Tag Archives: ms brain

H2O a Go, Go

Multiple Sclerosis Advice

You may think today’s blog is another one that has me whining about my obnoxious bladder.

Well, it’s not.

Although, to paraphrase my sister Laurie, “my bladder issues do still piss me off!”

When you tell people you have a chronic illness you find yourself on the receiving end of a ton of unsolicited advice. Most of that advice comes from well meaning people.  Because they are well meaning, the polite you grins and bears it even when it’s useless, clueless and ridiculous.

“Just tell yourself, ‘I won’t get stressed, I won’t get stressed…’”

“Breathe…”

“You need to get more sleep.  Oh, you got nine and a half hours?  You must be sleeping too much…”

“You may not have MS, it could just be an allergy…”

The thing is, sometimes you may actually get something helpful out of the advice so it’s worth listening too.  (Yes, that advice could be construed as unsolicited advice directly from me.)

 

Imagine my shock when years after someone told me I should eat bee pollen, I discovered that bees are actually helpful and if we don’t take better care of them, they are going to go away and then the world could end.

As someone who has written a book about multiple sclerosis that I am desperately trying to sell to the masses, (MS Madness!  A “Giggle More, Cry Less” Story of Multiple Sclerosis in case you’ve missed it the 10, 000 times I have mentioned it before-more unsolicted advice-buy, buy, buy…) I am even more open to advice.  I travel my area talking about my book and people want to tell me things that they have heard might possibly be helpful.  And again, that is a great thing.  I appreciate it, I really do.

But every once in a while, not so much.

Please allow me to briefly digress. I swear there will be a point to this digression; I think.

I am very proud that after many people suggested that maybe I didn’t have MS but actually had aspartame poisoning, I looked into it and discovered that they were right.  Well, not really.

My excellent neurologist says I still have MS and I believe him.  But I looked up aspartame and discovered it really is bad for you and sure wasn’t helping things.  I switched from artificial sweetener to Truvia, an expensive alternate, and completely gave up my beloved fountain diet cokes in favor of water.

 

I drink water all the time now.  Plain water; no enhanced sugary flavors.  I tried diet coke again once and didn’t even like it anymore.  I thought I was doing great.

At one speaking event I foolishly forgot to pick up some bottled water. A friend offered to get me some and came back with SmartWater which I hadn’t seen before but thought would be great as maybe it would help me be smart.

After the presentations by many authors, a woman to approached me.  She asked if she could tell me something and of course, I agreed, hoping she was going to tell me that my book looked amazing and she couldn’t wait to buy it.  Instead she informed me that the SmartWater I was drinking really wasn’t smart at all.  I was quick to appease.

“Oh really?  I’ve never drunk it before.  My friend got it.  Is it filled with sugary additives or something?”

“Oh, I don’t know,” she said.

Hmmmm……

It was a chilly day in May and she was wearing socks with sandals.  I know it’s not right to stereotype but my first thought was the bottle; she must be Earthy Crunchy green and worried about the planet.

 

“Oh, don’t worry, I recycle- I won’t throw away the bottle.”

That wasn’t a lie.  I really do recycle but turns out that isn’t enough anymore.  Don’t even get me started about the dangers of water bottles, that’s a whole other blog post.

“That’s not it either,” she replied.

Turns out, what she was referring too was the alkaline content in bottled water and how it does something really bad that could be making my MS worse or does something really good that could make my MS go away.  I couldn’t figure out which.  The only thing I know about alkaline has to do with batteries.

Maybe I should ask the Energizer bunny what this woman was talking about.

 

Then she mentioned something about acid levels, which was really upsetting as I’ve never done acid in my life-not even in college.

Here I thought I was being so healthy!!!!   No diet coke for me!  No juice at this event-too much sugar.  No milk- now some say milk is bad.  No lemonade or even iced tea.  No beer or margaritas either.    No chemicals, poisons, GMO’s, alcohol or aspartame.  I was drinking what I thought I was supposed to be drinking, what everyone told me I was supposed to be drinking.

This woman then went on a 20 minute scientific diatribe while I stood there dumbly watching the custodian fold the chairs and empty the sods cups.    I couldn’t figure out science even before MS attacked my brain. I heard the word alkaline a lot and acidic.  And inflammation, that one was kind of familiar.  But I had absolutely no clue what she was talking about.

I’m all about good advice and being polite though so I stopped trying to figure her theory out and just figured when she was done, she would tell me what I should do stop the water epidemic.  She finally stopped talking and so I asked her what I should do? How do I solve this problem of bottled water that I didn’t know I had.

I was eager for a solution that would circumvent me going back to school to take a science class.  I didn’t even know what kind of science this was.   Biology?  Chemistry?  Earth Science?  Yes, water lives on the earth so it must be an Earth Sciences class I should take to sort this out.

 

Her response to my question of what should I do now that I know bottled water can be bad, was straightforward.

“Oh, I don’t know.”

What??

See friends, I swear this is all true; you can’t make this stuff up with or without an MS brain.

I pressed her a little and she told me that she had just moved to the area from California which had the best water in the world and where she knew which bottled water was safe to drink.  Now that she was in MA, she had no idea.

I pressed her more and she then told me her best advice was to buy litmus strips (what?) and then take them to all of the Whole Foods, Trader Joe’s and health food stores in my area where I should buy up all the bottled water they had and then bring it home to test each of them with the Litmus strips and then only drink the bottled water that tested well.

For one month.

Then, as companies can change their manufacturing processes and their water sources, I should repeat this test every month for infinity to make sure I was constantly getting the best water.

It was at this point that I began to peek around the corner of the empty room looking for the Candid Camera dude.  He never showed up.

 

I was more confused than ever.

About the only thing that seemed clear after the woman and I finally said goodbye was that there must have been something in her water.

There just had to be…

Hey MS, Hug This!

Some results, dancing, and a little bit of a book

 

Hope everyone is stuffed in a good way this day after Thanksgiving!

First up on today’s blog, I must apologize for misstating the chapter of MS Madness: A “Giggle More, Cry Less” Story of Multiple Sclerosis. I have been talking about the Hey MS, Hug This as chapter 19 in my upcoming book. It is actually chapter 20. Forgive me for this lie. It wasn’t intentional. It was MS’s fault.

As promised, I had planned to name the winner of my first contest. Unfortunately, there were no winners, and for that, I apologize as well. I thought it would be easy. The questions was, Hey MS, Hug This, is one of the more serious chapters in my book and it details one of the most frustrating aspects of multiple sclerosis. What is that aspect? Hint- it is not the MS Hug.

The most common answers were fatigue and bladder issues, and it is true, those are incredibly frustrating. But the answer I was going for was FRUSTRATION itself. To me, frustration just sums it all up.

A painful symptom is called a hug.

 

The so you don’t pee all night meds give you wicked dry mouth which makes you need to drink water constantly which makes you pee even more.

You can fight fatigue by taking better care of yourself but taking better care of yourself requires energy you don’t have because you are too fatigued.

And on and on the frustration goes with multiple sclerosis…

I’m sorry that there were not any winners but I thank you all for entering. I will announce my next contest on Friday, 12/6 and I promise that the prizes will be greater and I will offer more flexibility in the answer to guarantee a winner!

But also as promised, if you are still too stuffed to move and want a little reading, here is a preview of MS Madness: A “Giggle More, Cry Less” Story of Multiple Sclerosis.

 

From Chapter 20 Hey MS, Hug This!

…..What do things like boyfriends, memories, and balancing partying with being responsible have to do with MS? All of them were aging me much faster than I wanted to be aged. And that was completely frustrating! Maybe only a little frustrating as I was already a cognitive mess. But in these months following the diagnosis, all these things started to swirl together in my jumbled brain. It all made relieving, frustrating sense…….

……By my late thirties, I was so convinced I was turning into an old lady far too early that I began to state this fact to people. I had noticed Zack around town before we actually met and even though he claimed he caught me making googly eyes at him, I always denied it.

“I was NOT making googly eyes at you,” I would insist. “I just wanted to know who you were and what you were doing in my town, that’s all.”

After we actually met, he was more the pursuer. He was two years younger than me and I already felt like an old lady, so I balked at dating a younger man. When he asked how old I was I told him that I was eighty-seven. Luckily, he ignored my feeble joke and we started dating anyway.

 

My elderly weirdness increased. My bladder became more obnoxious and soon I stopped drinking beer. One beer and I would have to hang out near a bathroom for hours, at least.

The extreme fatigue came next. Zack and I could never watch an entire movie together. I was always asleep halfway through and would have to finish it the next morning with a cup of my grandma’s tea, sweetened just so. By that time, Zack’s normal brain had moved on to other things so rarely did we ever enjoy or discuss the movie together.

We kept trying though and even went with friends to see the second installment of the Pirates of the Caribbean franchise at a surround sound theater. Amid the bar fights, explosions, and general loud pirate activity, I was asleep.

(For the record, I did not fall asleep during the third and fourth versions as the anticipation of seeing Keith Richards on the big screen was enough to keep me alert.) ……..

 

….Later, of course, I realized all of those issues were not hypochondria but the early symptoms of my strange disease. The peeing constantly was from bladder issues associated with MS.

The fatigue stemmed from my body trying to fight its own immune system that was causing the illness.

The aches were from spasticity, which means that my muscles were going spastic.

The mood swings probably weren’t about MS, but let’s blame MS anyway.

The weird stomach ache was a symptom called an MS hug. A hug? That’s what my bizarre, painful, twisting, almost hospital-going, practically ruining the Portuguese Festival illness event was, a hug sent to me with care directly from the huge MS PAC-Man-looking antibodies in my body.

I thought my appendix was bursting, my friend thought I was pregnant, my cousin thought I needed to go to my grandmother’s and take one of her laxatives, his girlfriend thought I should consume weeds. But no, it was one of many hugs. Hey MS, hug this!…..

…..Even dear friends began to think nothing was wrong with me. Well, that was just fine, until one of the symptoms did come up. Then I was making excuses. If I felt unable to do something, they thought I wasn’t trying hard enough. When I tried to explain why it was tricky, then I was using MS as an excuse.

“You can’t blame MS for everything,” I was often told in regard to my exhaustion, clumsiness due to lack of balance, and my inability to focus on something. I laughed it off when it took me longer to get a joke, or when I had a hard time trying to figure out what was being said when words were spelled out instead of simply stated.

If one of my friends asked me in front of her young child, “Have you seen a-s-s-h-o-l-e lately?” I never got what she was saying on the first try. I had to piece it together in my MS brain.

 

We would be onto a whole different conversation before I figured out what a-s-s-h-o-l-e spelled and which a-s-s-h-o-l-e that friend was referring too. The irony of being an honors college graduate with a major in English who suddenly couldn’t spell a-s-s-h-o-l-e was not lost on me…..

…..Dr. M and I eventually decided I should go to a Vocational Rehabilitation Specialist. At the orientation they told me to think up my dream job and let them know when I met with the counselor what it was and they would help me find it. So I did.

I was writing a lot and thought maybe they knew of a paper where I could freelance and/or a company that needed somebody part time to write their newsletter. I could do that. The counselor told me starving writers were a dime a dozen, so I obviously needed to forget about them helping with that type of work.

What else did I want to do?

“Ummm, how about working in reception? I’m pretty friendly.”

She told me I didn’t need her help to get that job. Probably true, but I didn’t know how much I could make with my state insurance and needed her input on what people with relapsing- remitting MS do for work, when they have symptoms that come and go. In orientation, they had said they worked with people with MS all the time-they must know how people like me managed.

“Oh, you’ll have to figure those things out on your own.”

She was very nice but I was very confused and frustrated and not sure any more what I was doing there. After many calls and different answers and more hold time and confusion I did learn that if I got federal assistance and a part time job, I could not make more than forty dollars a month or I would lose my health insurance. But I wasn’t angry. Just frustrated.

*******************************************************

 

And now for our goodbye to season 17 of Dancing with the StarsJack Osbourne won! OK, officially, he didn’t take home the Mirror Ball Trophy, Amber Riley and Derek Hough did. And well deserved it was- they were fantastic!

But Jack went all the way, coming in third and dancing like he never thought he could! Who would have thought that without any experience at all, he would take his spirit and determination this far! And he happily brought all of us along the journey with him.

Way to go Jack! May you spend some time resting your achy feet and on to the next adventure!!!

 

 

 

Falling Backwards

An up close, in depth, comprehensive look at multiple sclerosis “cog fog”

 

First things first with today’s blog post- please don’t sue me. I did not come up with the name of multiple sclerosiscog fog.” I found it on the internet on two different sites and so I have no clue who to attribute this clever phrase too.

But it certainly fits to describe when your MS cognitive difficulties collide with ongoing brain fog. Thus I am using this expression to help others understand one aspect of “cog fog.”

And yes, I know that I said this was a comprehensive look at “cog fog” and yet, I am only focusing on one aspect of it.  That is lesson number 1. When you have “cog fog” you often have no idea what you’re talking about.

Anyway, tomorrow is the day when we will have to change our clocks. This is incredibly stressful for me. While autumn is my favorite time of year and I actually don’t mind winter, this clock changing thing is horrible.

 

What is it all about anyway? Everyone grumbles and complains about it getting darker earlier, (I think that is what happens.) Why can’t we just leave it to the mighty guy upstairs to tell us when it is time to settle down for the evening and put our PJ’s on? Why stress about it and then try to direct the hour of the setting sun?

I have adorable little relatives in the western part of the country who don’t change their clocks; which is a good thing because they don’t know how to tell time. But their parents and the rest of their state don’t change them either.

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This makes the time difference even more confusing when it changes in my area twice a year. I can’t even remember the time difference once a year. Is the whole concept of some parts of the country manually changing the time while other parts don’t just a huge conspiracy to keep me from calling the little ones hourly just to hear them say, “I wub you, auntie.”

The next stressful thing about this process is getting it right. I can never remember if I am supposed to move the clock an hour forward or an hour backwards. Right up until the minute I do it, I am still confused.

Plus, they “the official people in the know,” say you should change the clock at midnight. What if you are not up at midnight?

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Here’s what happens. I call my mom twenty times that evening and ask her to remind me what I am supposed to do. Exasperated, she will say, “Yvonne, in the fall you move the clock back one hour. So if it is midnight, you would move the clock back to eleven. In the spring you do the opposite.”

“Ok, I will write it down so I don’t forget.”

And then I will forget to write the info down and will call her again.

I try to always do the right thing when I am supposed to do it. So to be prepared, I turn the clocks back one hour before I fall asleep, whatever time that happens to be.

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Then I wake up for a bathroom run and to make sure I am not confused in the morning, turn the clock back an hour again. When I wake up for my crack of dawn bathroom run, I don’t remember if I have changed the clocks already and if I did, did I move the hands back one hour, or ahead one hour? And was that the direction I was supposed to move them in?

The sun outside doesn’t help because the whole point of changing the clocks is to change what time the sun does its sun thing…

To make matters even more confusing for my MS brain, in this new electronic age some things change themselves. I can just never remember which.

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The cable box has a time different from my clock- which is right? My cell phone has an altogether different time, does it change itself? How does it know what the actual time is?

What about the microwave? Who tells the microwave what time it is? And whoever does that, why don’t they tell the stove the time as well?

Next in sorting this mess out, I turn on the TV news. They will definitely have the right time.

Except, what time zone are they broadcasting from? Are they in Eastern, Central, Mountain, Pacific, Oceanic, Astrophysic or what? And does that time zone change its clocks back or forward or not at all?

You would think I could rely on the local news, they MUST have the accurate time. Except I just heard that our local news stations was bought by Fox Television and aren’t they in LA?

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So you without MScog fog” can see how something relatively simply to the rest of the world (or state or time zone or whatever,) can become completely overwhelming to someone with MS. After stressing about this over and over I wind up calling my mom in the morning to see what time it is.

“It’s 6AM and it’s Sunday. Go back to bed!” she abruptly and groggily tells me.

“Is that 6AM yesterday time or 6AM today time?”

Finally, someone helped me to see the REAL importance of this event.

“The fall time change means you get an extra hour of sleep..”

Now THAT is something I can appreciate.

I love sleep and I will take all the extra hours I can get. In order to better appreciate the extra sleep this year, I have decided not to change anything, at least not until late the next day. At that time I will call someone and ask them to tell me what time it is.

Can someone please give me their number? Funny how the operator tells me my mother’s number has been disconnected….

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And now for our DWTS moment- Thank you, thank you, thank you Jack for finally mentioning the fatigue! I have been waiting all season for you to bring up MS related fatigue and how that has got to be affecting you. Of course, when you did, your partner Cheryl Burke did not get it. BUT, she did say the key words, “you have to tell me how you feel so we can be on the same page.”

 

Oh, wouldn’t it be wonderful if all the people in our lives were to put that statement out to us and really mean it? Cheryl must have really meant it because she and Jack then went on to dance an incredible Jive!

And the biggest shock of the evening- Ozzy looked like he actually knew what was going on!

Memorable MS quote of the show- “I feel like I am turning into a zombie,” Jack.

I can relate Jack; I can definitely relate.

 

Vote for Jack Osbourne and his partner Cheryl Burke by calling 1-800-868-3402 up to 60 minutes after the show on Monday nights or by logging onto ABC.com or Facebook.com/votedwts up to 24 hours after.

Image courtesy of Grant Cochrane/FreeDigitalPhotos.net

Image courtesy of digitalart/FreeDigitalPhotos.net

Image courtesy of luigi diamanti/FreeDigitalPhotos.net

Image courtesy of digitalart/FreeDigitalPhotos.net

 

 

 

Too Many Steves

Multiple Sclerosis in the dating world

 

*****The names of the males in this blog post have been changed in order to protect my reputation****

I was talking to friends about the need to change some names while editing my book. I told them that one of the names I had to change was that of my most recent boyfriend, who was also one of the two loves of my life.

(Is it ok to have two loves of your life, maybe three? Especially if one was your very first love way back in high school and into your early twenties. There is that love of my life and the most recent guy and “one who got away” guy. That’s all. Just those three with some problem guys, no way guys, and “what on Earth was I thinking” guys in between.)

 

Anyway, let’s call this guy, the recent one, John. Since I haven’t talked to John in a while and so could not get his permission to use his real name in my book, I had to change it. I changed it to Steve, thinking Steve was a good name. I told my friends that I came up with the name Steve as I had always had a little crush on a guy named Steve Smith.

“But isn’t it weird to give John the same name of a guy you dated?” Serena asked.

“I didn’t date Steve Smith,” I replied. “I just had a crush on him.”

“No, not Steve Smith. But you dated Steve Jones. Remember Steve Jones???”

Serena was right. Not only had I dated Steve Jones but I had actually lived with him for a bit. My MS brain completely forgot about a total relationship. It wasn’t a terrible relationship either. It was actually a fun time in my life. How could I have forgotten all about Steve Jones?

 

This was very concerning. Memory loss with multiple sclerosis is very common. But forgetting an entire relationship was on a whole other level. MS has contributed to making my dating life pretty much non-existent. If it starts erasing memories of the social life I used to have, then what will I do???

Being single is one thing, but having always been single, especially if you weren’t? That is just way too much.

People ask why MS has affected my dating life. The simple answer is the fatigue. No matter what people say, dating takes work and work is exhausting. And since I am already pretty fatigued all the time, I feel like a zombie.

 

I’m not picky but I am not sure that it would be good idea to date someone who wants to date a zombie.

Who do zombies date anyway? Not vampires. Zombies don’t have much blood and what little blood they do have is filled with interferon and other meds. Not a good match for a vampire.

A werewolf? Do zombies date werewolves? That seems pretty hairy to me.

 

On and on the thinking goes and just like that, I am even more exhausted just thinking about dating.

But in case you think I am bailing on this dating thing too early, let me give you an example. I was invited to a social gathering, a party if you will. With my first glass of wine in hand I started talking to a guy as it turned out we had something in common. We talked about what we had in common. Then I realized we were talking!

I didn’t know this guy’s story. He was about my age but was he single? Nice?

I started to think too much. My legs started to hurt from standing there talking to the guy. I started to panic and with only two sips of wine, the panic was not subsiding. Should I continue to stand there and gulp down wine while I attempted to continue this conversation?

 

It seemed too much. Getting ready for the party had been tiring enough. What I really wanted was a nap. I couldn’t take the stress. And since stress is not good for MS, I ran away from the guy into the lawn chair in the middle of my safety net- ie, the people who had invited me to this shindig in the first place.

Fortunately, the chair happened to be right near the table holding all the wine.

Then I proceeded to beat myself up for running away and hence, just gawked at the guy during the whole rest of the event. That, of course, made him think I was a weirdo. I prefer the term zombie.

Fast forward several weeks and I get invited to another shindig. I find a table with friends and high chairs. I am mostly through my glass of wine when I realize that a guy I recognize from my party days happens to be standing directly behind me.

This was a somewhat fancy event and I was dressed up a bit and had actually put on some make up. Girly girl make up, not zombie cover up.

 

I was sitting, felt giddy with the wine and decided I would not repeat my mistake from the last social event. I re-introduced myself and the guy and I chatted for quite a while. He was there alone and I wasn’t panicking. I could do this chatting/flirting thing.

Someone called to him and he moved away. Eventually I moved away from the area as well and then it was time for my friends and me to leave. I didn’t talk to him again but felt confident that I had taken a step forward, moved out of my “destined to be single forever” shell.

Then I caught a glimpse of my reflection in the car rearview mirror and realized I had a bit of pesto from one of the appetizers stuck in my teeth. That made me re-analyze the whole pesto added conversation and I got tired all over again. I’m sure the wine didn’t help. I went home and, you guessed it, took a nap.

So you see, dating is very fatigue inducing and stressful to me and my MS. I don’t really mind being single as I have had a pretty fun and interesting social life in the past. Which is why I need to remember it and why forgetting Steve was very traumatic!

Luckily, I had Serena to remind me. That’s what friends are for.

At least until I find me a zombie.

I will name him Steve.

***I take this blog writing gig very seriously and always try to research what I am writing about. Turns out, there is a dating site for zombies! Who knew? If you know a single zombie looking for love please direct them to ZombieHarmony. Their tagline is “because the apocalypse doesn’t have to be lonely…”

 

***Further research shows that the site is no longer active. Guess all the zombies have been matched.  Damn.

***For observant readers interested in my future book, you read right. I am editing away. The goal is for the published (still unnamed) work to be released just after the New Year. If the apocalypse doesn’t get me first…

 

 

 

Little Bodies, a Vest and Maybe a Blue Tit

The MS plagues of July

The calendar was pretty full from early June to mid-July. Both with fun things and not so fun things. Stressful things and relaxing things. Things that I added to the calendar and things that were added to my calendar for me.

In the MS balance beam of energy, the time was not allotted as well as it should have been. But we MS’ers try to roll with the punches.

I was surviving and resting as much as possible. And then July rolled in and decided to throw some extra punches of its own, just for fun.

 

The first bummer was that my landlord announced he was selling the small house/large cottage I have been happily living in for almost six years. This is the worst time of year to be looking for a place to live in my area as the tourists gobble up what living quarters they can, at the most ridiculous prices imaginable.

Simultaneously with this announcement, came a heat wave of extreme portions with the worst humidity we have seen in a long time.

My little rental has pre-fab storm windows that make a window air conditioner nearly impossible to put in. I survive with a little portable unit that needs to be emptied constantly, usually at a rate of every two hours. This year, the humidity has been so bad, that the draining ramped up to every hour or more.

 

Needless to say, I was a miserable mess. Unable to think, and barely able to move. And when I did move, my balance and coordination were completely shot and I became klutzier than I ever have been. My body is covered in bruises from walking into things, mostly into my portable ac, every time I had to drain it.

At some point my head cleared enough to remember that the Multiple Sclerosis Association of America had sent me a free cooling vest and maybe I should try it. When it arrived, I had luckily thought to put the ice packs in the freezer and so they were ready to go. I pulled them out, dropped them as they were slippery and I was clumsy, but managed to stuff them into the vest.

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Daddy was a lawman. I know what you are thinking, where did that come from? Her MS brain has really gone off the charts. I don’t know where that line came from either, especially since Southern Belle I am not. But it popped into my head as I tried on the vest.

My father was a police officer but I was more likely to tell people that by saying “my dad’s a cop,” rather than “daddy was a lawman.” The fact of my dad’s life’s in law enforcement is the only explanation I can offer of why I picked the dark blue color for my vest.

I put it on and immediately looked like I was wearing a bullet proof vest. Either that or I looked the opposite of fashion protection in a suicide bomber look. Regardless, it didn’t seem safe to leave my house with that thing on- don’t want to freak out the neighbors just before I move away. I could wind up on a watch list of some crazy kind. But I must say, struggling through the misery of the heat and humidity, the vest did help when trying to exist in my sauna of a home.

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One of the days on the calendar consisted of a long drive in an air-conditioned car and so I was happy. I came home refreshed and expected the muggy air of my house. What I didn’t expect was to be swarmed.

Opening my front door I was confronted with a ton of house flies. And when I say a ton, I mean a ton, not just an annoying one or two. It looked like something out of the Exorcist and was very upsetting. I immediately left and drove to the hardware store for help.

I bought some disgusting but guaranteed to work fly strips. With the sweat and tears dripping off my face, I tried to hang them and managed only to cover myself and my home in the sticky mess; the sticky, very hard to clean mess.

 

They caught one fly. One poor dumb fly who was then a message to the others “stay away from this stuff-it’s a killer.” I had to resort to the old fashioned method of killing each with spray which then clogged my lungs and made me gag.

I killed over thirty that day, counting their little bodies in disbelief at how many there were. I didn’t want to kill anything and tried to get them to leave via an open door but that only invited more in. For several days I was constantly spraying and swatting flies.

It’s a mystery why they choose my home. I didn’t have any food out and I have yet to find a hole in any of my screens. It seemed a bizarre phenomenon until I mentioned it to others who told me they had it happen to them, one woman in the middle of winter. I would have called Ghost Busters for sure on that one…

 

Just as mid July came around and the scheduled chaos was about to end, I came home from looking at a possible rental to find a dead blue bird at my front door. Squeamish and stressed, I freaked.

I should maybe have said a prayer for the poor thing but my brain was too fried and fatigued to think that through. I thought I should do something proper like bury him, but the only shovel I had was a snow shovel.

I am not proud of this but I did the only thing that seemed to make sense to my MS body and brain. I collapsed on my bed in front of the ac and when draining it, swatted a fly or two.

Nature and bigger creatures, take their course and when I came outside the next morning to pay my respects to the dead bird, his body was gone. In its place were several blue feathers.

 

I worried that the demise was the final straw in what seemed to be a summer of plagues and was sending me the ultimate message of doom. I went to the internet to find out what his death on my doorstep meant.

First, I tried to identify him. He was clearly not a blue jay. Looking at birds I decided he was either a simple blue bird, well he was a blue bird but that is actually a name of a bird species, or, he was a bird called a blue tit. I’m not kidding. That is a bird name.

 

It probably wasn’t my bird corpse as they don’t seem common in my area, but I couldn’t help thinking of him as a blue tit anyway. Who named the poor guy- the porn industry?

Researching further I learned that what his death on my door meant was less death, but change.

The next day the heat broke and a new rental came through. So as much as I have loved living here, the plagues of July seem to be telling me it is time to move on. A change is coming, and although I couldn’t see it when the thermostat hit 98, it’s a good thing.

My new rental comes with a normal ac and right there is the start of something better. So while I will be crazed with sorting, packing, cleaning, and moving six years of my life, and trying to fit in some natural Vitamin D without too much natural Vitamin D, I do live near the beach after all, this tricky time too shall pass.

And here is the MS lesson in all this. When you are planning your balance beam of energy, plan on planning for what you haven’t planned. What is that plan? You can’t know, just plan on it anyway.

That, my friends, is the nature of multiple sclerosis….

Note- Kidding aside, I am very grateful to the Multiple Sclerosis Association of America for the vest, which does greatly help. Just don’t wear it to an airport. Unless you want to catch the attention of a cute TSA agent!

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Like an MS Rolling Stone

Classic rock for MS’ers

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I have been terribly remiss in keeping you, my dear friends, posted on important things going on. I have completely dropped the ball on filling in the details. For that, I greatly apologize.

I know you have all been on pins and needles, different pins and needles from the ones your MS usually puts you on, to hear how things went in June. Did I survive the Rolling Stones concert over one month ago?

Well, finally, here’s the scoop.

I did survive and it was absolutely amazing!

I attended the show with my Rolling Stones fairy godmother and another friend of ours. Three hot, classic rock chicks psyched for some great music hit the road. And incredibly, we found Keith Richards stranded by the side of the highway in need of a ride to his own show!

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We picked him up and he was very grateful.

Wait, something doesn’t feel right. Oh, MS moment time.

That didn’t actually happen to my friends and me. It happened to some people I don’t even know but I saw it on the news. And the rock star was not Keith but Dave Matthews. Sometimes my MS brain confuses things here and there.

We did however get to meet Mick outside. I have proof-please see the photo below of my Rolling Stones fairy godmother and I posing with him.

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I know what you are thinking. That is not Mick but just some guy in a Mick Jagger mask.

We thought that too. So we asked him and he assured us that yes, he was the real thing scoping out the before concert crowds. Exciting!

But here is the main point- multiple sclerosis is no match for the longevity and talent of the Rolling Stones! Not only did I survive but thrived through the concert!

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I didn’t need the embarrassing ear plugs as the music was just pure classic and of incredible sound quality. Beautiful music to my super sensitive ears- total score.

I only needed one bathroom break and since our seats happened to be somewhat near the ladies room, I only missed one verse of Midnight Rambler which was broadcast from the restroom speakers anyway.

And, I was only mildly fatigued. My unusual energy didn’t come from any legal speed prescription from my neuro- my MS brain forgot to ask for a new RX.

Perhaps this energy came by osmosis from Mick to me.

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How does he do it? Mick just doesn’t stop. He sang, danced and ran around more than my two year old nephew. And even my nephew needs a nap after two hours. Mick went for almost three.

It was a great night in the city of Boston with Mick even sporting a Bruins jersey to add even more perfection to the show.

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Since I miraculously managed to enjoy the show without too much fatigue, I also wasn’t experiencing any brain fog. As such, I was able to discover something new about the Stones catalog.

I have mentioned before that Keith had an aunt who died from multiple sclerosis and so he is sympathetic to our plight.

What I didn’t realize before this June night was that so much of their catalog is written specifically for us MS’ers.

Thank you Keith!

Don’t believe me? Please allow me to offer these numerous examples just from the 22 song set list of the first Boston show.

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Sway– “It’s just that demon life has got me in its sway”

You’ve got the Silver– I do. I do have the silver. Between the brace, the cane, the wheelchair and the medic alert bracelet, we MS’ers sure do have some silver.

Start Me Up– Who needs Provigil when you’ve got Mick, Keith, Ronnie and Charlie to get you going?

Jumping Jack Flash– the ultimate spasticity song if ever there was one!

You Can’t Always Get What You Want-Tell me about it. I would like one night where I don’t have to get up to pee 20 times. How about a night when I only have to get up ten or maybe just eight or nine times? That’s what I want. Is that too much to ask?

I’m Going Down– Please. If that is not an MS anthem then I don’t know what is….

One More Shot– As in, one more shot before I can start Tecfidera?  Yea!

Doom and Gloom– “Feeling kind of hurt. Sitting in the dirt. All I hear is doom and gloom.”

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Before They Make Me Run-“….pills and powders, you can choose your medicine….” Keith predicted the end of injections back in the 70’s!

Midnight Rambler– A song describing an MS’ers brain on one of their middle of the night bathroom jaunts.

Sympathy for the Devil– the devil is a veiled disguise for the insidious illness known as multiple sclerosis. And it deserves no sympathy which is the point of the song. “Hope you guessed my name. But what’s puzzling you is the nature of my game…”

Get Off of My Cloud– An MS’er’s response when non-ms’ers say something that ticks us off! “Hey! You! Get off of my cloud! Don’t hang around cause two’s a crowd…”

Tumbling Dice– I didn’t fall exactly, I just took a tumble with one of my MS friends. “Baby there’s a fever in the funk house now. This low down bitchin’ got my poor feet a itchin’

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Satisfaction– As in I can’t get no….”Cause I try and I try and I try and I try, try, try”

So there you have it. Over half of the Stones set list for just one of their many concerts are multiple sclerosis themed.

Don’t believe me? Think this is just a coincidence? Well, I have proof.

I asked Mick when he posed for the picture with us and he said it was true. And this Mick wouldn’t lie, would he?

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This MS Moment is Brought to You by the Letters ‘F’ and ‘U’ and the Number ‘2’

Multiple sclerosis meets therapy meets Sesame Street

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Dear Friends,

This week’s blog is an oldie but goodie and one of my favorites.  I chose to re-post this one as I am feeling a little overwhelmed this week.  However, it is important to note, I have not yet returned to therapy.

It was Elmo that finally did me in. Yes, Elmo, as in Tickle Me. But maybe that is not fair. While he was the catalyst, it was really his helpful, female puppet friend Betty Lou that was the root of my actual demise.

It didn’t help that I came late to the magic and wonders of Sesame Street. Growing up in the early seventies, public television was a somewhat radical concept and the new children’s programming seemed to threaten subversive and counter-culture undertones in my mom’s mind. The Brady Bunch and The Flintstones were much healthier- nice, safe family values.

 

As I grew out of my toddler years her television concerns continued. The Partridge Family was NOT ok. The fact that Mrs. Partridge was traveling around the country in a bus and allowing her children to perform rock concerts in front of out of control teens was EXACTLY what was wrong with the country. At least that’s what my mom always said.

By the time she became a grandmother she relented somewhat and relaxed her television rules. I would watch Sesame Street with my four year old nephew and we enjoyed it immensely. I remember rolling around on the floor laughing and crying after a recent breakup with some guy or another while Patti Labelle sang How I Miss my X to a very sad looking X. I thought the scene was adorable and was speaking directly to my heartbreaking soul.

“Drew-don’t you get it? Her ex is the letter X! Isn’t that a riot? And look, X misses her too. They’ll get back together- I just know they will.”

My nephew looked at me as though I was nuts and ran off to play with his toy fire engine.

Anyway, back to modern day. I was in the midst of a horrible month filled with paperwork, appointments, highs, lows, good news, bad news, good advice, bad advice and whatever else one can throw into a month. After a frustrating breakdown during appointment number six, it was recommended that I see a therapist.

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Thus it was that I was at appointment number seven in the lobby of the one therapist that took my insurance and answered the phone when I called. Much to her dismay as it was her lunch hour, I was an hour and ten minutes early. No, I hadn’t bothered to check what time I was due there. My MS brain knew the time.

While she handed me more paperwork to fill out I asked about her practice.

“No,” she told me, “I don’t exclusively treat children.” It was hard to believe based on the emotion charts, animal posters, blocks, and teddy bears that sat in her waiting room.

I started the paperwork while I listened to her pack up the hundreds of Legos I noticed on the floor of her office when she opened the door to greet me. My mind continued to swirl with all that had piled up that month and of all the things I had to do. But it was my fault I was early (apparently my MS brain knew something that her planner and my calendar did not). And so, with this round of paperwork done, I grabbed the thing closest to me to read.

 

It was a book from a Sesame Street series called Sesame Street Library. In it, loveable Elmo ventures into the library looking for a Little Black Puppy. As he searches he gets distracted from his important task by story hour. I do that all the time. Could Elmo have MS too?

He meets his buddy Betty Lou and, when asked, remembers his mission. Betty Lou offers to help. She gives him all library info he could possibly need and then produces a book called, you guessed it, Little Black Puppy.

Poor Elmo has been misunderstood. I can relate to that too. More evidence our furry red friend might be afflicted with a myelin damaging illness. He explains his plight again. He is looking for an actual puppy that is missing and happens to be black and little.

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Again, the kind Betty Lou wants to help. Back to the card catalog they go and then to the stacks where she produces a book called How to be a Detective.

“There Elmo, you can read this book and then you will know how to find your puppy.”

It doesn’t end there. Betty Lou is a dear friend after all and really, really wants to help so she proceeds to find several other detective books to help Elmo in his search. Elmo excitedly thanks her.

That’s when I lost it. In the lobby of the therapist’s office who doesn’t just work with kids even though the only things in the lobby are kids stuff, I proceeded to yell at Betty Lou.

 

Betty Lou that is NOT helpful!!!!! What kind of friend are you? I know you mean well but if you really want to help, start looking for the damn dog! How long do you think it will take Elmo to read all those books before the search begins?

After reading the books he will have get the detective kit and then start questioning people and calling insurance companies and hitting search engines and all kinds of crap that take time he doesn’t have. Can’t you just help look in corners and yell ‘here Fido’ or something? How bout you read the damn books and then get back to him?”

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Poor Betty Lou. Perhaps she didn’t deserve my wrath but she was not alone. Elmo was next on my “need a good talking too” list.

Elmo, don’t be a putz! Tell Betty Lou what she can do with her freaking books and where to go. Don’t stand there with that stupid smile expressing all kinds of false gratitude. Throw the books at her and start looking for the dog.”

I suppose the moral of the story was that you can find anything in a library. But I have yet to find a dog there and in my current state, and not being a kid, the message was lost on me.

Perhaps my outburst caused the therapist concern. She called me in and handed me ten more pages of paperwork to take home and fill out at my leisure. She asked me what I was looking for, therapeutically speaking. Then she told me where I could research the answers to what I was looking for. She recommended some books. I smiled and expressed all kinds of false gratitude, just like Elmo.

I am even more convinced than ever that MS has got him too.

 

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