Self Doubt

 I saw a T-shirt on CaféPress. It said, “My Disabling Chronic Illness Is More Real Than Your Imaginary Medical Expertise.” I want that shirt!

 Last night at work was uncontrolled chaos as far as the machinery went… Between the complete exhaustion, border-line migraine, and various other aches and pains it was a fight just to get there. But I made it through! At the end of the shift, I was inquiring how my Supervisor would hold up under an Audit they were having today. He made the comment, “We could use you, but you do what you think you have to do.” Then it dawned on me…he thinks I’m “faking” to get out of the insane overtime!!!

 Now, I’ve read all kinds of material about the “mental tole” of an “invisible” chronic illness…I’ve talked to people who fight the stereo-type of “lazy faker”. I’ve sat through repeated office visits where my Doc asked not only me about how my “mental state” was holding up, but she also asked my hubby about signs of depression, BUT…his comment really got to me!

 After I got home and collapsed of the couch, laying there feeling every part of my body trying to kick my ass from  the inside out, I still had a moment of wondering if he was right. Wondering if it was all in my head and if I just quit whining, got up and “pushed” if it would all go away. Maybe I’m just not trying hard enough….

 Bull-Hockey!

 Yes, I do my best (as most of us do) to hide the glitches, aches, pains, and other crap, but self-doubt isn’t a symptom on my laundry-list and I don’t plan on putting it there!

 Why would anyone WANT to intentionally live like half-an-invalid? Because, let me tell ya…limping in steel-toes is NOT a good look! “Walking” down an isle between two machines in a pinball fashion leaves bruises (not to mention drawing some odd looks). Brain-fog really sucks the confidence outta your IQ. Dropping everything can even lead to financial loss…I’ve lost several tools in machines that way!

 I may occasionally be called a “Drama Queen” do to a random tendency to overreact…but this is a bit past that. After all, it would be WAY too much work to try to remember to walk like a drunken zombie and keep my hands set on “High Vibrate” all the time! Not to mention the inevitable side-effects on my liver and other necessary organs from all the meds I’m taking. That’s just a bit extreme a price to pay to duck out of overtime…

 My hubby pointed out to me I have to live in my body, not my Supervisor. I shouldn’t worry about his opinion. (Have I mentioned how awesome a guy he is?)

 So…I’m thinking someone, somewhere should establish a National Up-Yours Day for all the people who look at others and determine at a glance that they’re faking being ill either out of laziness or for attention!

 And here’s the link to the Official T-shirt for this official day. Enjoy!

http://www.cafepress.com/+your_imaginary_medical_expert_fitted_tshirt,75690676

I Laugh In The Face of Stress!

 OK, it’s true that a person can’t be “up” all the time (without pharmaceutical assistance, anyway…), but how do you deal with it?

 How do you live and work in a “high stress” world, add constant pain and health issues on top of it, and not get bummed occasionally? Or is the trick all in how you deal with the stress, preventing at least some of the "downs"?

 Yes, I have noticed an increase in the pain and other problems when the stress escalates…but short of quitting my job and climbing into bed permanently, I can’t yet figure out how to avoid the stressful situations…

1)      Everything I’ve read recommends meditation to aid in dealing with stress. I’ve tried for years to properly meditate…and have only ever managed to repeatedly fall asleep!

 But wait! If meditation is all about finding your “center”, your “happy spot”, then could writing qualify? It’s the one thing I do that’s “mine”…that serves no “useful” purpose in my day except to “relax” me. The words popping up on the glowing screen is how I work through my “baggage” and put things in perspective. So…maybe this blog is my form of meditation?

2)      Eliminate the stress from your life. Hhhhmmmm….short of a few happy scenarios that occasionally play out in my imagination, I’m not sure what they generally mean by “eliminate”. I could become a hermit…but the stress of missing my friends and family would be counter-productive.

 Let’s face it, unless you’re living somewhere far away from the hustle-and-bustle of modern life, are independently wealthy, or live-the-dream of working from home, there’s no realistic way of surviving and avoiding stress. Modern life + crowds of people = stress! (And yes, “living off the land in harmony with nature” is its own form of stress…but it seems somehow a “kinder gentler stress”!)

3)      Avoid stressful situations. OK…see #2.

4)      Find a hobby. There are all kinds of studies that shows the therapeutic value of hobbies. Not to mention the joy of making something with your two hands.

 On “good” days (when the hands are cooperating) I knit, crochet, spin, and carve. Although recently, there haven’t been that many “good” days around the tremors…and dropping a stitch is one thing when knitting…putting a high-speed carving tool through a finger is another.

 I usually refer to books and music as obsessions, but I think I could reclassify them as hobbies…reading with headphones on is DEFINITELY relaxing!

5)      Create space for yourself. I’ve read several places where creating even a tiny corner of tranquility for only you is stress-reducing. Again…sounds easier said than done in a big family/small house setting.

 I guess, if I think about it, the tiny notebook I’m currently writing on could qualify. After all, in a three bedroom, one bath home full of people and too many cats, dogs, and birds…well, this is about the ONLY “place” no one else messes with. The kids and hubby all prefer the full-size laptop. So this has become MY space. And when you combine it with the writing, it actually contributes to stress-lessening in two ways…

6)      Touch therapy has been shown in multiple studies to lessen stress, reduce blood pressure, and contribute to fellings of well-being. Both human touch as well as the simple act of petting a dog or cat falls into this category.

 I got this one covered in spades! I guess it is true…the nightly scenario I refer to as my “happy spot” is laying with my head on my hubby’s lap, a couple cats curled up on my belly and legs, reading a good book. If there’s some mellow acoustic music playing in the background…well, that right there is my personal slice of perfection!

Now, if I could just figure out how to take these stress-busters to work with me, I would be the most un-stressed person on Earth!

(Picture: "Stress-busting" with the birds)

Thanksgiving And Blackmail Pictures

 I truly hope you all had a Happy Thanksgiving!

 We survived here. The house was cleaned, the turkey cooked all the way through and reduced to nothing but bones, and the family come and gone. It was a good day!

 The only “shadow” was the sugar cream pie. (Cooking Tip 101: If you have no short term memory, always use a “Baking Buddy” because sugar cream pie will not set if you forget the heavy cream!) The bright side was Celina saved the day with her awesome mint-brownie pie!

 This week continues to be a few steps beyond hectic, though. Wednesday’s Doc appointment was a bust…Receptionist gave me the wrong date, the appointment is for NEXT Wednesday. Off for Thanksgiving, work all week end, pick up all the medical records Tuesday (when they’re also coming to install my new oven!), Wednesday back to Doc…it never STOPS! And this is all assuming I don’t “crash” before the end….

 Every time I think I’ve gotten things in perspective, it all “blows up” and the chaos begins again…or my various body parts go on strike…(Thank goodness there were plenty of chairs and counters to lean on Thursday!)

 But, in the middle of it all, I do remember to catch glimpses of the important things…the things that matter and make it all worth it…family! My crazy, wonderful hubby and kids…my brother…FAMILY! All the laughter that rolled around the room and bounced off the walls this past Thursday…it was beautiful! Even in the midst of the animal and people insanity…

 And speaking of animals, the kittens were in full “cute” mode. They spent the day climbing on people instead of curtains. The best part was, they chose the confirmed “Not-A-Cat-Person” people to climb on! It led to some fun “”blackmail” pictures…

 There was an incident of a kitten taking a brief “swim” in the leftover noodles…which were then fed to the dogs…so all the animals got to share in the meal. *grin*

 And the crazy pace continues…so now it’s off to shower and a run to the store for groceries…and, HOPEFULLY, a nap!

 (The picture of the handsome, napping guy covered in kittens is my AWESOME hubby! The other pic is my non-cat-loving Uncle being EXTREMELY tolerant.)

Quick Note

 I’ve only got a few minutes to write this morning, then it’s off to the Doc…again!

 This time I got a bit smarter. I’ve started a “journal” of sorts. (I even “pimped” it out, including lots of sparkles…LMAO!) In it I included my friggin’ appointments, phone numbers, should probably add a list of meds, and (most importantly) a list of questions for her! I figure this way I won’t get home and do the usual, “Damn! I forgot to ask!”

 I got another call from the Neuro yesterday telling me yet MORE test results…which begs the question why did they call last week and tell me ALL the results were in? Also, when the Records Department called, they informed me they don’t get copies of the MRI’s, I’ll have to call the Imaging Place for that. So…how do you make a definitive diagnosis without seeing the films?

 These are but a few of the MANY questions I’ve already jotted down.

 I will say, the Neuro’s nurse got a good laugh when she asked me if I’d ever had “balance therapy”. My replay was, “I thought that’s what walls and chairs were for.” Cracked her up pretty good!

 I’ve written a dear friend of mine who suffers from chronic depression and asked him to write about how he lives life on his terms despite his illness. I’m hoping he says yes and I can get it posted on here. After all, he fights as hard, if not harder, than anyone I know!

 OK…time for a shower….

Life On my Terms

 If you’ve been here before, I’m betting you noticed I changed the name.

 Yes, Life is a dance…every day, every moment…whether you know the steps or make it up as you go. Whether your life resembles a carefully choreographed ballet or a chaotic mosh pit, we all dance to one tune or another. But…the more I thought about it, the more I realized I am not that “sweet” or “mellow” as the title implied. I am much more the type that dances around off-beat, out of step…to my own tune.

 The last few days I’ve been thinking long and hard about life. How I want to live it…what means the most to me…what I’m willing to accept. And I kept looking down at the tattoo on my wrist the reads “My Life My Way”.  And that pretty much summed it up…

 So, I changed it. And the whole thing may change again at some point! I’m a chick, I can change my mind without warning at any given point! (It’s what we do.)

 Last night, one of the guys I work with was the embodiment of living life on his terms. He’s an amputee (left leg) with multiple other problems, including a heart that’s refusing to play nice. So, what was he doing to break the tension of 12 hour days? Took his leg off and offered it to the maintenance guys to assist in fixing a machine! (“If it won’t “run” then maybe it just needs another leg!”) He was INSANE all night long! (In a totally good way!)

 I can’t take off my leg, (although if I could I’d switch them back and forth to limp on the other side for a while…) but I can CHOOSE to laugh more. I can CHOOSE to make life more fun. I can CHOOSE to live life on my terms…and that includes how I choose to “play” with Docs…

 Today, make a choice…do something fun, no matter what’s “cramping your style”. Make whatever it is part of your style! Limp, push or pull with flair!

 And LAUGH!!!

New Shoes and Glitches

 Great news! The Neuro’s office called Thursday with the test results…no MS! The weird/bad news…nerve damage from a compressed vertebrae. The WTF? News…they’re passing me off to a pain specialist.

 I’ve had a few days to process now, and I think I can put this all together without too much bitterness…LOL!

 I was floored by the fact they don’t even want to see me to discuss how to correct the problem. After all, wouldn’t you assume a Neurologist would be the best person to treat nerve damage? Nerve…Neuro…just a thought. Pain Specialist, on the other hand…help me manage my pain. So…is all this “collateral damage” permanent?  And that’s the simplest of the questions I have. There are about 20 more in order of progressive crankiness.

 But life moves along, it is what it is, and I’m over being “bent” about it for now. I may not be able to dance around the kitchen like I used to, I may require more “human slug” time, but I’m still me and I can do this with style! (If  not grace…)

 So….Thursday we were searching for flat, light weight shoes I was willing to be seen in public in. No slip-ons…tripping hazard. No thick soles or even micro-heels. That pretty much narrowed it down to a pair of guy’s canvas sneakers. So NOT my style…but they met the criteria and the price was right, so we bought them. What’s a chick to do if she wants to limp with flair? I “pimped” them out! Now my daughter wants a pair of her own…

 I found some awesome patches to add in some of my favorite colors. The heel of the right one says “strength” and the left one says “endurance”. Then, of course, the obligatory skulls and flowers (I even polka-dotted the laces)…I had a few left over to “personalize” my Kindle case. Too fun!

 I’m still working on a design to decorate the purple cane…although it has been named. (I’m a weird-o that has a bizarre need to name inanimate objects. What can I say?) Due to my overwhelming love of Tinkerbell (the original Tink with the seriously BAD attitude, not the new, nice Tink!) the cane has been dubbed Tinker-fell, the grounded pixie.

 Now, if I could just figure out a way to get around the “assisted-walking” ban at work, I’d be set!

 OK, that and figure out a “legal” way to combat this whole fatigue thing. Since my Doc said the Neuro had to decide about the Provigil…and the Neuro is apparently done with me, that’s no longer even an option. And I can’t even think about any of the energy shots with my irregular heart-beat…and I can’t imagine how bad the hand tremors would get with that. I’m already at the point where I drink my coffee with two hands…Whole new meaning to two-fisted drinker.

 But, for today, I’m awake, I’m alive, I’m laughing, and I can make butter without a churn…Today I choose to be happy. Today I choose to not focus on how many times I fall over, but on the things I’m doing before and after the falls. Today I refuse to be a collection of glitches…Today I’m a wild and crazy gal who just happens to have one heck of an odd walk…

Whiny Moment

 OK, so the “light” at the end of my tunnel got a bit farther away. Yesterday Doc said she couldn’t help with the Provigil, that it had to be the Neuro…

 Then, she picked the BEST time to try to “comfort” me…I was fighting tears, feeling completely helpless and hopeless at that moment when attempting to face down the fatigue. She looked at me and said she hoped the Neuro would have an “Ah-Ha!” moment, but she had a gut feeling that this was going to be the rest of my life.

 OK. In my head I already knew this. She’s convinced it’s MS, she sent me to the Neuro to confirm…not to debunk. But there’s a HUGE difference, especially when you’re already on the ropes, between “knowing” and hearing it spoken out loud.

 So, I spent the rest of the day planted firmly on the couch, doing (yet again) my best impersonation of a human slug…licking my wounds…wallowing in my own personal pity-party. No! It did not make me feel better! But, damn it, I did it anyway!

 She did change my script for Neurontin from two pills a day to a new time-release one-a-day capsule that’s supposed to have fewer/milder side effects. She’s hoping part of the fatigue is related to the med…As soon as the Pharmacy gets it in, we’ll give it a go and see what happens.

 I put the call in to get my test results, and am waiting to hear back on that one too…I HATE WAITING!!!!

 I’m trying desperately to find my happy thought to hold onto this morning. So far, I’m failing miserably. I’m three inch tall Alice trying to figure out how to reach the bottle to make me grow that’s high above me on the table…

 So, I’m giving myself about 30 minutes more to be sad, crappy, and pathetic, then I have to snap out of it, cheer-up, and do what I can to get on with this business of living. Period. End of discussion!

Medical-Mystery Dinner Club

 Testing is officially over! (For now…)

 Can I just say, sticking a seemingly-dull needle in a thigh and poking the muscle with it is NOT fun! You’d think with all the tattoos and piercings I have it would have been a walk in the park…not so much!

 Now we just wait for the Neuro to analyze all the data…(Did I mention I am NOT a patient woman?)

 On the up-side, my hubby took a vacation day yesterday to play chauffer and moral support, so I got to spend the entire day with him! That was awesome, even though it consisted of him sitting on the couch with me, since I lacked the energy for much else. It was still a “together” day.

 This morning I have an appointment with the Family Doc…I made the appointment intending to talk to her about Provigil…now I’m feeling rather embarrassed about it. I mean, I haven’t had a definitive diagnosis, so why am I going in to ask for an MS-related fatigue med? Maybe I’m anemic…maybe it’s my imagination…maybe, maybe, maybe…

 I wish I could talk to other people who have already been through this. I’m sure it’s completely normal to have these moments of doubt and confusion (especially confusion currently). I’m sure I’m not the first person to ever feel like this…

 All the e-mail groups, message boards, and chat pages I’ve found begin with the “Newly Diagnosed”. Nothing I’ve found seems to provide for or specifically target those of us going through the nerve-wracking insanity and fear of the diagnostic phase. All the books I’ve read gloss over the “what-if” and “possibly” period while the jury is still out.

 Someone should start a Support Group called “What the Heck is Wrong With me?” Imagine the response you’d get…You could have pot-luck dinners where people share their symptoms and finish it up with a lotto of sorts where all in attendance write their best guesses on a piece of paper and toss it in a basket. At the next meeting after the final diagnosis, you could pull a name from the correct guesses and that person wins movie passes or a free car wash! That way it would not only be therapeutic and informative but fun! (Remember that whole twisted sense of humor…)

 After all, there are plenty of groups that get together to “solve” crimes with mystery dinners. Why not medical-mystery dinner groups? The only thing would be no Wed-MD allowed…You have to do your own research, not plug it into a symptom-checker. Maybe I’ll run this one past my Doc today. After all, she has a very similar sense of humor…I think she’d LOVE the idea…

 On this off-color note, I’ll get off the computer and take my shower…ya gotta love early morning appointments…

Friends and Diamonds In The Ruff

 Yep…I failed to dodge the cold…LOL! I guess the family that sneezes and aches together…uses a lot of Kleenex and Dayquil!

 Today is the last scheduled day of “human lab rat”. Hopefully they’ll have a definitive answer SOON! Nerve conductivity and the muscle-zap tests…

 The temperature has dropped a bit, 58 instead of 60. But, aside from all the mud, it’s still looking like it’s going to be a beautiful day. (Probably filled with naps and cold meds…)

 Yesterday afternoon I ended up thinking long and hard about “support people” in my life. Who I could count on for what. I thought long about the different reactions people had to my glitches and malfunctions…and it was a little surprising and a tad disappointing.

 The people in my life seemed to fall primarily into four categories (if you leave my family out of the equation. They’re a class all their own.) The first group were the ones that will ask a question, but the response, if not a positive one, goes in one ear and out the other. No matter what’s going on, it’s never as bad as what’s happening or has happened to themselves…their spouse…their parent…But they’ve got LOTS of advice for the best drugs (because it did wonders for their spouse!), the best Doc (he worked miracles for their parent!) or the best web-site to get the right info from.

 The second group were the ones who know EXACTLY what’s wrong with you! It’s disease A…or maybe Syndrome B. “No, wait…have they performed Test X yet? Well, they should!” No matter which Doc says what, they’re WRONG. They know which meds (preferably herbal) you should take and exactly how the ones you’re on are destroying your body and serving no useful purpose (no matter how much you tell them they ARE helping).

 Group three is one of my personal favorites. These are the ones that begin looking on you with pity…when they’re unable to avoid you altogether! You’re no longer the loud, obnoxious jokester you were five minutes ago, you’re now the invalid who hasn’t realized they should be on bed-rest at death’s door! They begin talking to you in hushed tones (REALLY handy in a factory setting…) and offering advice on how to get yourself on Disability. They’re the ones who ask the questions like, “Should you really be doing that?”, “Shouldn’t you be home resting?” and “If it were me, I’d quit work and enjoy the time I have.” (They obviously have never seen a bill from a Neurologist!)

 This next group…well, I saved the best for last! These are the people I considered “casual acquaintances” before all “this”. They are the people who, under normal circumstances, I never would have discussed my health with but something in their eyes made me open up without thinking it through. And they turned out to be the most human of them all!

 Yes, they know what I’m going through, but they only ask how I’m doing when I miss a few days in a row or am looking especially crappy. There’s no pity or sign of discomfort when they ask, only concern. When we talk, which has tended to be more frequently than before, we rarely talk about “health” issues. They don’t treat me any differently. (One of these new gems stood back a few days ago and watched me clumsily climb up the side of a machine to repair a loader…and never said a word! However, I did see she was quietly holding her hands to catch me in case my feet crapped out.)

 These are the people who don’t get uncomfortable when I make BAD jokes about my glitches…they laugh with me…and occasionally make their own. They also seem to enjoy the occasional game of “what the hell is the word” charades. These have turned out to be the people I realized were the type of people I would like to be friends with outside of the work place…the type of people I would like to be.

 I guess if one good thing has come out of all this “crap” that would have to be it…I’ve realized that there are different “classes” of friends…different comfort levels within those groups of friends. Yes, I can still be friends with the first two groups…I just do the best I can to avoid any and all discussions of health, unless they’re talking about theirs. If I’m having an “off” day and one of them calls, I feel absolutely NO guilt in letting it go to voicemail. Yes, it’s a little sad that some I considered “close” have, for the time being, been somewhat demoted to a more “casual” status. But my hubby has helped me realize that taking care of myself, even emotionally and mentally, is more important that sitting through a half hour phone conversation where I feel like the Docs I trust and my own opinions are devalued and down-played.

 And for those of you wondering why I didn’t discuss my family’s "group" in this…that is an entire morning’s writing all its own! The reality is my hubby is my best friend…he was my closest, most trusted friend before we started dating and that (Thank the Gods!) never changed! He is my rock, my strength, and my voice of common sense (since I have none of my own). My kids have been awesome! The demented sense of humor my family shares is some of the best therapy I could think of. We talk about things I think, I’ve read, or the Docs have said. They know when I’m getting a little “weird” and someone (usually Forrest) will crack a bizarre joke…and the tension breaks and I can laugh and remember how friggin’ lucky I am!

 I could tell you getting “sick” had opened my eyes to how blessed I am to have a family like mine. But the truth is, I’ve always known how blessed I was in that area of my life! (Even when Aidan brings ANOTHER nasty virus home to share...)

*pictures: "Sir Mystery" and "Princess Buttercup" A couple of my diamonds...

Happy! Happy! Joy! Joy!

 Another morning of 60 degree weather!

 I survived last night only to return home and find a friend we hadn’t seen in several weeks had stopped by. (He didn’t even mind the chronically messy house!) On one hand, it would have been awesome to go right to sleep…but it was nice to talk and laugh for a while. Life is good!

 There’s a nasty cold making its rounds here…even a few of the cats are coughing. Keeping my fingers crossed I can dodge this one!

 I’m not sure what to write about this morning…only that I have the urge to write. Perhaps it passes the time. Maybe it distracts me from the ever-present laundry. Then again, maybe it simply puts everything in perspective for me.

 I always start out on one topic, then after repeated deleting end up on something completely different! Why? After starting a line of thought, I end up realizing it’s more or less whining and complaining about a laundry-list of aches and pains…and I don’t EVER want my life to devolve to nothing more than my body. It may be where I “live” but it is NOT all that I am!

 I looked around last night and realized how blessed I am. I felt like I’d run a marathon and followed it up by swimming a mile through wet cement, but I was smiling and laughing with other people who were just as “miserable” to be at work. (My department is currently on 12 hour shifts, 7 days a week…for the third week in a row!) There were varying stages of bitterness and depression as well as their own aches and pains…but most of us were joking and doing what we could to “enjoy” work as much as anyone can.

 And I had the realization that it’s all about perspective. And maybe it’s a bit odd that from my perspective, the people I felt the most sorry for were not the tired and achy people…but the bitter ones. Let’s face it, sleep and hot baths can help tired and achy. Various meds can help with most of the physical crap many of them (including myself) were going through. But, to my knowledge, they have yet to find a cure for bitterness!

  If you can’t look at life and smile or laugh, you’re screwed…and kinda boring to be around…If your existence is devoid of joy, then you’re not living…you’re just existing. And THAT is one deep, dark hole I NEVER want to fall through!

 So, this morning while I sit here and chug down my coffee…surrounded by a herd of house-wrecking kittens (who are trying their best to tap-dance on my keyboard), I know with absolute certainty that I am lucky, blessed, and no matter what, as long as my sense of humor is intact I’ll be just fine!

Flying With a Goose and Goals

 Today is absolutely BEAUTIFUL!

 The sky may be the soft gray of a kitten and filled with rain-promising clouds, but there’s a sweet wind blowing from the west and the temperature is an amazing 60 degrees right now! I wish all the leaves hadn’t already been raked over the hillside. Today would be a perfect time to go out and jump in a leaf-pile!

 It was pretty neat, though. As I came around the corner of the house, following a fat-bottomed goose, the wind picked up and caught us off guard. The goose threw her head back in a beautiful arch and spread her wings wide, catching the wind. She ran across the yard straight into the wind, flapping for all she was worth while jumping in a vain attempt to take flight. It was such a joy-filled sight that I flung my arms wide, threw my head back and limped after her, laughing like a moron! It was so freeing…right up until the wind blew a cloud of dust into my open mouth and eyes…Coughing, eye-rubbing, and a bit of cussing ended my attempt to be a goose.

 Yesterday Nick bought me a cane for home use. It’s a soft, purple color. (I think some hot-pink duct tape racing stripes or flames may be in its future.) We’re hoping saving a bit of the leg at home will help push it a little further at work. I still feel like a Drama Queen using it though…like I’m just not trying hard enough…But, maybe I’m allowed to be a Drama Queen every once in a great while?

 I’ve been doing my research…again…It reminds me of a song I heard a while back, “Is It Peace or Is It Prozac” by Cheryl Wheeler. (It seriously cracks me up!) Although, in my case, the title would be “Is It MS or Is It Coincidence”.  I know, I know! That’s what all the tests are for…I’m just a rather impatient person…And Tuesday seems so far away this morning…

 That, and I feel like if I give IT a name, it’ll be easier to kick it in the teeth…so to speak…

 I looked at several Groups on-line this morning, before the Sun rose and it was time to let the birds out. I almost joined a few, but having not been officially diagnosed, I didn’t feel right about it. Like I don’t really  “belong”. Oddly enough, I couldn’t find a “group” for “It’s possibly MS, but we need to run more tests.”

LIMBO! It’s not just a dance with a stick…Wait! That really does work…I’m using a stick (cane) and I do frequent “back bends” (the back-and-forth wobble when you lose your balance…again!) Cool! Today’s dance is officially The Limbo.

 OK…so I think I set a “Goal-For-The-Day” yesterday…which I failed to accomplish… (getting off the couch and doing something productive). Actually, I had lunch with my Aunt and Uncle, did a load or two of laundry, and did dishes. I guess that qualifies as productive after all! So, my goal today is NOT to focus on the aches, pains, and “oops!” moments. I’ll laugh with my family, go to work and do my best not to walk into anything too painful, and enjoy the fact that Life is a beautiful place to be!

 Perhaps that would be a good idea…setting a daily “goal” for myself. Whether it is as simple as remembering to be thankful for the fact that there are meds that dull the pain enough to function, or remembering to hug my sweet hubby a little extra, or even to laugh at myself instead of getting angry the tenth time I drop something…Something…ANYTHING to break the loop our minds all end up in occasionally…a daily reminder that Life is sweet, regardless of the now-and-then difficulties we experience…

 And to remember how lucky I am! After all, how many people get the chance to “fly” with a goose on a warm, windy November morning?

A Slug's Life

 My goal today is to get my arse up, off the couch and do something…anything productive!

 OK, the “fatigue” has hit with a vengeance! I even feel like I’m trying to type through wet cement! BLAH!!! But…that’s OK. I’m allowed to be a “human slug” once in a great while. (Take one pillow, one blanket, and one all-day nap on the couch as needed. Repeat as often as necessary and call the office if you have any questions.)

 I’ve been doing my research and am gonna try to get in to see my Doc ASAP to discuss Provigil. I don’t know anyone personally that’s taken it, but most of the info I found sounded promising. I know I’ve mentioned I hate taking pills, but I hate being knocked on my butt even more….

 I’m so excited, though…hubby bought me a Kindle Thursday! I can actually read with comfort again! One of the totally awesome things I can do with it is make the print large enough I can read it! (Take that, right eye!) It also weighs almost nothing, so I can hold it up, reducing the headache-pain quotient from looking down for more than a minute or two. (If you add in the hand weakness factor when trying to hold open a large book, I REALLY sound like I’m getting old. LOL!) 

 One more day of testing to go…then it’s all done! (For now, anyway.) Hopefully, I’ll finally get a definitive answer.

 I’ve been reading a book I would HIGHLY recommend to anyone going through the diagnostic thing or newly diagnosed with MS. It’s called “The Multiple Sclerosis Manifesto” by Julie Stachowiak. It’s easy to read and understand, packed full of information and realistic advice, as well as her writing style being extremely engaging.  

 I’ve learned a lot in the last few days that I had never come across with my web-based research in the last six months. For instance, one thing that has my Family Doc flummoxed is the “clean” MRI’s of my brain. I learned that there’s a type of MS that that doesn’t generally cause lesions but atrophy primarily of the spine instead. Until last Tuesday, no one had ever done an MRI of my spine. I’m VERY curious to hear what it showed…

 Switching gears, I think this morning may be a good time for the purple stripes to go…they seem to have faded to an odd shade of pinkish-reddish brown… NOT a good look! I bought the kit three days ago…just been waiting for the energy to use it. That seems to go for more and more things these days…LOL!

 Apparently, this morning, long and drawn out writing is also going to go on the list…my eyes are drooping and my hands are beginning to feel like bricks…I think it may be approaching “nap time” for me…again…

Cow-Catchers and Laughter

 Since last we “spoke” I’ve started two posts only to be interrupted, loose my train of thought, forget what I was doing, wander aimlessly around for a while, and end up here. *grin*

 I’ll eventually remember what I was doing and get back to it. But, for now, I’ll start again…

 Tuesday I spent 2 ½ hours in an MRI sized for an under-fed child! Hopefully I’ll hear the results someday. I also “failed” the swallow study. Well, not exactly failed, the “food” (insert “my weight in Barium” here) just didn’t go down quickly or all the way. My throat muscles are evidently also laying down on the job. The AVI (dizzy-up the girl) had to be postponed ‘til tomorrow since the Doc’s Nurse didn’t send the instructions to stop all meds 48 hours before the test. (Oops!) The next Tuesday finishes up the fun with the nerve and muscle bonanza! Then, HOPEFULLY, a call from the Doc for a follow-up and the results…

 Meanwhile, I almost didn’t make it to work yesterday…woke-up and my right leg refused to “play nice”. Actually, it pretty much refused to “play” at all! I was hobbling and dragging around so bad, I ended up coming up with a few new “lines” explaining why I was limping…”Thought it would help the image.” “Bored with walking normal.” “Why? Don’t you think it’s a good look?”

 In reality, I was fighting the “depression monster” over it. We all do, right? I’d finally broke down and called the Company Nurse to ask how I got approved for the use of a cane, only to be told they were NOT allowed! Basically, no matter how much I may want or need to work…how well I can do my job (if you leave out the whole “walking” side of it)…if I can’t walk unassisted, I can’t work. THAT BLOWS!!!

 So, after grumbling all afternoon about unfair, screw them, and almost calling in, the “stubborn fighter” in my kicked in and I muddled through.

 I ended up having a long discussion with an awesome woman while at work, who gave me some tips about who to talk to and how to “get around” some of their crap. When my hairs rose at the mention of “wheel chair” since I CAN walk…she pointed out that wheel chairs were allowed where canes weren’t…if it ever came down to it. The conversation then devolved to talk of electric scooters, pink racing stripes, and home-installed cow-catchers on the front…not to mention uncontrollable laughter!

 And that had been EXACTLY what I needed…the laughter!

 That is one thing I don’t want to let myself ever start doing…using “journaling” as a printed pity-party! Yes…we all have “bad” days, some worse than others. Yes, we all need to vent from time to time. Yes, we all get “bummed” at one time or another and need to voice it. But I will not start viewing life as “unfair” or “cursed”. I don’t see myself ever considering whatever this is as a “blessing”…it simply is what it is. And it’s something that I’ll deal with the only way I’ve ever known how to deal with plate-fulls of crap. Humor…laughter…my own personal “style” (or lack-there-of)!

 So the jokes fly, the sarcasm flows, and I laugh at completely inappropriate things until I wet myself…and life goes on!

Tantrums and "It"

 This morning I'm a bit “antsy”….OK, more than a bit!

 Yesterday I had a small melt-down…the physical exhaustion and mental fatigue caught up with me. I’ve been reading a book (it’s kind of like a sleeping pill in written form) about problems with the “brain” and had come across some scary statistics. It was published two years ago…and had the statistic that to treat the average person with MS it cost $50,000 a year with a third of that going to meds. $50,000 A YEAR!!!!

 Lately the hubby and I have been talking about me either taking a medical leave of absence or flat-out quitting my job. What I do is EXTREMELY physical and physically draining…(last night saw me climbing up the side of a machine to fix a broken loader…quite a feat when you can’t feel your feet!) and it’s taking one heck of a toll on me. But, with our share of what insurance doesn’t cover already piling up and stats like the one above, I keep telling him I don’t see how I can quit…so I had a mini-meltdown…

 And that’s OK…it’s allowed. No human can possibly laugh ALL the time. (Especially when bladder control issues kick in…and I’m NOT ready to talk about that one yet!)

 I think worrying a bit about “Test Day #1” tomorrow also helped add to the tantrum. Tomorrow morning at 8:00AM begins a full day of Chris-the-lab-rat! No coffee to jump-start my day, no nicotine (yes, I smoke…sorry…) so they can start with “Dizzy-up The Girl” (the test for vertigo), then the “Swallow Study” followed by a brief break and a 30 minute drive. The day then ends with two MRI’s. Next Tuesday they’ll do the nerve conductivity test and the one where they insert little pins in my skin to test my muscles…

 I have NEVER been a patient woman, so I guess it makes perfect sense that I’m a lousy patient…but two weeks of tests, then scheduling a follow-up with the Neurologist and hoping she’s analyzed everything by the time I get there and has a definitive answer so we can begin working on treating this “thing” that feels like it has invaded my body…It’s making me more crazy than normal! (And that says a lot!)

 Speaking of invaders, it cracks my hubby up! I have developed the unsettling habit of talking to (insert either “yelling at” or “arguing with”) my brain. I blame it all on “It”! It has declared War on me. And let me assure you, It has one heck of a wicked sense of humor and borderline evil battle tactics. Terrorists everywhere could take lessons from It on how to bring someone to their knees. (Occasionally literally!)
On any given morning, you can expect to hear, “Do Not start with me! You will NOT win!” or “So, you wanna play like that? Go ahead…give it your best shot!” and even, “Oh, that is SO not fair! Play nice!” usually peppered with various and sundry four letter words and explicatives. I have even been known to address a specific body part “personally”. “Really? You can’t even keep hold of a flippin’ toothbrush? You’re fired!” Of course, all of this merely serves to make me appear crazier than I already do…

 But at least I feel like I’m not taking it all quietly or without a fight. And that’s the worst part of all this, isn’t it? Feeling powerless. You feel like you’re at the mercy of your malfunctioning body. At the mercy of the Docs ordering all the tests and putting you under a microscope while looking for an answer. At the mercy of time while you wait not-so-patiently for them to find said answer. At the mercy of meds while you look on anxiously to see if it’s going to help and what funky side effects might kick-in. At the mercy of a World that looks at you and sees an apparently normal, healthy person while you feel like you’re falling apart from the inside out.

 Perhaps, in some deep down psychological hidey-hole, that’s the real reason I put on make-up, ingest my weight in caffeine to stay quasi-mobile, and force myself to drag my way into work…because it’s what I’ve always done. And I refuse to surrender my “normal” life quietly. I refuse to give It the satisfaction of beating me or even knowing how much It slows me down. And that’s why I keep trying to find new ways to laugh at It…because as long as I’m laughing, It has no real power over how I choose to live my life…(except, of course, the occasional “walking into the wall” incident…)

The High Price of Camouflage

 I’ve seen it called “compensating”…those wonderful little “tricks” and “tools” we all use in our daily attempts to either hide, cover-up, or lessen the effects of our body’s “rebellion”. Personally, I’ve begun referring to it as “camouflage”. (After all, all of it is done in an attempt to hide and distract attention.) Whatever you call it…however you go about it…it’s a tiring pain-in-the-behind!

 One of my personal “glitches” is my feet have currently gone on strike…they won’t “pick-up” when I walk. I drop my left toe and my right heel to varying degrees…on “bad” days, the whole darned foot drops…if that’s even possible! And to add an extra element of difficulty to the whole walking thing, my right thigh muscle is on extended vacation. What this all adds up to is that on “good days” I walk like a penguin with hemorrhoids. On a “bad day” I amble along in what I’ve come to call the zombie shuffle. (And my hubby thinks I’m joking about wanting an OSHA approved cane for work!)

 Honestly, there really isn’t any way to “hide” this kind of weird gait…and telling people your doing it to add attitude and individuality to your strut only goes so far. I’ve taken to wearing sweatshirts and hoodies that literally hang to my knees…It probably adds to the whole penguin look, but I look so bizarre that most are afraid to approach me, let alone ask why I’m limping!

 Besides, the sleeves of the gigantic sweatshirts can be slid down over the hands to warm them (I also have Reynaud’s Syndrome), hide the shaking when it gets too bad, or take them “out of play” when they go completely numb. It’s REALLY cool when you’ve slid the sleeves down and then begin absent mindedly shaking your hand or arm in a vain attempt to regain some feeling…DEMENTED BIRD!!!! (That says it all!)

 I’m kind of a “quirky” gal…I have made a hobby of screwing up my hair. (It keeps growing back and hair die can fix almost anything…almost…) I discovered (by accident) that adding purple stripes to your hair is a good way to deflect attention from your “glitches”. People are so busy looking at your head, wondering, “WTF?” that they fail to notice your limp or the number of things you’ve dropped in the last ten minutes. It also helps on those days that words insist on coming out in some form of jumbled-up word search…or not at all. People assume you’re crazy anyway (after all, you’ve got PURPLE hair!) so they make allowances for your idiosyncrasies.

 Shouting, “I meant to do that!” is a great cover for dropping things, as well as “walking” into various objects. It really only gets embarrassing when you’re walking fast enough that you literally bounce off the object and stagger. That, or you hit it hard enough that the pain causes a steady stream of high volumed obscenities to leak out…that one’s kinda impossible to “cover up”.

 Second opinions are always good camo in a pinch. On days when your eyes won’t cooperate, handing an object off to another and asking, “What do you think?” is always helpful and far less embarrassing than, “I can’t read this.” I’ve also been known to tell people I prefer to view the world as a Picasso painting when my right eye won’t focus. (Which really does make the world look like a Picasso!) As I noted above…they look at the purple hair and accept my comment without question.

 As for the vibrating hands, I’ve been using the standard, “Too much caffeine!” comment. A little boring, but it works…Hiding the numbness is a little harder…At my job I use a lot of various and evil measuring equipment. It’s difficult at best when you can’t feel your hands to use an overly sensitive gauge when you can’t “gauge” the amount of pressure your exerting. This, coupled with the icy fingers of Reynaud’s, also make touch-screens a delight! Half the people I work with are convinced I’m “magical” since the screens refuse to respond to my personal touch…

 Then you get to your actual appearance. When you’re three steps past exhausted, the last thing in the world you want to do is dry your hair and put on make-up! (Sorry guys…since this is “camo” most of you refuse to use! *grin*) It’s become a daily routine to shuffle to the bathroom, grumbling about make-up…hair…waste of time…but every time I look in the mirror, I realize I look pretty much as bad as I feel! And, being a bit of a “prideful” individual, I can’t bring myself to go out in public like that. (Besides, my face coupled with my walk, people would be convinced the “Zombie Invasion” had hit!) My complexion brings to mind Procal Harem’s song, “Whiter Shade of Pale” and the grayish-purplish circles under my eyes have gone from mere bags to entire sets of luggage! So, out comes the make-up tray and the painting begins…

 Perhaps it would, in the end, be easier to tell people I’m “not well” but, for some reason, most people are under the misconception that MS is fatal. (“Oh! I’m SO sorry! Do they know how long?”) A body grows EXTREMELY tired of explaining…Besides, I’m under the assumption that no disease defines me! Nor does my body define me. Like most of us, I want to be known for who I am…not my glitches.

 And yes! All the subterfuge and constantly working on the camouflage can be exhausting in and of itself without even factoring in the “normal” daily exhaustion. But, until I can either reconcile myself with being the thing that triggers the “Zombie Panic” or possibly become comfortable with wearing a sign that says, “I have a neuro-muscular disorder!” I guess I’ve doomed myself to finding new and ever more interesting ways of compensating for my body’s lapses in cooperation.

Uncooperative Prisoner

I wrote this several months back. Kinda proof that there's a frustrated writer in all of us...

Uncooperative Prisioner


I am a prisoner.

I am held captive not by walls and bars,

But by flesh and bone.

My home…the vessel that contains Me…

Has turned traitor!

That which once was the vehicle of joyous expression,

Has become a symbol of all we have to loose.

*

We all age…

Little aches and pains,

We slow little by little

Yet our souls continue to soar!

But not this!

Not yet!

*

I am trapped in a form

That refuses to comply…

Respond…

Conform…

My soul looks on out of it’s window,

Refusing to give in or give over!

*

I was born a fighter.

I refuse to surrender,

No matter how sweet it would be.

But there is no enemy…

Other than myself.

And how do you fight your own breath?

*

No one sees, no one hears,

No one suspects the constant battle raging…

The war torn casualties left strewn

On the interior fields of existence!

But silently they cry for reprieve.

In painful pantomime, they beg for quarter!

But none is given.

*

My soul repeats it’s war-cry,

It’s sustaining Mantra…

“Disease does not define me!”

Define…no!

But there are days it feels like enslavement.

Entrapment…

*

One more day to catch my breath…

One more day to marshal the troops

And defend!

One more day to rise up

Like a broken Phoenix.

One more day to refuse to surrender…

*

For now, I am a prisoner.

Today, I am held invisibly captive.

At this exact moment,

I dance like a demented marionette

To the sick puppet masters’ desires.

But…I was born a fighter!

*

I was born a FIGHTER

Day 2

I’ve always been a bit of an “Alice in Wonderland” fan, something I’ve managed to pass on to my daughter. It’s been YEARS since I’ve actually read the book. (And by “YEARS” I mean close to 30!) When I was younger it appealed to my sense of whimsy and adventure. Now…especially now!…it appeals to my sense of humor and analogy.

You’ll probably notice quite a few references to the tale in my writing. The references will probably be directed more towards the movies since those images have overtaken those from the book over the years. (I really should re-read it…I’ll add it to the growing list of things I need to do…along with dusting and not falling over in public.)

Besides, it fits so well with my current life! It’s like I woke-up one morning, staggered out of bed, and fell through the mirror on the back of the bedroom door into a topsy-turvy world where down is up and up is sideways! Where (on some days) my brain tells my hands to do one thing and they do something completely different and inventive.

On the up side, it tends to keep life interesting! You never quite know what to expect…or when!

Don’t get me wrong…I have my days when I regress to a toddler when the batteries have died in my favorite toy…the last two days have been more along those lines. Anger at my rebelling body…frustration over a sudden inability to find a word…or half a sentence…Complete embarrassment when I’m attempting to show an Operator something at work and he leans over and quietly whispers, “Do you need some help? You’re doing the wrong test.”

But I’m trying…trying desperately to keep a hold on my sense of humor, as dark as it may be at times…It’s NOT a funny situation, but if I can’t occasionally laugh at myself, I’ll end up loosing my sanity. If I can’t laugh, then all the beautiful colors drain out of my personal Wonderland and all I have left are black-and -white, two-dimensional story boards…and there’s no fun, wonder, or whimsy in that!

I could insert all kinds of interesting facts and statistics on the physical and mental benefits of laughter…but since this is for personal use and not a grade, I’ll let you look it up if you’re really in need of numbers and percentages. I’ll just tell you I remember reading about how good for you it is to laugh and how it elevates all your “happy” hormones and thingies.

I probably should also point out how “odd” my household’s general sense of humor is. (My second oldest still refers to my generic Neurontin and my Ativert as “Mother’s little helper” due to their yellow color. Thank you Rolling Stones!) It helps fight the frustration and depression involved with the whole diagnostic phase when you’re faced with four faces turning purple with the effort of not laughing after mom tried to reach for the conditioner in the shower…and managed to inexplicably collide with the window ledge instead. (Wouldn't have been so funny if the eye had actually blacked up, would it guys?) Or the various bets placed on whether mom was drinking or not when she was standing at the kitchen counter and simply toppled over…In the safety of my own home, it’s much easier to laugh at myself. And I definitely NEED that!

Please don’t ever misunderstand the humor here…MS is NOT funny! Nor are any of the other “usual suspects” they’re currently searching for…brain tumor, growth on my spinal chord, or some other Latin name from the long list of debilitating neuro-muscular diseases and syndromes. But life is funny, as well as “funny”…and that’s what I have to laugh at.

IF anyone out there finds this and decides, for whatever reason, to read it…I would LOVE your stories to add to it. You can e-mail them to me (Deanspub4@aol.com) and I’ll post them on here. And they don’t have to be funny…we all have our own ways of dealing with this life-altering chaos. There’s also a frustrated writer lurking deep inside of most people, and getting your thoughts down on “paper” is a great way to make room for new ones to form in your head…

The Dance Begins...

In our world there are so many analogies and euphemisms for life…it’s a bowl of cherries, it’s an adventure, it’s a gift, it’s a bitch, and so on. But my all time favorite has got to be it’s a dance you learn as you go.

When I was younger, I wanted with every atom of my being to be a dancer. I danced in the yard, on the playground, in my bedroom, at the grocery store…EVERYWHERE!

As I grew older, I became aware that genetics had not been kind to me…I did not nor would I ever have the body for classical dance. But I still had the soul! So I continued to dance at every party, community and school dance, in my bedroom, the kitchen….everywhere! As my life continued to move along, I danced with my kids to Sesame Street and Barney, I dance with (or actually more around than with) my spouse, and we had “Ladies Night Out” when my friends and I went out dancing (the middle-aged house-wife invasion at the local barely-legal dance club).

Then one day, something changed. Suddenly once semi-graceful or quasi-sexy dance moves became bizarre, jerky and at times tumble-inducing comedy routines. My hips wouldn’t wiggle…my ankles preferred to “rock-n-roll” instead of support any rapid movement. I was reduced to mild head-bobbing (since anything past “mild” caused the room to move at twice the speed of my perception). Toe-tapping was even out of the question, since I seemed to have lost the coordination required to tap in time to the music (or without falling over, for that matter).

This is the story of that journey. The story of a lot of other journeys that have and will run a similar course. This is the neuro-muscular fairy tale (and occasionally horror story) of what happens when your body decides it’s time to “sit this one out” but your mind and spirit disagree!

My Nurse Practitioner has currently given me a preliminary diagnosis of MS. I am still going through the diagnostic stage with my Neurologist, so I can neither confirm nor deny her suspicions. I can only live with everything it entails…

Introductions are in order, I suppose…My name is Chris. I am a 41 year old wife, mother of four (ages 16 to 21), distracted house-keeper and Team Leader at a local factory that produces car parts, life-long music junkie, and frustrated non-dancer. My kids would tell you I’m insane, in a good way. My hubby would tell you I’m “quirky”. I LOVE animals, as evidenced by the fact I’ve managed to turn our house and yard into a zoo. And, last but not least, I love to write. (In my strange opinion, words can dance almost as much as a body can…)

I’m also feeling fairly isolated and cut-off at this particular point in time, which is where this comes in. I know there are others out there who have gone through this, will go through something similar, or know someone who has/will/is going through it. And it is human nature to want to share…we need to feel, on some level, that we’re not alone. That SOMEONE SOMEWHERE understands, can identify with our plight.

I’ve also caught myself slipping in and out of varying states of self-pity and self-doubt. And I refuse to let that happen! Not without a fight!

So, I looked on-line at the e-mail groups…you know, other like-minded people who would “get” me. But my requests were either ignored, perhaps not received, or didn’t really fit…The ones that responded tended to be the groups that weren‘t really what I needed.. Besides, I’ve never really been much of a joiner…The idea of a daily update of a hundred-or-so people complaining did NOT fill me with hope.

I need humor. I need joy. I need hope. I need the complete freedom to laugh at the fact that I fell off the john…from an already seated position…and I wasn’t drinking! I need to be able to poke fun at the fact that I look like a pinball going down the hallway without feeling guilty over how it made another on the list feel. And I need to share with the hope that even one other confused, at-times scared person might stumble across it and it do them some good…even if that good is only in the assurance they’re not alone.

So…here goes nothing! Welcome to the Dance…An eclectic and occasionally fragmented (the cognitive abilities are also suffering a tad bit) journey through my own Neuro-Muscular Wonder Land!