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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.

Safer at home Covid POUNDS !!!!!!!!!

HOLY SHIT. I GOT FAT. So I gained15ish Covid lbs. It Sux. I’m only 5’1 so it is like 30 lbs for all you normal height people. WTF….so now NONE of my work pants fit. I am squeezing intro 2 pair of pants. 1 work pair…. And 1 pair of jeans. Ok…. This SUX. No one said I’d get fat when I got older. The whole “your metabolism slows down as you get older” sounded fake………… I mean….. Who would take that seriously? The people who say that are “OLD”. Hell…..Who believes their elders? For Real???? Now I am F’ing fat…. WTF. I used to be the skinny….cute….one. NOT anymore.
So now I have to actually work out….. Like an adult ! Did I mention I hate this adult shit ????

Not sure which page this one should be on……MS page type stuff….or Nugatory Notions type blabber.

So we were introduced to a virus. Some people are terrified of this “Novel” virus. Yes, it is Covid-19. This is a Corona virus. Most of us know that the common cold can be caused by a Corona virus. The 2009 SARS virus ….aka Sudden Acute Respiratory Syndrome was a Corona virus. So when someone says “Novel” they don’t mean this is an Alien …just appeared out of thin air…brand spanking NEW IN EVERY WAY….virus. They just mean that this virus – hasn’t been seen in people before.

Now that is what we are being told. There seems to be two main schools of thought about the virus’ origins. Some believe that the virus was spread from a bat to a human. I think the belief there is that either in butchering or eating a bat that happened to have this particular corona virus….the offending human was infected. Then BOOM human to human… to cat…. to dog… to cat…. to human…. to tiger….. virus spreading was enabled and the virus could jump around as it damn well pleased.

Another thought pattern paints China as the Evil Big Brother, who, while whipping up viral weapons in their Wuhan lab either accidentally or purposefully let the new “Novel” Nasty Covid-19 escape and wreak havoc across the world.

On the other hand though, if you read a little further you will meet a Virologist named Shi Zhengli from China. Supposedly Shi Zhengli is known as the “Bat Woman”. Guess what she does? Studies SARS like viruses in Bats.

Now I’m not sure how true this information is. I’m doing some fact checking to see exactly what I find. One thing I want to confirm is if she was truly working on trying to find the way or find the mutations that allow humans to get infected with viruses not typically found in our species. Rumor says Shi Zhengli took a SARS virus and basically retro-fitted it with ‘spike proteins’ similar to something in the HIV virus, that allows it to pass to and infect humans so easily. Like I said, I’m not passing this off as 100% truth but I am trying to see what I find. She supposedly worked with Canadian, American, and other scientists in the world of infectious diseases, on this project.

I can see the benefit of knowing what makes a virus tick, and I can wonder what would happen if different mutations take place…….but any work like that can……as any superhero would say……be used for Evil. Bio Weapons anyone??????

If I find out anything of interest in my searches I’ll let you know. Of course I will give all the bibliography information so you can see where I find info. lol ….. that is IF…..I can find anything interesting. I mean if all of the ‘China was making Frankenstein Viruses’ is just a lot of paranoia / propaganda story tidbits, I might not find much at all.

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.

jen

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.