My daughter and I decided that a new school year in a new school building should also come with a new style of school lunch.
I found her a nice bento box with a bottom that freezes so it keeps the contents nice and cool for the day. I've been thinking of neat things to include in the box but nothing too cutesy for my middle school tomboy. I won't be cutting apples into the shape of stars or anything like that.
Going through our stash of healthy snacks tonight I realized I have some great starters. We have a dried fruit medley of cranberries, blueberries and cherries, flavored rice crackers, whole wheat and blueberry newton type snack bars, dried plantains, ranch flavored sunflower seeds, sundried tomato flavored almonds and our other more standard house fare of seasonal fresh fruits and veggies (right now we have grapes, apples, nectarines, kiwi and strawberries as well as carrots, mini colored peppers and celery). I also make my own hummus, always have cheese sticks or slices or some kind, peanut butter is a favorite here along with pretzels.
Having never done the bento "thing" before, it should be a fun way to explore new things and there's built-in portion control. I will have to pick and choose just the right things for my no-at-all-picky eater that still has a list of things she doesn't like (including the mini peppers and celery I mentioned earlier) and they also have to be braces friendly.
I hope I'm creative enough to make it work without making it boring. I might have to jump deeper into the produce department, get a grip on some lesser known fruits and veggies though we are pretty well acquainted with that department since taking on the task of vegetarian dinners in June of 2012.
Wish us luck with our new endeavor!
Wednesday, August 28, 2013
Sunday, August 25, 2013
The Birdcage "Bruise".
MS never ceases to perplex. This morning I woke up feeling like I had a bruise on my forehead. I couldn't remember doing anything that would cause it to feel that way. After waking up, I realized that it was like wearing a birdcage hat, a sort of skewed bruising feeling going from the top of my head and down into my ear on the right side.
It hurt to wash my hair. It hurt more to brush my hair. The rest of the day was spent trying to keep from pushing my hair out of my face because I didn't dare put my headband on. I'm trying to pretend it doesn't exist but, in reality, it feels like a dull ache - sort of.
I might be concerned if it wasn't like most of my other symptoms, completely on the right side like someone drew a line down the center of me.
We'll see how long this hangs on. It's been about 15.5 hours now. I guess 24+ hours is the magic number for calling it a clinical relapse. On the other hand, the hormonal action is in full-swing and I'm sure that's attributing to all the weirdness of the last week.
This last week complete with the birdcage bruise and the couch cushion buffet is like a perverse wedding with a marriage of equally perverse symptoms that will surely breed more of the same. I wonder what I can abstain from the keep the symptoms from multiplying. Sorry, MS, this isn't working out. We need to get a divorce immediately. It's not me, it's you.
It hurt to wash my hair. It hurt more to brush my hair. The rest of the day was spent trying to keep from pushing my hair out of my face because I didn't dare put my headband on. I'm trying to pretend it doesn't exist but, in reality, it feels like a dull ache - sort of.
I might be concerned if it wasn't like most of my other symptoms, completely on the right side like someone drew a line down the center of me.
We'll see how long this hangs on. It's been about 15.5 hours now. I guess 24+ hours is the magic number for calling it a clinical relapse. On the other hand, the hormonal action is in full-swing and I'm sure that's attributing to all the weirdness of the last week.
This last week complete with the birdcage bruise and the couch cushion buffet is like a perverse wedding with a marriage of equally perverse symptoms that will surely breed more of the same. I wonder what I can abstain from the keep the symptoms from multiplying. Sorry, MS, this isn't working out. We need to get a divorce immediately. It's not me, it's you.
Thursday, August 22, 2013
My MS is not her MS is not his MS is not...
I harbored a lot of anger and resentment for some time because there was a woman that I knew in passing that repeatedly asked me if I was going to have more children. I dearly wanted more children but I had two miscarriages. The first left me feeling numb from head to toe on the whole right side of my body. The second left me with a bout of optic neuritis and blind in my right eye. Both are resolved now but knowing how my body would react to those hormonal changes made the decision quite clear.
Still she pressed on and on week after week. "My friend has MS and she has 5 kids and is doing fine." I'm happy that your friend is able to do that, truly I am. MS steals so much away from us that her being able to have that in her life is wonderful. She pressed and pressed, even got to the point where she asked me daughter, 6 or 7 at the time, if she wanted a brother or sister.
I never spoke to her again. That pissed me off to no end. Blabber to me about my decision to not have any more children, even though it is not your business at all, blah, blah, blah, blah, blah - steam rolls out of my ears, but approach my one and only child and bring her into your selfish nonsense and you are dealing with mama bear.
Other than the marked clinical MS diagnoses [relapsing-remitting (RRMS), secondary progressive (SPMS), primary progressive (PPMS)], there are significant disease courses within those diagnoses that affect one's life, Someone may have a PPMS, being completely wheelchair bound, unable to dress themselves but have no cognitive side effects and may be able to hold a job as a professor, for example. Someone with RRMS may be able to run a marathon but have cognitive side effects that make holding a job impossible.
MS can affect speech, bladder and bowel function, mobility, strength, coordination. It can cause intense fatigue, insomnia, depression (both from the aspect of dealing with the disease and damage to parts of the brain that control emotions), emotional lability (responding inappropriately like laughing at a funeral).
MS can cause others to compare you to a relative or friend that has MS and "Hey, they have 5 kids and are doing great!" or "My uncle was diagnosed and within 3 days his diaphram stopped working and he died." or "I have MS but it doesn't have me!" or "My friend was diagnosed when she was 24 and is 28 and is in a nursing home and can't do anything by herself".
Comparing one persons MS to another's is not like comparing the last time you had the stomach flu with someone else. It can be as different as assuming that if someone says they have cancer that their course will automatically be the same as someone else even if the diagnoses are easily removable in-office skin cancer versus stage 4 pancreatic cancer. Like cancers, not all MS is created equal.
Don't get me wrong, saying that you know someone else with MS and know what they have gone through it great, make the connection but don't assume that I am just like that person. Don't assume that since they struggle with fatigue that they have been able to treat well with medications that I am just not taking the right things or don't know what I am doing with my disease course. Yes, I'm happy that it works for them but I have tried several of the anti-fatigue meds and they haven't worked for me.
My symptom and disease management is between me, my doctor and my family. I love to hear if there's a new treatment that works. I appreciate being shared information. I appreciate being thought of but if I decide that a treatment isn't right for me, a life altering decision isn't for me and my family, I would also appreciate if you could just see that not all treatments work for all people, statistically the standard treatments work on 30% off all patients (most non-MSers don't know that). That's a pretty big failure rate, in my opinion and takes a big leap of faith to try them to begin with considering some of the side effects (flu-like symptoms that persist for months, injection site reactions, scar tissue build-up, liver damage, etc. ). I took 12 rounds of chemotherapy over 2 years with potential side-effects of congestive heart failure or leukemia.
Luckily I went into remission. My original deficits are still present but I had quickly gone from walking unaided to a cane and then to a walker and got a wheelchair for distances. Most days I can walk unaided now. I praise the way Novantrone worked for me but I know it doesn't work for everyone. My MS is not your MS is not her MS is not his MS. Please remember that.
Still she pressed on and on week after week. "My friend has MS and she has 5 kids and is doing fine." I'm happy that your friend is able to do that, truly I am. MS steals so much away from us that her being able to have that in her life is wonderful. She pressed and pressed, even got to the point where she asked me daughter, 6 or 7 at the time, if she wanted a brother or sister.
I never spoke to her again. That pissed me off to no end. Blabber to me about my decision to not have any more children, even though it is not your business at all, blah, blah, blah, blah, blah - steam rolls out of my ears, but approach my one and only child and bring her into your selfish nonsense and you are dealing with mama bear.
Other than the marked clinical MS diagnoses [relapsing-remitting (RRMS), secondary progressive (SPMS), primary progressive (PPMS)], there are significant disease courses within those diagnoses that affect one's life, Someone may have a PPMS, being completely wheelchair bound, unable to dress themselves but have no cognitive side effects and may be able to hold a job as a professor, for example. Someone with RRMS may be able to run a marathon but have cognitive side effects that make holding a job impossible.
MS can affect speech, bladder and bowel function, mobility, strength, coordination. It can cause intense fatigue, insomnia, depression (both from the aspect of dealing with the disease and damage to parts of the brain that control emotions), emotional lability (responding inappropriately like laughing at a funeral).
MS can cause others to compare you to a relative or friend that has MS and "Hey, they have 5 kids and are doing great!" or "My uncle was diagnosed and within 3 days his diaphram stopped working and he died." or "I have MS but it doesn't have me!" or "My friend was diagnosed when she was 24 and is 28 and is in a nursing home and can't do anything by herself".
Comparing one persons MS to another's is not like comparing the last time you had the stomach flu with someone else. It can be as different as assuming that if someone says they have cancer that their course will automatically be the same as someone else even if the diagnoses are easily removable in-office skin cancer versus stage 4 pancreatic cancer. Like cancers, not all MS is created equal.
Don't get me wrong, saying that you know someone else with MS and know what they have gone through it great, make the connection but don't assume that I am just like that person. Don't assume that since they struggle with fatigue that they have been able to treat well with medications that I am just not taking the right things or don't know what I am doing with my disease course. Yes, I'm happy that it works for them but I have tried several of the anti-fatigue meds and they haven't worked for me.
My symptom and disease management is between me, my doctor and my family. I love to hear if there's a new treatment that works. I appreciate being shared information. I appreciate being thought of but if I decide that a treatment isn't right for me, a life altering decision isn't for me and my family, I would also appreciate if you could just see that not all treatments work for all people, statistically the standard treatments work on 30% off all patients (most non-MSers don't know that). That's a pretty big failure rate, in my opinion and takes a big leap of faith to try them to begin with considering some of the side effects (flu-like symptoms that persist for months, injection site reactions, scar tissue build-up, liver damage, etc. ). I took 12 rounds of chemotherapy over 2 years with potential side-effects of congestive heart failure or leukemia.
Luckily I went into remission. My original deficits are still present but I had quickly gone from walking unaided to a cane and then to a walker and got a wheelchair for distances. Most days I can walk unaided now. I praise the way Novantrone worked for me but I know it doesn't work for everyone. My MS is not your MS is not her MS is not his MS. Please remember that.
Saturday, August 17, 2013
Tastes like...old foam couch cushions?
Yup, that's me today. I have this odd taste/smell and sometimes can visualize a round piece of old, foam cushion in the back of my throat.
It has been coming and going all day. It's weird as all get out. I don't feel like I'm choking or anything so that's a good thing. It reminds me of the food aversions and the way food tasted while I was on chemotherapy.
I went through a two year cycle of Novantrone treatments every three months for the MS and I had so many food aversions, things that made me feel sick just to look at them, and food that just didn't taste right. That's what this is like.
This follows a day of extreme fatigue, a day where I slept in, took 5 hours worth of naps and felt like I could still sleep more.
I have never had a real relapse so this is kind of a new and weird thing to me. Could it be? Who knows.
I was diagnosed back in 2004 but only had relapsy type syptoms after miscarriages, when my hormones were going crazy. My cycles have been really messed up since the Novantrone so maybe things are going to rear their head again causing all the MS stuff to go bonkers.
We'll see. Now to eat some peanut butter and see if the taste of old cushions will go away for a bit. Yuck.
It has been coming and going all day. It's weird as all get out. I don't feel like I'm choking or anything so that's a good thing. It reminds me of the food aversions and the way food tasted while I was on chemotherapy.
I went through a two year cycle of Novantrone treatments every three months for the MS and I had so many food aversions, things that made me feel sick just to look at them, and food that just didn't taste right. That's what this is like.
This follows a day of extreme fatigue, a day where I slept in, took 5 hours worth of naps and felt like I could still sleep more.
I have never had a real relapse so this is kind of a new and weird thing to me. Could it be? Who knows.
I was diagnosed back in 2004 but only had relapsy type syptoms after miscarriages, when my hormones were going crazy. My cycles have been really messed up since the Novantrone so maybe things are going to rear their head again causing all the MS stuff to go bonkers.
We'll see. Now to eat some peanut butter and see if the taste of old cushions will go away for a bit. Yuck.
Sunday, August 11, 2013
Summer skidding to an end.
It seems like there is a rush towards the end of summer. It's coming towards me like a blur. The flurry of summer trying to eep in all the last bits.
When I was a kid the week of the local community fair was the big sign that reads, "Back to school is right around the corner!" That sign will be glaring just next week like some sort of get-your-fun-in-while-you-still-can beacon.
Stores are filled with bright binders, fun pencils, hand-held sharpeners, storage cases for holding all the bits and parts, shelves and mirrors for lockers, Trapper Keepers and similar style binders grace the shelves, almost begging parents to make the purchase while promising a year of mom not having to find the errant homework because it will surely be neatly seated in a folder clearly marked with a a subject name and next to a syllabus clearly pointing to due dates and times that will keep from the procrastination called I-know-it's-my-bedtime-but-this-project-is-due-tomorrow from every happening again.
This end-of-summer-let's-start-the-new-year trend of optimism comes beaming out of the stores with the new backpacks and pictures of happy-as-a-clam kids boarding the school bus in their new jeans and logo shirts advertising the latest and greatest toy, movie or video game with bright white shoes and laces tied up with the security of a prison. Everyone is put together, eager to learn and has charming, engaging and thought-provoking teachers.
This will be the best year EVER!
Moms have an ever-present knowledge that the second day of school will bring the crinkled homework in the bottom of the bag, Trapper Keeper left in the locker, open lunch boxes with discarded applesauce containers and crumbs trailing over the bottom of the backpack, lost pencils, a new shirt with a hole in in, dirty tennis shoes and a trail of random school "stuff" trailing from the front door half way to the bedroom.
Those necessary forms for emergency contacts, sports participation, field trips, medications, immunizations, etc., etc. that will continue ceaselessly ad nauseum for the rest of the year begin to trail in, getting lost between a soggy lunchbox and the floor of the bus.
We know that the back-to-school routine of getting up early and getting to the bus on time will be a struggle like it has every year in the past, though each passing grade has brought up a child a year older, a year more independent and a year less likely to play with toys on the floor of their room while they are supposed to be getting dressed. On the other hand, transitioning from elementary school to middle school to high school comes with a shift of start times that makes everyone cringe.
We have promise, though. It's a new year with new teachers and new challenges, new ways to improve ourselves and push ourselves and our children to be smarter, stronger and more competent. We will all make it through this new year, crinkled papers and lost homework aside.
When I was a kid the week of the local community fair was the big sign that reads, "Back to school is right around the corner!" That sign will be glaring just next week like some sort of get-your-fun-in-while-you-still-can beacon.
Stores are filled with bright binders, fun pencils, hand-held sharpeners, storage cases for holding all the bits and parts, shelves and mirrors for lockers, Trapper Keepers and similar style binders grace the shelves, almost begging parents to make the purchase while promising a year of mom not having to find the errant homework because it will surely be neatly seated in a folder clearly marked with a a subject name and next to a syllabus clearly pointing to due dates and times that will keep from the procrastination called I-know-it's-my-bedtime-but-this-project-is-due-tomorrow from every happening again.
This end-of-summer-let's-start-the-new-year trend of optimism comes beaming out of the stores with the new backpacks and pictures of happy-as-a-clam kids boarding the school bus in their new jeans and logo shirts advertising the latest and greatest toy, movie or video game with bright white shoes and laces tied up with the security of a prison. Everyone is put together, eager to learn and has charming, engaging and thought-provoking teachers.
This will be the best year EVER!
Moms have an ever-present knowledge that the second day of school will bring the crinkled homework in the bottom of the bag, Trapper Keeper left in the locker, open lunch boxes with discarded applesauce containers and crumbs trailing over the bottom of the backpack, lost pencils, a new shirt with a hole in in, dirty tennis shoes and a trail of random school "stuff" trailing from the front door half way to the bedroom.
Those necessary forms for emergency contacts, sports participation, field trips, medications, immunizations, etc., etc. that will continue ceaselessly ad nauseum for the rest of the year begin to trail in, getting lost between a soggy lunchbox and the floor of the bus.
We know that the back-to-school routine of getting up early and getting to the bus on time will be a struggle like it has every year in the past, though each passing grade has brought up a child a year older, a year more independent and a year less likely to play with toys on the floor of their room while they are supposed to be getting dressed. On the other hand, transitioning from elementary school to middle school to high school comes with a shift of start times that makes everyone cringe.
We have promise, though. It's a new year with new teachers and new challenges, new ways to improve ourselves and push ourselves and our children to be smarter, stronger and more competent. We will all make it through this new year, crinkled papers and lost homework aside.
Subscribe to:
Comments (Atom)