tag:blogger.com,1999:blog-71369258479886111272024-03-13T08:14:02.616-07:00No Empire, No More@whiskey.xray.yoga.zulu http://www.blogger.com/profile/13486715100955603014noreply@blogger.comBlogger23125tag:blogger.com,1999:blog-7136925847988611127.post-14294646037069840212012-01-22T07:44:00.000-08:002016-12-20T04:57:52.058-08:00Almost forgot I have a chronic incurable disease.January 2012<br />
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Some may have noticed that I've not posted in a very long time and I feel a bit guilty about that since I promised (myself anyway) that I'd document my experience in the Fingolimod trial. All I can say to defend my gross negligence of that task is that I've been too busy living normally to post much about MS. So normal has my physical being become that I often forget I've got a debilitating disease! In other words, the mystery drug has been a resounding success for me, and many others apparently, since it is no longer a mystery and is available to the masses. Here is a brief list of all that has gone right since I started taking Fingolimod (aka Gilenya):<br />
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Major reduction in muscle spasms<br />
Regained ability to walk/jog/work out without going numb; subsequent 30lb. weight loss<br />
NO MS-related fatigue, ever!<br />
Only headaches I've had were booze related<br />
Have regained sensation in both feet/lower legs<br />
Vast improvements in balance and coordination<br />
Can go up AND DOWN stairs with speed and ease<br />
No "cold water droplet" sensations<br />
No problems with heat or elevated body temp, doesn't make me numb or fatigued anymore <br />
Have not had a relapse/flare up/exacerbation for almost THREE YEARS (last one March 2009)<br />
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I am out of the trial now and have been prescribed Gilenya by my regular neuro. He seems pleased with my progress and talked with me about keeping an eye on side effects (haven't noticed any) and potential complications from taking the drug. He thinks there may be an increased risk for developing lymphoma because of the way Gilenya works. I am NOT stoked to hear that but figure that the benefits outweigh the risks. I have not been this happy and healthy, well ever. My husband and I are taking advantage of this time that my body is working to travel and adventure and DO and GO. Nothing like a few years of "sickness" and relative "disability" to make you remember that you gotta run out and do your living NOW when suddenly you are able to again.<br />
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All in all, things are good. I love that my body works and have little celebrations in my head when I'm riding my bike, dancing with friends, climbing the stairs to the top of the Arch du Triomph in Paris... My kids are healthy and happy and smart. My friends are fun, reliable, and stimulating. I love what I do for a living (even if I hate the short-sighted fucks that I work for). Being able to make plans with near complete confidence that I will be able to do whatever I make plans to do is a really good feeling.<br />
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In the spirit of full disclosure I feel I should give the list of MS symptoms that I do still occasionally experience:<br />
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Fleeting restlessnes in both legs<br />
Rare small spasms in left hand/wrist <br />
Occasionally still "trip over nothing" but I have always been clumsy. ;)<br />
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I don't have any of these often enough to think about my disease everyday. I take my Gilenya pill every night without even thinking about why because it doesn't require the kind of will power that a daily injection does. It's just something I do after washing my face before bed and I feel so good that it doesn't even occur to me that I take the pill because I have MS. My biggest fear is how I will react when I do finally relapse again. Before Gilenya I was relapsing every 3 to 6 months and EVERY time it hit me hard. I would "forget" in remission how much everything was a struggle and how frustrated and depressed I had been during the relapses even though they were only a few months apart. Now it has been three whole years! How deep will I plummet by the time the monster catches me again? I can never decide if I should try to remind myself that DOOM is coming or if I should just focus on living for today.@whiskey.xray.yoga.zulu http://www.blogger.com/profile/13486715100955603014noreply@blogger.com1tag:blogger.com,1999:blog-7136925847988611127.post-46507552573586967172009-10-31T12:48:00.000-07:002016-12-20T05:05:11.933-08:00Squashed tomatoes + sugar =Ketchup (or Catsup if yer traditional).<br />
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Oh I know, it's been a long time since my last post and I'll make no excuses... well maybe just a few. I've been a very busy (and completely functional!) lass lately so there's been little time for blogging though I have logged in to read others folks' news.<br />
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First and foremost, I've been feeling really good! I've been in the Fingolimod study since March and aside from the relapse I had when I first started on THE DRUG, I have felt better than I had in a long ass time. Even my perpetual symptoms (muscle spasms, creepy-crawlies) have been nearly non-existent! The first few months of the study I had to drive an hour away for lots of tests and check-ups, but now I've only got to go every 3 months or so. Doing the same tests over and over has gotten a tad irksome, but it's worth it since I feel so good. I look good too. My most recent MRI shows lots of plaqued up OLD lesions, but nothing new or active. I went through the films with one of the radiologists I work with and he says things look good, and was genuinely pleased (and maybe a little surprised?) by how well I've been doing. I still have problems (like numbness and loss of function in my legs) when I get too hot, and my balance is still for shit but I can live with those things. More on my aptness to fall down later...<br />
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Excuse #2: I got a promotion! I got A LOT more responsibility at work, a WAY better schedule (finally!), a tiny bit more money, and an ass-load of work stress. I applied for the position mostly for the bankers' hours, and had some pretty stiff competition, but they picked me. I'm out of the MS closet at work and they still picked me! Ha! So far the job's been going pretty well even though I think it's steadily raising my blood pressure. I have also discovered that working normal Monday - Friday-9-5 type hours means that it's impossible to go to the bank or the doctor without missing work. It's pretty rad to see my family regularly, and to be able to sleep at night though. Fair enough trade-off, I guess. And it was a little rough at first because some of my coworkers were pissed that I got the job and decided to make a big stink about it. Honestly, that's just inspired me to kick more ass at work and made it more meaningful that the people who supported me (including the docs, who totally backed me up) had faith in my abilities.<br />
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Summer vacation with my husband in New Orleans was completely awesome. We had a blast in the French Quarter and happened to be there for the coolest week N.O. had this summer. We walked EVERYWHERE and I only ate shit once. It was really funny actually: The first few days we were truckin' around and Shiva kept a close eye on me. He was super-attentive to stuff like pipes sticking up out the sidewalk, slippery spots, and the jacked up streets of N.O. as potential hazards to my verticality. On day 3 or 4 he let his guard down, and I went down. We're strolling down Rue Burgundy across from Louis Armstrong Park and he points up at something on one of the balconies hanging overhead saying, "Look at that!" And I look up, just as I step into a hole I could neither see nor feel, and the next thing I know the street and I are dancing cheek-to-cheek. Totally twisted my ankle into a gnarly knot and scraped most of the skin off my other knee. It was a truly epic wipe-out and I unintentionally blamed it on Shiva. "I can't believe you didn't CATCH ME!", is what I said. Not only did he dupe me into looking up while walking, something we both are aware I'm incapable of on my best day, but he also got a few paces ahead of me. I'm accustomed to him walking a half step behind me on my right (my weaker side usually) even though I'm not sure he does this consciously. He's usually hypersensitive to my potentially falling over and I guess he just thought I was "okay." Well, he's cured of that delusion. He's gone back to being <span style="font-style: italic;">en guarde</span> 24-7. We did have a good time coming up with crazy stories to tell people who would inevitably ask, "What happened?" He suggested one about my chasing down a homeless guy in a wheelchair that had stolen his camera. And another about a heated disagreement between me and the owner of a Korean grocery. I'm not that creative so I just stuck with the embarrassing truth. I was able to walk the rest of the trip and have yet another "vacation scar" to add to my collection.@whiskey.xray.yoga.zulu http://www.blogger.com/profile/13486715100955603014noreply@blogger.com4tag:blogger.com,1999:blog-7136925847988611127.post-19679068237686858872009-05-25T20:57:00.000-07:002009-05-25T21:41:04.918-07:00I like walking. It kicks ass.Let me take this opportunity to skip the whining for once and say something positive: I can walk (again) and I like it. Thus far, MS has only "borrowed" things from me and I'd like to say thanks to the hobgoblin for returning the items it took, still relatively undamaged. I know I tend toward ranting and cursing so I'm warning you that this blog will not be that. Don't go looking for rainbows and unicorns here or anything, but today I've got good things to say.<br /><br />I've managed to come through another exacerbation without any noticeable permanent deficiencies. I've got the feeling back in my feet (except around the toes) and they aren't burning anymore. My legs are back to working reliably and the crushing fatigue has finally lifted. Now that I'm not so surly and defeated I can admit again that I have it much better than others and now find myself a bit ashamed of all my carrying on. <br /><br />I have found myself in a better mood lately, but I'm a little suspicious of it's origins and timing. Is it the nortriptyline that I've been taking? Am I getting used to this bizarre schedule at work?<br />Even my husband has noticed my "better mood" lately. Wink wink, nudge nudge. I'm a bit wary because I don't think too much has changed. I'm still stressed about all the usual things. And I'm still not sleeping so good, but I haven't been sick, which is weird. The typical stomach bugs and colds and the like have plagued my friends, family, and coworkers, but I haven't gotten my share. Very strange. Makes me think that I must be on the placebo for the Fingolimod trial because I get the impression that the folks on THE DRUG catch every little thing.<br /><br />I have an uncanny feeling of gratitude lately. I'm grateful for my job even though it sometimes sucks. I'm pleased as punch with my mother for taking care of the kids this summer, saving me tons of money and worry. I find myself smiling during the half mile trek from one end of the hospital to the other because I'm not dragging one of my legs or concentrating on landing. every. single. step. And I'm really quite pleased with how easily I can avoid the hazards of manuevering around the oxygen tubing and urinary catheters and velcro straps and IV tubing strewn around every single patient. <br /><br />I can walk, and that's rad. I walked across the causeway in the middle of the night with my husband just for fun. I walk around the grocery store without having to lean on the cart the way I remember my grandmother doing it. I'm not staring enviously at House's cane anymore. (I actually started to imagine how much easier walking would be with a cane during this last relapse.) I'm going to New Orleans in July (yes, JULY. Yes, I know it'll be hot.) with my husband and I'm gonna walk all over the French Quarter so I can show him all my favorite places. I can again wear whatever shoes I want without worrying which ones will trip me up or be too "quiet" to help me figure out when my foot has hit the floor. <br /><br />Being able to walk is the shit.@whiskey.xray.yoga.zulu http://www.blogger.com/profile/13486715100955603014noreply@blogger.com9tag:blogger.com,1999:blog-7136925847988611127.post-69655457858152379992009-04-15T22:09:00.000-07:002009-04-15T23:49:57.208-07:00They say timing is everything, don't they? A month ago I started the Fingolimod trial, and a few days later I got a nasty cold (an expected side effect of the Fingo). A few weeks ago I developed a new symptom and saw the neuro, but was assured the new symptom was not a big deal. Three days after seeing the neuro my legs went wonky, and I couldn't get Novartis Chick to call me back. A week after that I could barely walk, and still couldn't get anyone to call me back. The last time I had a relapse/attack/exacerbation (whatever you prefer to call it) I was chastised for not seeing the MD sooner. My neuro told me I had kinda missed the bus on taking the steroids at a time that might've affected the severity of the relapse. THIS TIME I went to the neuro and called the Novartis study people right away and nobody paid it any freaking attention! I am so frustrated with this impossible game of timing. When is it not-too-soon-but -not-too-late to call about feeling like a steaming pile of shit? Why do I always NEED to call when the doctor is overbooked, out of town, or just not feeling very interested in me that day? I'm not a huge fan of the steroids, but I do wonder if they would've let me avoid limping around the hospital for the last 2 weeks and making me feel like a zombie for a month. Now I wonder if they'll do me any good now that I'm STARTING to feel a little better. The Trial MD says yes, my neuro says no. What the hell?<br /><br />Because of this recent relapse, many well-wishing colleagues and family members have more probing questions about the drug trial and what made me decide to get in it. When I explain to these kind and worried souls that the trial is blind, and that I may be on a placebo for 2 years they just totally lose their shit. "Oh my gawd! What if you're going UNTREATED for 2 WHOLE years?!," they exclaim. And then I give them my reasons , none of which are as brave as Bald Ben over at <a href="http://goodbadandms.blogspot.com/">Did You Know Montel Williams Has That?</a> implied in his recent blog when he mentioned me so kindly. He is now thinking of joining a trail too so I thought I should post my real reasons:<br /><br />1. I'm afraid of <a href="http://en.wikipedia.org/wiki/Progressive_multifocal_leukoencephalopathy">PML</a>. I know it's unlikely, but people underestimate the persistance of my bad luck. If there's a chance of something going wrong, it will go wrong for me. Murphy's Law has apparently been ammended to my own personal Constitution. And I'm intimidated by the plan being to "monitor Tysabri users very carefully against the threat of PML infection."<br />Really? How are they going to do that? Because I've already covered the fact that I apparently don't know when to cry "HELP!" How crazy will I make myself on Tysabri if I have to be on the lookout for everything and nothing? Because I relapsed while on Avonex (which my neuro considers functionally similar to Rebif and Betaseron), and couldn't tolerate Copaxone, Tysabri is the last of the FDA approved DMDs for me to try. And I know lots of folks love it and have improved greatly, but the one and only real-life person (not to imply that you bloggers aren't REAL, 'cause I think of yous guys as friends) I know with MS has done horribly on Tysabri and had a really hard time even tolerating the infusions. Plus, it's so fucking expensive I'm worried about reaching my lifetime limit of benefits before I turn 40. I'm just not ready to get on the Tysabri train.<br /><br />2. I won't be a viable trial candidate forever. Right now I'm young and relatively healthy. I know having MS doesn't put me in the ideal health category, but I don't have cancer, heart disease, vascular disease, liver disease, reduced kidney function, GI problems, GU problems, or even high cholesterol. There's no chance of my becoming pregnant or wanting to breastfeed ever again. I can still walk (most of the time) and drive myself to the myriad appointments I have to keep for the trial. These things won't be true forever so I know that if I'm gonna try a trial drug, now's the time.<br /><br />3. Fingolimod is a PILL. That is hugely significant to me. I don't personally have an issue with needles, but I'm sure there are plenty of MSers that do, and I love the idea of helping give those folks some hope for an oral DMD in the future. I do really hate the idea of having to make an appointment for an infusion every month indefinately as well, which is another strike against Tysabri. (Despite the fact that I am perfectly capable of starting my own IV and running just about any liquid I please into my arm, there's no way in hell those TOUCH people are gonna let me give myself Tysabri infusions. I wanna hold onto my habit of autonomous healthcare as much as I can.) I'm stubborn and I'd rather just stick myself unless there's tattoo ink involved.<br /><br />4. It's only 2 years. I had more confidence in this reason before I had my 2 most recent exacerbations. I find it very disconcerting that I had one start in October '08 and the next start in March '09. That seems like too many, too close together, too soon after fiddling around with my treatment options. On the other hand, it took 2 years just to get diagnosed with this damn disease. And in the big picture sense of your life span, 2 years ain't shit really. Jeez, those kids on LOST were off the Island for THREE years and they didn't even bring back longer hair with them. Although John Locke did go from alive to dead to alive again. That's a pretty significant amount of change and he wasn't off the Island as long as the others... whoa, I'm way off track.<br /><br />5. The chances of Fingolimod making me feel like shit were very, very small. And it doesn't, if I'm on THE DRUG. I researched the potential side effects of Fingolimod and didn't find anything too alarming. Macular edema and increased opportunisitc infections seemed a manageable trade off for free drugs and testing. Both of which are being closely monitored during the study which means I get to keeping ogling the cute opthamologist they send me to regularly. And it gives me a viable excuse to avoid patients with Shingles at work. (Just Shingles though, the rest of the cooties I'm still swimming in with the rest of the fishies.) Also, the trial does not require that I make any lifestyle changes. If I hadn't quit already I could've kept smoking, not that I want to. I can keep getting tattoos and keep doing my low-cal diet (I've lost 11 lbs!). I can travel, skydive, or just take my kids to the beach. Though I'll keep staying under the umbrella and spraying on the sunscreen because there seems to be increased incidence of skin cancers in Fingo-takers. Altogther, they aren't really asking too much of me.<br /><br />So there it is. Not particularly brave or self-empowered motivations to do the trial drug. My hubs did encourage me by saying that it could eventually help a lot of other MSers, and I do sorta feel like I'm honoring the memory of my granddad (see previous post <a href="http://noempirenomore.blogspot.com/2008/12/my-day-is-totally-kicking-ass-bring-on.html">here</a>). I'm not sure hashing out all my sideways logic really justified a long-ass post like this, but too late to turn back now.@whiskey.xray.yoga.zulu http://www.blogger.com/profile/13486715100955603014noreply@blogger.com5tag:blogger.com,1999:blog-7136925847988611127.post-38032747191516037272009-03-31T20:08:00.000-07:002009-03-31T20:43:00.995-07:00Burning and Freezing ReduxThis time I cannot blame the Copaxone. I guess we're calling it <span style="font-style: italic;">parasthesia<span style="font-style: italic;"> </span></span>but I think <span style="font-style: italic;">torture</span> is simpler and maybe closer to the truth. (Have you noticed my love of vocabulary? Sorry if it's annoying.) My feet have been alternatingly burning and freezing while simultaneously numb and tingly. Is it even possible for Normal People (non-MSers) to have this many differerent sensations happening in a body part at one time? This has been going on for more than a week and I have tried it ALL. I've tried warming up and cooling down. I've tried all the meds at my disposal. It seems to be worst in the morning, late at night, and whenever I'm moving around a lot. And it's spreading; north up to my knees at times.<br /><br />It started right before I came down with Shiva's cold, and I told the Novartis Chick about it like, three days in. The Novartis Doc blamed it on my cold, ("Maybe you're running a fever," he says 5 minutes after the nurse had determined my temp was normal), but I was pretty sure he was wrong. So I went to my usual neuro. Usually I think of my guy as damn near sainthood, but this time he sorta looked at me in a way that made me feel completely pathetic and said, "You have MS, what the hell did you expect?" I'm euphemising of course, but that was the gist. He did NOT say that I was relapsing -I like to call it "backsliding"; I stole that from the Christians - or even having an exacerbation. He prescribed me <a href="http://en.wikipedia.org/wiki/Nortriptyline">Nortriptyline</a> which hasn't made a lick of difference yet. In fact, it's gotten worse and I am standing on the precipice of contemplating amputation. I'm in the burning stage now and have just agreed to putting them in ice water at Shiva's suggestion. Okay, I put one foot in and he made the steam hissing sound effect, and now it just feels numb. Now it's that stupid feeling you get from IcyHot ointment. Alright, fuck this, let's just lop them off.<br /><br />I called the Novartis Chick again today and she asked if I'd been having any other symptoms, like fatigue. I told her the other day that I have been pretty fatigued, but also having a hard time sleeping at night. She knows how wacked my work schedule is too, but this time I left out all the excuses I tell myself (other than MS) and everyone else for being tired all the damn time, and just admitted that the fatigue right now is baaaaad. She said she'd talk the Novartis Doc and call me back. Must've lost my number.@whiskey.xray.yoga.zulu http://www.blogger.com/profile/13486715100955603014noreply@blogger.com5tag:blogger.com,1999:blog-7136925847988611127.post-47800769365813752942009-03-10T10:31:00.000-07:002009-03-10T11:19:34.950-07:00I've been randomized.<span style="font-style: italic;">Randomization</span>. The word is, thus far, more intriguing than the experience. For those who don't know: randomization is the first dose in a drug trial. It's when you are blindly given either THE DRUG or the placebo. (Sometimes it's blind, differing doses of THE DRUG.) Today is MY randomization day! I'm at the center where the study is being conducted for Novartis' FTY720 (Fingolimod) trial, being monitored for 6 hours after my first dose of what may or may not (Shhh! It's a secret.) THE DRUG. After much help from the nice IT guy here, I'm now slurping from their wireless trough, surfing their cable tv, and I even got a free lunch! (A big thanks to the radiology techs here for sharing their spread! What can I say? Radiology is a small and tight knit family.)<br /><br />Just so I can satisfy the curiosity of other potential Lab Rats, lemme tell you about today so far:<br />Came in at 9am and met the woman who is monitoring me today. It has to be a person who's new-to-you to ensure "blindness" and objectivity. Had an EKG and was hooked up to the Holter monitor again. I gotta wear it for 24 hours again, but this time I got "stickies" that are for folks with sensitive skin. I was skeptical at first, but I am a hell of a lot less itchy than last time.<br />Waited for an off-site MD to read my EKG and get the thumbs up to dose. New Woman checked my temp, blood pressure, and heart rate (furthermore referred to as <span style="font-style: italic;">vitals</span>) before giving me a small pink capsule to swallow with water. I worked last night and the ER was retardedly busy so I tried to nap, but couldn't overcome the espresso I had to drink in order to get here on time. Watched some of the Today show and Ellen, all the while having vitals checked hourly. I ran into some old friends from the radiology world and had lunch (always the <span style="font-style: italic;">patient</span> and the <span style="font-style: italic;">professional</span>). Finally got online, thanks to NO SKills of my own, and here we are.<br /><br />Not only have I successfully not died, I feel fine. I think. I noticed my heart rate is much lower than usual, which <span style="font-style: italic;">is</span> an expected side effect of THE DRUG. I told myself I wasn't gonna speculate about whether I was on the real thing or the placebo, but now that I've taken it I realize I was just bullshitting myself if I thought I wasn't gonna be hyper-self aware. I mean, I'm sleepy, which could account for my low heart rate, and the weird taste in my mouth could just be bad-breath, right? I dunno, but I refuse to go bat-shit crazy for 2 years trying to figure it out. "They" (other trial participants, people half a step removed from the study) have told me that THE DRUG is easily tolerated by most. Some have had nausea for the first couple of weeks, but I haven't (yet?). I do have a freakishly robust GI system. No really, I very rarely suffer any kind of upset stomach, gas, indigestion, food intolerances, or anything. I may be a flabby, limp noodle on the outside, but I am intestinally fierce!<br /><br />We'll see. Doesn't that piss you off? <span style="font-style: italic;">Everything</span> with MS is, "we'll see." "We'll see if this drug works for you." "We'll see if you can walk in 10 years." "We'll see if you can tolerate painful injections foreverandeveramen." "We'll see if <span style="font-style: italic;">they </span>discover a cause/cure for this stupid disease." "We'll see if we feel like covering the costs of your prescriptions." "We'll see how tough you really are missy, 'cause your in for a raucous fuckin' ride now!"@whiskey.xray.yoga.zulu http://www.blogger.com/profile/13486715100955603014noreply@blogger.com3tag:blogger.com,1999:blog-7136925847988611127.post-55691016673760614342009-03-04T18:02:00.000-08:002009-03-04T20:08:43.024-08:00Screen name: LabRatIt's been a while and I am sorry to have neglected you. I got distracted by Facebook after my mother dragooned me into joining, but that's no excuse. Also, I've been miserable at work and with the economy and just didn't feel it would help to indulge my misery in "print." Mostly, I've been busy getting all the screening exams for the Fingolimod trial, which is taking place about an hour south of me in Vero Beach, FL. I just decided to wait until I had completed the screening so I could unload all the details here at one time.<br /><br />So far, so good. I've now had blood and urine labs, an extensive eye and optic nerve exam, a pulmonary function test, a high-resolution CT of the chest, an MRI of the brain, a skin survey by a dermatologist, a normal physical, a neurological assessment, timed walking trials, timed peg board trials, a memory test. Is that everything? Oh no, I missed the worst one. I also had an Echocardiogram, which is basically an ultrasound of your heart. All of the tests/exams were in different places, all about an hour from home. Inconvenient at least, but none took very long or were very difficult. Here's a rundown of how they went:<br /><br />1> I had the initial meeting with the study directors who are very nice and accomodating. They asked about a gazillion questions, took blood and pee, and had me fill out a ream of paperwork. They have been very helpful setting up the appointments for all the other tests and rearranging things around my ridiclously complicated schedule. The neuro who's name is on the study did a normal physical and I was off.<br /><br />2> The Hi-Res CT of my chest was uneventful, and quick. They even let me take a CD of the images with me although I'm thinking they probably weren't supposed to. They don't have any idea that I look at CTs all day, and probably assumed that a) I wouldn't know how to load the disc, or b) I wouldn't have any idea what I was looking at. Wrong on both counts, and I now know that despite ten years of smoking, I've got perfectly healthy lungs (and gorgeous clavicles if I do say so!).<br /><br />3> The eye exam was the same day as the CT and mostly as per usual, except they did a test that creates something like a topographical representation of the optic nerves. The doctor was nice (and kinda cute!) and explained everything thouroughly, saying that there is thus far, no damage to my optic nerves. He said he'll be examining me repeatedly throughout the study. Then I had to do the hour-long drive home at 4:30 pm with my eyes dilated. Awesome.<br /><br />4> The MRI was also typical. Quicker than usual, which I assume is because they do only the protocols specifically called for by the study. I'm guessing that will be repeated throughout the 2 years of the study too.<br /><br />5> The pulmonary function test was done at a hospital so there were the usual hassles of parking and a long registration process that comes with going to any hospital. The respiratory therapist that adminitstered the test was friendly and funny, and apparently I can look forward to seeing him again and again. He said he's the only one who does the PFTs for the study. He also responded well to the whole "I-have-MS-and-here's-how-I-found-out" story. He said, "Alright, well, that's lame dude." This IS Florida and he probably actually is a surfer dude.<br /><br />6> The skin survey was just what it sounds like. Except that I had had to drive a long way before stripping to my skivvies to get ogled by strangers. The nurse made comments on my tattoos, but not the dermatologist (much to professional, I'm sure). He started at my scalp and worked his way all the way down to the soles of my tattooed feet. He dismissed me with the comments, "The nurse'll give you some info about malignant melanoma," and "Nothing to cut on today."<br /><br />7> The neuro assessment was pretty much the same as the usual one in my personal neuro's office, and was administered by a different MD than the one who's in charge of the study. She said it was to establish a baseline and will be repeated once more before I start on the drug. I did two rounds of tests the same day that included being timed while walking a prescribed distance, placing 9 pegs in a board and taking them out with each hand, and a memory test. These tests all have to be redone before starting the drug.<br /><br />8> The echocardiogram was definitely the worst, but probably wouldn't be for other people. I just happened to catch the tech doing the test on what was obviously a bad day, and I think she vented her frustration on my chest. I could tell as soon as I saw her that she was flustered and I might've considered rescheduling but I'd already wasted two hours of my life driving there (and back.) The test is a little uncomfortable in general because you have to hold your breath a bunch of times and you have to just stop breathing. You don't get to take a breath and then hold it. Just trust me, it's more challenging when you just stop. But the really bad part was that the tech was just pummelling me with the transducer (ultrasound wand thingy)! Seriously though, my chest is bruised! Fortunately, this was the one test that my husband had ridden along with me so I had someone to complain to immediately, and then we had a nice lunch out and a chance to chat in the car.<br /><br />9> I forgot to mention in the list before that I had to wear a Holter monitor (a portable heart monitor) for 24 hours. Wearing ten sticky leads for a whole day is itchy and annoying, but totally do-able.<br /><br />All in all, the testing was no big deal, but driving back and forth is getting old. I gotta go back for repeats of the neuro test this week and then I'm scheduled for my first dose next week. I have to take the first dose (this is called "randomization") at the center, and then be monitored for 8 hours, just in case I have a reaction and try to die or something. They have cable and comfy armchairs, and wireless internet so I can bring the lap top and let you all know how it goes.@whiskey.xray.yoga.zulu http://www.blogger.com/profile/13486715100955603014noreply@blogger.com5tag:blogger.com,1999:blog-7136925847988611127.post-75774094403106741532009-02-01T20:36:00.000-08:002009-02-01T21:18:13.336-08:00Hell month is over at last.Well, actually don't take that title too seriously. I'm celebrating February 1st <span style="font-weight: bold;">only</span> because it marks a respite from holidays for me and mine. My birthday is in the beginning of November and is kept company by my dad's birthday and Thanksgiving. December herald's my son's birthday, Christmas and New Year's of course, and also my wedding anniversary. And then, just when we've gone completely broke, January comes along with 5 more birthdays. YES, FIVE! My daughter's, husband's, stepmom's, little brother's, and best buddies' special days all occur between January 14 and 31. Finally it is February and because of that list I just gave you, we don't get too amped up about Valentine's Day 'round here.<br /><br />Now that I won't be SO busy I might have time to enjoy the fact that I've been feeling so good. I started working out the week after Christmas because I decided that being sad about feeling fat wasn't likely to change the fact that I am fat and getting fatter every year. So I've stuck with working out at least 3 times a week for more than a month now and I feel great. I have only lost a few pounds, and that's disheartening when I feel like I've eaten well and <span style="font-style: italic;">tried so hard!</span> But at least I'm not getting heavier and I probably just need to eat less. I've kept a food journal so I <span style="font-style: italic;">know </span>I haven't done that bad, but I haven't been counting calories or anything. I hate counting anything related to food including calories, carbs, fat, bites, portions, sugar, or fiber. I did stop eating sugary things like cookies, cakes, ice cream, candies, chocolates as soon as Christmas day was over. And I only cheated to have a little tiny bit of cake and ice cream on 2 of the 5 birthdays. I feel I've been downright saintly in the kitchen so I don't get why I haven't lost more pounds or inches, and I'm starting to get a little pissed about it. I know, take out my anger at the gym and stop pestering all of you with my weight woes. I'm determined to keep trying this time.<br /><br />My most important news after a long break from posting is really just that I'm doing well. I've been off all disease modifying meds for 2 months now and I feel great. I have energy and all my parts are working. I've been feeling strong and coordinated, even at work. Muscle spasms have been no better, but no worse and I'm managing them fine with the Baclofen. I've been in good spirits and less short-tempered with my short people. My hubs and I have been getting on well despite the fact that we're feeling ALL the effects of The Economic Issue. I'm going for my first screening in the Fingolimod trial this week and should start taking the pill (yes, PILL, not shot!) in about a month. I'm excited about it and have decided to just <span style="font-style: italic;">expect good results</span>. I'll be sure to keep you posted on the whole bidness. <br /><br />TTFN Pooh!@whiskey.xray.yoga.zulu http://www.blogger.com/profile/13486715100955603014noreply@blogger.com6tag:blogger.com,1999:blog-7136925847988611127.post-25383183124127391832008-12-24T08:38:00.000-08:002008-12-24T09:28:55.492-08:00Got my Solu-Medrol Cherry popped.So I was at work yesterday when this crazy ass headache crept up behind my eyes and my vision started to go all blurry like I couldn't keep things in focus. My left eye started to hurt and I just had the weirdest feeling. So on my lunch break I decided to run across the street to my neuro's office just in case. I really thought these feelings could be more likely related to an oncoming migraine rather than optic neuritis but I was freaked so I went. He didn't see anythig when he looked in my eyes, and agreed it could just be a migraine but decided he'd rather be safe than sorry and gave me a round of IV Solu-Medrol in the office. He sent me home with a week's worth of PO Medrol too.<br /><br />Lemme start by saying thanks to all the bloggers who have posted abut the myriad side effects of steroids. At least I was warned that I would feel like a maniac. There were however, still some surprises in store for me. First I was shocked by how quickly and how much better I felt by the end of the infusion. Unfortunately I was also surprised by the gawd awful taste in my mouth and further by the fact that the taste hasn't gone away. Everything tastes like sweaty hairy ass right now and the only exception I found is sweet tea. This seems related to the paradoxical situation with food in general. I want to eat every thing in sight until I taste it and then I never want to eat again. I feel plain odd and fidgety and paranoid, but at least I have the energy to do all the Xmas Eve cleaning and cooking. The cooking's extra challenging today since I use recipes really just as <span style="font-style: italic;">suggestions</span> and usually season to taste, and I'm making a traditional Italian Christmas Eve fish dinner for 12. Hope it tastes good to all my husband's Italian relatives, 'cause how the hell would I know?<br /><br />Mostly I'm surprised that I'm having these issues at all. My husband says it's naive of me, but I really thought I could skate throught the 3 month wash out period with no meds before I start the Fingolimod trial without any detriment. Last night though I was laying in bed when someone snuck under the covers and locked my left arm in an invisible vice. I admit I panicked a little. I couldn't move my left wrist or hand at all, and there was an intense crushing sensation in my forearm. I got up and took the next dose of Medrol and it felt <span style="font-style: italic;">better</span> this morning, but still not right. All the left sided ataxia from my last relapse had seemed to go away a few weeks ago so I don't know if this is NEW or OLD. Grrrr. Very frustrating.<br /><br />On top of feeling creeped out and bizzaro, my neck and joints are hurting and I'm gonna blame it on the drugs and the MS because it's a beautiful 78 degree Xmas Eve here in Florida. I finally feel a little Christmas-y though at least so it's back to the holiday chaos now.@whiskey.xray.yoga.zulu http://www.blogger.com/profile/13486715100955603014noreply@blogger.com5tag:blogger.com,1999:blog-7136925847988611127.post-59420672484452834132008-12-03T13:05:00.001-08:002008-12-03T14:20:10.869-08:00My day is totally kicking ass! Bring on the FINGO!This is a <span style="font-weight: bold;">good day</span>. The sun is shining on this b-e-a-utiful Florida day and I'm back to feeling pretty good. I saw the neuro today and he gave me the thumbs up to join the <a href="http://content.nejm.org/cgi/content/short/355/11/1124">Fingolimod</a> trial taking place nearby. I thought for sure he'd be cross with me for quitting the Copaxone (I have to wash out for 3 months before starting the trial.), but he was totally into it. Turns out he used to do some clinical trials himself and used to chair the <a href="http://en.wikipedia.org/wiki/Institutional_Review_Board">IRB </a>(safety committee for medical research) at the hospital where we work. The nurse took a look at the lumps I was getting from the injections and said he would probably want to discontinue the Copaxone anyway. I don't know why really but I fully expected him to tell me I was a crackpot for risking myself with a un-FDA-approved drug and would chastise me for skipping the last two weeks of Copaxone. Instead, he was really supportive and gave me some good info about how clinical trials work. This encounter reaffirms my choice in neuros and confirms my addition of him and his staff to my Xmas card list. <br /><br />I can't wait to get started in the trial. I know it's ridiculous, but I feel like I'm carrying on a family legacy by participating. My grandfather did a lot of medical research and invented a lot of really common medical products. As common as <a href="http://flickr.com/photos/17065981@N00/2894546636">Hep-locks</a> and <a href="http://en.wikipedia.org/wiki/Prosthetic_devices">prosthetic hips</a>. My whole life my mother would occasionally get this weird look on her face and say, "You are JUST like my father." I never knew if it was a compliment or insult; they sometimes had a strained relationship. But I got to spend some time with him before he passed away, and I think she was right. He and I were/are similar in our analytical-ness and way of communicating. Plus, he was a dirty old Englishman and I think I may be the only person who really appreciated his sense of humor. I visited him once in rehab after a severe foot injury (diabetic neuropathy) that he got by driving his scooter like it was an ATV. I told him I was going to the store and asked if he'd like me to pick up anything. (He loved sugar-free hard candies.) So he says in his thick south UK accent, "Yes, love, could you get me a new ass?" And sucker that I am asked, "What's the matter with <span style="font-weight: bold;">your</span> ass?" And straight-faced, dry as hell he says, "It's cracked right down the middle." He got lotsa giggling and eye-rolling from me, but the nurse didn't even crack a smile. So either only I think that shit's funny, or she couldn't understand a word he said. Either way, he was a great guy and I know he would totally get behind me on this drug trial though he'd also pick apart the trial and riddle me with questions. He died before I was diagnosed but I know his respose would've been, "That's shit luck, that," and never have treated me any different. Might've even forgot all about it, or offered me his pogo stick (cane). He stayed savvy till the very end though and his will included donation of his remains to medical research. He was the one who convinced me to seek a career in medicine and radiology would be best because "It's all knob-twiddling and button-pushing. You love that stuff. Plus there's tons of advancements to come in the technology to keep you from getting bored. And since you live in Florida, where people go to get sick and die, you'll always have work." Sage advice from a very practical man.<br /><br />And the second fantastic thing that happened today happened while I was in the shower. (No not<span style="font-weight: bold;"> that! </span>Cheeky!) I'm in the shower and my hubs pops in and says, "Hey, a friend stopped by and needs to use the toilet. Do you mind if he comes in?" (We only have one bathroom.) And I'm wondering who it could be that my jealous husband trusts to be in the bathroom while I'm naked on the other side of a flimsy curtain and I hear, "Hallooo Julie!," in the sweet voice of my hubs' best friend of 30+ years. He's been away indefinitely on the other side of the world for way too long, and surprised us by coming home at last. He and my husband have the same weird-ass name (They're both named <a href="http://en.wikipedia.org/wiki/Shiva">Shiva</a>, after the Hindu god of destruction. Other Shiva used to date a girl also named Julie. Lemme tell ya, there was major confusion on the phone and lots of jokes about going into the wrong bedroom.), and are the reason "brotha from anotha motha" is the most common cliche in use around here. He is truly <span style="font-weight: bold;">family</span>, and our life is better when he's around. Anyway, I was so excited I had to fight the urge to jump out and hug him naked and dripping! Instead I just shrieked, "I love you!" and finished up as quickly as possible. He's been gone so long that it's dream-like to have him back in our presence. He is easily the luckiest sonofabitch I've ever known and hopefully it'll rub of on my Shiva in the way of some profittable employment. If not, I don't care, I'm stoked!@whiskey.xray.yoga.zulu http://www.blogger.com/profile/13486715100955603014noreply@blogger.com5tag:blogger.com,1999:blog-7136925847988611127.post-84831013387662476422008-11-15T18:52:00.000-08:002008-11-15T19:51:25.543-08:00Holy crap! I'm buring and freezing!My ass is hot! No really, it's wide but HOT! I've just done my 5th Copaxone injection, this one in my hip, and it's making my WHOLE ASS BURN. Is this for real? Have I accidentally sat on the iron again? No. Did I mistake the stove top for the desk chair? No silly, they don't make stoves out of leather. It must be that vial of evil I just shoved into my ample layers of subcutaneous fat. So far, I have had around 20 minutes of intense sting with each shot. Lumps in a variety of shapes, sizes, and firmnesses. The sites are sore for DAYS after. What the HELL?!<br /><br />Listen, I am not chicken shit about needles. I have a lot of tattoos for Pete's sake (including on the ribs and feet, which some think are the most painful spots), and hardly flinched through a year and a half of Avonex injections. I can start an IV on myself with one hand, and would trust my husband to suture me if I ever needed it. So what am I doing wrong here? The alcohol is totally evaporated. I've tried compression, heat packs, and ice packs. I am not rubbing or scratching. And while I have limited square footage that doesn't have a scar, freckle, mole, tattoo, stretch mark, mosquito bite, or booboo nearby; I've managed to steer clear of all those things so far. I am still screwing this up somehow? The hubs thinks I'll get used to it after a while (he said, "I'm sure you won't notice it after a year or two. Then you can be in charge of all the wasps nests in the yard!"), but I find that VERY hard to believe.<br /><br />At the same time, I'm freezing. Again. <br />I've always been one of those people who's always cold. My average temp is like, 97F. We live in sunny Florida, so when the DH turns the air lower and lower, I stack the fleece blankies higher and higher. When I lived up north with my folks for a winter, I shivered off 25 lbs. in one cold season. I got a mild case of frostbite as a kid and never seemed to warm up again. Until Avonex.<br />At first I would just be hot for a day or two post Avonex injection. For the last year however, I have been schvitzing hot ALL the time. Like, sweating bullets in the scan rooms at the hospital that have to be kept at 65F or lower so the machines don't overheat, kind of hot. I had a hysterectomy this year, but I kept my ovaries so it's not early menopause. I was pregnant during the 4 months of wildfires in '98 that rained ashes down on us, and even then I was not this hot. But I'm happy to report that after 4 weeks OFF Avonex, I'm not hot anymore! I've never heard anything about Avonex being related to increased body temp but I guess it makes sense for an interferon to have that effect. So I'm sitting here with a burning ass and frozen fingers, but altogether I'm happier and feel better than before. Maybe the Avonex was affecting my mood too.@whiskey.xray.yoga.zulu http://www.blogger.com/profile/13486715100955603014noreply@blogger.com4tag:blogger.com,1999:blog-7136925847988611127.post-11994414103612889112008-11-10T22:15:00.000-08:002008-11-10T23:05:50.146-08:00Thanksgiving comes early.I <span style="font-style: italic;">think<span style="font-style: italic;"> <span style="font-style: italic;"></span></span></span>I may be starting to feel a little better! I'm still stupid tired and my left arm isn't exactly up to par, but I've been walking reliably for a few days and my head doesn't hurt so much. My neck is still killing me and since the radiologist I work with said my most recent MRI of my neck was "pristine," I don't know what to make of the pain. My mummy is taking me for a massage tomorrow though so maybe that'll help. And one of my smartest friends (she's a RN, she knows what I REALLY need) got me a gift certificate to our chiropractor for several adjustments for my bird-day. He actually DOUBLED the number she paid for when he found out who it was for!<br /><br />Actually, I got <span style="font-weight: bold;">many</span> well-suited gifts for my 30th. Several GOOD bottles of wine. Several massage gift certs. A tattoo gift cert. A calendar from my son so I can write everything down and not forget him at school again. (A million times I am so sorry E!!!) Nice, relaxing aromatherapy girly stuffs. I got several lovely meals out of the weekend and a party with all my nearest and dearest mates. I gave myself the gift of a weekend off from work, and it was truly and thoroughly cherished.<br /><br />More significantly, I got some much needed attitude adjustments. Several things have come up to make me grateful for the following:<br /><br />~I am quite happily and stresslessly married and not at all concerned about whether or not MY husband is cheating on me. This is not the case for everyone in my life.<br /><br />~I am relieved to be "out of the closet" with my boss. She chatted me up at lunch today about trial MS treatments and nutritional supplements without her face turning purple like it does when she's stressed or faking control-of-the-situation.<br /><br />~This <a href="http://lazyjulie.blogspot.com/2008/11/my-gratitude-fix-o-day.html">video</a> from Lazy Julie's blog gave me some much needed perspective. I must stop being a whiney assfuck even if only in my own head. <br /><br />~Two officers from the local police department (who were not my brother) gave me a great deal of assistance with an unruly patient in the ER today. Thus renewing my faith in THE MAN, extending beyond THE MAN that is my little brother.<br /><br />~My bestie is having a baby tomorrow. And since we are so close as to have matching moles, there will finally be a brand new turd squirter in the world that I will have full rights to sniffing and snuggling as often as I like.<br /><br />~<a href="http://blindbeardsmsblog.blogspot.com/2008/11/3-fs.html">Blindbeard</a> used the term "penis wrinkle" in a recent hilarious blog, and that always lights me up.<br /><br />~My fave aunt (don't tell my other aunties) is in town and she's requested that I take her to both the ashram (read: interfaith spiritual commune) were my hubby grew up AND the local porn-super-store. How much fun is this week going to be?<br /><br />~And finally, the Health Insurance Rapists have agreed to cover the Copaxone that I will be able to start tomorow since my preferred pharmacy has agreed to provide me with it instead of having to go the the "specialty pharmacy" at the local looney bin. Seriously, they're only open to the public for 2 hours, 1 day a week. I hear it stings like a bee, but it at least it won't be such an arsebite to get my hands on the shit.@whiskey.xray.yoga.zulu http://www.blogger.com/profile/13486715100955603014noreply@blogger.com7tag:blogger.com,1999:blog-7136925847988611127.post-13456160827469655912008-11-06T14:31:00.000-08:002008-11-06T14:56:38.510-08:00Birthday BitsToday, I am 30 years old.<br /><br />Yay Obama! Finally, I can feel proud to be an American again.<br /><br />Happy belated Guy Fawkes Night! Wish I'd had an effigy to burn last night.<br /><br />Two new lesions on my MRI. Switching to Copaxone from Avonex. Wish me luck.<br /><br />Quit smoking. Not grumpy, mostly relieved, KNOW that I will be completely elated in a day or two.<br /><br />Considering vegetarianism again. Meeting some resistance from the man of the house.<br /><br />Started PT yesterday and had thought I was doing much better. The therapist proved to me that my left side is still retarded and even my right side is relapsing somewhat. Also brought into focus that I AM SO TIRED. Still.<br /><br />I want really badly to be excited about my birthday. To either be happy or pissed about it would be fine, but this fatigue induced lethargy is downright depressing. My husband is in the kitchen making me a cake. He washed my car today and bought me a tattoo gift certificate. I unexpectedly got the day off and wasted all of it sleeping. My kids are gonna come home from long days of school and soccer/dance and still be really stoked and energized about my birthday. Why can I not bring myself to care? I completely hate myself today.@whiskey.xray.yoga.zulu http://www.blogger.com/profile/13486715100955603014noreply@blogger.com6tag:blogger.com,1999:blog-7136925847988611127.post-90662127346962771072008-10-28T08:19:00.000-07:002008-10-28T18:00:11.130-07:00To relapse, or not to relapse?I'm still having a hard time figuring out what "significant new symptoms" means. Something <span style="font-weight: bold;">weird</span> happens to my body at least once a week even when I'm not relapsing and it's just not my style to be running to the doctor all the damn time. Apparently, I am officially mid-flare right now.<br /><br />Thursday I finally caved and went to see the neuro after 3 straight days of my left arm failing it's duties. I've been having this problem with my left side for about a month, but it's been off and on. So I went to see dude, and he chastises me for not coming sooner after hearing my list of recent symptoms. And I had forgotten a couple because one is that I can't remember shit right now. I've been word fishing a lot lately which makes writing, blogging, and explaining the magic of radiology to my patients very frustrating. My legs have gone all wonky as well so I limped around the hospital all weekend, and no one had the balls to ask me why. My head hurts. A lot. But the doc says headaches are not correlated to MS. Huh?<br /><br />So WE decided to forgo the IV solumedrol since I've probably already been relapsing for several weeks and I can't afford to take the time off for the infusions. I'm actually starting to feel a bit better but that's likely due to the fact that I have been off work a couple days. My next stretch is 55 hrs in 5 days, so we'll see how it goes in the middle of <span style="font-weight: bold;">that.</span> And while I've woken up feeling pretty good the last couple of days, by noon my heads athumpin, my left arm is stupid, I get all shuffle-footed, my neck aches, and it feels like nap-time straight through to bed-time. When it finally <span style="font-weight: bold;">is</span> bed-time, I'm suddenly wide-the-fuck-awake, and my legs start to jerk.<br /><br />All this is causing me to have an attitude that's not super-conducive to doing Halloween projects with my short people, or getting stuff done around my house which is filthy. I've got an hour long joyride in the knockknockbangbang magnetic fun house to look forward to in two days as well. And for the first time, the script for the MRI simply states "MS" as the ordering diagnosis, so I'm guaranteed to get at least one, "But you look so gooooood!," from one of my colleagues in the MRI department at work. If the results are anything like I expect, I will have to start thinking about which meds to try next since the Avonex is obviously not working.<br /><br />I'm grumpy and lonely coz my husband's working out of town this week and he's the only person in my life that can be nice to me without making me feel patronized or placated. My cop brother will be coming around in his squaddie though to "make sure everything's ok" and not at all because he wants to mooch off my wi-fi and freak out my neighbors.<br /><br />Jeez, I'm just whining now. Think I'll call it quits.@whiskey.xray.yoga.zulu http://www.blogger.com/profile/13486715100955603014noreply@blogger.com5tag:blogger.com,1999:blog-7136925847988611127.post-12319060159635162662008-10-06T13:00:00.000-07:002008-10-08T18:31:37.760-07:00No Empire, No MoreMy favorite comedian is a cross-dressing English chap named Eddie Izzard. He does a bit in his "Dress to Kill" show about Europe and World War 2 which is hysterical. <a href="http://www.youtube.com/watch?v=6omQ5JjjLsE&feature=related">(And you can watch it here.)</a> At the end of it he's talking about England having to give back the countries they had <span style="font-style: italic;">acquired</span> after many years of being one of the world's greatest empires and he shakes his head and says in a dour voice, "No empire, no longer." It's that quote to which I referred when I decided to call my blog No Empire No More. (I did realize I was misquoting; I didn't want to rip him off completely.) It expresses how I've felt since my MS diagnosis. I was once powerful and rich with energy and capacity. Now I'm not always sure who I am anymore.<br /><br />In younger years, I was something of an athlete. I've always been a little clumsy. My shins riddled with bruises from lacadaisical clamberings in and out of our huge van or regular skirmishes with my big brother. But I played soccer and hockey for many years, and was pretty good at both. I seemed to have plenty of physical coordination whenever I set my mind to using it. I spent many teenage summers surfing and winters skiing and snowboarding. I had no fear. I would launch myself whole-heartedly into any strenuous or dangerous physical activity. I've jumped off of 80 foot bridges in Central America, and had the fortitude after to climb the 30 slippery feet of mud out of those rivers. I dragged my poor father on every thrill ride the east coast has to offer. I hiked in the Andes mountains in Chile. I rock-climbed and repelled in the Shenandoah Valley. I was in fantastic shape before my two pregnancies made me a little squishy.<br /><br />I also used to be really smart. I have always been a good student and a rabid reader. My IQ was tested as a kid and it was pretty high. My memory was just shy of photographic. I have always been an endless treasure trove of trivia. I have always been a quick study with a knack for figuring out the best and fastest way to do anything I've set my mind to. I took one of those aptitude tests in high school that are supposed to help you decide what to be when you grow up, and the results were that I could probably succeed at anything. (Not very helpful for someone who is terminally indecisive.) I made extra money in college tutoring in my major and <span style="font-style: italic;">editing<span style="font-style: italic;"><span style="font-style: italic;"> </span></span></span>people's papers for them in a myriad of subjects. I should have gone pre-med but my first passion was music and I pursued that first. I survived being the youngest and only female student in my major by being the <span style="font-weight: bold;">best</span> student in my major. I used to be able to read a book on anything and master it.<br /><br />I used to be able to do it ALL. I worked two jobs the whole time I was in school and averaged about 3 hours of sleep a night. I could juggle kids and jobs and school and friends with aplomb. I never used to have any trouble keeping track of where everyone goes and when. I could remember all my tasks, assignments, grocery lists, etc without having to write them down, and even return the library books on time. I was a multi-tasking phenom. I felt like the Empress in my world most of the time. I manged a lot of work and stress, and felt like I was born to do it. Don't get me wrong, I've never considered myself <span style="font-style: italic;">royal</span> or even dignified. But I used to have the sense that I'd been born into the <span style="font-style: italic;">nurture and nature</span> that formed me into the intelligent and driven person my parents always expected me to become. I was in <span style="font-weight: bold;">control</span>. I knew that I could decide what happened in my empire and that edicts I passed down to my "colonies" would be strictly adhered to. By sheer force of will (my father insists that I include congenital pathological stubborness in my medical history), I have always been adept at getting most things in my world to go the way I chose them too. Maybe luck had something to do with it, but more often than not, things in life have turned out exactly as I expected. Until now. <br /><br />I've not suffered so much as <span style="font-style: italic;">anyone</span> involved in WW2, and I would never mean to imply that. But since MS has become part of my life, I've seen the gradual decline of my empire. Thanks to a disease that is enigmatic and unpredictable at best, and crippling and devestating at worst, I can no longer do it all. I have lost access to the vast reserves of energy I used to tap at will. I have lost the ability to answer the question, "What if?," with even a small confidence in my best guesses. I can't remember everything anymore; there are holes in my brain and things leak out from time to time. I certainly cannot do one eighth of the physical activites I used to enjoy since most of them require good balance and all of them require some level of strengh. I feel like MS has taken a lot from me, but it has given me one thing. It has given me fear. I never used to be afraid of injuring myself. I've broken eleven bones and had two concussions; all of which I earned in fantastic adventurous ways. I have a reputation among friends and family for being "tough as nails like her father." Now, I'm afraid to go jogging on my own. What if I get hot, lose the feeling in my legs and feet, and end up falling and smashing my face or breaking a hip? Who will teach my son to surf now that I can't balance on the board? What if I get optic neuritis? I work in <span style="font-weight: bold;">imaging</span> for chryssake, how the hell am I gonna work if I can't see? My brothers are retards, who's gonna take care of my parents when they're old(er) if I'm disabled myself? The questions go on <span style="font-style: italic;">ad nauseum</span>.<br /><br />I'm not happy about it, but I've started to get accustomed to not being capable <span style="font-style: italic;">phy</span>s<span style="font-style: italic;">ically</span> of what I once was. Blindness and disability are scary enough, but it's <span style="font-style: italic;"><span style="font-weight: bold;">cognitive impairment</span><span style="font-style: italic;"> </span></span>that really has me worried. People know me as the answer girl. They think of me not only as smart, but really fucking smart and I'm not ready to let them down. They rely on me for useless information and pratical know-how. If someone asks me to describe myself "intelligent" is the first adjective I reach for and not because I'm arrogant. I'm not bragging here; I've no need to. Nerdiness is the side-effect of my personality and I've just reached an age where I am comfortable embracing my geek-dom. Here I am, <span style="font-style: italic;">finally</span> confident in myself at least intellectually. Now some neurologist tells me I've got a disease that will <span style="font-style: italic;">definitely </span>knock me off my high horse in the world of sports and fitness. Will likely result in future embarrassment at loss of control of bladder and bowel. All this and mental acuity goes in the toilet as well?! <br /><br />It may be lame, but I indentify myself with my brainy-ness. What I'm really afraid of is: Who will I be when I'm not smart anymore? Who will take up the responsibilities of my mind? Will I ever learn to trust someone else to run the Empire?@whiskey.xray.yoga.zulu http://www.blogger.com/profile/13486715100955603014noreply@blogger.com10tag:blogger.com,1999:blog-7136925847988611127.post-1828138590158338132008-09-29T13:05:00.000-07:002008-09-29T13:45:19.281-07:00And I'm feelin' gooooood.Imagine you can hear Nina Simone singing and the horns playing "Feeling Good," cause that's what's playing in my head right now. <a href="http://www.youtube.com/watch?v=lBy4QXAAil8">Or check it out here. </a> Aside from yesterday's post- Avonex- injection sluggishness, I've been feeling Good the last couple of weeks. We've been getting our asses handed to us in the ER and my schedule is as whacked as ever, but I've made it through each day without feeling like I'm dragging a semi behind me every step of the way. I even had the energy and drive to spend some "special time" with DH which is always good for my mood. (Wink wink, nudge nudge.) I think this is the first time since my diagnosis that I've felt it remarkable that I <span style="font-style: italic;">feel good</span>. It's not like pre-MS good, but it's better than usual post diagnosis and thus remarkable. <br /><br /> The down side is that I haven't the funds to make proper use of this golden time. I'm digging the fact that I can feel and move all my limbs enough to tackle some projects around the house or catch up on important family matters like visiting the mouth torturist (dentist), but NOW I haven't the means to do anything! It's bringing me down from cloud 9 a bit that we're broke and being broke is expensive. Hello overdraft fees! Ironic, no? And of course this is when random unexpected bills come in via certified mail from folks (the state of Florida) who will not be denied. And I'm certain that I'll get on top of the financial crisis just in time to have my wallet raped by the holiday season. My family's b-days are mixed in that blessed time of year and my anniversary as well. Everyone may be getting mix-tapes this year, I think. (I made one for my dad for Father's day one year when I was broke and he loved it. He's the one who passed on the music junkie gene.) And because I'm a cynic even when in a good mood, I'm also sure that my health-shit will hit the fan again soon or my husband will run his hand thru a saw or somthing at work. I can't watch TV because it keeps telling me that my 401K is going in the toilet, so maybe I should just cancel the cable? That would certainly save me a little cash. Thank gawd blogging is free! (I've been digging everyone's posts... even if I haven't commented.) The internet and my book collection have been keeping me entertained even if neither pursuit is what I'd consider a productive use of my time.<br /><br />Stress and extra pounds notwithstanding, at least I'm happy with my body right now. I've stumbled because I'm clumsy, not because I can't feel my feet. And everything that itches can be blamed on mosquitos instead of myelin monsters for once. All things considered, it could be worse!@whiskey.xray.yoga.zulu http://www.blogger.com/profile/13486715100955603014noreply@blogger.com2tag:blogger.com,1999:blog-7136925847988611127.post-64642900045765256282008-09-18T11:07:00.000-07:002008-09-18T11:35:23.196-07:00June Cleaver goes to soccer practice to show off her tattoos.Things are much better this week. I'm still broke, but so is everyone else in the country and I admit I like to avoid my misery getting lonely. The left-sided ataxia has let up and I actually had a few days at work that didn't suck ass. I'm on day 2 of a 3 day stretch of no work, and I allowed myself the luxury or sleeping all day after I took the kids to school. It was blissful, guilt free sleep because I had the foresight and the energy to get my house clean yesterday so that I could actually enjoy being stuck in the house with no money. I didn't even feel the pangs on June Cleaver-itis that usually drive me to scrub and scrub. (June Cleaver-itis is an infection acquired by only women upon giving birth. Symptoms include over-zealousness about their families' healthy diet and an unsuppressable sense that they are only decent mothers if their children live in a spotless home.) <br /><br />After ridding the house of clutter and sludge, I used the gift cert. for the tattoo shop that my husband gave me for our anniversary (Year 1 is supposed to be "paper", right?) to get some work done on my tattoo. It's a large piece on my left side. I've had the outline a while and now I've got the first third of color down. DH stopped by the shop and watched for a few minutes. I have lotsa tats but he's never done that before. He said he wants one too. My tattoo artist said I made it look easy, cause it really hurts like hell on the ribs. DH ws impressed. I kept to myself that there were a few little spots that I couldn't even feel. No need to give MS any credit for my toughness, I think.<br /><br />It's a stroke of luck that I'm off on a Thursday because that means I get to take my son, E, to soccer practice. And Thursday is the late practice (7-8 pm) so it won't be as hot out and I'll get to enjoy watching his enthusiasm. Z, my daughter will go to dance practice with her aunt so I'm off the hook for cooking a real meal. Thursday is fend-for-yourself day. <br /><br />I love this day.@whiskey.xray.yoga.zulu http://www.blogger.com/profile/13486715100955603014noreply@blogger.com0tag:blogger.com,1999:blog-7136925847988611127.post-7858078593309553422008-09-11T20:16:00.000-07:002008-09-11T21:06:44.560-07:00I'm Only Not Sleeping. I'm Stream-of-consciousness-ing.Because I have got clutter in my drain (brain) like Stephen King. Thanks Blindbeard for the handy analogy. I've decided swab some of it out with this post about random things, hoping that I'll be ready to sleep at the end of it. I'm due at work in a few short hours. Wish me luck!<br /><br /><span style="color: rgb(255, 0, 0);">An addendum to my list of symptoms:</span><br /><span style="color: rgb(255, 0, 0);">-Occasional stabbing pain in the face.</span><br /><span style="color: rgb(255, 0, 0);">-Lately, pain. Everywhere.</span><br /><span style="color: rgb(255, 0, 0);">-Frequent and/or urgent urination.</span><br /><span style="color: rgb(255, 0, 0);">There will be more I'm certain.</span><br /><br /><span style="color: rgb(255, 255, 0);">What exactly constitutes "significant new symptoms"(SNS)? The neuro always says to call if I have SNS, but does that mean blindness and paralysis or should I tell about muscle pain and new depths of fatigue? And how do you separate regular pain from MS pain? I had a hysterectomy over the summer and a subsequent surgery to remove a large blood clot (developed post-op). The cocktail of antibiotics they put me on annihilated all the good bacteria in my guts so I ended up with a raging case of </span><a style="color: rgb(51, 51, 255);" href="http://en.wikipedia.org/wiki/C._diff">c.diff</a><span style="color: rgb(255, 255, 0);">. Turns out, c. diff infections are crazy fucking painful! I never knew. I have more sympathy for my patients with c. diff now. I think I'm entirely recovered from the surgeries and infections, but I'm still getting bizzaro pains and irks in my pelvis. And damn! I pee a lot!</span><br /><br /><span style="color: rgb(0, 153, 0);">I started smoking again. I feel incredibly guilty. I know, it's really disgusting.</span><br /><br /><span style="color: rgb(255, 102, 102);">I had to have THE menstruation conversation with my 9 year old daughter last week. She's 9 and I think, hormonal already. Suddenly she has questions about boobs and shaving. Like me, she HATES to be the last to know about anything and I want to have long girly convos with her about all this stuff, but I'm sooooo tired and we are all sooooo busy, and my work schedule soooooo sucks ass. And last night the boy-child tells me, "I know babies are made from the goo, but where does the goo come from?" Really? They couldn't have these questions when we're lounging on the beach (a fave way of coping with Avonex side-effects) instead of at bed times that are already too late?</span><br /><br /><span style="color: rgb(0, 204, 204);">We're so broke. This year has financially kicked our ass. I have the best income I've ever had and health insurance for the first time in my -ahem- adult life. Somehow, I'm still a broke bitch. WTF, mate?</span><br /><br /><span style="color: rgb(255, 0, 0);">Am I gonna get laid off? Someone's gonna. Pleeeeeeze c'mon already! Fire at will! I can't stand the wondering anymore!</span><br /><br />Hurricanes? Gawd, I could totally use the overtime I'll get at work if we get whacked liked 2004. But there's rising home insurance costs, loss of life, and sand dune depletion to consider as well.<br /><br /><span style="color: rgb(255, 102, 0);">I keep having nightmares that horrific, violent, and painful things are happening to me. Shot in the arm while driving. Attacked by a panther in the middle of a crowded college campus. Stalked by thugs that look like rejected skinheads who finally start kicking the shit out of me just as arrive at my childhood home's playground. In all of these dreams the scary bit is not what you'd think. During all of the "attacks" I stay totally cool and collected. Until I have to decide if I should run for help or fight back. I'm totally wasting time making pro/con lists on how to react in every one of these dreams. I wake up terrified and infuriated with myself for being as indecisive in dreamland as I am in The Real World. Argh.</span><br /><br />I'm not sure this helped. Must try sleep again.@whiskey.xray.yoga.zulu http://www.blogger.com/profile/13486715100955603014noreply@blogger.com1tag:blogger.com,1999:blog-7136925847988611127.post-78203696068591136652008-09-11T13:58:00.000-07:002008-09-11T14:28:04.908-07:00Warning: Explicit LyricsSo I've just perused my recent blogs and comments and realized that I've been censoring myself. I typically swear like a sailor, and though I've been feeling particularly surly lately, I've noticed the language in my blogs has been 1) tame and 2) lame. I have an affinity for cuss words. I consider using them more cathartic and less damaging than just being pissed at everything politely. Don't get me wrong, I have and USE my manners. My mother is English and she taught me to be a proper young lady. On the other hand, my father IS a sailor and he taught me to curse like you mean it! My love of the F word led me to creating the "two-a day rule" regarding my children's swearing. My daughter was an early talker and there was not enough time for me to attempt setting a "good example" for her. She would swear as appropriately as you or I would before her second birthday. Example: "Ah shit, I lost my balloon," at about 14 months old. So I instituted a family policy that my children may use four letter words twice a day, as long as they ask permission first. This was a stroke of parenting genius in my opinion for the following reasons:<br /><br />1) They have to ask me (or their dad) permission, so it's taught them that I'm the boss.<br />2) If they ask me permission when we're somewhere like say, a school function, and I say, "No, not here honey," they learn that different behavior is appropriate for different places.<br />3) Saying "yes" complete diffuses any appeal that rebellion might've held. Taking the taboo away from these words has taken the edge off any peer pressure to seem cool by using them.<br />4) They suffer no shock symptoms when they hear those choice phrases from TV, movies, other swearers.<br /><br />So what's the consensus on cursing indiscriminately in one's blogs and comments? Like I said, I know HOW to use my manners and I don't want to offend people, but lately I just don't sound like myself. I have a sarcastic and sometimes raunchy sense of humor. I tend to talk about gross stuff because I forget that it freaks other folks out. (I used to wipe asses for a living and it helps to have a sense of humor about that shit. Heehee, punny!) In my past I was quite literally on the Sex, Drugs, and Rock 'N Roll tour and it's made me obnoxious person I'm am today. I guess it's insecurity rising to the surface but I wanna know: If I fly my true colors will I be hung like a pirate? All opinions and comments would be much appreciated!@whiskey.xray.yoga.zulu http://www.blogger.com/profile/13486715100955603014noreply@blogger.com2tag:blogger.com,1999:blog-7136925847988611127.post-73600342126984574702008-09-08T06:10:00.000-07:002008-09-08T07:37:33.431-07:00My MS story.I had been thinking that no one needs to hear my personal story because there are so many out there to read. Then I reconsidered because I really dig reading everyone else's story of how they were diagnosed, and maybe someone would like to hear about my adventure as well. So here goes:<br /><br />In November of '05 I was in school for radiology. I was also working per diem in nursing at the hospital where I still work. I was also raising two small children. For the above reasons I didn't even consider that the fatigue I was noticing could be explained by anything other than my chaotic schedule.<br /><br />I was getting dressed one morning and noticed that I had a "bruise" or something on my ribs beneath my right breast. I searched the area and didn't find any discoloration, but noticed a patch of strange sensation roughly 2 by 3" across. Now, I've always been somewhat clumsy. Even during times of my life that I was involved in soccer and hockey I noticed I had little coordination left once I left the field/ice. I often tripped over my own feet and cut corners too closely, causing me to swipe a hip or shoulder into a doorjamb or countertop. I thought the sensation on my ribs was <span style="font-style: italic;">odd</span> but not enough to give it much thought. Until it spread. A week later I realized not only had it not gone away, but it had spread down to my right hip and all the way to the midline of my body front and back. The whole right half of my trunk felt thick and numb and I started to get concerned. At this point my husband (boyfriend then) started to freak and called his best friend's mom who is a nurse (my own credentials are never good enough for him). She referred me to her chiropractor who specialises in nerve damage and spine traumas. He was very thorough. He examined me for over an hour and got the most detailed medical history from me I have ever given. At the end of it he said,<br /><br /><blockquote></blockquote>"The good news is your spine is in amazing shape for someone who has abused it so thoroughly. The bad news is I can't do anything for your symptoms. You need to see a neurologist. I think you have MS."<blockquote></blockquote><br /><br /> Over the next 4 weeks, the numbness spread all the way down my right leg. It seemed to only penetrate the skin and I could move my leg reasonably well, but I started having trouble being able to tell where my foot was at when I put it down on the floor. The leg got weaker and weaker and by 6 weeks in I was dragging it around for at least part of the day.<br /><br />At this point you've got to be wondering why I hadn't sought conventional medical attention. At the time I was uninsured, and a single mother. Even with the "employee discount" I could get in the ER I new I couldn't afford to go. I was in the middle of a clinical rotation (on site education where you <span style="font-style: italic;">practice </span>medicine under people with licenses) and I also couldn't afford to miss <span style="font-weight: bold;">even one day</span>, according to my militant professors anyway. The people I was working with eventually gave me an ultimatum and said, "Call your professor and go to the ER or find another clinic to study in!" They are an old school diagnostic center with old school equipment. Most radiological images are produced digitally these days, but this place was still processing film. My whole right side was black and blue from ramming into things in their dark room. You might think numbness is no big deal until your working half your day in the dark.<br /><br />Given my previous medical experience (6 years in nursing) and education I knew going into the ER I'd have a <a href="http://en.wikipedia.org/wiki/Computed_tomography">CT of my head with contrast</a> and that they'd be look for a tumor. They also drew blood and asked if I might have had a traumatic spinal injury that I had somehow forgotten. (ER physician's are truly the most retarded and infuriating of their species.) The CT was negative and they referred me to a neurologist. When I called for an appointment and told them I was uninsured the receptionist transferred me to the office manager. Surprinsingly, she was very understanding and said the doc would be happy to see me and at a discount even! She also called in afavor to get me break on the cost of my first set of MRIs. They scanned my head, neck and thoracic spine, and I went back to the nuero. Knowing I was in school, he pulled up the films in his office and showed me a lesion in my spinal cord around the <a href="http://en.wikipedia.org/wiki/Thoracic_vertebra">T6-T7 vertebra</a>. At this point the numbness had started to creep up my left leg and he explained that the lesion had only just barely poked into the left side of my spinal cord. This was also around when my sypmtoms started to unravel in the opposite way that they had spread. The doctor told me that was because the lesion was repairing itself from the least injured part first. Over another 4 weeks the numbness went away from the left foot, then right foot, and retreated up my right side slowly back to the point of origin over my right ribs. The doctor decided to diagnose me with transverse myelitis, but not-so-subtley hinted that I might have MS but didn't want to saddle me with that diagnosis before I finished school, got a job, and became insured. Very savvy, my doc. He told me to come back if I had new symptoms, or when I got insurance and we would do further testing.<br /><br />Flash forward 6 months or so. I finshed school. I passed my boards with a effing 96! I was offerred a full-time job with benefits at the hospital. I worked another 6 months at my new position with no new symptoms, but had another "just in case" MRI in December '06. The plaque on the old lesion was there, but nothing new appeared. I had worked hard in the gym and at yoga to regain the strength in my right leg. I had some twitches and muscle spasms in both legs still, but was assured that these were caused my that first lesion. In January '07 I woke up one day with a wretched headache. As a migraine sufferer my whole life I didn't think much of it. I had that headache every day for four months though. I went back to the neurologist and he sent me to surf the MRI tube again. Looking at the films I knew that the axe had finally fallen. There were 5 obvious lesions in my brain. I looked the scan over with the neuroradiologist at work and he confirmed my suspicions. He seemed actually frightened to give me the bad news so I tried to make him feel better by saying I had known it was coming. I had a <a href="http://en.wikipedia.org/wiki/Lumbar_puncture">lumbar puncture</a> under <a href="http://en.wikipedia.org/wiki/Fluoroscopic_procedures">fluoroscopy</a> (yes, in my own department at work again thanks to my insurance), and it came back positive for o-bands.<br /><br /> (Side note: the doctor that performed the lumbar puncture was one I work with every day. He is quite skilled, but not known for being particularly sweet or compassionate . When I told him I was being tested for MS he was shocked. He was the first person to say, "But you look so good!" To this day, he regularly follows up with me and seems genuinely concerned. When I told him the CSF was positive he said, " Well that's just not f*cking fair." I love him.)<br /><br />I have been on Avonex now for over a year with out a relapse or any <span style="font-style: italic;">significant</span> new symptoms. My husband I take turns poking me with the needle, and the side-effects are much decreased. The first 6 months I had a full-blown flu for 24 hours post injection. Now, I'm usually just very tired and a little achy on Sundays when I inject. Except yesterday I felt like crap because I had severely over done it at work on Saturday. I will eventually have to admit that I should not work 10 hour shifts in the ER CT scanner by myself. Saturday I hauled 26 patients from their stretchers to the scan table and back all by me onsies. Sunday I felt like I'd been hit by a train.<br /><br />My comprehensive list of symptoms is relatively short thus far:<br /><br />Fatigue (duh)<br />Muscle spams, twitches, and general fidgety-ness in both legs<br />Random itchiness and cold water drop sensations<br />Headaches<br />Balance impairment (Mild for now but getting worse. I'm gona eat shit soon I know.)<br />Sometimes I feel <span style="font-style: italic;">cognitively impaired</span>, sometimes I don't.@whiskey.xray.yoga.zulu http://www.blogger.com/profile/13486715100955603014noreply@blogger.com2tag:blogger.com,1999:blog-7136925847988611127.post-26526159846637236502008-09-04T19:19:00.000-07:002008-09-04T19:57:44.684-07:00Inside looking in.I work in health care. I hear the mixed cacophony of cheers and hisses from here.<br /><br />Specifically, I work in radiology. All day long, I take pictures of people's innards. (That's how I simplify it for my children anyway.) I look at guts and bones and brains alike and pass judgment on tissues, not persons. I work with doctors, nurses, technologists, and just about every other kind of medical professional. It allowed me a special insight during the process of diagnosing this enigmatic disease, and gives me a special, "Don't try to bullshit this person!," disclaimer card to carry to my own doctor visits. But the advantages end there in my opinion. <br /><br />Yes, I knew when my leg first went numb that the most likely causes were a brain tumor or MS. Yes, I saw the plaques in my brain on my MRI films and knew what they were 20 minutes after the scan, sitting in my own office; rather than waiting a week and having my neurologist deliver the news in <span style="font-style: italic;">his</span> office. I knew that a lumbar puncture, evoked potentials, and disability were becoming a part of my future. I knew how disappointed my family would be and that I would not be OKAY. Not the way I used to be anyway. What I didn't know was that if you work in health care, you aren't allowed to get sick. They won't say it to your face, but they are watching and waiting for you to slip up. They won't tolerate your complaining any better than they tolerate a colleague who is just plain lazy. They'll sympathize in a superficial way, but they will be expecting you to fail. I'm determined to be a pain in their asses for as long as possible, and the end is no where in sight!<br /><br />Here's what I know now: I know I'm too lazy to keep secrets and everyone knows I love to drink Newcastle. I came out with my diagnosis at work because I stumble just enough for someone to think I could be drunk. I know that my coworkers think of me as a hard worker and an intelligent person despite the disease. I know that lay-offs are in the air, and we're all smelling them, not just me. I know that paranoia is destructive. I know that other MS patients at my hospital are frequently getting the short end of the stick. I know that while MS is a mystery, even to other medical professionals, I am not crazy and this is really happening. For real, for REAL. I know that it sucks to have to explain what's wrong with you (as a patient) to every new nurse, doctor, or stranger who walks into your hospital room. But I also know that everyone else's ignorance is sometimes my advantage. I know these things now, and knowing is half the battle! GI Joe!@whiskey.xray.yoga.zulu http://www.blogger.com/profile/13486715100955603014noreply@blogger.com3tag:blogger.com,1999:blog-7136925847988611127.post-71670963823997188092008-09-03T06:14:00.000-07:002008-09-03T06:46:15.163-07:00I'm tired just thinking about it.So here we are again at the start of a fresh school year. My shortest family members are in 1st and 4th grade this year, and already racking up make up days due to Tropical Storm Fay. (Gustav missed us, but Hanna and Ike are on the way!) We're off to another 9 months of scheduling chaos: soccer practice, dance class, field trips, science projects, nasty-notes from teachers around Christmas time, Birthday parties, puberty!, playground spats, stuck-up stay-at-home moms, math homework designed by Satan himself, etc. All that and I work a variable schedule (read: entirely unpredictable and always changing at the last minute) at a 700 bed, level 2 trauma center hospital. And just because I'm slightly sadistic, I've also recently decided that I'm too fat and unhealthy to best deal with having MS. Stands to reason that it would be easier to handle being weak and tired if there was less of my ass to haul around, yeah? Some where in my day I'm supposed to make time to exercise and plan healthy, low fat, low calorie, (low cholesterol for my DH) meals that will magically still taste good enough to get down the throats of the short people.<br /><br />I know these are the same concerns of every parent at this time of year. I'm not special, and I feel better knowing my misery has company. So here's my question for the MSers dealing with all the usual back-to-school stress as me: How? Today I wake up and my neck is killing me. I don't want to drive my kids to school and go to the gym before I go to work. So how the hell am I gonna get any "healthier"? How am I gonna have enough <a href="http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf">spoons</a> to do homework and laundry and dishes when I get home from 10 hours of hauling patients and searching peoples insides? All the magazines and blogs advise MSers to "not over do it," or "give yourself a break" when you have those fatigue-plagued days. "Ask for help," they say. All the help in the world (and I'm grateful to have a lot of support) doesn't make anyone else my children's mother.<br /><br />What I really want to know is:<br /><span style="color: rgb(255, 0, 0);">Where can I get more <a href="http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf">spoons</a>?</span>@whiskey.xray.yoga.zulu http://www.blogger.com/profile/13486715100955603014noreply@blogger.com5tag:blogger.com,1999:blog-7136925847988611127.post-70254094375994093572008-08-27T20:22:00.000-07:002008-08-27T20:55:10.039-07:00I have MS and sometimes I like to bitch about it.And sometimes I don't. I think I have something in common with other MSers, but I've never read a blog that expressed this particular symptom: <span style="color: rgb(255, 0, 0);">I hate whining, but even more I hate feeling like a whiner.</span> But then I also hate fatigue, numbness, being banned from hot baths, and stumbling over invisible objects left carelessly behind by the Embarrassment Elves (spiteful little buggers!).<br /><br />Now, I know some may be offended by my reference to whining as a <span style="font-style: italic;">symptom, </span>but whining is something I consider a <span style="font-style: italic;">symptom</span> of the frustration that comes from your body not doing what you tell it to do<span style="font-style: italic;">. </span>The overwhelming internet content regarding MS is dogmatic about the importance of maintaining a positive attitude while contemplating your fate status post Multiple sclerosis diagnosis. The only site I've come across so far with a healthy balance of comedy and cynicism is <a href="http://multiplesclerosissucks.com/">Multiple Sclerosis Sucks.</a> Seriously, it's gotta be alright to vent in this forum, right? I mean, this doesn't count as whining if you can surf on by without being affected by my fleeting negativity. Sarcasm and satire are still the best ways to deal with stuff that sucks, aren't they?<br /><br /><br /><br /><br /><br /><br /><br /><br /><a href="http://multiplesclerosissucks.com/"><span style="font-weight: bold;"></span></a>@whiskey.xray.yoga.zulu http://www.blogger.com/profile/13486715100955603014noreply@blogger.com4