my Multiple Sclerosis blog

I am a firm believer in going with the flow.

Like water……

Water can lie perfectly still in a puddle or crash against the shore.

As a tsunami it destroys all in its path.

Over time it carves canyons in mountains.

It sprinkles during a sun shower and batters you in a storm.

It can change from ice, to liquid water, to steam in a flash.

Water takes the path of least resistance.

Like flowing water, I refuse to stagnate.

I won’t always blog about the ‘woes of having multiple sclerosis’.

I refuse to define myself as ‘that girl with M.S.’

So in keeping with how I believe I should live my life, I will blog what is on my mind.

I will be mad .

I will be sad.

I may be estatic or full of self depreciating humor.

I will find the absurdities of everyday life and laugh at myself often.

I will strive to be content.

Welcome to – “I’m Just Living This M.S. Life….Staying Sane Since My Diagnosis With Multiple Sclerosis”

A special note to anyone who wields a Red Pen to correct grammar errors…..I write like I speak. If I followed all the ‘rules’ my writing wouldn’t feel like mine. Okay….lol…you’ve been warned. Read on if you dare.

One of the WEIRDEST dreams to date since switching my medicine…..

lol…okay, with the narcolepsy stuff I hit REM sleep really quickly. I also must hit REM many more times than most people do when sleeping. The result is many dreams that I remember. I remember portions of multiple dreams that I have every night. Last night I remember large portions of 2 separate dreams. One dream is the makings of an action movie…..I’ll have to get a copyright on it when I post it. It was wicked cool and VERY action packed. BUUUUUUT, I’ll recant what I remember of the other WIERD dream first.

So the first thing that I remember is that I am in my Grandma Martha and Grandpa Clair’s house. It has odd stairs out front and in the Garage. That is why I know where it was.

So in this dream I had many cats and dogs. (I am truly an animal lover so dreaming about animals isn’t a surprise). In this dream world though there were a lot of wild animals that roamed the streets. Cougars, wolves, tigers…..all roamed the city streets at night. Everyone made sure they and their animals were in at night before it got truly dark.

Also part of this dream took a supernatural turn. There were Warewolves, Vampires, and elves…like “Keebler” elves ( more like the little troll dolls than traditional “Lord of the Rings” oh so BEAUTIFUL elves………(Liv Tyler and Orlando Bloom anyone???))….but in the dream they were little, really faaaaast, creepy, evil looking elves.

So in the dream, I was making sure all my animals were in before dark. I heard this terrible noise like animals fighting. I though “oh my god…one of the puppies must have gotten out and a cougar or tiger got it”. In my infinite wisdom I opened the first door in the special hallway and walked in. I closed it. Then I opened the door to the outside trying to find the puppy being attacked. I couldn’t tell what was happening. It was something screaming in pain while being attacked but it was waaaaaay bigger than a little 6 week old puppy. So in my idiocy, I reached out and grabbed it, pulled it in the inner room, and slammed the door to the outside world shut. Now I was in between areas….not in the house but not outside (best similarity is a mud room). I had a hold of this full grown cat size thing that was white and crying in pain. (realize in the dream….everything that wasn’t a domestic animal….wasn’t to be trusted). So this thing that I had was an albino, un-stripped tiger cub. It’s own family was trying to kill it because it didn’t look normal. UGGH, I am a sucker for lost causes. So this poor little (BIG) cub had part of both front arms missing. Torn off by evil family member tigers maybe. Of course I couldn’t let it suffer.

I took it in the main house, much to EVERYONE’s dismay to nurse it’s wounds. It was obvious that this cub would never be able to hunt. It was missing at least half of each front leg. It wouldn’t be able to hurt the domestic animals we had. So I went about nursing its wounds, feeding it, and helping it get its strength back.

The cub turned out to be mostly blind too. It was very loving though and only wanted to play with the domesticated animals.

Every night though, Wolves, tigers and cougars stalked our yard waiting for me to let the cub out so they could kill it. Poor cub just thought its family wanted it to come back home. I had to make sure I locked it up every night so it wouldn’t escape and get killed.

Separate from that familial feline ordeal, every night, supernatural beings would come to the house to party…….Yeah, Party.

Not a rowdy, tear up mortals….eat humans party…just a very civilized, poker playing, ballroom dancing, appetizer eating party. VERY…UN-evil, UN-supernatural gathering.

The younger Vamps and Warewolves were seated at the poker table while the older (yet still insanely beautiful elders of both races) danced the Waltz, Tango, or Lambada in the ball room.

****Note here……my grandparents house DID NOT have a ballroom….sock that one up to the dreamworld****

SO, all this weirdness is going on around us, music is playing at a civilized level. There is NO fighting. Everyone is getting along…..then KNOCK, KNOCK, KNOCK….the nose-y neighbor is complaining at the front door, about the amount of light that we have blaring throughout the property. It is lighting up the inside of their house and they can’t sleep……It’s ONLY 10PM. (Really…….GET BETTER CURTAINS)…. The person that takes care of my grandparents house (and answered the door) in this odd ‘vacation of the mind’, looked like a taller version of “Tattoo” from “Fantasy Island”.

He was oddly silent when the Neighbors came complaining.

Strange yet ??????

Well, the house guests silently left, no evil intentions or grumpy attitudes present. The weird little….. kinda…. ‘cookie brand’ elves came out and began cleaning the house by eating everything in sight…..plastic, paper, food……trash…..etc. (GET OUT OF THEIR WAY of course)

The last thing I remember of that dream was me holding the injured, very sweet, blind, albino, un-stripped, tiger cub. It was rubbing its head against my shoulder while also mewing softly.

ODD Right?? Yeah, chalk that up to an S.N.R.I., and an awesome case of Narcolepsy.

Wicked and Bizarre Dreams

Along with my Multiple Sclerosis I have a fun little case of Narcolepsy. Now….not the one with Cataplexy….. you know the one that is shown in movies where a person falls asleep and then ends up face down in their soup. No, I don’t have cataplexy. Thank goodness. Now this is one result of my MS that I actually think is pretty cool. It isn’t a common condition that appears because of MS, but it does happen enough for there to be a definite link between the two. I’m a weird case that has always presented with some of the odd / uncommon symptoms of MS. I miss out on some of the more common symptoms like Optic Neuritis. I’ve been diagnosed for over 16 years, had MS for over 20 and have never had a bout of O.N. I presented with odd things like not being able to walk in the morning, having a hard time picking my feet up to walk/run, Lhermitte’s Syndrome, palsey, Trigeminal Neuralgia, myokemia, fasiculations….etc etc etc. So Narcolepsy is just another cool syndrome in my line up. The cool thing about it, at least to me, is the hypnogogic sleep and the fact that I dream every night, multiple times, and I can remember some of those dreams. I have lucid dreams because of the Narcolepsy. I am dreaming before I actually fall fully asleep. I just think it is fascinating what our brains do to decompress and essentially file memories or work out problems. I’ll write about what I remember from some of my dreams when I have an extraordinarily interesting one. At least interesting to me. πŸ™‚

Another reason to HATE Hurricanes !

Okay, we hate Hurricanes for many, many, many reasons. Let’s see, we hate them because the Weather services can NEVER tell us where they are going to land until THE VERY LAST MINUTE ! They WORRY us. Worry us about property damage, loss of shelter, loss of work, fear for keeping your kids, significant others, and pets safe. Tons of questions run through your head as you are trying to prepare for the storm to hit. Is it actually going to hit here? How close will it hit? How high are the winds? How fast is it going? Are the lines at the gas station really long?……we need to get gas for the generator. When was the last time we tested the generator? We also hate the list of “to dos” that come with prepping for a Hurricane. We have to go refill our prescriptions so we know we have enough to get us through. We need to shutter the windows. Do we still have all the bolts or do we have to go to the hardware store? We have to bring the patio furniture cushions in the garage and we need to throw the ‘non wicker’ patio furniture in the pool so it doesn’t blow into the neighbors house. We need to bring the potted plants into the garage because those clay pots can break windows if thrown by wind. We have to go get drinking water for the humans and pets. We need to fill the bath tub with water so if service is disrupted during or after the storm we have water to wash with or flush toilets with. We need to fill our cars with gas and get cash out of the ATM ….since electricity, phones, and internet may be down after the Hurricane and you won’t be able to use credit or debit cards. We need batteries for the flashlights, a hand crank or solar powered weather radio, we need a powerbank / extra battery for our cell phones……or wait….we can charge our phones in our car after the storm so we need a cigarette lighter charger. We need to stock up on canned / packaged Non perishable food. You will be sick of Chef Boiardee, Campbells, and Progresso by the time the storm passes. You worry about your extended family if they are also located in the “Cone of Uncertainty”.

Then the WHOLE time you are trapped in your house you are going stir crazy. The news does NOTHING but Report on the Damn Hurricane. Every 5 minutes “the storm is here…now it is over there….now it is coming back here again….”. They stand in non-existent bursts of hurricane winds and talk about how hard it is to stand in place. OMG…so tired of that SHIT.

Another horrible side effect of Hurricanes is Weight Gain. Yeah, you are trapped in the house, with easy to prepare and eat foods. Aaaaaaaaand what do humans do when they are bored? EAT, we eat. Yup, I gained 8 lbs during the stupid hurricane and the weeks soon thereafter because we had a lot of easy to prepare food. NOT HAPPY! I have 6 weeks until my Tough Mudder and I have to drop the stupid 8lbs again. Can’t drop the weight if I can’t run, can’t run if I am carrying even 5 lbs extra weight because my hips and knees will hurt. So I started the V-Shred toned in 90 days workout program. I like it a lot. It is very quick….less than 20 minutes, but it is a real workout. I’m actually sore. The arms and leg programs are what makes me sore. The AB ones aren’t bad. I’ve always had really strong ABs so those don’t seem hard at all. Hopefully this program works. I skipped today because I am so sore from the last 2 days workouts. I just made today a cardio day by trying to run. Well I walk and run. The knees can’t take the extra weight if I am running sooooooo until that is gone….it will be walk run, not just run.

God I really just want to RUN…I used to run 35ish miles a week. I loved it. It was addictive. I’d run on Christmas morning before opening presents, the morning after a hurricane because I couldn’t stand the inactivity anymore. I’d run 2 miles before work and 4 miles after work and 13 miles on Saturday. I miss it…..Damn Multiple Sclerosis and the limitations it has set upon me, damn getting older because that probably contributes to the whole shebang too. Doesn’t metabolism slow down as you get older? My new med may be contributing to the weight gain too…..the med is working so if I have to just deal with the extra weight, I’ll just have to suck it up.

Anyway, let’s see how V-Shred, Toned in 90 Days works for me. I’m training with light weights high reps too, and the attempted runs. I’ll let you know how it goes. MS is not going to ruin my Tough Mudder by sidelining me. Screw that. I’ll keep updating my results.

Just as an FYI….I do not in any way believe or think I am Fat. I’m not one of those women who say, OMG I’m fat. I am probably in the normal range or a little better than average range for a woman of my age and height, etc . Even so, to run comfortably and without knee and hip pain I need to lose 8 to 10 lbs from where I am now. I am 43 yrs old, 5 ft 1 inch short, and as of this morning 120.8 lbs. I need to be 112 lbs. 115 at most. That is for comfort levels when I run.

Anyway, I’ll post about my results with the V-Shred program. Let’s see if it is just a fad, or if it really works. Have a great week.

Monday’s Stink

Monday’s stink. Yeah, I said it…..they STINK !!! There is always a weeks worth of work piled on my desk when I get to work on Monday. At least it feels that way. Even though Mondays normally fly by pretty fast at work, it’s only because I am crazy, out of my mind busy. I can’t catch a break, I miss lunch, and I’m still unable to catch up. Yeah, Mondays DO STINK.

But don’t worry, anything that I don’t finish on Monday…….will be sitting there, waiting patiently for me on Tuesday.

Hey did I tell you that Tuesday’s Smell Really, Really, Really Bad………..

Weekends are over all too quickly….

Why are weekends only 2 days long? I mean, the days that we work are rarely only 8 hours long. If they stretch to 10 hours long….then you have a 50 hour work week. That doesn’t include any time spent at home working. Working at home can always add up to another 5 or so hours a week. Technically we are working about 55 hours a week.

Now I can’t say that this is abnormal. I’m sure my boss is working more than 60 hours a week. I think he probably works all day on Sunday, and on the 1 hour drive in and the 1 hour drive home. So he is probably working 11 hours a day, plus at least another 8 hours on Sunday. Lets do the math…..about 63 hours…..something close to that.

I’m sorry, to me that is crazy. I can barely survive a 45 hour work week, much less something as crazy as 63 hours. Hell no. I don’t think so.

Sooooooo…..it is Sunday…..and I have to be up at 5:30 am to get to work at about 7:30 am. I am waaaaaaay…too tired for this Sh*t.

Anyway, last night my husband ‘absconded” with my emotional support dog Mischevious Poe. One of the reasons I have dogs is because I stop having nightmares when they are sleeping with me. Poe is my cuddle bug…..my nightmare preventative. Last night I was having some bizarre dreams. Not nightmares….just suuuuuper weird. On top of that it was very, very, hot in my room. I was miserable, so I had to get up at 3:00 am and move to the living room. The AC is so much better in the living room. So I found my pup Poe and stole him back , from my husbands room πŸ™‚ πŸ™‚ I took my Poe Deep puppy back to the living room where I was going to sleep.

He stopped the weird dreams, just by laying next to me. He puts his head on me and I sleep like a baby. The dreams I was having while Poe wasn’t with me were bizarre. When I have a little more time, I’ll describe the dreams.

Have a Great Night !!!!!

It was Soooo Worth It !

A Very Sleepy Calliope Snow….

It is still really hot here in the always sunny state of Florida. Waaaaaay too hot !!! As I have mentioned before, heat and M.S. do not mix well. Fatigue is a lot worse when you get overheated….etc. ….etc.

I want to walk my dogs everyday but after work I am just waaaay too tired. I finally decided that I need help taking the pups out for walks. If I try to walk all three together they tie themselves up in their leashes, pull me in every direction, and just don’t listen. If I walk them one at a time it takes about 2 hours to get everyone taken care of. I just don’t have that much free time.

I mentioned my dilemma at work and someone suggested hiring a dog walker. I looked into it and it can be very expensive, especially for multiple dogs. I cannot afford that. The same person said I should ask another mom I work with if any of her children would like to help with my furry monsters. What an amazing idea !!!!

So I asked the other mom “Do you think one or two of your almost adult sized offspring would be interested in getting paid to help me walk my dogs?” Yaaaaaay……as least One of those soon to be adults wants to walk the dogs with me.

So, 3 days a week I will be paying one or two kids to help me walk the dogs. It will be money WELL spent and will be totally worth it. Dad dropped the kids off this afternoon and I brought them in to meet the pups, hoping that they would get off on the right foot. After about 3 minutes of the dogs being unsure of newbies in their house, everyone was calm and happy. Yaaaaaay,they got leashed and we went outside.

They had about a 40 minute walk and fell right asleep when they got back. The picture shows just how CUTE my sweet ‘Ca-Lee Lee Poot Poot the Lilliputian’ is. The walk tired her out but good. She has been out for over an hour and a half. πŸ™‚ πŸ™‚ Grimm has been passed out on mom and dads bed, and Poe has taken a few 15 minute cat naps in his crate. The pups are happy, so I am happy.

I am looking forward to our upcoming doggie walks. I also enjoyed talking to Miss Reagan and Mr. Raven. Teenagers are always interesting.

Have a great night.


IT IS HOOOOT…and I stupidly did too much outside in that Darn Heat!!

Okay….so people with Multiple Sclerosis can have an unpleasant reaction to the heat. When the optic nerve is affected, it is called Uhthoffs Phenomenon. M.S.’ers (people with multiple sclerosis) can also experience other undesirable symptoms when negatively affected by the heat.

Below is an excerpt from a Healthline.com article about Uhthoffs Phenomenon.

find the complete article at – https://www.healthline.com/health/multiple-sclerosis/uhthoffs-phenomenon

How heat affects MS

A 2011 study reported that between 60 and 80 percent of people with MS experience heat sensitivity. Demyelinated fibers in the CNS are hypersensitive to a rise in body temperature. This makes it more difficult for the body to receive internal signals. This can result in a worsening of MS-related symptoms and cause blurred vision.

The good news is that heat sensitivity and the related worsening of MS symptoms are only temporary. This is called pseudo-exacerbation. It doesn’t mean new lesions, lasting neurological damage, or a rapid progression of MS.”

Anyway, back to why I’m speaking about the heat. I am trying to sell a car. It is one that my mom gave my son (a hand me down). I originally put a couple thousand $ into it to fix the water pump, some belts……and other big stuff. The car started giving my son problems again so he brought it home so we could work on it. Well…it is fixed and running fine now. My son however, only wants to drive his sisters car. She lives halfway across the country and couldn’t take her car. Her car is better on gas. His car is an Aztek, an SUV, so of course it doesn’t have great gas mileage. So his car is sitting in my driveway, taking up space. I want it gone.

The Aztek needs to be clean to sell it, right?? Well my husband has been acting like I’m lazy because I haven’t gone out and cleaned, vacuumed, and Armour All’d the inside. So I thought ‘Screw it’, I want this car sold. I need to recoup some of the money I spent on this thing. At 9:00am I got outside and vacuumed my Mazda. She needed it badly. Then it started to rain…..so….what better time to wash the car. So I washed her. It was cooler outside than normal, because of the clouds and rain. The heat wasn’t bad yet. Since it wasn’t too bad, I went ahead and washed the Aztek.

I then went inside and told my husband that I washed it and that I would vacuum some of it. I told him that it would be nice and a big help if he could finish it. Oh goodness…..I received a snarky remark like “oh, so you’ll only do part of it, and I have to do the rest.” I reminded him about the heat and the MS…and my possible reaction to the heat.

I don’t take comments like that well. I get mad when he acts like MS isn’t a big deal. We have this ongoing feud about my MS and me going on disability. He wants me to go on disability, I don’t want to do that yet…..so he gives me the “you don’t want to go on disability….then your MS isn’t affecting you negatively”. Of course that isn’t true. I take 5 different pills in the morning, 2 at night, and a shot every other day. Some of those morning pills keep me awake so I can go to work. UGGH.

Anyway, I vacuumed the entire Aztek and Armour All’d the interior. Took me like 2 hours. It was horrible. I went through two large YETI jugs full of water. Changed my work clothes 3 times. MSers are very prone to bladder infections. We can’t wear wet pants for too long or it is almost guaranteed that we will get a bladder infection. NO WOMAN wants one of those. They are miserable. So the clothes got changed as soon as they were soaked with sweat….EEEEEEWWWWWW. The day had turned REALLY hot. The clouds disappeared when I was halfway through vacuuming the front of the Aztek. The rest of the job was MISERABLE.

This is how the heat affected me. I got tired, light headed, clumsy, unsteady on my feet, I tripped and fell twice, and I accidentally cut a big chunk out of my pinky finger while cleaning the interior. YEAH, not fun. I still have to vacuum the floor mats so I’m not quite done yet.

So all of you ladies and gents need to stay cool. Air conditioner, swimming pool, cold drinks, and cold showers.

What day is it??…Friday you say.?. THANK THE UNIVERSE !!

I woke up this morning and had no idea what day of the week it was. I had to drag my sorry, tired butt out of bed and into the living room. I stood in front of the TV and waited for the newscaster to tell me what day it was…… Yaaaaay, they said it is Friday today.

I couldn’t be more ready for the weekend. I still took a pile of work home so I can get a bit ahead. This was a Hellacious work week. Some days you just wish you called in sick. It can feel like you never do anything right.

I had one of those days yesterday. I have been working on a project off and on with our IT department for a couple of years now. We have been forced to delay the project completion many, many times. Sometimes other priority projects are put on your desk and you are forced to push back what you have been working on.

Then, out of the blue, this “couple year long” project becomes a ‘Get it finished in the next 3 weeks’ project. Interestingly enough, week two was interrupted by ‘maybe here, maybe there, maybe back here again, maybe we really don’t know where it will be…..’ Hurricane Dorian. Week number two ended up only being 2 work days long. We went back to work on Thursday.

Well, the day before yesterday, the IT department had ALL of their project work done. I was up next. I had completed the instructions and the how to’s. Everything seemed like it was going to go smoothly.

Funny thing is….I find that when I assume things are going to go smoothly……..they usually Don’t. At the last minute, the brakes were put on my training sessions. I was totally blindsided. Come to find out another department has a specific protocol for communication within the corporation. This fact was never conveyed to me. I had discussed my plans with this department….and assumed everything was good. I wasn’t told to alter my plan or to proceed in a different manner.

At the last minute I am called into my bosses office…..(I already knew there was some type of problem because of an email). I knew I didn’t do anything wrong…..but my Boss was acting like I did…..like I missed some HUGE sign telling me to ‘STOP…DO NOT PASS GO….DO NOT COLLECT $200. ‘……lol, thank you Monopoly for this phrase….I will remember it forever….lololol

He was asking me questions in his really Vague way….we all normally have to ask him more than once to explain his questions. I will come right out and say “I’m sorry, I don’t know what you are asking me. What is it that you are looking for?” So the more I asked those questions, the more aggravated my boss became. I ended up in tears.

My boss is a wonderful, brilliant man. He would give you the shirt off his back if you needed it…..but he gets aggravated and kinda mean very easy. You end up either questioning your own intelligence or feeling as small as a bug.

I left his office and completed what he told me to do….with silent tears running down my face. Once it was done….I put up a sign that said “going on Break and then into the warehouse to fix a computer program problem”.

I went to my car, started it, cranked the AC since it is in the upper 80s lower 90s, and BLASTED vintage Avenged Sevenfold on the radio. After about 10 minutes, I thought I was done “Ugly Crying”….lolol. I really did have to go into the warehouse and deal with a software problem. I had to call the developer and have him walk me through the issue. 5 minutes into the conversation…..I have silent tears running down both cheeks…..I’m trying to not sound like I am all stuffed up from crying. That is all I needed….for the guy in a different country to know I was crying like a baby. Other warehouse associates were walking by me…..surely noticing that I was crying……and trying not to let me know….that they knew.

From the time I went to my car, worked with the developer, and finished answering questions about the soon to be implemented ‘project’ it was about one hour since the ‘boss blow up’ episode. I went back to my desk, put on my headphones, blasted Avenged Sevenfold, and took my lunch break. My phone continued to ring….with questions pertaining to the upcomimg project that I wasn’t able to verbally expalin…I ignored it. Normally I will answer the phone during lunch and help someone if I can….but not yesterday. NOPE, wasn’t going to do it. Screw It. Let people call in confusion. If I had it my way I would tell the callers to direct their questions to their department heads. That is petty though, and I try to NOT be petty.

So….as I said, I am just GLAD it is FRIDAY !!!! Hopefully you ALL have a WONDERFUL WEEKEND !!!

Dorian……. IS it going to get Windy ???

Okay, I have had enough. I have had enough of the 24 hour coverage. Our forecasters are acting like we are going to still have this horrible storm……when we are not. The way it is right now, we are going to get tropical storm force winds. WE GET THAT EVERY 2:00 pm SUMMER DAY THUNDERSTORM. Floridians are used to this kind of weather. Dorian is going to stay quite a ways away. Yes we will have some storm surge and some flooding along the coast. That will be terrible for some people, but flooding like that can, and sometimes does, happen during our Bad Afternoon Thunderstorms. The forecasters are putting on a show now……..trying to keep everyone on edge because they made such a huge deal of Dorian WAAAAAAAY before they should have.

People living in the Bahamas are the ones really suffering and they will for a long time to come. Dorian FLATTENED huge areas of land. Dorian as a Cat 5, hit the Bahamas like a Bulldozer. Residents there won’t have power, water, even shelter for what will probably be MONTHS.

Forecasters……to you I say…..Focus on where the real need is. I’m in Brevard, Florida……in the Titusville area to be exact. I HAVEN’T SEEN EVEN ONE DROP OF RAIN SINCE LAST NIGHT….and that was a tiny, tiny amount. If you turn on the news….I should be getting Gusty Rain Bands….etc…..etc.

I walked all 3 of my dogs this morning……took about an hour and a half. Beautiful weather, sunny, nice breeze…….sometimes a strong breeze……..BUT IT IS JUST A BREEZE.

beautiful sky over my house

My front yard on September, 3 2019 @ 3:10 pm…… according to the news I should be getting gusty rain bands right now…… I haven’t received ANY ALL DAY.

If you believe in some kind of higher power……whatever or whoever that may be…..offer up a prayer for those living / staying in the Bahamas.

I will video…or take pictures if I can (It may be dark out) of any storm happenings here.