Category Archives: MS General

The Curious Case of Multiple Sclerosis Part 3

Can’t Stop Going

Last night happened to be one of the worst MS bad bladder nights I’ve had in a long time.  As such, I feel wicked crappy today. Or, I guess I should say, wicked pissy.  

This is getting old, very old.  I’m so frustrated that I thought I should write a blog about it.  Then I remembered I already did.  

So for those of you who can relate to MS really pissing you off, this old post is for you.

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One would think that a subtitle called “can’t stop going,” would refer to a good thing, something you would find on an inspirational poster, or in a pop song geared towards the tween set; an affirmation if you will. But when it comes to this week’s blog, you would be wrong.

Very wrong. So wrong that I may just want to get violent and punch something wrong. When something makes me want to become violent, what can I do but write about it? At least writing keeps me out of jail and protects my already tingly fingers from more aches.

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When I say “can’t stop going,” I am actually referring to one of my insidious MS symptoms, bladder issues. In my case, I have to use the bathroom constantly and for normal people, that is the end of the story. You go, you’re done; at least for a few hours.

Not for me. No, my bathroom going trips have become so constant they are hard to believe. Which is why they are part of my series on The Curious Case of Multiple Sclerosis, blog posts that explore the particularly cruel irony of some aspect of living with MS.

(If you are bored, see prior posts Part 1 that discusses aging and Part 2 that discusses the difficulty of maintaining a healthy diet.)

But back to my current problem. If this rant sounds familiar it is likely because I have ranted about it before, a lot. I have even used the line, “these bladder issues are really starting to piss me off.” (Pun totally intended.)

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The line is not mine but my sister Laurie’s and before I used it as I thought while accurate, it was also funny. That was when my bladder issues happened at night and while it made trying to sleep frustrating and difficult, it was manageable; as long as there was something good on TV at 3 AM.

But lately, the frequency of having to go relentlessly and of then not going completely when I do go, is happening throughout the day as well. My bathroom trips are turning into revolving doors. In the time it takes me to wash my hands and leave the bathroom I have to go again and repeat the process.

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Really, what is the point of going at all?

The irony of this is water. Lately, in fact just as this issue started acting up, all I hear is how good water is for you.

I know this. I have given up diet coke and am drinking a lot more water. I have also learned to drink it earlier in the day to avoid the night problem so I can sleep. Now I just need to spend the day in the bathroom.

The medication I take for this problem does help but only a little bit. And it causes wicked dry mouth which means more water. Seems everywhere I look I am reading articles on how dehydrated people are and how crucial water is to your diet. Most people can handle this added H2O intake.

Me, I can handle it great. As long as I don’t need a life outside of the bathroom.

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I should discuss this with my neurologist but as I have mentioned before, he is kind of cute. How can I possibly talk to him about this? And even if I did, I am afraid the next step in treating this issue will involve tools that I don’t even want to think about. (Private message me if you have questions about this.)

But I know that I should bring it up and I probably will at my next appointment. (Maybe by then it will have gone away?) Until then, how do I deal?

One MS professional told me to do Kegel exercises. In case you aren’t aware, Kegel’s are pelvic muscle exercises Cosmopolitan recommended in the 80’s for a more exciting benefit. In a Kegel irony of their own, they were developed by a scientist, which likely makes you unlikely to be interested in the exciting benefits.

(Again, private message me- I am trying to keep this blog at a PG rating.)

The thing about Kegel’s is that they are super easy to do and can be done anywhere. Even in the bathroom.

The MS irony here? I forget to do them! Even when I write myself a note, I forget to read the note! Easy exercise- rare and good. Forgetting the exercises-very, very bad.

I heard that this particular bladder problem can lead to UTI’s which are also very, very bad. One way to prevent that is by drinking more water. (No, I am not kidding. According to the internet, that is a legitimate way to deal with this problem.)

Another way is to eat cranberries. I am a New England girl and so cranberries are my world. I can even tell you how they are harvested. Oatmeal raisin cookies? No way. Oatmeal cranberry cookies- awesome.

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But I am on a health kick so I decided I would get my cranberries in an organic, non processed, no sugar way. Raw cranberries are a little bitter and so I poured a glass of super healthy juice. And then I immediately spit it out as it was disgusting.

Apparently, even for people born and bred in cran country, you still need a little sugar to appreciate them.

So what’s a girl to do? I added cranberry tablets to my daily meds list which meant more water to get them down and then headed to the busiest room in my house. If you are looking for me or my TV, we have permanently moved into the porcelain and tile room.

And if that pisses you off, well, you likely have a bathroom of your own…

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One Pill or Another; Not Gonna Getcha, Getcha, Getcha

A tale of multiple sclerosis

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I dropped a pill while I was driving.

My fault for multi-tasking.

So what if I was driving, texting, eating pizza, grabbing the pill AND trying to open my water bottle?  My neuro-psychological testing did show that my multi-tasking skills were pretty much shot.

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Before you panic, I’m exaggerating.  I wasn’t really texting and was only thinking about eating pizza- perhaps for lunch.  And I was stopped at a red light.  But there were people behind me when the light turned green and so I couldn’t locate and pick up the little pill within the 5 second rule that claims that no matter how disgusting my car mat was, I could still swallow the damn thing.

5 seconds was not enough time to even pull over, park and find the pill and so I decided to leave it be.   The problem was, that was the only pill of that prescription that I had with me.

I had put it in a little plastic case and now it was under my brakes, hanging out with old M&M’s and stale cracker crumbs.  (You know those commercials that say M&M’s don’t melt in your hand?  Well, let me tell you, they do melt on your car mats if the temperature hovers over 90 degrees and you’ve stepped on them a time or two.)id-10046558

If I had brought the pill bottle I could just grab another one but I hadn’t brought all of my prescriptions with me.  I couldn’t.  Where would I put them?  I drive a Camry, not a mini-van.

This little bit of clumsy means I would go without that pill for one day-no biggie.

But it was.

See, this particular pill is one I take because my MS disease modifying drugs give me wicked aches, which means I need to take Aleve to help combat them.  Aleve gives me wicked bad heartburn which, it turns out, is not only terribly uncomfortable but dangerous in constant measure.  The pill I dropped was a prescription super duper antacid because Larry the Cable Guy has no idea how difficult MS heartburn is compared to his regular old tailgating heartburn.

Who knew the guy was such a wimp?

I spent the day with the horrible heartburn which meant no pizza for lunch which meant nothing really for lunch as I couldn’t remember foods mild enough to eat that my stomach would tolerate.   I did try.  That chocolate shake seemed mild enough but no….

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It seemed silly to stop somewhere and buy over the counter antacids because for one, they are lame and for another, I’ve got about four open bottles at home and what a waste to buy another. In fact, the bottles I have I probably did buy on the road one day after messing up the prescription one.

By the time I got home I didn’t know if I should take the pill so late in the day. I mean a fresh one, not the one combined with beach sand and gravel.  It was supposed to be a shot night which meant no Aleve which meant screw doing my shot which meant there went my Mon/Wed/Friday schedule I tell my MS nurse I stick to.

I had plans the next night where I wouldn’t get home until late which meant if I did the shot then, Aleve or no Aleve, my next day would be ruined by post shot aches-the later I do my shot the worse the aches are.  And so it goes.  If I missed that then I would be really off schedule on the important drugs all because I dropped a slightly less important one.

id-100374013This is one of the ways MS likes to mess with me.  Dropping a pill shouldn’t be a big deal in the grand scheme of things.  But it does cause some altering and resetting and re-balancing and re-figuring for the next 48 hours or so.

It reminds me of the time I borrowed my friend’s GPS and accidentally took a wrong turn.  The device freaked out and started stating RECALCULATING in seriously important letters and tone.  It was kind of funny how upset it got; I started purposely taking wrong turns just to shake it up a bit.

This is what I needed to do with my drug taking schedule- RECALCULATING!  RECALCULATING!

And in this case it was just a pill due to a pill due to my MS shot!  I can’t even think about what would happen if I dropped one of my actual shots.

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(Well, probably nothing- they have a little cap on them that keeps them sanitized until you plunge them into your butt or arm or tummy or wherever….   You could drop one into a well, rappel down the side of the well, fish the shot out -all of which you would do because those things are ridiculously expensive- and still stab yourself with the injection.)

So what does this little tale have to do with MS?  I offer it to explain the unusual way MS insists on taxing our minds, keeping our brain cells working so to speak.  That constant RECALCULATING is exhausting!

And people wonder why my MS friends and I are so freaking tired all the freaking time!!!

PS   Does anyone want to help me clean my car?  There’s some free M&Ms in it for you…id-100135056

 

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No Summer Lovin

An MS dirge

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                                                  Summer lovin, had me a blast

(NOT!  Unless it was a nice big blast of cool air from my A/C)

Summer lovin, happened so fast

(Don’t I wish!   These days are dragging already and July’s not even here yet)

….Tell me more, tell me more

Well, since you asked….

(Italicized words are lyrics from “Summer Nights” from the musical Grease.)

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Vitamin D sparkling directly from the sun is supposed to do wonders for people living with MS.

(There’s a reason orange is the official MS color.  Well, that reason and the fact that all the other cool colors were taken by other important causes.)

Despite this, summer and I are not friends.

The fact that I don’t like summer (and really, really don’t like spring because it’s a long drawn out time where the rest of the world is getting ready for summer,) is unpopular.  For most people, July and August are their favorite months of the year.

Please allow me to state my case on why I disagree.

First of all, summer is hot. Only in the insanity that is life with a chronic illness would something that is ultimately good for you, (ie natural vitamin D,) also make you feel miserable.  And heat does make me miserable my friends, trust me.

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If you don’t believe me, ask the cute UPS driver who remarked what a nice afternoon it was when he dropped off my monthly meds.  My vicious reply so frightened him he hasn’t been back in days!

Of course, he’s not due back until next week but still, I was pretty scary that 78 degree day when he stopped by.

Then there are the bugs.  I try to stay out of their way, “you stay out of my house and I’ll stay inside and let you wreak havoc on my yard.”

But they refuse to cooperate and it’s hideous.

Earlier this month I went to a graduation party where everything was covered by these furry, disgusting caterpillars. I guess this is a prevalent year for them and we only have to wait for a bit and then these horrifically gross creatures will turn into gypsy moths- oh the joy.

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Not long after that I went to remove the change in my pocket and I felt something squishy.  I pulled my hand out and saw that the fingernail of my middle finger had impaled a small green bug that had managed to squeeze his way into my pocket.  The head part of it’s body was on one side of my fingernail and the rest of him on the other.  I’m still cringing about that little foray into the blissful days of summer.

And then there are the mornings where we should delight in waking up to cool breezes from windows left open all night.  That MIGHT be lovely except that this is also the time of year that people get yard work done. But, they also want to enjoy the beach and so the yard work must be done super early.

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Hence it was that the lovely sunny morning turned into a headache and then a body ache of ultimate proportions.  It was 6:45AM when my neighbor’s landscaping crew arrived.  Right outside my window one guy started the mower and the other guy started the weed wacker.

(Weed wacker would be a funny name if it’s screeching noise wasn’t so dreadfully painful to my super sensitive ears.)

Both guys had headphones.  I did not and the motor sounds pierced directly to my brain.

When the landscapers woke me up it was the middle of the night still. Due to my bladder issues I had only gotten five of my needed 10-12 hours of sleep and the day was expected to be a busy one.   I closed the window and covered my head with a pillow.  Right away it got hot and added additional misery. ID-100224548

I thought of calling the police as there must be an ordinance against that type of work so early but I worried about being THAT neighbor.  You know the one-Mrs. Kravitz from Bewitched or Mr. Roper from Three’s Company.  Or even Millie from my own childhood neighborhood; the cranky lady who kept all of our balls and Frisbees if they landed in her yard.

Of course I keep ear plugs for times of travel as airplane noise is also painful.  And of course I was out of them.  I tried cotton balls but they didn’t work.

The best solution was a brilliant one.  Turn on my A/C and that steady sound will help drown out the horrific racket outside as well as cool me off.  But since my head had already been affected so badly, I didn’t think up that idea until twenty minutes after the landscapers had finally stopped, over an hour later.

And just like that, my summer day sucked and was complete with pain in the brain, no thinking skills to speak of and just over all extreme fatigue-riddled, summer induced grouchiness.ID-100174457

All of the above just reinforces my dislike of the season. And it bothers me as I remember how much I enjoyed summers past.  It used to be that I could function on only a few hours of sleep, hit the beach, work at night, go out drinking with my friends and repeat it all the next day.

I miss that.

I miss the days when I wouldn’t dream of missing fireworks- bright colors in the sky with explosive sounds, cool!  Now I could care less.   And that just doesn’t feel so good.

Yes my friends, only a condition like multiple sclerosis can turn a fun song from a popular, campy musical into a ditty of misery.

Sure I could lament how the bad things of summer have started to beat me up in recent years and that is true.   But what I’m really struggling with is the mourning of fabulous summers past.

Even while I want to skip the fun invites I don’t want to skip them.  I feel guilty for skipping them, and get mad at myself over and over again.

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It’s a vicious cycle.

And so, with all things multiple sclerosis, I try to balance.

Maybe I’ll skip some invites but take part in others.

Maybe I’ll get extra strength bug spray and venture out once in a while.

I do live near lots of beaches- maybe I’ll go to one and cool off by jumping into the ocean, even if it means that is all I do that day.

I’ll weather (get it, weather,) these months as best as I can even if I do enjoy changing the lyrics to songs about summer and get irritable every once in a while.

Seems like that’s what MS is for….

But I’m definitely getting noise reduction ear muffs!

Happy Independence Day my friends! 

May you have a bug free, fun filled holiday!

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H2O a Go Go

Multiple Sclerosis advice

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Yes friends, this is a repeat. But my brain has been a little slow lately.  And since this is one of my personal favorites, here you go….

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.

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“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.

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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.

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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.

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“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.

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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.ID-100207125

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?

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I was eager for an answer and good advice 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.

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“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.ID-100307529

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…ID-10036921

What is the craziest advice you have ever gotten?

 

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Shower Time

A new multiple sclerosis skill

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People not living with multiple sclerosis or another chronic illness can’t possibly understand the fatigue we talk about unless they have actually spent hours trying to find the energy to take a shower.

It doesn’t matter if my achy body slept in til 11 or I had to get up at 7 for Mass.  (What is up with 8:30 Mass?  My Christian friends might disagree with me but my reading of scriptures says that worship is not appropriate until the worshiper is wide awake, usually after 10:30.)

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The plan for this particular day included finishing (and actually starting too) a writing project I had known about and been thinking about for months.  It was due at midnight. Showering helps me think through ideas but getting into the shower has become a lot of work lately.

It shouldn’t be.  Especially on this day.  This was to be a quick shower. I wasn’t going anywhere besides my desk.  I didn’t need to wash, condition or style my hair.  I didn’t need makeup.  All I needed today was a quick rinse, soap, rinse again, and dry.  Easy.

I probably didn’t even need a shower except that for me, my secondary illness is germaphobia so going without is out of the question.

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I drank my tea.

I ate my breakfast.

I answered my emails.

I sorted through my daily meds.

I made my bed.

I posted a funny baby video to Facebook.

I watched a DIY video on how to make a cheap bed for my dog which was pretty silly since I don’t have a dog.

I thought about my writing project.

I thought about why taking a shower is so exhausting.

I started this blog.ID-100165569

What makes a shower so exhausting?  Is it the standing? The water temperature? The slip and fall concern?  Is it the multiple steps even if the multiple steps are so simple we should be able to do them without even thinking about them?

I really didn’t know but I had to figure it out.  I had things to do and they started after I finished my shower.

I thought that music might help through the getting clean process and so I turned on the Music Choice channel.  I normally go for classic rock but today the 80’s felt like better shower music.

The channel was playing Too Shy by Kajagoogoo.  The music notes said that the lead singer left the band to pursue a solo career in the 80’s.

“Well how did that work out for you Limahl?” I snickered.

Before I knew it, I was Googling Limahl.  Turns out his solo career went fine.  But he was definitely cuter in the 80’s.

me capturing the 80s

me capturing the 80’s

Then again, weren’t we all?

I  v— e—r— y  s—l—o—w—l—y headed to my bathroom.  It was shower time.  Since I had 80’s music on shower time turned into Hammer time which made me think of MC Hammer.  Thus, that was the song in my head when I finally got into the shower, over three hours after waking up initially.

Taking a shower should be automatic and NOT a big deal.  It is such a minor part of my day that I don’t even write it down on my “to do” list; and I write EVERYTHING down on my “to do” list.ID-10094176

Post a funny baby pic to Facebook– scratch that right off.  Done and done!

In the years before MS symptoms started rearing their ugly and obnoxious head, taking a shower was how I kick started my day, not something I had to work up too. But multiple sclerosis can change many things both huge and insignificant.

Still, I refuse to let MS completely beat me up. Whenever possible, I go for the positive.

Now dressed and back at my computer and finally starting my writing project a thought occurred to me.  Yes, it was ridiculous how long it took me to do such a routine task.  But look at all the things I accomplished in the meantime.

Those cute baby videos don’t post themselves you know!

Come to think of it, I was pretty impressed at the things I had done while I procrastinated the soap and water part of my day.ID-100127363Back in the old days I didn’t have such procrastination skills. Procrastinating meant zoning out in front of the tv while some sitcom I had seen hundreds of times broadcast canned laughter.  I would literally be a useless clump of procrastination nothingness.

Now look at me!  It takes quite the skill to be able to procrastinate at this level.  It is not for the weak or faint of heart.

Neither is MS.

I decided that this skill I’ve developed since my diagnosis is nothing to disregard.  I’ve entered into an elite society of professional procrastinators and I couldn’t be prouder.

I don’t want to pat myself on the back too much but MC Hammer’s words lingered in my brain.

Hey you regular, amateur procrastinators- “You Can’t Touch This!”ID-10056127

March is MS Awareness Month and we only have a couple of weeks left!  If you like your awareness brought to you with a giggle then please check out my book, MS Madness!  A “Giggle More, Cry Less” Story of Multiple Sclerosis.  You will definitely giggle.  It says you in the title!

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Another MRI? More Major Radioactive Insanity

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It’s time for another MRI later this week.  This will be my 7th. Or 8th.  Or maybe this is the 9th.  Who can tell anymore?  Despite all the time I have spent in the tube, I thought I should review this old post to remember some of the lessons I previously drafted.

2013 started in my world with two afternoons of MRI’s, my fifth set since my body started tingling all over, and not in a good way.   You would think that having previously undergone four MRI’s in a three year period, I would know what to expect.  And since I am generally not claustrophobic, the process wouldn’t be that horrible.   But each time I walk in, I have completely forgotten lessons learned in the past and it is like I am having this test for the first time.

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This year, however, I got smart and thought to write down the things I learned so that I will be better prepared for the sixth MRI series.  And since I will forget where I put this list, I am publishing it here so that maybe some of you can remind me of these lessons when I need them.  Feel free to adopt any of these yourself if you are about to be shot down the tube.

The technologists will tell you that MRI is an abbreviation for Magnetic Resonance Imaging.  They are lying.  MRI is actually short for “Major Radioactive Insanity.”  Major, because while there really isn’t any pain involved, while you are stuck in the tube it feels like a really big deal.

And do not let the technologists tell you any different, there is some sort of radioactivity involved.  If there wasn’t, why would you have to wait for the green sign to light up before you enter the room?  The way the technologists freak out if you step just a little too closely to the door while the light is red, there has got to be some type of radio something or other going on.  Radioactivity, radio frequency, Sirrus satellite radio, whatever.  It is radio something and it is serious.

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And insanity?  Yes, what goes through your mind while you are in there is nothing if not insane.

Ladies, you cannot wear a bra.  Even if you know for sure that there is no metal anywhere in or on your bra, there is, somewhere.  The little hooks or the synthetic material of a sports bra have microscopic bits of metal in them.   Even if you happen to be a 34A and wearing a light cotton/lace thingy with mesh hooks, you need to take it off; if only out of respect for those of us who must wear underwire over the shoulder boulder holders.

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Go to the bathroom before starting the test.  Once beginning the test, keep reminding yourself you do not need to pee again.  You really don’t.  It’s just part of the insanity, this bladder mirage.

If you panic that maybe the technologists have forgotten you in the machine and left for the day, don’t push the panic button to check.   It will only delay the time you are stuck there and really, really annoy them.  And trust me; you don’t want the technologists annoyed with you until after the MRI is over.

If you get super bored, don’t push the panic button just for something to do.  They don’t like that either.

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If you think you might seriously panic about being stranded (this particular panic occurs to me during the brain MRI when they actually have to lock my head into the MRI vise), then take the technologist’s car keys and lock them in your assigned locker.   You won’t be able to take the locker key into the tube with you (its metal), but you can hide it somewhere in the outer room and then kill the time in the tube trying to remember where you hid it.

At least it will be hidden from the techs so that they can’t leave until they bring you out and you have all searched for the locker key you so carefully hid.

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If, while your brain rambles during the test, you get a sudden desire to reach out to an ex-boyfriend, ex- boss, ex- party buddy, ex- friend, or ex- roommate, don’t do it as soon as you get your phone back.  This is another MRI mirage.  If contacting your ex anything wasn’t a good idea before you went into the tube, it is DEFINITELY not a good idea once you get out.

If your doctor orders something called “contrast,” at some point the technologist will slide you out of the machine and inject ink into your body. This does not mean that later in the day you will spit, sweat, pee or cry pretty colors, which is a total bummer.  I hoped to create my own MRI/MS Rorschach print.

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Damn, you can’t have any fun with MS.

Speaking of bodily fluids, you still don’t have to pee.  Well, ok, by now you probably do.   Try to ignore this fact.  You won’t be able to ignore it but trying to will at least give you something else to do until the test is over.

The MRI takes five hours.  It doesn’t really, but if you think that it does before you go in, the actual time it takes will be a little more bearable.

You will be able to keep your socks on.  If you choose to do this, make sure your socks have non skid, gripper soles, the kind the put on little kids feet pajamas.  If you don’t, when you are finally free to go you may be so excited to get out of there that your socks slip, causing you to slide across the floor, bang your head on the table you just got off of, and have to repeat the whole process all over again to see what damage you have just caused your brain in your excitement to get off the table.ID-100121631

At least the base line tests will already be done.

(So, no, I didn’t actually hit my head on the table when I slid across the floor.  But I came close and MUST remember feetie socks next time.)

Finally, the biggest MRI lesson is that if the technologist gives you a disc to take to your doctor, never, ever look at it without your doctor present.  If you do, you will be convinced that you have the spine of a frog, and the brain of Frankenstein which will cause you to enter into a state of depression the whole week until your appt where your doctor will tell you that what you were actually looking at was an old Rorschach test you happened to have hanging around your disc drive.

ID-100290700Happy insanity, ooops, I mean imaging, everyone.

 

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On the Radio

Multiple Sclerosis hits the airwaves!

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Hi friends-

Sorry I’ve been quieter than normal.  It’s not for a lack of ideas as MS keeps making me crazy!  It’s more because of the “not enough hours in the MS day” whine. But I promise a new blog in the near future.

In the meantime, I’m on the radio!  I bet you saw the title of this post and thought of Donna Summers 80’s hit.  But no, it’s me, on the radio.

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Thank you to The Authors Show which has interviewed me and is posting the interview today only, 10/5 only, until midnight.  I chat with the host, Linda Thompson for about 15 mins and you can access it at any time by clicking this link-                                         The Authors Show

The interview talks about MS Madness! A “Giggle More, Cry Less” Story of Multiple Sclerosis, MS and how humor helps me.

My very best to all of you my friends!

Yvonne

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Convicted Caper

Multiple sclerosis goes on the run

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As soon as I typed the above subtitle I started to laugh.  There are people living with MS who run, run well actually.  And often, they run races, half marathons and even full marathons, sometimes to raise money for MS research funding and awareness.

I’m not one of them.

I can’t remember the last time I ran.  That could be because it was a traumatic experience that I blocked or because MS has messed up my brain.  Anyway, if you’re a fellow MS’er who runs you have my support.

And my awe.

And my sympathy.

No, this blog is about a different type of running.

As in “on the lam.”

As in, away from the law.ID-100180737

Several months ago I wrote a blog (Lawbreaker) about how MS turned me into a criminal.  I thought that would be the end of the story.  I had repented of the unlawful sins I committed in that post and was now back to my law abiding, innocent self.  But apparently crime wasn’t done with me.

It started with my printer.

Yes, my printer.  I went to print something one day and my printer made this hideous, indefinable noise.  It sounded like- well, I can’t tell you because at the time it was indefinable.  But it was loud and scary and not very healthy sounding.

I took it to the computer store and the geek there-no I’m not being mean, I was at Geek Squad-defined the noise for me.

“It sounds like machine gun fire.”ID-100150936

And he was right. Me, who knows nothing about guns, had a printer that was set in the middle of a mob movie.

What was even more concerning about this was that it coincided with a car problem I was having.

I had to give up Gina Blue-my little blue Corolla.  She and her super leaky, unfixable roof were beyond due to go to that blessed parking lot in the sky.  I hope she is happy and at peace there.  I still miss her every day.

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Anyway, my mom came to my rescue and obtained a car for me to drive.

For this, I am especially grateful.  It is a very pleasant and efficient 2008 Toyota Camry, with one quirk however.  Every time I turn on the air vents, whether for heat or a/c this mysterious white powder comes flying out of the vents.

I kid you not; you can’t make this stuff up.

I have no idea what the powder is.

People tell me I should get it tested.  I have no idea where to do that.

Yes, I’ve had the filters replaced-twice- and had the car inspected several times.  No one can figure it out.  Yet, nine months after I started driving it, my car is still filled with this mystery.

The only thing I could come up with was that the prior owners must have been drug runners and there is a big kilo of something expensive hidden in my car somewhere.  Combine that with my printer’s constant gun shots, it’s hard to know what’s what.  I feel like I’m this close to having Joe Pesci and Robert De Niro show up at my door, demanding the goods.ID-100266028

Of course, these crimes were the fault of my new car and of my old printer.  But since they are in my possession I’m probably good for some kind of accessory responsibility.  The theft charges were totally due to multiple sclerosis however.

When I started my MS blog I had an awesome web guru that set it up for me and taught me how to use it.  He told me it was important to include images in my blog (they better attract readers) and showed me where to find free images.  I started blogging.

Then I started exploring.

And talking.

And questioning.

I met many bloggers who told me they get their images from the internet, all the time. If I were to broaden my scope I could come up with super funny images that would really make my readers crack up.

Yes, my web guru said this was dangerous.  But, I figured, he wasn’t a blogger and I had a bazillion bloggers telling me this was ok, especially if I wasn’t using the images to sell anything.

(Well maybe not a bazillion but close to it.)ID-10010474

And so I started scanning the worldwide web for free images.  And then I promptly got accused of stealing an artist’s conceptual property and copywright infringement and licensing violations and all kinds of scary other things.  Two different companies wanted me to cough up the bucks to make it up to them for the two images I used without permission, ie, stole.

I pleaded ignorance.

No dice.

I pleaded “other people are doing it too.”

As you can imagine, that didn’t jive.  They came back with “if everyone you know was robbing a bank would it be ok for you to rob one too?”

The irony of that is I need to rob a bank in order to pay these folks.ID-100317005

So my defense is simple poverty which is no defense at all.  Now I’m just hiding in hopes they get sick of looking for me.  Maybe if they truly come for me and expect me to cough up money I don’t have they might just settle for my car?

If they pull it apart they might find interesting property hidden inside worth way more than unlawful use of two internet pictures.

For the record, I no longer own the printer.  I had that destroyed.  The drug running car is still in my possession however and it is still covered in an unknown, possibly illegal substance.

I’d offer to pass it along to someone but I may need it in exchange for bail money….ID-100265697

FYI- When I started this blog a wise friend told me that eventually, MS was going to run out of topics to offer up.  Well, 150 blog posts later, it finally has.  Yes, it’s true-this particular post numbers 150!

I would like to say MS is done with all the weirdness that I can exploit in my blogs but I highly doubt that.

Here’s the thing- this hot summer I have sweated, bled, cried, slept, tried to balance, laughed, griped, whined and wrote.  After doing all of this I have come to the unfortunate realization that I need to step back from blogging weekly and focus on taking better care of myself.

(Learning to run would be a good start, never know when the law will come a’ calling.)ID-100153663

I will still blog as I believe it helps me to process all of the crazy. But I won’t be on a blog schedule.  This means that a new post will be posted the next time MS does something super crazy, or I get so frustrated with MS that I have to beat something and a blog makes me feel like it’s MS I’m beating.

I hope you will still choose to follow my random posts.  The best way to do that would be to either sign up for my Feedblitz Subscriber Service or by following my Twitter account @yvonnedesousa or by following my website Facebook page, Yvonne deSousa.com

I will miss your awesome comments and your weekly stats.  But I hope we will still be in touch regularly.

In the meantime, please keep smiling my friends…ID-100286821 (1)

 

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The MS Money Suck

Multiple Sclerosis gets spending

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Everyone knows that MS sucks.  You don’t need a degree to be able to figure that one out.  But, if you’re one of those science type people who need an official hypotheses I can back up this statement.

Hypothesis-MS sucks

Examination-MS patients complaining about sucky MS symptoms

Research-observation of MS patients dealing with sucky MS symptoms

Proof-MS sucks

Still not convinced?

Then there’s this; immediately after my MS diagnosis my then neurologist told me that, MS sucks. She had all kinds of fancy titles, degrees and med school debt to back her up.ID-100249751

And we don’t have to be an Ivy League grad to realize that living with MS is expensive.

Hell, living with any type of chronic illness is expensive.  Just thinking about words like insurance, pharmaceuticals, medical tests, therapy, copays, and sick time and even the cognitively slowest person (ie, dumb) starts to appreciate how costly it can all be.

Therefore we all know that MS and money clash in the poorest of poor ways.

I expected this upon my diagnosis and tried to start preparing and saving.  What did me in were the ways in which MS would leave me financially strapped that I couldn’t even anticipate.

For example, due to multiple sclerosis I am extremely temperature sensitive.  Extreme cold can be painful and extreme heat can make it hard for me to breathe.

If given a choice I prefer the extreme cold as rumor has it that breathing is pretty important.

My ideal living and sleeping temperature is 73 degrees.  And lucky for me, I live in New England and so there are several days in the year when my environment naturally drifts to 73 degrees.

Five of them, to be exact.

Yes, for 5 days a year I don’t have to worry about air conditioning or heat.

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Every other day I’m using some nasty utility company to heat things up or cool things down and as such, I’m watching good green cash blow out the a/c filled window or burn up in the fiery furnace.  Actually, to make the money suck even worse, I don’t have a furnace.  My heat is electric.  And yes, the electric company loves me, the stingy money grabbers.

Here are some other unexpected ways that multiple sclerosis is super expensive.

I have the most basic of basic cell phones- an actual flip phone.  Yes, they really do exist even if they are impossible to find.  They are officially the dinosaurs of technology and I have long been convinced that they are called flip phones because people like me are constantly flipping them somewhere.

I have accidentally flipped my phone across the room several times.

And dropped it on the ground.

And banged it against a wall, car or furniture.

One would think that replacing a boring, basic phone would be cheaper than replacing a fancy/schmancy updated one.

One would be wrong.

Very, very wrong..ID-10034354

Moving on-cognitive difficulties are also super expensive.

Here are two pricey examples.

Because I’m constantly flipping my flip phone I worry about replacing other pricey electronics as well. It’s not unlikely that I will drop my laptop and so I always get the insurance protection on it.

This past January I called my geeky friends at Geek Squad and wrote down all they told me about renewing this policy.  The first thing I had to do was respond to an email they would send me on a particular day.

On that day I received the email and looked at my notes to see what I needed to do at that point.  What I needed to do was renew the policy as my notes clearly stated.  What I did was delete the email, thinking it wasn’t important.  Later I realized that the policy was canceled and now my little old computer, also ancient at 6 years old, is alone in the world with no protection and clumsy me acting all dangerous around it. ID-10075806

We are just one unexpected trip away from complete financial, technical destruction.

While trying to build up a writing career I applied for a grant that would help me out financially while I wrote the next great American novel masterpiece, you know, like 50 Shades of Grey.  I read the rules for applying for the grant several times.  Then I read them several times again.  I updated my grant submission and just before hitting send, I checked the rules yet again.

And several days later I realized I had messed the whole thing up and my submission would likely not count as I hadn’t followed the rules.  And the deadline had passed.  That little bit of cognitive difficulty cost me $5000.

(Well, $5000 assuming I would have been awarded the grant as opposed to other ambitious writers but I choose to assume I would have won if not for that damn costly MS!)

Many people with MS also live with another serious illness.  Mine is germ-a-phobia.  Yet, MS makes me constantly exhausted so I need a lot of help with cleaning. Most of this help comes in the form of disinfecting wipes.  And these wipes don’t come cheap.

Luckily I can sometimes find coupons to use for purchasing these amazing energy saving, germ killing power house cloths.  And the coupons do help, if I remember to use them.  Which, of course, I never, ever do.

While talking about shopping let’s take our meager pennies to the grocery store, shall we? ID-10043818

I try and try to be a saver and the grocery store is no exception.  But disinfecting wipe coupons are not the only coupons I forget.  I forget all the coupons.  I could deal with that, really, how much do coupons really save?

The problem is that I have picked up this bad habit of buying the wrong thing.

Even as I’m looking at an item and putting it in my cart.

Even as I bring it home and put it away.

I will still see the item I needed.

Then I open said item only to discover that it is the wrong thing and thus, unusable. I would return it for the right thing but the product is now opened and the receipt was trashed a long, long time ago.

It’s enough to make a person crazy.ID-100178602

Or, it would be if we MS’ers didn’t already feel crazy.

Thankfully, there is a remedy.

It’s called wine.

I try to save there too.

I bought a bottle recently and saw a promotion where if I save my receipts and bought more bottles I could get a rebate- $3 off two bottles, $6 off four etc.

I was so pleased by this that the next time I was at the liquor store I bought that specific bottle.  I can fight the MS money suck after all.  Wine is crucial and why not get some money back when I drink it?

I was so pleased with myself and my savings effort that I was home and had the bottle open before I realized that I had forgotten the damn receipt!

Good thing the rebate called for big bottles of wine.  I’m going to need them……ID-10012629

Hi friends,

                I would love to hear of some of the unusual ways MS is robbing your piggy bank.  Feel free to share your thoughts in the comments section below.

                Also, my friends over at the Accelerated Cure Project asked me to remind my readers of the fabulous research they are doing with the I Conquer MS project.

                iConquerms.org is a patient centered, patient powered research initiative that needs the help of all of you!  And unlike most things MS related, it won’t cost you a penny!

Please check them out  iconquerms.org

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MS Hips DO Lie

New multiple sclerosis symptoms go musicalID-10019101

I was sitting in a meeting a couple of weeks ago when my left hip started to vibrate and shake.  It felt like how it felt in the old days when we had pagers or antiquated cell phones attached to our belts.

Immediately I went looking for my phone.  Did I forget to turn it off?  Was it on silent mode in my pocket?  This was very possible as I have said over and over, my cognitive abilities stink and so who knows where anything is on my person?

But no, my phone was completely shut down and resting lazily in my purse which was slung over the right side of my chair.  My hip continued to hum.  Was this a new MS thing?

Ironically, I was at an MS meeting and was surrounded by fellow MS’ers.  I wanted to ask them what they thought but what if this wasn’t MS related. How do I explain this bizarre vibrating going on?

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What if they thought I was crazy?

What if they thought I was a perv?

This vibrating, shaking hip thing continued throughout the afternoon and made me think of a Rolling Stones song, (of course it did,) called “Shake Your Hips”; specifically the line that says, “do the hip shake thing.  Do the hip shake thing babe.”

So now, while I was trying to concentrate on the meeting, I was also dealing with a hip dancing on its own and had an awesome Stones verse stuck in my head.

Since that meeting other body vibrations have started to occur; the right hip, one foot but I can’t remember which, (next time it happens I will clarify), a leg, (ditto on which) and back to the left hip again.

It would be nice if these limbs were dancing in a sequence but alas, since this is probably multiple sclerosis, of course they choose not to cooperate.

It might be for the best. Most dance places don’t get exciting until after 10 PM and I’m always in my pjs by then.ID-10042722

Then recently, I got mad at something.

Really mad.

Really, really mad.

So mad my body started to shake.

I had never had that happen before although I have heard people talk about it.  My body was doing its own thing once again, vibrating in parts and shaking all over.

When I get in a bad MS way I turn to my faith.

If I’m so bad off that I’m being way too stubborn to appreciate God’s help, then I turn to humor.

And when I am so grouchy that anyone who tries to make laugh might get their head bit off, it’s then I turn to music.ID-100146496

And so, I couldn’t help thinking of Shakira’s song, “Hips Don’t Lie.”  Except, as far as I was concerned, my hips were lying.  Since they couldn’t be bothered to tell me what they were doing, they were lying!

At least the line in her song fit, “ahh baby when you talk like that, you make a woman go mad…”

And mad I was.  I was mad at MS, I was mad at the world, I was mad at my weird body parts.

I was mad that when my hips were shaking they didn’t look anything like Shakira’s hips.

It’s a cruel world we live in folks.

One song sung by a woman too beautiful to be believed was not enough to get me out of my crabby place.   More shaky songs came to mind, like the Cars “Shake it Up.”

I laughed at the line that says “do the move with the quirky jerk.”  Oh yes, that’s one move my body does know.  I was quirky jerking all over the place…

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As I was letting my body do this weird multiple sclerosis dance across my living room, I grew tired, spent even.

I felt all shook out.

I felt all shook up.

And then, then I thought of the music of my Elvis childhood.  One more song might get my body to relax and get the anger out of my nerves.  I looked up “All Shook Up.”

Did you know it’s an MS song?

Seriously, check out the lyrics if you don’t believe me.  MS gems abound like, “Well, my hands are shaky and my knees are weak, I can’t seem to stand on my own two feet.”

And “My tongue gets tied when I try to speak, my insides shake like a leaf on a tree.”ID-100289380

Supposedly Elvis recorded this song about falling in love but I don’t believe it.  I have been in love, lots of times, and it never felt like this.

Then again, I am single so maybe I wasn’t doing it right?

The point is, before I knew it, I went from being mad at the world, to dancing my strange MS body around my apartment to watching old Elvis videos on YouTube.

And I felt better.

So, are vibrating body parts and shaking limbs more symptoms of multiple sclerosis?

If so, then I guess that’s just how it goes.

I try to stay positive and so I came up with this-

If my body is moving around on its own, well that’s a lot less exercise I have to do!

Yea!ID-10057662 (1)

 

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