Tag Archives: embarrassment

Hello bladder issues…

Well, another day in the life of MS…. now my bladder has decided to become a silent assassin… yep… that is what I have… the organ is killing me, and doing it by sneaking up on me (usually when I first wake up, but hey, all hours of the day are fair game) and leaking by either dribbles or gallons…

and being me, I decided to tell anyone and everyone… why??? because it is embarrassing as all get out… and I have found that repeatedly sharing your horror & embarrassment helps to lessen that feeling, and the need to hide…

and it turns out, a lot of women pee on themselves… lol… so far, no men have stepped up and said “hey… I always have to worry about bathroom access…”

at my writer’s meeting the other day, we do updates on or progress, creativity, and whatnot… and one of my fellow writers also has MS… she is writing about her life with MS… so of course, her share time reminded me that ‘hey… I had some great fodder for her book’… after I blurted out that my latest MS-kick-in-the-pants (wet pants) was bladder weakness, she said “I’m the exact opposite… I feel like I am about to pee on myself, and then sit there for hours, not able to go…”

so I replied “I would be happy to trade you…” lol…

then at my cousin’s birthday get together (yep, I did say I shared my embarrassment anywhere and everywhere) I told some of our mutual friends about my leaky pipes, and one woman started nodding “I would work all day, with a bathroom right there, and never have to go… then on the way home it would hit me… some days I couldn’t even make it into the house… just stood in the driveway peeing all over myself…” she said…

I replied “sometimes I’m just like…” and here I looked down into my lap “well that just happened…”

and it is sooo true… my bladder has decided to stop alerting me to impending disaster… and if I forget to go to the restroom that one extra time (even if I went thirty minutes prior) I always wake up in trouble… one wrong move, one cough (oh don’t get me started on coughing and bladder issues) and flood gates open…

lol… later guys… I think I will run to the bathroom now… Tracey

Hmmmm I wonder???

Okay… the other day, I posted a few pic of famous peeps that have MS…. but that night, my body fell apart and stopped to wonder if I should have run the post… lol… okay, what I really wondered was where were their stories of breakdowns…

I want to read the stories that scream “Hey, they are just like me…” not another, just keep trying and reaching for your goals… I want the story about how they carry a change of clothes with them at all times in case bladder issues crop up… that would make sense to me…

what the heck brought this on, you ask??? lol… late night disaster… and it all started with a drink of diet coke… my favorite drink in the world… yep, I am addicted…

as happens from time to time, my lovely diet coke decided to go down my wind pipe and into the forbidden area of my lungs… not cool… but unlike usual, this time I couldn’t hack the stuff back up… and breathing was seriously becoming an issue… and if that wasn’t bad enough, I had to run for the restroom because the hacking had my abdominal muscles squeezing my bladder… ( and all of this from a sound sleep… I had woken up coughing, and taken a drink to sooth my throat… which soooo  didn’t work )

so a I make it safe and sound to the restroom, but no air ups the anti on my hacking, which lead to vomit… yep, you heard me… but at that point, the toilet was occupy so that my bladder did decide to go haywire… there was nothing for me to do, but to lean in the direction of the tub…. but I leaned a little too far…

needless to say, I ended up peeing in the floor after all my hard work … and to add insult to injury, I had already thrown up in the tub… the thing didn’t dirty was the toilet… it was as I cleaned the bathroom (thankfully able to finally breathe) to within an inch of its life, that I stopped to wonder where the news posts about these famous MS peeps were when they had to make a mad dash for the bathroom… because you know it has to happen… it is a horrible part of life…

the next day, I was feeling blue… and doubt and depression were filling my thoughts… “why continue writing, or painting, or going through the day to day motions???” … but then I opened my email and saw that I had a new review for my first novel…

By
This review is from: Shocking Finds: A Finder’s Keeper Novel (Paperback)
Judging by the author bio at the back of this book, Tracey Clark is obviously a very bubbly and charismatic personality, and this is evident in her writing style from the very beginning to the end of this entertaining Fantasy novel. Her storytelling technique immediately pulls the reader into her world of Fae who struggle to live in the everyday real world. This approach intrigued me right away because there was not too much out-of-this-world Fantasy to get familiar with, and the situation of the main character, Marin, not even knowing that she is a Fae Princess with tremendous powers also adds to the suspense and interest as the story unfolds.
Another prominent and positive feature of this book is that the author skilfully expresses thoughts and feelings from the two main characters: Marin and the man she is destined to be with, Kyland. In fact, this novel is also a beautiful, deep and intense love story, quite apart from the problems caused by Fae curses and helping Marin to understand and believe who she really is.
This book sets the scene for more books to come, and it is quite a lengthy book which took me some time to read, mainly because the writing style is engaging but also intense at times, so that you cannot skim through or skip anything. It is an involving read, but a very rewarding one for both Fantasy and Romance lovers alike, and I’ll be looking out for the sequel to this book!
It was a small thing, but reading this review helped pull me out of my way… I love getting these (and thankfully I have yet to get a bad review)… they are uplifting to me… and mean more to me than my readers will ever know… alrighty… that’s all for now… 😛 later MS peeps…

The new me…

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this is sooooo very true… no matter how upbeat I try to be, I still have moments of regret and mourning… I miss the girl that could do anything, that could and would jump first and ask questions later, that knew no fear and would try just because she was told it was impossible… I miss the way she saw the world, the way she yearned to climb higher and swim deeper…

although I know that that girl is still inside me, urging me to find a way, I now have to temper her where I used to let her run free… now we are forced to work with and around restrictions…

RESTRICTIONS… one of the ugliest words in the English language… while I have found ways to work on my art and my writing, it is the outside world that still needs a work-around or two… I know this post seems relatively down for me, but I blame the heat… it is as the temperature continues to cook my spinal cords and brain cells that I am forced to admit that MS is hard to accepts, to live with…

so now that I have vented, I plan to look for more ways to let the girl from Yesterday come out to play a little more… not really sure what that means, but surely there is a way…

she and I have been working on keychains for the RRBC Block party… there are still a few days left to win some prizes… in fact, my book site Finder’s Keepers Series will be one of the blogs on the 29th… with the winner picking between my bracelets, earrings, and the new keychains as their prize…

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but that is all indoors fun… my lost half is itching to do something outdoors… maybe someday I will figure out a way to let her come out to play

Warm and Worn

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I don’t know about you guys, but I am soooooo ready for fall… I swear that the oxygen is beginning to evaporate because of this outrageous heat… omg…

I had to run out to the post office to mail out a prize for the RRBC Block Party and the heat was out of control… the car temp (which I truly hope was broken – on my 2016 car… almost a year old… ??? that’s long enough for things to start breaking… right???) well it told me that it was 101 degrees out… which is just wrong on soooooo many levels… but the prize wasn’t gonna mail itself… there was nothing to do but to drip my way to the counter… (omg – the sweat)

hopefully it will cool down out there by the time I’m forced to make that trip again… the heat has been zapping my energy and will to ??? well, to do anything ready… the amount of movement it takes to get out of bed already has me broken out in salty, dripping sweat… it is impossible to think straight when you are constantly cursing the salty tears burning your eyes…

but sopping wet and blood shot eyes, I managed to get my winner’s package sent… lol… which reminds me, if you guys want to win some goodies, the RRBC Back to School Block Party… every day this month there are chances to win prizes on the awesome blogs signed up to participate… bloggers, authors, and all manner of fun peeps… in fact, I did a stop on my author blog – Finder’s Keepers – Author Tracey Clark– on aug 5th, and will be doing another stop on aug 29th over on my book blog – Finders Keepers Series… woo who… come have some fun… and remember to head to RRBC to check the line up each day for new chances…

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Evil Confusion… Evil MS

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I want to growl, maybe even howl… there is definitely a scream or two building up at the inefficiency of my mind… okay… that might be a little harsh… but still very true…

I love writing… which is very surprising seeing as I deal with MS (confusion) and dyslexia every day, and especially during the hotter summer months… as the temperature rises, my MS symptoms make themselves known… misunderstandings and an inability to verbalize my thoughts is frequent… but after growing up with the confusion and the lack of articulation associated with dyslexia, these symptoms are nothing new…

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part of creating novels and short stories is research… something that I have always abhorred… but the added difficulties of living with MS has made evil research even worse… it’s hard to explain, but my brain sort of shuts down when faced with too much confusion… learning something new, or focusing on and answering questions creates a short circuit in my ability to stay awake… I simply pass out… it is maddening… and disheartening…

I want to create stories that can be enjoyed… stories with added tidbits of honest real world information to pull the reader in and allow them to visualize my words as if they were living the story…

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finding a balance that allows my mind to work at its own pace, and my creative side to put together works I consider worthy of publishing is hard… but in the end it is worth it… there is a pride and joy that overcomes me as my words become published works… it is a type of high, a high of accomplishment… (oh course, then I have to deal with writer’s depression… something that happens after the publishing phase is over and down with… but I deal with that by taking on art projects and starting on new writing projects… )

if the confusion of MS symptoms and dyslexia were too overwhelming (or not worth enduring) I never would have finished my first novel… now if I could just find a way to stay conscious during research, life would be a lot easier to navigate…

good luck with life, and good luck with you own MS symptoms during this overwhelmingly hot season… happy wordage, tracey

sign up for Finder’s Keepers Newsletter and receive updates on future works… 😛

Nudist Colony here I come…

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I’m meltinggggggg…….. I’m melting… when to the store with mom and she suddenly looks at me, head cocked to the side and asks “Your shirt is wet. Is that sweat under your breasts?”

“Why… yes, yes it is. and thank you for calling attention to the matter….” we were in the middle of Wal-Mart… looking at bras… lol… I felt like promising the sales attendant that I wouldn’t try anything on…

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(well… that pic could mean something completely different… but it was the closest one I could find to what I wanted… )

even if I did move to a nudist colony, I would still run around covered in sweat, my head swelling from the heat… I need shade, a strong breeze and as little clothing as is acceptable… I swear, this heat makes me want to be a man… then I could run around with flip-flops and shorts on, and nothing else… sure, some places demand a shirt and shoes before they will serve ya, but that is what wife beater tees are for…

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unless I can locate one in Antarctica…omg I am burning up… lol… I think I will start sitting on piles of ice throughout the day… in college (due to roommate fights and the heat in the room when someone left the heater on in summer) I would take ice cold bathes before bed, drop my body temperature low enough that I didn’t have time to overheat before I feel asleep… this weather has me eyeballing the tub and thinking about making a run to the store for a bag of ice…

and just think peeps, the worst is yet to come… lets all move north…

but inside with the AC I am cool enough to work on my books… just finished/published the second book in my Finder’s Keepers series… woo who… urban fantasy romance…

if you want book info sign up for my author Newsletter

and keep cool… I’m off for some ice chips and some edits…

watch me run…

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I ran… the wind blew, the sweat started to drip, my breathing accelerated, and still I ran… I became a bullet train of MS glory… muhahahaha

okay… that isn’t me… and my distance my seem trivial to some, but to all you MSers out there, when I say I managed to beat my time on the 25 foot walk, it will mean something… when I first got sick, 25ft felt like miles… a marathon of pain… and then I had to sit down… and that was after I had bounced off the walls as I wobbled down the hall… and my time… HA… a lot embarrassed me back then… now I share everything… bladder issues, jumbled words, or loss of basic abilities… but at the time I wanted to cry… I felt like I needed to push harder, like people (even my dr) would look at me and think “She isn’t even trying… there’s nothing wrong with her!!!”

back then my 7+ seconds time was humiliating… as I grow with my MS, and accept more limits, and strive for goals, I am better equipped to handle the ups and downs… but this one, folks, was definitely an up… 2 seconds… point-5 seconds faster than my last time…  and what fancy foot wear did I don in preparation for my big run???

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HA… no tennis shoes for this girl… I showed up for appointment with my comfy flip flops on my feet… but this 25ft walk (or in my case run) is serious business… lol… so I kicked them off… and my doc, well accustomed to my ways by now, told the little nurse in training to “back out of the way…. she really is gonna run” … lol… in my stance and off I went… it is the small accomplishments that help to balance out the crap… and that 25ft is now my favorite part of the neurologist’s office… that and my doc is funny… that is why I think she will totally appreciate my runners gear…

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I soooo need to find something like this… 😛 … day by day, highs and lows, I want everyone to keep shooting for those small moments… it can be anything… a good time on your 25ft walk, a day without headaches, making something that has been giving you trouble for years… each small moment gives hope … and, for me, usually a smile… because I am well aware that I am acting like a silly monger, but for once I am having fun with my MS… tracey

 

Pain in the Arse

 

Dead leg… what the heck is going one here…

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I haven’t had any episodes of true numbness… thank heavens… but it does seem like I can’t stand to sit in a chair like a normal human being with out my legs and arse falling asleep… quickly…

and then the pain hits… which just seems unfair… I can’t sit in a theater, or reception hall for any length of time without the inevitable sleepy bum and antsy legs… and then OMG the pain… I can barely make it through a movie, and sitting through a graduation or awards ceremony is torture…

it is depression to realize that supporting my cousin at her college graduation is going to be painful and that the tears in my eyes will be less for the pride I will feel for her accomplishments and more for the depression welling up in my heart… I mean… no one wants to realize that their life is soooo very different from everyone else’s life… all of those other people in the stands will be beaming with their happiness… while I will be leaning one way and then the other, just to relieve the ache building in my backside, not to mention the pins and needles racing down my legs…

and if I don’t get up and move, the pain finds its way into my back… but does it stop there… ohhhhh nooooo… I have now reached the point where I either need to lie down, get in a lazy-boy and prop up my legs, or if it is really back, get in a hot bath… and on top of being depressed that I can’t just sit through the event like everyone else, am embarrassed, which usually brings on the tears…

I remember sitting through one of my cousins weddings when I was barely a year into my diagnosis with MS… and I moved so dang slowly… but anywho… I had sat through the event, the pain had started, and I saw the long line of people waiting to congratulate the couple… there was no way I was going make it stand in that line, and no way I could make it down stairs to the reception in the church basement, let alone stand or sit around celebrating the nuptials… and it was early in my disease, meaning emotions were even more out of control than they are now… soooo I broke into tears… sobs actually…and mom had to make our excuses, which was embarrassing, and caused even more tears…

mainly because I knew that there were going to be people that looked at me and didn’t understand… they wouldn’t know why I was sobbing or why I was leaving… so yeah… ms sucks… at least when my other cousin graduates from college, it will be quiet tears of pain and pride, without the sobs…

I almost wish that my cousin would take a few more years to graduate, and as for the movies… I go to maybe one a year… and it has to be something I am dying to see, because I know halfway through my body will start to feel like I am on my last legs, so I will need something great to take my mind off of what is happening to my body…

MS can really suck, so work with it and around it… otherwise it will drive you insane…

and if you want to donate to Walk MS, Click HERE

or if you just want to check out my Walk MS post, Click HERE

Fear Me…

Okay… I came across this poster on Pinterest just had to share… it is essential to know and accept that MS patients deal with fear and anxiety on a daily basis…

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I already do “Sharing Fear” and “Coping with Anxiety List”… except for writing down my anxiety, but I may subconsciously give the characters in my novels and short stories some of my anxieties and fears…

I have noticed that one of my sub-characters has a problem with hot weather, and a main character has shyness and wallflower behavior to rival my own… lol… but with my stories I can find ways for them to move past these issues…

with sharing my fears, voicing them out loud, I feel a weight disappearing… just by saying it out loud I realize that my fears aren’t as impossible as I thought… they aren’t as big and all consuming as they appeared… and usually, I have my mother to tell me that everything will be okay… and even if she doesn’t have an answer that will actually fix my fears, she has a suggestion that cheers me up…

as for the coping with anxiety list, I already said that I don’t do a regular list of fear/anxiety and that I share my fears when the hit… as for the rest of the list…

My mother is always there for a quick hug when I need one, and I am all about relaxing bath time… in fact I spend more time in the tub than I do out… at least that is how it feels… when I can’t sleep or my anxiety is getting the better of me, or even if I have some pain that refuses to go away, I head for the bathroom and shout out ‘I’m going swimming’… some hot water and low lights, and I am off to sleepy time…

A calming breath is always helpful, and diverting activities are at the top of my list of coping mechanisms… usually I use one of my favorite movies/shows to zone out… my mind already knows all my favorite parts of the show and tunes itself to the familiar scenes and actions… working on an art project also helps to balance out my mind… and man do I love art projects… especial if it is something new that I have never tried before…

and finally, Avoidance… I know what will cause me to be angry, anxious, sad, etc… and avoiding news, shows, people, events, and all the other disruptive activities that I know will affect my mental state is part of life now that I have MS… I don’t usual say why I am avoiding something, and that is wrong… I should just come out and tell those around me that I need to disengage from the situation so that my mental state isn’t adversely affected… I mean, if you know that going to a party with ‘uncle Dick’ or ‘friendly Ratchet’ will cause your temper to flare or your tears to flow, then walk away… when I can walk away, I avoid the situation like the plague…

and if you want to donate to Walk MS, Click HERE

or if you just want to check out my Walk MS post, Click HERE

How dark is your world?

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I try to add an upbeat note to most of my MS posts… but this is a feeling that we all have… it is hard to look around at what we are missing out on, and not feel a little blue… and no one can look on the brighter side all the time… by now, I had planned to have a good job, a kid or two, and be taking care of my mother… it would have been nice to be in a steady relationship as well, but I never was very good at dating, so I planned to just get employed and buy some sperm, and let the rest fall however it would…

but the other day, I wanted to cry… I immediately explained how I was feeling to my mother, because if you don’t voice your feelings they can bury down deep and start to eat you alive… but we were talking about where we would move, and I realized that the things we wanted out of a new home were vastly different, and would never mesh… and that ultimately, all I could do was to make suggestions…

but by this point in my life, I had planned to have the money to have a wonderful home (while asking mom suggestions)

now don’t get me wrong… mom bends over backwards to make me happy, which she doesn’t have to do… it was the thought that I will never (barring a miracle) be one hundred percent in charge of my life…

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But I am still able to write my novels… and maybe one day, they will make enough to give me some measure of independence… my cousin is having a baby… and I will be able to spoil that child, and any future children, and show them all the love I would have giving a child of my own… and finally, mom is willing to move… and I will look at that as the adventure it will be… she is even willing to travel around on walk-about (that’s when we drive from state to state, stopping when we see something of interest)…

these are all wonderful things…. when MS blues come knocking on your door, you need to find one or two things that brighten your world… when the bad makes itself known, you have to remember/find something to take away the sting…

and if you want to donate to Walk MS, Click HERE

or if you just want to check out my Walk MS post, Click HERE

Starting Fires…

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When someone asks me to explain Multiple Sclerosis to them, I say it is like holes are being burned into your brain… Owwwww… but that is basically what it is like… an electrical fire…

information gets passed from neuron to neuron, sending little electrical surges to get the info from point A to point B… then somewhere along the way, something goes wrong… because of MS, the electrical surges that a healthy brain can use and process builds/hits a wall/spikes…

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On a MRI, these spikes show up as white areas… AKA: electrical fires… or lesions… and when these fires burn out, they leave a black spot… basically a black hole… so when I say that I have holes in my head, I mean that literally…

March is MS Month… reach out to everyone you know, and lets raise money to find a cure, to put out the fires… donate on my national MS page, or start your own… and enjoy each day…

and if you want to donate to Walk MS, Click HERE

or if you just want to check out my Walk MS post, Click HERE

Who turned off the lights???

The high dive, the bungee swing at Kings Island, zip-lining between two mountain peaks, or even sitting on the edge of a cliff… (okay, I was a little bit of a dare devil in my youth) but climb it, jump it, swim across it activities never frightened me… my mother probably had a few stoke moments, but I love the feeling of freefalling, the moment when it is over and you can look around and go ‘huh… I did that…’ like I said, not the smartest decision maker… lol… but man was it fun…

and not one of those moments had me pausing, wondering if I should back out, fearing the worst… I even decided to swim across Grayson Lake, just to see if I could… I knew that I could float all day if I had to (seriously people, I bob around like a dang raft..) It wasn’t until I got home, told mom and watched her face turn white that realized maybe I should have thought things through a little more… like swimming parallel to rocky shoreline so that I didn’t have to worry about boat running me over…

I do have a problem with the thought of sharks and I absolute detest the beach (I mean, who really wants deal with sand that has a mind of its own and will crawl into every crack and crevasse??? that’s just wrong… but still I go out into the water (I run back when things start touching me, but the fear isn’t enough to stop me)

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But when I started losing my sight, with dark clouds building around the edges, because of MS… I broke down… I was already having issues because my case was fast and out of nowhere and it affected my personality… I acted like a toddler, with out of control emotions and absolute trust that the adults would fix things…but something (and I’m not sure what… something said or maybe a random thought) scared the life out of me…

It may have been the eye exam they took me to while I was in the hospital… (that was a horrible experience but too long for right now) anyhow, one thing got stuck in my head and wouldn’t let go… ‘I wouldn’t be able to read the last Harry Potter’ sounds silly, but at that moment, that was devastating… I bawled like my life was over…

thankfully, my sight came back… but even if it hadn’t, my mother (my rock) was there… she told me not to worry… if I couldn’t read, she would read it to me… with MS, you never know when things may change (for good or bad) but I hope everyone finds their person, their rock, the one that can take your devastation and make everything bearable…

and if you want to donate to Walk MS, Click HERE

or if you just want to check out my Walk MS post, Click HERE

Testing out the waters…

 

8d11544e96509eff0e5d8f1ba47aed5fI want to be confident and sure… but there is that little bit of doubt in the back of my mind, telling me that no matter what I do, no matter how many people tell me they enjoy my stories, and no matter how often the urge to continue putting my words on paper hits me, I am doing the wrong thing… it may be the dreaded writer’s doubt/depression, but I also have to contend with the MS blues… no one can keep a smile on their face 24/7… but what I really think it is, is fear… FEAR…

What if I go to a book signing and freeze up??? What if no one buys my books??? What if I do it wrong, or say the wrong thing???

Damn shyness… I hate being shy… I know that once I get to know someone, I come alive… but at a book signing I will be floundering for purchase… if I have someone I know with me (Assistant), at least I will feel comfortable with them, but the purpose of a book signing is to interact with reader… AKA: Strangers… Gulp… Forget freezing up, I just hope I don’t throw up… And if I can manage to open my mouth, I know there will be some books bought… every month, people are picking up copies of Shocking Finds in eBook (kindle), but I don’t see those people… I don’t speak with them face to face…

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Amazon

(check out my book website for other buy links for stores other than Amazon)

I have signed up to be a part of three book signings this year… it will be my first year participating in the frightening process… yep… you readers out there scare the hell out of me… lol

But forget about doubt and fear, forget about shyness… What if my MS acts up, and I embarrass myself in front of all those people that I want to be entertained by my work??? What if I have an exacerbation and start bawling in the middle of one of the crowded rooms??? What if I sweat so much that I look like a drowned rat and no one wants to come near me, and therefore no one buys my books??? What if —

What if I miss this opportunity???

There will always be doubt, fear and shyness… and MS will always be a part of my day to day life… and there are a lot of questions that I will only be able to answer once I have survived the trials… The one thing I know for sure… I refuse to miss an opportunity no matter what I have to face… Therefore, I plan to be that girl sweating profusely, face red in embarrassment, and stumbling over her words at three signing events, if not more…

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Wild in West Virginia

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Imaginarium Convention

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Rebels and Readers Author Event

That’s one event in hot weather, and two in relatively cool/cold weather… that should give me a feel for what I will be up against… and yes, this is war… lol… me against my MS and shyness… but if I managed to do solos in high school, I know that I can do this… when we love doing something in private, showing the results to the world can be difficult… but then, nothing worth doing is ever easy… 😛 or so I will continue to tell myself… Happy wordage everyone

and if you want to donate to Walk MS, Click HERE

or if you just want to check out my Walk MS post, Click HERE

 

What do you mean “I’m having a Breakdown?”

this is definitely true… and while I hate to admit it (even more than the bladder weakness) I force myself to self evaluate constantly…

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sometimes, it is easy to know that my emotions are throwing me a curve ball… like when I broke down into tears because mom didn’t want to go straight to the mall… did she say she wouldn’t go?? no… this happened early on in my diagnosis… and I heard when mom said she need to make a stop before we headed to the mall???

“You aren’t gonna get to go to the art store.”

Needless to say, there was snot, tears and some hyperventilation… we eventually made it to the mall, but mom’s pit stop turned into a doctor drive by… thank heavens my doctor at the time was a family friend, cause mom stopped in and simply said “You need to up the does on her happy pill!!”

before I even made it out of the hospital, I was informed that I would need a mood stabilizer… and boy were they right… my heart would break at the slightest misunderstanding… thankfully, my anger wasn’t a problem… but it could have been… when lesions start burning out hole in her head, your personality and they way you respond to events in your life can change… the information seems to get lost as you fight to figure out what the hell is going on, and how you’re supposed to function…

but one step at a time, I you can stop to think things over, you may not understand but there will be times when you notice a difference… you’ll think ‘huh… that doesn’t seem normal’… this is what I try to do… it was hard at first, confusing… and didn’t really work… but with time, I got better at spotting my actions and reactions that didn’t seem right… I know I still get things wrong, but it isn’t about being right all the time… its about learning to function, and I do that by evaluating the things I do and say, and trying to make sure that it makes sense…

and if you want to donate to Walk MS, Click HERE

or if you just want to check out my Walk MS post, Click HERE

Feeling Twitchy

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lol… this has been a biiiiggggg issue… I call my spastic movements ‘twitches’… but mostly it affects my arms… I have accidentally hit people and object more often than I can count… but the height of the spastic life has to be the time I threw my drink in my own face… OMG… Diet coke right to the face…

the involuntary movements have been less frequent in the past few years, but when I first got sick it was horrible… it eventually got to the point where I could feel them coming on… if I tried to hold on to the feeling and stop it, the feeling became quite painful… but then, it could also be painful to just let the ‘twitch’ happen…

I busted my knuckles on the driver side window just about every time I got in the car… or, you know… the passenger… 😛 Just go with it MS peeps, and always stand next to people you dislike … and for the love of mud, be careful while drinking…

and if you want to donate to Walk MS, Click HERE

or if you just want to check out my Walk MS post, Click HERE

Keep trying

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Isn’t that the truth… if I do too many things, too many days in a row, then I am sooooo tired … And in pain…. I need days to recuperate… it’s really hard to work around this MS detail of day to day life, but most of the time I can… but this means that scheduling too many activities in advance is a bad idea… or is it…

When I went to DragonCon (think costumes, writers, actors, conventions) I knew that just walking around and taking part in the insanity wouldn’t happen… but there were a lot of authors I wanted to see, and a bunch of writing workshops that interested me… soooo what did I do??? I took a chance… I signed up for all the workshops that caught my eye… If I could make it, then I went… And when I needed to rest or sleep in, it was disappointing, but I did…

But planning and resting is all well and good… that doesn’t mean that I didn’t overdo… yep… I wanted to go and see one of my favorite authors at one of the talks… problem was, I was exhausted… totally wiped out… Still, I went… I even sat up front… I mean, right up front… Where all those people I looked up to could see me… And what happened you ask??? A 110 percent fatigue … I tried, i really did… but no matter how hard I tried to keep my eyes open, I passed out… and then my body would do that thing where it jerks awake because you are about to crash face first into a your desk, or your about to fall out of your chair… *clears throat… ahem… cough, cough…* oh, look… my cheeks are red…

so I keep jerking awake just as I was about to fall off my seat… sitting right in front of Laurell K. Hamilton and Jim Butcher… I was embarrassed beyond belief… And what did I do about this embarrassment???

I made sure to catch the next time they were scheduled to talk, the next day… oh, I was still embarrassed but that didn’t stop me… I did however make sure not to sit in the front row… lol… and this time I was wide awake and I had a marvelous time…

always keep trying… and never give up…

and if you want to donate to Walk MS, Click HERE

or if you just want to check out my Walk MS post, Click HERE

Cross your legs and pray!!

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Wellllll…. heck… sure is nice to know I am not alone in this… it is embarrassing but yes, yes I have wet my pants like an un-potty-trained toddler… for the most part it isn’t that bad… but I look a little insane at times… I mean, I am 35 years old… and I rush to cross my legs every time I feel a sneeze coming on… Why??? because I don’t want to pee all over myself… and sneezing seems to be my trigger…

and heaven help me if don’t notice the sneeze/cough before it happens… grr… and the problem of a full bladder… especially first thing in the morning… you know, that moment when you want just a few more minutes of sleep, and you convince yourself that peeing isn’t that important… because, hey… you can hold it for five more minutes… HA… I don’t think so… if I wake up and need to pee, I get up and pee… there is no waiting…

it is like my bladder, my body, has forgotten how to hold it… I feel the need to run to the restroom, and it is probably too late… for the love of mud, let the cursing begin… and the vacation rule ‘have you used the bathroom??’ is in effect every time I leave the house… don’t feel the need??? too bad… get in the bathroom and try just in case… yep…

it reminds me of one of our vaca trips, where we took two cars and used CB radios… and when my grandmother needed a restroom break??? mom got on the CB and said “breaker, breaker, we have a senior citizen with a bladder control problem…” lol… mom got wacked on the back of the head, and we all laughed… more at the fact that mamaw was beating up the driver than anything else… but the whole thing was hilarious…

Well, I feel like someone is on some mystical CB every day now, and let me tell you… NOT SO FUNNY…. but I am 35 dangit, and I will pack baby wipes and extra under pants before I pull on a pair of depends… you hear me MS… I will not go down without a fight… grr… 😛

and if you want to donate to Walk MS, Click HERE

or if you just want to check out my Walk MS post, Click HERE

 

Help change the World of MS…

I love this GIF, and felt like posting it a second time… but this post is about an upcoming MS event… Walk MS… you can find both Walk MS and Bike MS events in your area by following the links at the bottom of the post… We have five weeks and two days until the day of the Walk for my area… I will be upping my MS posts until in the meantime… sharing my own MS insanity…

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Starting Monday, March 7th, Fundraising week begins… From Bike MS to Walk MS, there are dozens of ways to show your support… there is even something called Challenge Walk MS… Last year I participated in Walk MS, I even attempted to join in the mile walk around the park… Hmmmmm… that didn’t go so well for me… last year, my walking abilities weren’t as on par as they are this year and I ended up running out of steam less than half way through… it wasn’t pretty… I had to cut through the park, there were tears and embarrassment, but once I calmed down and had a chat with my momma, I enjoyed cheering everyone else on as sat in the shade sweating as if I had just finished a triathlon…

This year the Walk in my area will be across the bridge in neighboring WV… I managed to attempt participating last year because it was downtown at the park… I doubt I will make it this year, but I wanted to give a shout out to everyone giving and participating in this cause…  I also want to participate as a virtual walker…

I have said that MS helped me to find my passion in life, but without the drugs, doctors, and therapies for this disease, MS would have taken my life long ago… it is the support and volunteers that make continued research and development possible… I am grateful to everyone giving their time, donations, or just their kind words… it is because of you that I will get to continue writing and living a life I never envisioned, but that I find small joys in every day… when it comes down to it, it isn’t the big events in life that matter… it is the small moments that mean the most…

If you want to give or join up at your local Walk/Bike MS (and did I mention that Shemar Moore joined in Bike MS last year… yummy… I mean thanks for calling attention to this cause) just …

CLICK HERE to head over to my donation page for this years walk

CLICK HERE to learn more about Walk MS…

CLICK HERE to learn more about Bike MS…

Thank you to everyone taking a moment to learn/give to this cause… and happy wordage everyone…. Tracey Clark

Wear your sweat with pride

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OMG… Hot weather and my sweat glands sooo do not get along… I melt like an ice cube in 110 degree heat… I hate it… it is sooo embarrassing to be standing in the middle of a group of people enjoying the breezy 70 degree weather, and there I am in shorts and tank top, and flip flops… drowning in sweat… Sweat that increases with anger, tears, and especially anxiety… Anxiety that hits me at every turn…

I am doing so much better these days, but I still become confused at the drop of a hat… and that causes??? you guessed it… Anxiety…

And explaining to people that I may need for them to repeat instructions multiple times causes??? YEP!!! Anxiety….

Large crowds, meeting new people, asking questions, making phone calls, making a speech…. ???? …. Anxiety, Anxiety, Anxiety, Anxiety, ANXIETY…

but on the positive side… when I first got diagnosed I couldn’t even leave the house without my temperature sky rocketing, and my lesions firing up causing a flare up (exacerbation) which manifested in headaches that brought me to tears and caused my out of control emotions to screaming/ crying tantrums… Which caused embarrassment… which caused??? OMG…. more Anxiety…

I had to spend the first three years or more in one room that had a window air conditioner on top of the central cooling system… when I was first diagnosed, I kept my hospital room sooooo cold that the nurses actually grabbed a jacket before entering… lol… and yes, I was there long enough for the staff to know that my room would be freezing…

Plus side… I have been out in 80 degrees (sweating) without a headache… so I will take that as an improvement…

*As for that perfect world where the temperature is always perfect… that would be San Francisco… Mom took me there in the early days because it was on the list of dream vacations… if you have severe heat issues, vaca in San Fran… it is wonderful… these days, I enjoy a little heat when it is horribly cold… I might even need a jacket if I ever go back…

Evil, evil, PT

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Okay… so no hip replacement here (not yet anyway… :P) I just loved this comic strip… pinterest is great to find all kinds of stuff… the one thing hip replacements and I have in common would have to be Physical Therapy…

With MS, my pain comes and goes, and jumps around… the one constant is the back pain… there is always some back pain for me… soooo, for the second time, I am off to PT… things seem to be going better this time around, but then, that may have something to do with the fact that the guy in charge of my PT sessions is related to my Neruo-PA (she is the one I see for all my MS-doctor visits, and has been there for the most of my disease, no matter what other doctors were in charge of my diagnose) Sarah Ervin rocks… but anywho… this guy can talk directly to my PA and know more about me than all the other doctors I have seen, because, although there is central online information, most doctors never talk face to face

I have always wanted to force my doctors to have a conference call, a sit down, or even a dang email chain… just communicate so that everyone knows what is going on, and I (the patient) am not forced to defend your medical and drug choices to all the other physicians in my rolodex… grr…

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But back to PT time… some is easy, some evil and painful, and man can you be sore the next day from the smallest movements… the first day of PT had me moaning and soaking in the tub for hours… but the second wasn’t nearly as bad… the PT session will last a few weeks, not sure how long (as long as insurance pays up) and depending on the stretches and movements my PT-dude puts me through, I will be facing some pain and soreness… but hopefully I will feel a little better by the time it is over….

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But some of the moves  can make you feel down right silly… lol… pretzels must be extremely limber… 😛 wish me luck… I am off to another session later today… I hope to get some more sleep in before then, but who knows… I am exhausted, but my sleep has a mind of its own… happy wordage, Tracey Clark