Tag Archives: embarrassment

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

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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