WTH did I do??

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HA… you have got to be kidding me… I wish sleeping tricks worked on me, but so far, not so good… right now I am on cursing MS… did I mention that lack of sleep has a serious adverse affect on my nerves/personality??? It is really hard not to be snappy when you are hurting and/or in serious need of sleep…

What did I do to cause such back pain that I want to scream??? Well, I straightened the bedroom… anddddd… that’s it… halfway through I knew I was going to be in trouble, but it wasn’t like I could stop… I needed to more bedrooms so that my cousin could have a bed for her and her husband… besides… it used to be her room…

I am floating around homeless while my basement apartment had the floor torn up due to water damage… and I have been in Mom’s middle bedroom for the last week, but Christmas means cramming lots of people together… so I had to move… it doesn’t sound like a big deal, but my back is reminding me why I never clean… it freaking hurts…

and to add insult to injury, I had one doctor explain that I isn’t that something is wrong, it is merely that the lesions in my brain are sparking a reaction … kind of like a phantom pain… and therefore pain meds won’t help… even had a pain doctor admit (as she made me cry) that she didn’t like treating MS patients because they never got well… you couldn’t fix them…

to all this I have to say, bull shit… I know my body, and PHANTOM pain or not, a pain pill helps… if this is all in my head, I say, ‘find a way to deaden that particular batch of nerves’… there are certain pains that I know a pain pill will not help, but there are others that are helped greatly… I can tell when a headache is from an exasperation or when I just need some rest… I know the difference between stomach pain and acid reflux… and dang it, I know the difference between back pain and ‘its all in my head’… it is moments like this that I fear for my future as an MS patient…

but right now I am gonna cross my fingers and hope that the pain goes back into hiding… then I can nap before I head out to fam time, and later on it will be time for more editing of book two of the Finder’s Keepers series…

Happy wordage

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Pedicures rock

Have you ever seen the amount of skin scrapped off during a pedicure??? well… me neither… lol…. why would we want to see that? just close your eyes and let the magic happen… but only go to a nail salon with those wonderful massage chairs… ahhhh….

anywho… it seems that the MS has quadrupled the amount of callouses on my feet… especially my heels… it is a nightmare… and using that heel stone at home just doesn’t cut it… when they start to feel hurty, the best medicine isn’t for me to attack them at home… it is a nail salon… those people have the magic touch… or maybe they put acid in the water they make you soak your feet in beforehand…. but who the heck cares… MAGIC…

also… I feel better about myself if my feet don’t look diseased… really, the callouses are that bad…

but the downside…. it is costly to get a pedicure… and not something that a lot of people with MS would ‘waste’ their money on… I would be great if SSI paid for one visit a month… I know my feet would appreciate it… or heck… if they could just tell me what it is that is so different about a salon pedicure vs a home attack…. either way, my feet need this … the callouses can build up to the point that walking on them becomes painful … sooo…. free pedicures for everyone… and all is good 😛

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

Author Tracey Clark

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Howdy all… this is Tracey Clark here… I am a country twang gal from Kentucky… I also live with MS… Diagnosed in 2005, I went through years of being lost… when I first got sick, the MS came on hard and nearly killed me… the doctors didn’t know why I could walk, they didn’t know why I wasn’t blind… I had trouble walking, talking, writing, making sense and understanding what was going on around me…

When the doctors came in to my hospital room and told me that they would have to drill into my brain if the steroids didn’t shrink the ‘spots’ showing up on my MRI, I happy said ‘Okay, but can you check on my mommy, she keeps crying’… when I first got sick, it happened so fast and without previous incidents (normal flare-ups where the legions cause falls, sight problems, speech and walking issues… basically everything that was happening to me all at once) … this caused some confusion… the doctors tested for everything… and finally decided that it had to be either MS or brain cancer… ergo, if the ‘spots’ on my MRI didn’t shrink from liquid IV filled with steroids, then it had to be brain cancer and needed to be biopsied …

Because of my addled mind, I felt and acted like a toddler… and like a toddler, I wanted my mom happy, and I knew that she and the other adults could fix anything… all I wanted was yummy food and gifts… when well wishers would come to visit, they would ask what we all ask in this situations… was there anything they could do for me??? and I would answer ‘You could bring me a present!’… I told one of my aunts that I wanted a pony, and I told my mother that I needed a stuffed teddy…

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And when the doctor checked my sugar, the steroids had jumped it up to 400… she looked at me and said, ‘don’t worry… it’s okay for your sugar to get higher than 400 every once and awhile’… HA… biggggggg lie… but then, they all thought that I would die…

But here I am… MS kills, it confuses, and it changes on a dime… I can’t tell anyone with finite answers just exactly how I have managed to survive or why I am doing as well as I am… what I can do is share what I have gone through, and what I have done… hopefully, my words will help in some way… I am a firm believer that the only way to fight fear is to unmask the unknown… living with, or knowing someone with MS is frightening… so let’s talk about it…

One of the ways I coped in the beginning was to do arts and crafts… mom would sit on the bed and make beaded jewelry with me… the motions of getting the elastic string through the tiny bead hole helped my motor functions… childish games on a handheld PSP helped with understanding and processing… *push A button and your player jumps, push B button and your player runs* that kind of thing… and always, always…. I immediately stopped what I was doing if  my head started to hurt… but most of all, I made up stories….

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When I first fell ill, writing a complete story was beyond me… I would just day-dream of different worlds and characters… about five years later, I started to get a little better at writing down my thoughts… when the MS first took hold, I couldn’t even write down my own name… being able to write down short sentences/basic information was a big step up… Now, ten years later, I have my first book baby published… Writing is a big part of hope I coped with my MS, and now I can share my stories with others.. hopefully my second novel will be published in 2016… I believe that having hobbies/something to focus on helped my brain to reroute the processes that I had lost… even healthy people can benefit from hobbies/crafts/arts…. but the brain is a marvelous thing…. give it something to do and see what happens….

Happy wordage everyone…. Tracey Clark

if you would like to read more about ME… head on over to my author’s site and enjoy…. 😛

Author Tracey Clark‘s Site

to find out more about my books go to the Finder’s Keepers Series blog

MS News

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Exactly… lol… let’s just say that it is a good thing that i write while in a comfortable position…

I love my words, and I love the worlds and characters that I am able to create, buuuutttt…. the dang edits knock me on my arse… about an hour, that’s all I get… then my eyes get heavy, my eyes start to cross, and between one breath and the next I am out like a light… I wake up a few hours later (lucky if my laptop hasn’t crashed to the floor) and go back to my edits… Writing saved my life, and helped me to cope with all the losses when I was first diagnosed… there was a lot that i couldn’t do for years… but luckily, i had my stories… at first i couldn’t write or type… but I could imagine and dream up stories to tell myself… It took about five years before I could finish writing a sentence without passing out, and or crying with a headache… It has taken a lot of time, but for now, I can write and come up with story after story… now if I could only pass off the edits to someone else… lol…

no one seems to get it… the phrase ‘just lay down when you get tired’ is hurtful and completely missing the point… the point being that I don’t have time to slid into bed, I don’t have time to put my computer in a safe place, and I definitely don’t have time uncross my eyes… 😛 my brain looks at those continuous edits and says ‘nope, no more, I’m leaving’

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When I do catch on quick enough to the fact that my brain has had enough (and I’m not just bored to death with edit), I can try to change tracks… stop editing and move on to one of my craft projects… It isn’t that I hate edits, it is the process of cognitive input… for some reason, I can make up stories and write blogs until the cows come home, but ask me to research or fill out a questionnaire… that’s when my brain starts to get cross… hmph…

As for going off to bed for a catnap??? Who wants to be in bed all the time? If I stopped everything to take a nap every time there was even a hint of exhaustion, I would be in bed 70% of the time… booo… I already feel like I missed ten years of my life while I was dealing with my disease… I was hit hard when I was diagnosed… one moment I was a 25 year old college student and the next I was in a hospital bed, acting like a five year old… Why I got better, I don’t know… I just know that Multiple Sclerosis can throw a person into blindness, but that days or months, or even years, your sight can come back… which to me means that we should never give up hope…

getting sick sucks, but life changes on a dime, figure out what you want to do, and then go day by day figuring out what you can do… if you can’t drive to the store today, order a pizza and drive to the store tomorrow… When i am really down, I have my mother for support… somehow, she manages to pull me out of my MS blues when something I want to do is suddenly impossible… I hope that every one out there (MS or not) has someone in their life that can be there for time half as much as my Mother is for me…

Happy wordage everyone… I hope you enjoy the second friday of the month/MS news post… Tracey Clark

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