Monday, September 29, 2008

And 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. Or check it out here. 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 feel good. It's not like pre-MS good, but it's better than usual post diagnosis and thus remarkable.

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.

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!

Thursday, September 18, 2008

June 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.)

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.

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.

I love this day.

Thursday, September 11, 2008

I'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!

An addendum to my list of symptoms:
-Occasional stabbing pain in the face.
-Lately, pain. Everywhere.
-Frequent and/or urgent urination.
There will be more I'm certain.

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 c.diff. 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!

I started smoking again. I feel incredibly guilty. I know, it's really disgusting.

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?

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?

Am I gonna get laid off? Someone's gonna. Pleeeeeeze c'mon already! Fire at will! I can't stand the wondering anymore!

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.

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.

I'm not sure this helped. Must try sleep again.

Warning: Explicit Lyrics

So 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:

1) They have to ask me (or their dad) permission, so it's taught them that I'm the boss.
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.
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.
4) They suffer no shock symptoms when they hear those choice phrases from TV, movies, other swearers.

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!

Monday, September 8, 2008

My 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:

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.

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 odd 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,

"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."

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.

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 practice medicine under people with licenses) and I also couldn't afford to miss even one day, 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.

Given my previous medical experience (6 years in nursing) and education I knew going into the ER I'd have a CT of my head with contrast 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 T6-T7 vertebra. 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.

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 lumbar puncture under fluoroscopy (yes, in my own department at work again thanks to my insurance), and it came back positive for o-bands.

(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.)

I have been on Avonex now for over a year with out a relapse or any significant 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.

My comprehensive list of symptoms is relatively short thus far:

Fatigue (duh)
Muscle spams, twitches, and general fidgety-ness in both legs
Random itchiness and cold water drop sensations
Balance impairment (Mild for now but getting worse. I'm gona eat shit soon I know.)
Sometimes I feel cognitively impaired, sometimes I don't.

Thursday, September 4, 2008

Inside looking in.

I work in health care. I hear the mixed cacophony of cheers and hisses from here.

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.

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 his 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!

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!

Wednesday, September 3, 2008

I'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.

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 spoons 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.

What I really want to know is:
Where can I get more spoons?