my mom wants me to move into an old folk's home so I can live without stairs. There are lots of stairs where I live now. (I'm not moving in yet!)
I now take a medicine called Tysabri which is a once every four weeks IV regimen. I call it my tune up. I have no site reactions or post injection reactions like I did with the shots that I started with a few years ago.
I'd like to write more on this but I am feeling tired so I'll end this for now. More to come, I promise.
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