Yvonne deSousa's Blog, page 11
April 23, 2018
The Melon Baller Blog
Hi friends! 2018 has been a little crazier than expected in ways both good and bad. Suffice to say, my blog has suffered a bit. But I did want to reach out and I have 2 things to share so please accept my offering of a mini blog and notes-all below.
At writing group one Friday morning there was a bowl on the table of what looked like cantaloupe. But the fruit was so orange I was suspicious. What if my writing friends were trying to trick me into munching on some veggies?
“These aren’t carrots, are they?” I inquired.
“No. I would never do that to you,” our host declared.
I had forgotten how good this fruit is. Growing up, we had it at my house a lot but never in juicy little balls like these. My mom always cut it up into chunks.
Or, if we were driving her crazy, she would offer us wedges and then order us outside to eat it so we wouldn’t make a mess. We ate outside a lot.
At group the following week another writer friend brought cantaloupe and, again, it was super delicious, better than I’d ever had. It was also in little orange balls.
“What gives,” I asked. “What kind of cantaloupe is this that tastes so good and is round and fun?”
Turns out, I was informed, this was just a regular melon and to everyone else tasted like a regular melon. But it was cut into fun shapes using something called a melon baller. Say what??
Cantaloupe happens to be very good for you and since it has a lot of water in it, it can also help my water intake. I wanted in. But before I wasted money on a melon baller I went to my mom’s to borrow hers.
“Where’s your melon baller? I would like to scoop out some delicious fruit.”
“What melon baller?” My mom replied. “In my day we didn’t have fancy schmancy melon ballers. We had to cut up melons like they did in the old days. Backwards. In the snow. After walking 10 miles to the farm to ask the farmer if we could have one. Up a hill the whole way. With no shoes either….”
I went to the store and bought a melon baller. But it wasn’t as easy to make such perfection as I had tasted at 2 writing groups. I attacked the melon guts and dug in with the baller. But all I got was melon curls.
Orange melon curls that actually reminded me of cheese curls which I suddenly started craving. Thank goodness for the 7-Eleven in my neighborhood or I don’t know where I’d be.
Was I having trouble due to my general ineptitude of was it because of my multiple sclerosis ineptitude?
I wrapped the fruit and took a break. Later, I went at it again. This time what I scooped out was less curls than it was fruity, orangey clumps. Another break ensued.
That evening, a time of day where I usually have the most energy and possibly a little wine, I tried a third time. And this time, they looked a little better. Ahhhh, another step on my healthy eating plan achieved.
I’m never going to eat anything again besides melon balls. I’m going to give away all my other utensils- who needs a fork and spoon when you have a melon baller!
And, surprise, one gets rewarded when they attempt to eat healthy. Turns out melon ballers are also good for scooping cookie dough! 
Sometimes things are right in the world. From now on, I’m only going to eat melon balls and cookie dough. And maybe some cheese curls here and there to round out my diet.
Update 1 is actually a serious lesson. And I mean serious in a serious way. Not the usual sarcastic way I say serious in my blog.
I always thought vanity meant when you thought you looked good and were full of yourself and thought you were all that. Not true. In my last blog, Unsettling In, I mention bumping into an old crush and while I smiled and said hello, I didn’t stop long enough to exchange our usual hug. I had been unpacking and looked awful. Plus, I worried I likely had bad breath.
I was just too embarrassed to get too close to him, this successful, handsome, kind man who everyone loved and adored. Not at my best, I felt unworthy of his hug.
Approximately 5 weeks later he took his own life, much to the shock of everyone who knew him. No one can figure out why. He had everything going for him and looked way more together than I ever was.
We weren’t close and didn’t see each other often. I don’t think for a second a brief little hug from me would have minimized whatever pain was tormenting him under his gorgeous, bright smile. But I deeply regret missing that opportunity. I was so consumed with my own looks (though bad) I let them direct my actions and that was a huge mistake. And that my friends, is another form of vanity, a really pathetic dangerous form.
Seize the moment my friends. And don’t let something as silly as a no makeup, bad hair day get in your way….
Update 2 While I remain l sad over the above update, as it goes in life sometimes, I have a good thing coming up that I’m excited to share with you too. I have again been asked to participate in the HealtheVoices conference in Chicago this year! I’m so honored and looking forward to meeting other health advocates and attending the great workshops.
This year, everyone can be included even if you’re not in the Windy City. The HeV Team will be offering a virtual reality experience so you also can enjoy this fabulous weekend (April 27-29) sponsored by Janssen. To learn more, check out the HeV conference website.
Looking forward to catching up with all of you in May!
March 8, 2018
Unsettling In
My plan was to collect adventures from my recent move, exaggerate them slightly, add MS to the mix and put them all into one cohesive and humorous blog with a bit of a moral at the end.
That’s what I do.
But the past month didn’t fall into that plan. There wasn’t a link I could find that would fit into my usual blog format. Instead, what transpired was a bunch of random tidbits. Short of letting whatever humor I can find go by the wayside, I decided to just throw them all into this post and see what happens.
Do with them what you will.
Think of this as special post, a holiday or anniversary episode of your favorite sitcom for example. You know, where they do something different and it annoys you, but you still watch it anyway.
And, if the no moral of the story thing is a problem, just fall back on my standard moral, giggles are good for you!
They must be because somehow I survived the move, school vacation, stress and two nor’easters with my sanity somewhat intact.
If your move coincides with a huge game where it’s practically un- American not to stuff yourself, it’s ok to stray from your healthy eating plan.
For about 6-8 weeks.
At least.
(So what if you don’t care about football- we’re talking patriotism here.)
If the grocery store in the city you moved to is offering a 2 for $7 sale on Ben and Jerry’s pints, add another week to the above. Welcome to the neighborhood.
You know you might have a problem when your 7 year old nephew comes to visit and, after checking out your pantry, sees a small basket on the table and declares “oh, this is where you put the healthy stuff.”
You know you might have an even bigger problem when you run out of room in said pantry and find not so healthy stuff creeping into the same basket. (Specifically, coconut cookies. Since coconut is a fruit it’s only a small, bigger problem.)
Previously, the same nephew saw me two days in a row- one day where I dressed up, put on makeup and tried to style my hair. The next day he saw me super casual where I had barely even changed out of my pajamas. On that day he said, “Auntie, you know when you put that brown stuff under your eyes? It’s looks pretty.”
By brown stuff I hope he meant makeup and geez, style advice from a 7-year-old?
Too bad I didn’t take that advice on another foray into the same grocery store. It’s 45 minutes from where I grew up. Who could I possibly know whilst in my beyond casual, straight from unpacking, overwhelmed attire? Who would guess that I would bump into an old high school crush, still wicked good looking and as far as I know, not married? Where the hell is the cosmetics aisle in this store????
Not to be outdone, my nephew’s little brother, all five years of him, chose to declare- “Your breath is really stinky.” I took comfort that he said this after spending the night and he had just woken me up. So perhaps I can take a pass on that one? How proud am I that these precious, sweet little darlings have no problem speaking their minds.
Multiple Sclerosis likes to spend my money. That’s why, even though my new apartment is much smaller than the old and has no space for anything extra at all, MS still convinced me to drive to the mall and buy a second, super small microwave oven when I already had a fully functioning one that fit quite nicely into my kitchen.
Here’s how it happened-
My microwave stopped working. I went to re-heat my tea and nothing- no radio waves of any kind. It must be broken.
I’m not stupid- I knew to test the outlet. I tested it with the nearby toaster oven and it worked. Hence, the microwave was broken. What was I supposed to do with my tea? It was just sitting there, getting colder and colder by the minute.
I did what a smart, wealthy person does even though I’m neither smart nor wealthy. I drove to the mall and bought a new one. I came home and tried to get the new microwave out of its packaging. But my tired arms had trouble and (since I really wanted my half cup of tea by then,) I had to rip the box and break all the Styrofoam into tiny pieces to get the new oven out. I plugged it in, turned it on and that one was broken too!
I scratched my head.
I used the toaster oven to try the outlet again. I tried to put my tea into the toaster oven only to discover that while the ticker was ticking away, the toaster wasn’t heating up. Turns out, the ticker on a toaster oven doesn’t need electricity and hence my real problem was a dead outlet.
I now had two functioning microwaves, one functioning toaster, one bad outlet, a cold beverage and a ton of new apartment frustration combined with an MS compulsion to run to the store on a whim for something I didn’t need and couldn’t afford. And, to make matters worse, I also had shredded pieces of Stryofoam all over my new kitchen and no one I knew interested in the microwave because it’s super tiny and somewhat useless.
Here’s one for my fellow germ-a-phobes. The moving company sent three young movers and all were pleasant and did a great job. BUT, while at my old apartment one excused himself to use my bathroom and was in there for a really, really long time. Which kind of freaked me out but hey I was moving so who cares. I wouldn’t need to use that bathroom again.
We got to my new apartment and another mover needed to use my professionally cleaned bathroom there. As did my friend who was helping me. She’s a friend so she’s ok. And the second mover was in and out, but really? Two other people used my new bathroom before I did- how fair is that?
Finally, I was proud of how I braved the first nor’easter. No power for 28 hours? Piece of cake for a New England girl. My biggest storm stress was whether or not I’d have power before my friend’s big art opening. I just couldn’t go two days without a shower and then show up an art shindig-gross.
Thing was, I probably could have showered as I never lost hot water. I have gas heat now so I guess it makes sense except I lost heat. How could I lose gas heat but not hot water?
Worry over the shower thing and this ridiculous obsession on the heat/water issue kept me busy throughout those dark hours.
That plan had been to use the storm to rest.
Yea, right!
Who am I kidding?
MS had its own plans and they definitely didn’t include resting. So, I guess there is a moral to these stories after all.
Man plans, MS laughs…
February 15, 2018
Get Your Blood Dropping for Progress
I’m sorry if I mislead you my friends. I didn’t realize it until it was too late. I got my DxTerity EMPOWER Study kit and it didn’t come with the cup of coffee that was shown in the picture posted on my first blog about this project. I actually had to make my own!!
I cry foul. Imagine my shock when I opened the box and there was no liquid caffeine to kick start the process. The kit did come with lots of other fun goodies-two finger stick things, alcohol swab, bandages to soak up all that blood, etc.
It also came with instructions and it turns out that caffeine before doing the finger stick is not ideal. But still, I made a cup (tea actually, I’m not much of a coffee drinker and thus, don’t need to whine,) and looked at instructions to make sure I got everything right.
At first, all the items in the box were confusing. But that was only because my brain was fatigued- I’d only had about 11 hours of sleep. Once I woke up and read the instructions, it turns out, donating my blood to this important study was easy to do! And the kit made me feel very clinical and super smart.
And here I thought I would be a lousy nurse.
Once I was ready to do the test and felt that the caffeine was somewhat out of my system, I did the first step they recommended. I opened each item and laid out everything in the box on a clean towel, so it would be ready as needed and would stay sterile. Of course, instructions or no, I march to the beat of my own drummer. And so, I insisted on using a Boston Bruins towel. There was a game that night and, so it was all related- Go B’s!
(And they won! Talk about empowerment!)
I did the finger stick and it was way easier then my last Solumedrol infusion. I collected the sample as directed, packed it up and shipped it off. I took the online survey and that’s it, I’m done. Now I just need to sit back and wait for a complementary gift card and the development of a from home blood test for multiple sclerosis, about 6-8 weeks.
Ok, there I go misleading you again. The gift card will take about 6-8 weeks, the from home blood test who knows. No promises can be made. BUT, I think back to my own diagnosis seven years ago and of all the progress that has been made since then. In December of 2009 the only treatment choices were 3-4 dreaded shots. In this short time the treatment options have increased to many more options including oral medications, more home injections and infusions.
On social media I’m constantly hearing about new experiments, testing and potential progress. There’s no MS cure yet but I’m regularly in touch with people diagnosed 20, 30 years ago and back then there wasn’t much treatment hope at all.
Progress has been made and thus it’s possible, VERY possible, that a cure will be found in the future- maybe even in the near future. While it’s not likely that it will be in 6-8 weeks I, for one, I’m thrilled that I could participate in this little home research study and perhaps help (even if only a little help, about 14 drops of blood help) science to develop a from home blood test to help manage this nasty, weird, horrible, overwhelming beast. And so I’m glad I took part in this study.
Even if they didn’t send me any coffee….
If you’re interested my friends there’s still time to participate. Click on this link to sign up-
January 26, 2018
Getting the Boot
“Well we’re movin’ on up
To the east side…”
I have no idea why this song is stuck in my head. Perhaps it’s because I’m in the process of moving?
Maybe.
But this is no move up although I think it is to the east side. As in the east side of the affordable rental complex I was able to secure a spot in. Since I got the call that after years on a wait list a unit was available, and my name was up, this song has been stuck in my brain. And now I feel bad that I’ve probably stuck the opening song from a so/so 70’s sitcom in your brain as well.
Let me try to make it up to you.
“Good luck movin’ up
Cause I’m movin’ out
Movin’ out”
Did switching to a Billy Joel song help?
No?
Me neither. I can still see George Jefferson and Weezy walking into their new building, George’s arms swinging away and practically hitting Weezy’s butt.
Sorry, I tried.
Since learning that I’m moving I’ve been pretty busy with packing and by that, I mean with downsizing. My new place is smaller than I’m used to. That’s ok- downsizing is good.
Most of my getting ready has involved decisions about what to take with me and how to get rid of stuff that I can’t. Decisions are not easy on an overwhelmed MS brain.
And I’m not extravagant; I don’t have a lot of stuff. But still, stuff creeps in over the years. The beachy centerpiece looks nice on my end table but the end table is getting the boot. Should I toss the centerpiece? But it’s from my friend’s wedding. How can I throw that away?
What about clothes from my previous professional life- what if I figure this crappy MS fatigue and cognitive thing out and have a professional life again? Shouldn’t I keep them? But will they all fit in one closet as opposed to the two I have now?
Then there’s how to pack. I seriously found this box at a liquor store.
Too bad an MS walker doesn’t fit in it.
And so the list goes. After that comes the actual packing, followed by the re-organizing and the address changing and all the busy associated with moving that I haven’t even thought of yet.
What’s the point of all of this you ask?
Well, there’s two.
One is that like anything and everything else, when you throw multiple sclerosis into the mix, it gets more difficult, more exhausting, more overwhelming and just more…
Second, since it’s kind of insane around here, my blog may be a little quieter than usual.
I know, try to contain your tears my friends, I’ll miss you too. I’ll think about you throughout this entire process; if only to get that damn Jefferson’s theme out of my head.
If history is any indication, MS will surely give me some MS stories to share with you once I’m ensconced in my new apartment and have unpacked my laptop.
In the meantime, I did want to leave you a gift story that my MS friends can likely relate too.
My cool aunt bought her nieces Uggs for Christmas. I’d never thought much about Uggs myself but my cheap boots and the water proof spray weren’t cutting it so I was pretty excited.
As my aunt lives about two hours away we were only able to meet up recently and so I only just tried them on, try being the operative word.
At first, I wasn’t sure why I was having trouble. They were my size. Were my calves too fat- is that why the Uggs were hard to get on?
Once I did get them on they were like heaven, like walking on clouds. They are so comfortable that I never want to take them off. And they are so tough to put on and off I might not ever be able to take them off.
But I manage.
Until the other day when the moving process and Uggs and MS collided.
I had taken all the cute pictures kids in my life had drawn off my refrigerator. What was left was goobs of sticky goo from all the tape. I couldn’t leave the fridge like that for the next tenant and so I scrubbed at it over and over to try to get it off. I blasted my music to help with the energy and eventually was able to cross that moving task off my list.
The next day my arms hurt like hell. We tend to forget about MS when we feel ok and are accomplishing something. This pisses MS off and it insists on reminding us that it’s always around.
Still, I had somewhere to go and dammit, MS or no, I was going to wear my new comfy boots.
Have I ever mentioned the cognitive and decision difficulties that come from MS?
After a great struggle with my painful and clearly weakened arms, a struggle that took minutes, I got the right Ugg on.
Ahhhh, my right foot was in shoe heaven.
The left boot was not willing to cooperate. This brawl was harder. It was me against boot and I was losing.
Now I had a problem. I could give up and just wear another pair of boots but would I be able to get the right Ugg off?
I seriously considered heading out into the world with two different boots on my feet. I was only going to my writing group and writers are artistic and spacey; they probably wouldn’t even notice. A missing comma, sure, but two different boots?
Never.
But with one final huge thrust (is this what giving birth is like?) born of frustration, anger and desire to have super comfy feet, I got the left boot on. The battle was over and I was the shoe victor. My feet can reign in warm, soft victory forever.
Later I stopped at an Uggs store and the sales clerk said that the Uggs will stretch.
Oh, the irony. While I’m trying to decrease my stuff and myself, if I gain any weight I may not fit in my new digs, I’m also trying to increase my beloved new boots. Somehow, in my weird MS world, that makes sense…
January 1, 2018
Such a Sicko
This particular post may offend some of my male readers and for that, I apologize. Specifically, males who turn into whiny crybabies when they get sick. You know, a little cough and they become completely incapacitated.
I know this is wrong- to lump males into this stereotype- especially since I personally abhor stereotypes. Not EVERY male is a crybaby when he gets a cold.
Not EVERY woman is witchy when she gets PMS.
Not EVERY politician is a crook, well, let’s just leave it at that.
So, I would never, ever lump a whole group of people into one insulting stereotypical myth; unless, of course, it’s for my benefit as a slight bit of humor in a blog.
Cause here’s the thing, I finally, finally get it. I’ve been living with a nasty head cold for over a week and have become one of the babiest of babies about it.
It started the Friday before Christmas with just a bit of a scratchy throat. I took great precautions to keep the illness at bay and by that, I mean I didn’t do any screaming when I went to the hockey game on the 23rd.
Really.
When the jumbotron said to get loud I just clapped and stomped my feet. And miraculously, without my full support, the Bruins won anyway-they’re that good!
I felt kind of cruddy on Sunday but did my best to ignore feeling a little blah in favor of Christmas Eve preparations and activities.
Christmas morning I still felt icky but Christmas itself took my mind off of it.
Tuesday morning though, the germy gloves came off and I have been a total uncomfortable, miserable mess since then. The brutal coughing fits, the super sore throat, the stuffy AND runny nose, and the illness fatigue on top of the MS fatigue on top of the over the counter meds fatigue have done me in. I’ve accomplished nothing except whining and can now totally relate to my male brethren.
And it all begs the question- is this normal or does multiple sclerosis play a part? I don’t remember ever being overwhelmed by a common cold before.
When I was working fulltime I never took a sick day and would just work through feeling lousy as my coworkers always said I was indispensable and they couldn’t function without me. I wasn’t and they could but believing so allowed them to do less work.
So how did I function amidst the symptoms doing me in now? I must have but it seems impossible.
Plus, I don’t ever remember a cold lasting this long.
Back when I was a kid and didn’t feel like going to school a little ache might keep me home but only for the day, or maybe two if gym was on one day and a math test on the other.
Back then it was cool to stay home from school as channel 56 had Happy Days and Laverne and Shirley reruns on in the morning. Laughing at them was enough to wipe me out to look miserable for when my mom came home from work on her lunch break and microwaved me some soup. Sometimes, if I had managed to look sickly enough, she even brought me ice cream.
Ah… those were the sick days.
But now there’s nothing good on TV and it’s days later and I still feel miserable. So much so that I went to the internet to find out if I might have something more than just the common cold. But no, every website basically said I needed to get over myself, rest, suck it up, and find different reruns to watch.
Trust me, I checked everything- swine flu? Nope.
Bird flu? Nope.
Variant flu? Ebola? Whooping cough? No, no, no.
I’m this miserable over something most women in the world don’t even notice. I felt so ashamed of myself that I even called the on-call nurses for my MS medication- could this be some type of a flare mixed in with all this germiness?
It’s possible, she told me, and worth paying attention to, but likely I just needed more rest and to drink lots of fluids. Oh, I’m drinking fluids. I’ve had so much water that my water app can’t even calculate the ounces anymore. At this rate I’ll probably turn into a fish before I feel better.
While I was on the web trying to find a reason for being a such wimp I happened upon a random website site that was detailing facts about the movie Forest Gump. Turns out Tom Hanks had the flu when he was filming the running scene!!
I can’t even run on a good day never mind one when I feel this crummy. And he had an actual flu!!
Of course, I’m not getting paid thousands to get out of bad like he did. But it turns out he wasn’t even paid to act in the movie- his contract just gave him a portion of the proceeds which turned out pretty well but it’s not like he knew that at the time.
So there, Tom Hanks made me feel even more like a baby and made me re-think the stereotype of males being wimps when it comes to a cold. I’ve now become even wimpier and offer my most humble apologies.
Hey, all you guys out there, when you’re done accepting my apology can you please bring me tea and some more cough drops? I prefer the wild cherry flavor…
Wishing you all a germ-free, pain-free, healthy, happy, giggly New Year!
December 20, 2017
Secrets of a Bahama Mama
Ahhh, the holidays are upon us. A time when we look around us towards the people we are grateful for, the ones who make our lives special. We like to thank these people in our lives with a gift. For myself, I am grateful to all of you, my fabulous readers. You support me. To quote Tom Cruise back when he was still somewhat cool, “you complete me.”
Not completely but you know the holidays make us all sappy.
Anyway, I would love to give you a gift. But what? I can’t afford to mail all of you something and to be honest, I’m so freaking tired just the thought of that is making me run and hide under my bedcovers.
Then it occurred to me, I could give you my secret skill, the secret to the only thing I know how to make.
They’re called Bahama Bars.
Should you be interested and read on, you will find that you recognize Bahama Bars as something else, perhaps as 7 layer bars even though there are only 4 layers or Magic Cookie Squares.
Here’s the history-
Back in the seventies my mom found this recipe in one of her lady’s magazines and she made them. They didn’t have a name then. Since there is coconut in them and it was a brutally cold December, coconut made her think of a warm island vacation she would love to take which could be in the Bahamas, and so she named these treats Bahama Bars.
Apparently, no one else in our small town had that issue of my mom’s magazine and so no one else had ever tried them. They became a hit and it wasn’t Christmas at our house, or, frankly, a bake sale, a party, a fancy dinner or anything else involving food or other people, without them.
Somewhere along the line someone gave them one of the boring names above but we’re sticking with Bahama Bars.
As I grew up, I learned to make them and, it turns out, I’ve become something of a master at it. The one thing MS hasn’t robbed is my ability to make these little suckers which isn’t as great as it sounds because I’m really, really sick of them.
Everyone loves them and so I make them ALL THE FREAKING TIME! Christmas, a birthday party, a baby shower, a brunch, a meeting of my healthy eater’s support group, whatever…
Friends still rave about them and so, I keep making them.
(What if my friends have grown as sick of eating them as I am sick of making them and are too polite to say so?)
If you’re interested allow me to share with you the secret of making these treats masterfully. And as an added bonus, I’m pretty sure they’re healthy. They only use natural ingredients.
Like butter, which famous chef Paula Dean pushes so it must be good.
Graham crackers which taste terribly bland by themselves so also must be good for you.
Coconut, a fruit. (Angel Flaked Coconut works best.)
Chocolate chips.
(Word on the street is that now chocolate is good for you and if you use milk chocolate chips you get extra nutrition from the milk.)
Finally, the piece de resistance, sweetened condensed milk. Milk- very good for you. Condensed meaning concentrated meaning compressing all that nutrition together, sweetened meaning sugar which is natural from sugar cane. See? All good stuff.
So here it goes- stick one stick of butter in one of those long rectangular pans. (I could get out my ruler to tell you the size of the pan but I have no idea where my ruler is.) 
Preheat your oven to 325 degrees and place the pan in there, allowing the butter to melt while the oven is getting warmed up. Take the pan and swirl the melting butter around a bit so the whole bottom of the pan and some of the sides are covered with melted butter. At this point, probably best to use pot holders. Remove pan from oven.
Take a package graham crackers- you know, the box comes with 3 packages, you just need to use one. Crumble up the crackers (probably best to remove pot holders before doing this,) so they cover the pan.
Do not, I repeat, do not process the crackers so they are just a powder or buy them already in powdered form. You need them crumbly with little cracker chunks. Besides, nothing helps relieve holiday stress than blasting Christmas songs, drinking wine and crumbling bland crackers into bits. 
Next sprinkle the chocolate chips evenly over the crackers. Don’t cover the crackers, just get a nice layer going.
Then do the same with the coconut.
Finally, pour the sweetened condensed milk on top of all that. Again, don’t cover the coconut but use the whole can and try to make it even.
Put the bars in the oven.
Here’s why I make them the best- I have no idea how long to tell you to cook them. 
You can probably ignore them for at least 5-7 minutes but then you just have to keep checking. The timer goes out the window with these and taking them out at the most perfect moment makes them perfect.
As soon as you see the edges start to brown, even a little bit, take them out. (Pot holders again-trying to make it as easy as possible for you.)
Let them cool for 1-2 hours. Then cut them up BUT don’t try to take them out of the pan. Put them in the fridge for at least two more hours and then take them out.
Voila, you have perfect Bahama Bars for any occasion as long as put them in these little paper thingys. My mom says it is very uncouth to take them somewhere or give them as a gift without putting them in these paper doodads- perhaps that adds to their perfectness? 
Bonus tip-they freeze really well. And I know people who actually prefer to eat them right out of the freezer.
If you are without ideas for a gift or a treat this Christmas I hope my Bahama Bars secrets have helped you.
And now that I have shared these secrets I hope I never have to make these little bastards again.
But alas, the ladies at the library are super nice and they do really, really like them…
Merry Christmas my Christian friends and a wonderful holiday weekend and Happy New Year to everyone!
November 30, 2017
Sniffles Not as Cute as a Hamster
It started innocently enough. A sneeze, that’s all. Just one little achoo and then people were wishing me polite blessings from the big guy in the sky, even higher than we were.
“God bless you,” from the couple across the aisle.
“God bless you,” from the flight attendant who just handed me crackers.
“Gesundheit,” from the 20something behind me. (Everyone thinks “gesundheit” is German for something like “good health to you.” It actually means “I don’t know what the hell’s wrong with you but don’t you dare breath on me!)
No sooner had that one sneeze transpired then came another.
And another.
That was when my mom said, “I don’t know what the hell’s wrong with you but don’t you dare breathe on me!)
My mom, sister and I were flying to Arizona to visit my great nephews, who happen to be super great by the way. We don’t get to see these kids often and it scares me how quickly time passes. It seems like just 5 or 6 years ago they were babies.
I was not going to get sick, these sneezes were a fluke, they had to be. But no sooner did I have that thought when the sniffles started. That should be ok- sniffles aren’t that bad. I used to have a hamster named Sniffles- he was cute. Sniffles would be alright. 
But then the sneezing continued and the sniffles turned into a runny nose and misery, not just for me but for the passengers. It was sneeze, blow my nose, blow my nose again, sneeze, blow my nose, put a dab of hand lotion on my raw, burning nostrils, blow my nose again. I was absolutely fine and then with one sneeze I quickly turned into a runny, sickly mess.
First, I went through all the tissues I had brought with me. (I used to work in social services and tissues on my person were a job requirement. Now that I’m a social services client I need them more than ever.)
I went through the tissues my mom brought and then the napkins my sister had asked for when the flight attendant brought her water. It wasn’t long before I had to venture in the tiny bathroom for more.
That still wasn’t enough.
Soon I had to ask the flight crew if they had an extra box. They did and I used most of that too which meant no Kleenex for the rest of the passengers as they only had one extra box. Ten sets of golf clubs jammed onto the overstuffed, overhead bins but extra boxes of tissues? No way. They could totally exceed the weight limit. Better just bring one and leave the rest on the tarmac.
This mystery illness was not endearing me to the folks around me who assumed I must have some horrible flu and willingly brought my germs with me on the flight, just for kicks.
The thing is, this happened before. It happened when I received a scholarship to a really cool conference (HealtheVoices 2017.) One minute I was fine, the next minute my nasal passages were releasing enough fluid to flood the Earth. The Pacific has nothing on my sinuses when this unknown mid-flight illness begins.
So why does this happen? What is it about hurtling through the sky at 600 miles per hour in a metal tube with 200 strangers that makes me break out in grossness? I do the tricks I’ve been advised.
I scarf down Airborne like they’re M&M’s and sanitize everything. My carry on definitely contains hand sanitzer. As a matter of fact, it contains hand sanitizer and not much else.
Except M&M’s of course.
I do use a nasal spray before the flight to help with the other flying trauma, the ear popping that sounds like it would be fun, like popcorn or bubble wrap popping (best useless pastime ever!) but can actually be super painful. But it can’t be nasal spray causing this germy, sneezing, nose blowing malaise- it was recommended to me by a doctor.
Well, actually, it was recommended to my mother by HER doctor but a doctor is a doctor right? 
I thought of doing a nasal experiment now that the trip is over but if nasal spray is the culprit, who wants to turn themselves into that mess at home? Tissues are expensive.
Is this multiple sclerosis related? The National MS Society’s latest issue of Momentum magazine just did a feature on traveling with multiple sclerosis and this didn’t come up at all. The article mentioned accessible accommodations, getting plenty of rest, preplanning when it comes to your RXS and knowing where you would find emergency care if needed. (Really good article by the way, check it out if you missed it.)
But it didn’t mention what to do when your nose won’t stop and passengers are giving you the stink eye because you might get them sick. Invisible illness in deed! 
Both times this happened once I arrived at my destination the symptoms died down slightly and went away completely after 2-3 days. But that’s 2-3 days of my vacation! Or of a free conference!
I can’t tell you what this latest medical crazy is about but I wonder if it’s happened to any of you. I’m going to be my own scientist and say it’s likely from a weakened immune system combined with travel fatigue, combined with stress, combined with bad airport food, combined with too many M&M’s, combined with MS.
Because, as you know, when in doubt just blame MS!
Friends if you would like more information about the HealtheVoices conference please check out their website here,
November 22, 2017
A Few of My Favorite Things Times 3
I actually wrote this past on a previous Thanksgiving. Yet, I’m still super thankful for all the same things! So I thought I would share it with you once again. Have a wonderful holiday friends….
For some insane reason, I can’t get the above song out of my head even though I have usually found it slightly annoying. It’s kind of a Christmas song, although not written as such.
As someone who loves autumn so much so that she enjoys taking her cool weather holidays one at a time, I’m not sure why this song is hanging around my lesion filled brain.
Perhaps it’s because next week is Thanksgiving and the above reminds everyone what what’s her name from that movie is grateful for. Thus, why isn’t My Favorite Things thought of as a Thanksgiving song?
I have so many things for which to be grateful, that I couldn’t possible name them all or fit them into a song. And trust me, mittens and kittens are not at the top of the list. Just thinking about Thanksgiving makes me grateful.
For example, if my small family winds up at my place on the holiday then I am super grateful that the local grocery store sells what I like to call ‘turkey in a box’; a complete holiday dinner you can just throw into the oven all prepared and no one is the wiser.
I am grateful for pumpkin pie- how could I have possibly left out pumpkin pie in my last post Pumpkins, Pumpkins Everywhere?
I’m thankful that Thanksgiving is a day where it’s perfectly appropriate to eat too much and veg out. It is actually un-American not to do so.
And I am thankful that even the fruits and veggies cooperate on this day and aren’t too obnoxious- think mashed potatoes, stuffing with celery, cranberry sauce, candied yams, pumpkin pie. I know, again with the pumpkin overkill.
I am grateful for the knowledge that Black Friday is just a scam of hype and deals that aren’t really deals, thus allowing smug people like me the luxury to stay home, eat too many leftovers and veg out for one more day.
But this is a multiple sclerosis blog and so if I am going to list things that I am grateful for, or a few of my favorite things, I should focus on MS.
What could one possibly find to be grateful for about MS? I thought about my last few years living with this illness and did miraculously come up with things to be grateful for.
For example, while I am not thankful to have to give myself shots, I AM very thankful that they seem to be working. And I am thankful for the extra fat cushion I have to soften the shot just a bit.
I still HATE doing them though.
I’m thankful to have a knowledgeable, kind, patient, young, handsome neurologist on my side as I battle MS. I am NOT thankful that he happens to be married but I guess you can’t have everything.
I’m grateful that my primary doctor diagnosed my diagnosis quickly without having to do a spinal tap as I have heard they are just horrific. She just had me electrocuted and shot through a tube a couple of times and we were good to go.
These bits of MS gratitude did not seem grateful enough. I started looking over my blog posts for more help and realized that I started this blog over a year ago and it has since grown from a whenever I felt like it post, to a once a month post, to twice a month post and then to a once a week post. (Thank you to multiple sclerosis for continuing to give me enough material to keep this wacky blog going- oh wait- maybe not….)
In my past blogs there were other examples of MS things I had to be thankful for. In the post Stormy, Sleepy Sandy, I talk about my bladder alarm clock screaming at me to get up. I am thankful that the alarm clock part of my bladder is still working. It’s been quite a long while since I have had ‘an accident’ and I would like to keep it that way for as long as possible.
I am thankful that kale is considered an awesome veggie for MS’er’s as well as the world as a whole, and I can sneak its precious nutrients into my all time favorite comfort food, kale soup- see post Kale, the New Frontier.
I am thankful that due to cognitive difficulties that come from MS, when I do something stupid I have a disease I can totally blame it on- Stupid MS.
While fatigue and clumsiness are constant companions, and I am may not move so gracefully going about my day- No Moves Like Jagger but Smooth Like Montel and Chop Their Happy Little Heads Off posts- I am grateful that I’m still moving. Being able to move about without any help is definitely something to be grateful for, even if you do move like a slug most days.
And while an eye exam discovered a new disgusting condition, Oily Tears and All, I am grateful it didn’t show any significant damage as yet to my optic nerve. I will be able to continue reading the numbers on my bedroom scale and the milligrams on my medications going up, up up a while longer…
And speaking of weight and Montel Williams, I am grateful to all my friends, family and readers who have helped me on this journey, whether they sent me cool tools and recipes to try to get fit- The Star Wars Way and 50 Shades of Green/Doing It Veggie Style posts, or whether they sent words of encouragement, or are just reading the blog after I have it to them a million times, even if it is just to shut me up about it, I am grateful.
And on this sappy holiday of Thanksgiving, I must say I am thankful to God who is the real being responsible for the above. My health, my sense of humor or lack thereof depending on your opinion dear reader, my friends, my family and everything good comes from HIM.
Fortunately for me, HE also enjoys a good joke or two. HE absolutely appreciates a rip roaring laugh. I think that may be why he created us in the first place!
A Happy and Healthy Thanksgiving to all!
November 14, 2017
Make your MS Experience Count
With annual flu shots, regular blood draws, and thrice weekly injections to keep the MS beast at bay, I’ve decided I’m pretty much a human pin cushion. The memories of my grandmother’s sewing kit overtake my brain and not in a good way. It may be karma payback from the times in childhood when I would whine to my friends about dentist visits by saying, “I would rather go to the doctor’s and get three shots then go to the dentist!”
For the record, my dentist had bad breath and that drill- no thank you!
The thing is, I’ve kind of gotten used to being a pin cushion. One of my theme songs is Needles and Pins, (the Tom Petty/Stevie Nicks version of course.) While I will never understand why thigh shots hurt the most when my thighs are filled with tons of fat, you’d think a fat cushion would help but it doesn’t, the injections aren’t as horrible as they used to be. So when DxTerity contacted me about an at home study involving a finger stick I decided to hear them out.
It turns out this one time finger stick can help super smart scientists better understand multiple sclerosis. Not only that, but they will send me $50 to do it! I wish the lab techs would give me $50 to do a blood draw. If I’m already a pin cushion for my doctors I might as well be one to help fight the beast.
If you’re interested my friends, here’s is the info on how you can sign up. Full disclosure- DxTerity is paying me a bit to share this info with you guys but don’t worry, I’ll be sticking myself too and writing about the experience. So here goes it, get your alcohol swabs ready!
Are you interested in helping advance research for MS but don’t know where to start? You’re not alone. Taking part in a research study for MS can seem overwhelming, but it doesn’t have to be.
A new at-home study called EMPOWER (Evaluating Multiple Sclerosis Patients ShOWing A GEnomic Signature of Therapy Response) is seeking volunteers with MS nationwide to better understand how MS affects the body. The goal of the study is to develop a blood test to help monitor disease activity and treatment response for people diagnosed with MS. The study is being conducted by DxTerity, a genomics company developing tests to better manage autoimmune diseases.
Do I Qualify?
If you’re 18 years of age or older and have been diagnosed with MS (any type), you qualify.
Why Should I Take Part?
EMPOWER is an at-home study that can be completed in your free time. All you need to do is sign up online and a study kit will be mailed to your home.
What’s Next?
Follow the instructions in the fingerstick blood collection kit to collect a few drops of your blood (much like at-home glucose monitoring). Mail your sample to the research lab using the prepaid envelope.
When you’re done, log in to the secure study portal and complete a short survey online. You will be compensated $50 for your complete study participation, which you can keep or tell DxTerity donate to an MS charity of your choice. That’s it!
Ready to make a difference in MS research? I know I am. Click here [EMPOWER] to get started.
October 6, 2017
A Doll, Not a Pretzel
How do you describe an obnoxious, crazy, ridiculous, sometimes painful MS symptom that can’t be described? You revert back to your childhood. Or, your cousin’s…
I was a child of the 80’s.
Actually, that’s a lie. I was an incredibly awkward pre-teen of the 80’s and then a very shy and insecure teen of the 80’s. Thank God for the music or I might never have made it.
But, I had a male cousin who was a child of the 80’s and I remember that I had a fondness for one of his boy toys.
(No hidden meaning implied- I’m talking about one of his favorite, actual toys.)
It was this doll called Stretch Armstrong. He was a brawny dude made of rubber and you could stretch him in a million ways. You could stretch his head. You could stretch his arms or his legs. You could stretch his torso.
And, if you had friends visiting, and they all grabbed onto one of his limbs, you could stretch all of him at once.
Even though I was too old for it I liked to stretch him. Who knows why? I was even weirder then than I am now.
I’d been thinking about Stretch Armstrong a lot this summer while the heat and humidity consumed me, especially at bedtime. You see, I have these super uncomfortable feelings in my legs that I can’t explain. I’ve spent hours at night lamenting over them. How can I explain them to my doctor if I can’t even explain them to myself?
Then it came to me! They are like Stephen’s Stretch Armstrong doll!
Picture me lying miserably and trying to sleep. My legs feel like they need to be stretched as far as possible and perhaps even that won’t take the sensations away. The only relief MIGHT come from a giant kid and his giant cousin with the bad 80’s haircut pulling each of my legs as far as they possibly can. If I can turn myself into stretch deSousa, perhaps I could finally get some rest.
I was trying unsuccessfully to describe this sensation to another cousin who happened to be starting her first year of college where she will be studying nursing and she said what I had was Restless Leg Syndrome.
How could that possibly be? When I’m lying awake at night trying to stretch myself, (oh giant kids, come visit me any time please,) the TV is on and I see all these commercials for Restless Leg Syndrome. On TV it is defined as a creepy, crawly feeling.
MS and I have had our issues with creepy crawly. Is it a coincidence that the summer brings heat, humidity and BUGS? I constantly see bugs out of the corner of my eye and start batting at them only to realize that either my MS brain or the MS lesion on my optic nerve are making them up.
Except when they aren’t and I get the creepy crawlies over my whole body as I hunt for a fly swatter that may or may not be swatting at real bugs.
No, I didn’t recognize my leg crazy as RLS.
I did equate it with multiple sclerosis though and as the summer dragged on they increased from so obnoxious I can’t sleep to so painful I may never want to sleep again. At those times I pictured stretch deSousa, the toy version of me, being stretched so far that I was actually tied in a knot like a pretzel, which only made me want some of Auntie Anne’s cinnamon sugar pretzels. Not that they would help but they would at least taste good.
Unfortunately, and who knows why, Auntie Anne’s isn’t open at three AM.
After telling my doctor about my summer difficulties we decided it was time for a four-day infusion of Solemedrol. In other words, steroids baby, steroids.
I didn’t disagree but had some concerns.
Just because I felt like Stretch Armstrong didn’t mean I wanted to look like him. Have you seen how jacked he is? I don’t think that’s from stretching. I think it’s from all the roids he got at the toy factory.
But I had done the steroids nine years before when I was first diagnosed and they weren’t a problem.
Not the case when stretch deSousa was hanging out in the infusion room. What a grouchy, miserable, roid filled monster they turned me into. The first night consisted of no sleep and my body hurting as if I was ten different pretzels all tied up with each other. And not even good pretzels, the stale bar room kind.
The second and third nights my neck and head hurt beyond belief as if some majorly roid infused giant kid with fake Mr. T chains was pulling on my stretch head. Where the heck is a Ghostbuster when you need one?
By day 4 the pain modified to just aches. The week was done and I was spent and drained. All I wanted to do was rest. Just put me in a toy box, preferably on top of a Teddy Ruxpin and not on one of Steve’s many Transformers or action figures, and let me sleep.
Thing was, rested and no longer aching I did feel better. I didn’t become a he-woman from all those roids coursing around my body, and, for some very unfair reason, my fat didn’t turn into muscle. But I felt better.
And, it turns out, my young nursing student cousin was right; feeling like a combination of Stretch Armstrong and a delicious pretzel ARE indicative of RLS. I looked it up and it is described as a “disorder of the nervous system- just like MS!”
But then, how come the steroids worked?
Who knows?
Blame it on roid rage or on the toys of the 80’s. Or on MS itself.
I’m just happy to be feeling better and eager to get back to my regular routine. The 80’s are over my friends and I say good riddance!
So what if the roids didn’t turn me into She-Ra?
Maybe If I start eating healthy again my next doll incantation will be a Cabbage Patch Kid.
Or Strawberry Shortcake….
