Around and Around Some More

Been waiting forever to hear back on my FMLA paperwork, the only notification from the company handling my employer's claims a denial letter because they had not received the health care provider certification - which was faxed to them 3 weeks ago. They "found" it today, misplaced, but fortunately they had stamped the fax date and time received and it won't affect my case. I just need to wait for their next letter.

I saw my neurologist last week, and for the first time in the many years I have seen her I was irked. I had to make the appointment to come in, only to be told "there's nothing we can do right now because of your pregnancy."

I looked up the prescribing information on Copaxone, which is a pregnancy class B medication. That indicates a fair level of safety for use in pregnancy. However, the pregnancy itself generally quells relapses, so it's apparently not necessary. Fine, I can accept that. I don't really want to use Copaxone, but I don't know much about the other medications for MS, so I need to do some research. Not that it matters, since none will be prescribed anyhow until after I deliver AND provided I do not breastfeed.

In the meantime, I am not allowed to use Provigil or Lyrica for treatment of my symptoms - which do not diminish in the way relapses of the actual disease do. They are residual, they will continue (and continue to worsen), and I am in misery. Both are pregnancy class C medications, with a higher risk for use in pregnancy, only to be used when the benefits outweigh the risks of their use. Until I see my OB/GYN, though - they are out of the question, and even then there is no guarantee he will see any benefits outweighing the risks (which I admit will be a point of contention with me, seeing as how I am in severe pain and suffering the effects of "intractable and overwhelming fatigue).

What had me irked, though, was the fact that I had to go in for nothing - and she wants me to return in 4 months (while I am still pregnant, obviously) - again for nothing. Because she is the one signing my FMLA paperwork, I have little choice but to comply.

Her office staff gave me a copy of the FMLA paperwork (because the company handling my case claimed they did not have it, and I was going to fax it to them myself). I have burst into tears several times on reading them, and for some morbid reason I cannot tear my eyes away from them. Four benign-appearing sheets of paper, at first glance.

It is one thing to read literature about MS and the effects of the disease, how it can affect a person, outcomes, and prognoses. They are clinical, impersonal, describing a faceless, nameless patient.

It is entirely another to see things like "Probable duration of condition: Lifetime" and "Beginning and end dates for the period of incapacity: Permanent" when your name is sitting next to it in black and white.

It brings home a reality that had in many ways been able to be denied, disregarded, ignored; unfortunately, the illusion (and delusion) cannot last forever.

When the Boogeyman Grabs Your Leg

All you can do is scream.

The past couple of months have seen me in a downward spiral, regardless of my 800,000 vitamins a day, and now my other eye is getting all ganky. And all I do is sleep - regardless of two Provigil tablets a day. And now I am weak in all 4 extremities again, instead of just the right-sided ones.

This cannot be good, when my NL tells me it is time to apply for disability.

Totally Ready

I am totally ready for another change to the face I present The Blogosphere, but nothing has tickled my fancy yet. My fancy seems to have vacated the premises, a deduction I'm basing on the complete and utter lack of response I've gotten from it lately. Bitch went on vacation and didn't invite me. I want something funky. Or classy. Or bold and sassy, shiny as the Brass Nuts I proudly display on my mantle, polished to a bright finish. ***I don't really have nuts, brass or otherwise. I don't even have a mantle. But it sounds cool, doesn't it?***

My mind's a little fuzzy, so I need to find new pursuits, I guess. Personal and professional. I've gotten over my infatuation with the medical field, in every way, shape, and form. Modern medicine has failed me over and over, then got me with the Big Nellie, bent me over the exam room table and .... never mind. Anyhow, I've decided I will most definitely not be pursuing a career in the profession, since I could never look my patients in the eye and hand them the load of shit I've been handed for far too long.

In my past life, I used to go bowling and sometimes biking and hiking and I painted and did all kinds of cool shit. With the loss of most of the use of my dominant right arm and little to no fine or even gross motor skills, or much of the use of my legs for that matter, I was stumped as to what hobbies might excite the inner "me," having been deprived of ALL the things I loved to do.... save one. Reading. I have always loved reading above all else, and I was thankful fine and gross motor had nothing to do with it. Until my eyesight decided to take a shit on me, too.

Because I'm so good at reading and it's something I love doing, I've read and read and read some more, (gotta love CTRL++, to make the fonts BIG) and come up with a lot of "what ifs" and done a lot of AH-HA!-ing, in my quest to beat this monster that's been diddling my mind, my body, and my entire life the past 2 years. Diseases like MS were made for people like me. And that's the reason why--I'm not afraid to exercise my "cranial muscle."

A couple of interesting things I've come up with:

1. There is a strong association between MS and viral illnesses, particularly Epstein-Barr, a member of the herpes family. I contracted EPV in high school and was out of commission for months. Years later, crushing fatigue and malaise were written off by my physician as reactivation mono, not digging deeper to find the gold nugget of truth or even broaching the possibility that there could be something far more sinister at work.
   
2. There is a link between MS and vitamin B deficiencies, particularly B12. I was diagnosed with pernicious anemia at age 22 and have been self-injecting cyanocobalamin since 1995. In hindsight, this diagnosis is really quite absurd considering all the factors (young age, white race, NO family history). My doctor stated I was at risk for developing MS and SLE, something the other doctor ignored later while revisiting mono, but I had been advised all those years ago to be tested routinely. Testing doesn't always produce a diagnosis, though. There really is no 100% definitive test for entities classified as autoimmune dysfunction, only an educated guess based on constellation of symptoms and abnormal laboratory tests, and even then criteria must be met before a patient can receive a firm diagnosis (screw the 5% of MSers that have a NORMAL MRI scan or have only ONE lesion, treatment is REFUSED until you have an ABNORMAL scan showing AT LEAST TWO lesions, even if it means loss of vital functions that may have been preserved with treatment. This was my case, but.... I'M.NOT.BITTER.).
3. Pregnancy often induces MS into remission, but the mechanisms behind this are unclear, whether it be hormones (testing is underway with a specific estrogen receptor) or the fact that a woman's immune system is lowered during pregnancy, or ?????. That explains why I felt great for a couple of years, two back-to-back pregnancies, but then it kicked my ass even harder after my son was born. As disgusted as I am with you-know-who, during ovulation I feel an overwhelming urge for him to impregnate me. Killing two birds with one stone. Or three. Kicking the MS for a few months, satisfying my screaming uterus, and having a weewiddleone to cuddle and snuggle and teach and watch grow.... Call me crazy. I love new baby smell. Even poop.

Some weeks back, I got so pissed with Modern Medicine, I stopped my Copaxone injections. I figured "What's the point?" I was having - to date - my worst flare ever, worse than the original symptoms leading me to suspect MS and more disturbing than the optic neuritis-related flare I had last summer. So this shitty medicine that cost $1900 a month and which the manufacturer cannot even explain how it works (if it works) because they don't understand the chemical processes and which DOES NOT CURE the disease but only TRIES to reduce exacerbations does not seem to work for me. Tie into the fact that I believe wholeheartedly my NL has misdiagnosed me as RRMS when I more rightly fit PPMS, and the medication is not for those folks anyhow, so I didn't see where it mattered. And I was tired of the bruises.

I raided the vitamin store, based on what I found when reading. Everything from Omega 3-6-9 to vitamins of every letter of the alphabet, and everything in between. I jumped in with both feet and bought a basket full of goodies, a little worried in the back of my mind about starting so many new things at one time and *gasp* without the advice and recommendation of my physician! but saying FUCK IT out loud. I bought a 7-day pill minder, one of those M/N/E/B sorts. Then I sat down with a sheet of paper (no spreadsheet, har!har!) and devised my own treatment regimen.

DH's eyes about bugged out of his head and I heard him say "motherfucker" as I swallowed a handful of pills in one giant gulp. Four times a day. After a couple of weeks, I started getting some feeling back in my arms and legs. Another week, and I could move my flaccid right arm, even lift it over my head. Another, and the vision in my right eye went from a dark gray curtain shuttering my eyesight to a light gray fog that I could distinguish shapes AND COLORS within, something I have not been able to do for more than a year. Several weeks of intense vitamins, and I can now walk up and down the stairs without crawling, tap my feet to the music, and recently at my nephew's wedding reception even danced with DH when he asked me.

Where will my journey lead me? Who knows, but at least now I feel I will walk there instead of being pushed in a wheelchair.

To Flare Or Not To Flare

I love my neurologist dearly. She's one of only about 4 doctors I would (and have) trust with my life. But I think she's dead wrong on two counts:

1. She can't find any quick and SOLID proof that there is something else going on with me than just MS that is slowly but surely eating my life away from the inside out.
2. She's diagnosed me as remitting/relapsing MS even though I have never had any clear-cut "remission" of symptoms nor even any clear-cut "flares" for that matter, other than the bout of optic neuritis last summer.

Until now.

When the shit hit the fan with my body a couple of years ago, it started as a slight weakness in my right arm and leg. It was nothing that affected my life in any way, shape, or form other than being an irritation and a "subjective feeling" of being weak when my examination and testing routinely came back normal, with the exception of the times I've had "reactivation mono," which is essentially - and most people don't know this until they're afflicted - the Epstein-Barr virus you contracted in high school comes back to haunt you. There are markers in your blood that show you've had the virus, and some of those titers will never go away, ever, because you DID have it. Others of these markers go up and down, indicating a reactivation of the virus in your system.

**Quick aside here: It's fascinating to me that EBV has long been considered a culprit in the pathogenesis of MS, that it can reactivate at any time, particularly when ill or stressed, etc. (the exact same factors that can exacerbate an MS flare).

Anyhow, 1 year 11 months ago (dear Lord, has that much of my life been eaten up by this disease already???) I developed SUDDEN onset of PROFOUND weakness on my entire right side, which progressed over the next few days to include my entire left side and then started moving up to begin compromising not only my facial muscles - I developed facial droop highly suspicious for stroke or at least Bell's palsy and could neither eat nor drink for days, yet my doctor couldn't get me in any quicker than 2 weeks and ER doctors had previously dismissed me as a fake - and eventually my muscles of breathing and bowel and bladder function.

I was FUBAR'd for about a week and a half. Of course, by the time I got in to see my primary doctor, most of it had resolved except for the right-sided weakness, which was dismissed as "stress" and would best be treated under the care of a psychiatrist. (Yeah, she went there. And bought property. That's why I don't see their office anymore.) After that, I was pretty consistent until last July when the optic neuritis destroyed the vision in my right eye, eventually leading to my diagnosis of MS. All this time, though, I never had a "remission" as is defined by those who define such measures (usually for insurance billing purposes). After the optic neuritis, though, I started declining - gradually - and never having an acute "flare" (proven by MRI scans that no new active lesions were identified) but continuing to become progressively weaker and more fatigued and confused and depressed and at times maybe even clinically diagnosable as psychotic. But I was still classified as RRMS instead of - what in my opinion should be - secondary progressive MS or perhaps even primary progressive.

MS does not define me as a person, but it's a really big fucking irritation. I've tried to be all "yeah, whatever" about this whole thing, accepting and dealing with it and moving on with my life and all that happy horseshit. I ain't playing that game anymore, though. After only 23 short months, I am ready to take my marbles out of the circle and stop playing - and kick sand over the circle just because I'm pissed off about losing.

I had another of my epiphanies on life, the universe, and everything. It came yesterday, Saturday morning, after my dad came to my house to make sure I was up for work on time and found me on the floor of my office, unconscious and unresponsive. The pisser of it was, he actually walked in on the SECOND episode. I woke up around 7 a.m. with a massive Charley in my left calf that wouldn't let go and got up to put some Ben-Gay on my leg. As I was reaching up to put the tube back on top of my desk so the kids couldn't get it, I passed out and fell on the floor. I came to a little while later to my daughter sitting on the floor next to me, laying on my face and crying because I was someplace she knew I should not be and not responding. But I couldn't getup. Nothing worked right. I've been constantly dizzy (like 100% of the time, even moving my eyes in my head makes me keel over) for about a week now and even when I did finally get my arm and legs to obey in some fashion and tried to get up, the dizziness decided to call in unconsciousness for backup to keep me on the floor. Eventually I was able to speak and tell dad "no" when asked if I wanted an ambulance. He woke DH up, who saw me on the floor and started screaming, which scared my daughter even more, but he picked me - in all my bulk, even though I weigh as much as he does or more - off the floor.

I was fucked for the rest of the day. I'm still fucked. I always knew I was not long meant for this world, but I can say now that I see the end in sight and it really pisses me off. It pisses me off about losing and it pisses me off about giving up.

But maybe now someone (in the medical profession) will listen to me when I tell them something is wrong.

I Always Knew..... (Part II)

One of my spewings on another journal:

When I grow up, I'm going to be a doctor, and I'm going to take only cases of people written off as hypochondriacs, nutcases, or malingerers. I'm going to stir vigorously to see if that's really fruit lurking at the bottom of the yogurt cup. . . or a rat turd in disguise. I'll start by taking every minute detail of their histories, right down to the last sniffle, cough and wheeze, when and where and how and with whom they've inserted their various appendages or vice versa, and every medication (or miscellaneous object) ever stuffed into an orifice (or other route of entry). Then I'm going to think. . . . A lot. . . . I might even draw a flow chart, since I think they're cool. On a dry-erase board. With a lot of colored markers. I'll get to the root of the issue and find out if they really are whack jobs, hacks, or - GOOD GRIEF, HOW COULD THIS HAPPEN??? - someone who is actually sick but no one listens to because they're too busy looking at the hand extended for copayment.

I have a few theories about certain aspects of "modern medicine":

1. Many people in the profession don't have the balls to find and then present proof that someone is malingering, for fear of being sued. I, on the other hand, have HUGE balls, (metaphorically speaking). They are brass and I polish them regularly. I say, "Bring it on," knowing I will eventually drop their house of cards. Yes, it's a lot of work, but worth it in the end because it gives credence to and protects those who truly do suffer from whatever malady these boneheads have cooked up and pretend to have. Malingering is near the top of my list of evils perpetrated against society.

2. (This one makes a lot of people furious, but I can't help it, it's my opinion and mine alone and I don't ask you to share it, just respect me enough to listen to it, for mine eyes have seen WAY too much.) It is my position that 97% of so-called "mental illness" isn't illness at all and should NOT be treated as such. If it ain't organic (i.e., structural damage caused by defect or trauma, measurable biochemical response, etc.), then it ain't mental illness. There's an epidemic of "mental illness" in this country, with >25% of the adult US population diagnosed as mentally ill. People need to quit popping the psychocandy into their faces because all they're doing is altering their brains and intentionally creating that "biochemical response." The difference between illicit drugs (LSD, Ecstasy, meth) and legal psychiatric meds (including those shoveled into kids by the wheelbarrow for ADHD) is the method of production/packaging and who's pockets are being lined. They elicit virtually identical chemical responses in the brain, but Big Pharma's not getting their cut when dealers sell it cheaper.

3. Each person knows his or her own body better than anyone else ever could. After all, they're inside it every day and the best the rest of us can do is LOOK at it, maybe touch it. If it's not something obvious like a 12-inch gaping laceration or a gangrenous toe, we could miss it. If a person truly believes something is wrong, they're worth listening to.

This is the history of my favorite "hypothetical patient" (me) and analysis by my favorite "hypothetical medical practitioner" (also me, sans license and all) along with (paraphrased) responses from "actual hypothetical doctors."

1988: Epstein-Barr infection.

1990: "Idiopathic seizure disorder," petit mal seizures disappearing after a few months.

1992: Broadside auto accident with "minor trauma" to C-spine cord.

1994: Rollover auto accident with "minor trauma" to C-spine cord.

1995: Pernicious anemia after 5+ years of fatigue and sleeping spells diagnosed as everything from narcolepsy to CFS to stress of parenthood, begun on vitamin B12 injections (gradually going from working on a farm to being confined to a desk due to weakness and fatigue).

2002: "Idiopathic seizure disorder" revisited, grand mal seizures with alarming frequency and resistant to treatment but subsiding about a year later and not returning.

2003: Minor right arm and leg weakness pretty much ignored by everyone (myself included), felt related to C-spine.

2004: Progressively worsening but mostly irritating rather than havoc-wreaking right arm and leg weakness, MRI of the neck showing herniated disk and syringomyelia.

After that, it's all downhill. . .

August 2006: Sudden profound right arm and bilateral leg weakness, migrating to respiratory and facial muscles with lethargy, slurred speech, dysphagia, difficulty breathing, incontinence, spasticity, and immobility. Internist: "It's all in your head. You work too much, you have too much stress, and this job is giving you medical school-itis. Here's the name of a psychiatrist." "Are you listening? I want a neurologist, not a psychiatrist." "There's no indication for that." "That's nice, make the appointment anyhow."

November 2006: Neurologist: "Your brain MRI is clear. It's probably the syrinx. Here's the name of a neurosurgeon. Maybe it needs to be drained."

January 2007: Neurosurgeon: "You're faking. I can't help you. Go back to your doctor."

March 2007: "Look, I know there's something serious going on here and I need answers. I'm getting worse by the day and my kids feel like they're watching me die. I KNOW it's MS and I feel like I'm running in circles." Neurologist: "I doubt it's MS, since your MRI was clear. It could be muscular dystrophy or fibromyalgia. We'll do an EMG and send you to Cleveland Clinic."

June 2007: C.C. Specialist: "It's not muscular dystrophy. I suspect myasthenia gravis. Let's run some blood work and I want another MRI of your head and neck, and then you can follow up with your regular neurologist. She'll send you back here if needed."

July 2007: Sudden complete loss of vision in right eye. "It's optic neuritis. I've been telling doctor after doctor for months and months I believe it's MS but no one listens, and this is a cardinal sign." ER doctor: "Your CAT scan doesn't show anything acute and I don't see a reason on physical exam for your visual loss." "CT, especially without contrast, is not sensitive enough to pick up an MS plaque unless it's pretty damned BIG, so I don't know why you wasted my time doing it when you should have done an MRI. You're an asshole." "I'm sorry you feel that way, but as you know, I'm not a neurologist OR an ophthalmologist." Neurologist: "We'll get another MRI." "Fine, but I've also scheduled an appointment with an ophthalmologist on my own." "Good. Ask him to send me a report, and I'll give him a call." Ophthalmologist: "I see blurred disk margins on the right, which fits optic neuritis, and your latest MRI does show plaques consistent with demyelination, so you're probably right about the MS."

August 2007: Neurologist: "Yes, your MRI now shows plaques and when we compare your current study with the prior one, we can make out where some of these larger lesions were just beginning, but we need to run additional studies to confirm, visual evoked potentials and a lumbar puncture, before we can start you on medications."

November 2007: Neurologist: "Your lumbar puncture and VEP results were consistent with MS, so we can begin treatment."

My ON occurred in July with positive MRI findings but I was not given a "formal" diagnosis until November. I was denied any form of treatment those 5 months including for the acute episode and my symptoms continued to progress, relentlessly and more rapidly. I had no "remission." I had no "plateau." I had no "reversion to normal or near-normal function." I now live with permanent visual loss and hemiplegia. Had I been treated with a preventive such as Copaxone when I first suspected MS 16 months earlier, might some of my function and quality of life have been preserved? I believe it to be so. It seems wrong to force a patient to suffer "x" number of episodes or exhibit "x" number of lesions before allowing treatment. What about the 5% with MS who have a normal MRI scan? Do they just suck it up and live with the knowledge that they face possible permanent loss of function before they can get the treatment they need to try to slow their disease?

This is one of the things that turned me into an asshole: Knowing I had MS, told I was faking, written off as a psych case, ignored by those sworn to "first do no harm" yet led me to worsened disability by inaction. My nightmare is in the fact that it has happened before, diagnosed with pernicious anemia with critical levels but initially denied the therapy that ultimately saved my life because "we need to do more tests," leaving me with permanent CNS damage including neuropathy, possibly the seizure disorder, potentially even the MS that has claimed a portion of my life.

Over the course of 16 months, I deteriorated from an active mother of 6 working 120 hours a week to a bedridden lump. Other stressors heaped upon me during this time in a deliberate attempt to put me in a hole covered with 6 feet of dirt, by someone wanting to step into and take over the life I'd built for myself and my family, had me on the brink of emotional, spiritual, and physical collapse. Higher forces reached out and brought me back from the edge of that abyss, but I was drained and struggled through the next several months before finally being placed on Provigil, which has breathed new life into me and given me the strength to fight and win the battle against evil trying to destroy me. Again, why did I have to wait so long to get the medication I so desperately needed many months before? I have aspirations of becoming a physician assistant, and I will do everything I can to advocate for the best interests of my patients.

In the meantime, I read. Diseases like this were made for people like me, because we don't just lie down and accept it. I read everything I can and I think. I think about whether there is a correlation between some other event in my history, things that could have predisposed me to or triggered my eventual slide into MS. I've seen information about possible links between EBV and MS; for years my symptoms were routinely dismissed as "reactivation mono" when they could have, in fact, been early progression into MS. I've read about MS'ers often suffering from vitamin B deficiencies and wonder if mine is a factor (besides B12, I have B6 recently discovered). Could the trauma to my spinal cord that led to my syrinx also have triggered the development of lesions, spurring my immune system to attack?

I wonder.

I wonder.

I wonder.

I am seeking the answer, and I know that someday I will find it.

I Always Knew..... (Part I)

Diseases like multiple sclerosis (MS) were made for people like me.

Since I received my formal diagnosis in November of 2007 - 15+ months after the acute onset of profound right-sided upper and lower extremity weakness and debilitating fatigue that has not subsided since August of 2006 even after having gone into "remission," (full or partial recovery of "deficits acquired during the relapse") and 4 months after a bout of optic neuritis leaving me with residual near-blindness in my right eye, a constellation of symptoms that should have diagnosed me immediately but for "protocols" in the medical establishment - I have continued my search for answers. The question was never "Why me?" I already know the answer to that: Diseases like this were made for people like me. We don't give up. We find answers. We challenge the complacency and the COMPLICITY of an establishment that has willfully (and mayhap maliciously) chosen to relegate us to the annals of medical obscurity because it's not pandemic, it's not seminal, it's not a major-league hitter like diabetes or cancer, and worst of all.... it's not a money generator. It's a relatively rare condition that follows no predictable course and has no foregone outcome. At best, it's a curiosity, to be poked at with a bendy-straw from time to time because there's not enough money behind those doing the poking to buy a cattle prod.

I know I am not alone in my quest for answers:



You might ask, "What, exactly, IS the question to which I need an answer?" To be quite honest, I'm not really certain; but what started as a nebulous splotch in the middle of my psyche began spreading and finally coagulating, forming a scab to be picked at to make it start bleeding again.

I love to read. I read everything I can get my hands on (again, with the exception of romance novels.... good for nothing more than toilet paper or campfire starter). I love to think, reason, suggest and analyze and reject and counter-suggest, arguing with myself in a way.

I was begun on Copaxone in November of 2007, after I finally got my hard-fought diagnosis. It was so hard because I couldn't get anyone to listen. I was told I was stressed, it was all in my head, I needed a psychiatrist. I was told I was faking. I was told it was bad karma. My own persistence, my internal drive to not lie down and accept candy-coated bullshit at the price of $20 a whack (my office visit co-pay), my frank will to prove I was neither a nutcase nor a malingerer, and above all my maternal instinct, would not allow me to stop seeking the answers I needed and, in the process, finding out what the actual question is.

Deep Thought: I think the problem such as it was, was too broadly based. You never actually stated what the question was.

Now, I certainly don't intend to ponder 7-1/2 million years to get my answer (I don't think it's 42), and I most definitely will not be waiting another 8 million years to find out the actual question. Much like Ms. Elaine, I will be picking at that scab, lest it heal over and fall off, to be forgotten with nothing more than a tiny scar.

I am not a scar.

It's Called "Population Control," People

People with serious diseases are finding themselves getting handed the shitty end of the stick when it comes to insurance copays on their medications. The medication costs can be enormous, and the insurer wants the insured to foot a bigger portion of the bill than their previous traditional copays of $10, $20, whatever, to 20% to 33%. The list of diseases in this article just happens to include multiple sclerosis, which you all know is my newfound "friend." These people with severe and chronic illnesses are the ones least likely to be working and earning an income in the first place, so let's sockittoem.

In terms of cold hard cash: The Copaxone injections I use for my MS cost $1740.13 for a 30-day supply, of which I pay a $40 copay. Under this "tiered" system, I would pay anywhere between $348.03 and $574.24 a month for my medication. This is an 870% to 1435% increase in my out-of-pocket cost just for the medication. This does not include the cost my employer and I fork over to the insurer in the first place just to have coverage, said cost having increased many-fold since I started working at the company a mere 7 years ago. Also keep in mind: This is not a medication to CURE my disease, merely to "try" to prevent acute exacerbations. This makes just so much sense, really. They'll NOT pay for medication to try to PREVENT an exacerbation, but they'll cover the much larger bills associated with hospitalization and testing and inpatient medications administered, etc., for an acute exacerbation. Yeah. Kind of like not paying for birth control or abortion but paying for prenatal care, labor and delivery, and then yet another child that will be covered on the policy.

So my choices are:
1. Fork over the cash (which is almost a whole week's pay) to get the medication to try to keep from getting worse and ending up on permanent disability, foregoing those pesky incidental expenses like rent, groceries, and electricity. I'll be living in a box on the street, but at least I'll have my medication!
2. Use my cash to pay for those pesky incidental expenses (above) and stop taking the medication, progressing in my disease process until I "expire." (That means "DIE" for those of you who don't know that medical term that bothers me for some reason, like we have a fucking date stamped on our butt cheek like a gallon of milk.)

I'm not wealthy. I can't afford to buy these medications. So I will just have to suck it up, accept the fact that I am poor and destined to die quicker than a wealthy individual who has the money to buy them to prolong not just their life, but their QUALITY of life.

That's why it's called population control. I've seen it for years, known it was happening and tried spreading the word but just being called a fruitcake or conspiracy theorist for my efforts. I've seen a young woman die of a completely treatable cancer just because of her insurance carrier's "policies." I've seen another woman beg and plead for money to abort a deformed fetus that would not survive delivery and likely would have killed the mother during said delivery, because Medicaid, her only healthcare coverage, would not pay for it: Two birds with one stone?

Post #299 - Now if THIS Ain't a Load of Shit

I'm a caffeine drinker. I can't stand coffee, but I've been known to polish off between one and two 2-liter bottles of Mountain Dew a day. A DAY, PEOPLE. That's a lot of fucking caffeine. I should piss, shit, and BLEED neon yellow, I drink so much of it. I buy it 4 crates at a time (you know the blue crates Pepsi ships bottles in, 8 per crate???). I have to write Dew purchases into my monthly budget, to make sure I have enough to supply my habit. I don't bother with a glass, drinking directly from the mouth of that 2-liter bottle. I am a Dew addict. I need my fix. I didn't even curb my habit while pregnant with each and every one of my kids, and they should also shit, piss, and BLEED neon yellow after 9 months of continuous Dew infusion via umbilical cord. My kids are all above average in intelligence, motivated, and of the type to take a leadership role rather than that of a sheeple. I owe it all to the Dew. Look at that: Even my fucking CAT is addicted to this stuff.

Then along comes this study, claiming "Caffeine could protect against multiple sclerosis," which I would have to say based on my own real-life personal experience spanning 35 years , is a load of shit. I AM caffeine, I have been for years, and I still developed MS and it's still progressing. Give me some GOOD news, and let me know when you've really got something worthwhile, eh?

Researchers at Cornell University showed that giving mice the equivalent of six to eight cups of coffee a day protected them against experimental autoimmune encephalomyelitis (EAE), the animal model of MS. . .
Initial studies led the researchers to discover that mice lacking CD73, the enzyme necessary for synthesizing extracellular adenosine, were protected from developing the mouse form of MS (experimental autoimmune encephalomyelitis or EAE). Subsequent studies dealing with immune cells from such mice made them believe that normal CD73's ability to synthesize extracellular adenosine governed the development and progression of the MS-like disease.
Though this discovery did help the researchers to explain the presence of adenosine near the cells, but they were unaware of the mechanism that made the compound enter into the CNS cells. As adenosine is supposed to bind to its receptor in order to affect a cell, the researchers thought that adenosine receptor activation would have allowed for entry of immune cells into the brain and spinal cord and thus they turned to caffeine.
Caffeine's stimulatory effects on the CNS are mainly due to its ability to bind to the same receptors as adenosine, thus blocking adenosine's ability to affect CNS cells. When mice consumed caffeine in their drinking water, they were protected against development of EAE, the MS model.
Thus it was concluded that CD73 and adenosine receptor signalling are required for the efficient entry of immune cells into the CNS during the initiation and progression of EAE in mice and, quite possibly, during the development of MS in humans.

Finally. . . Rest for the Weary?

Saw my NL today, and boy am I glad I did. I love my neurologist. She's my favorite medical professional in the whole wide world and one of the few I would actually trust with my life. That number can be counted on my fingers with a few left over.

Last time I'd seen her back in January, we talked about burning pain in my muscles, worse in my shoulder girdle muscles, upper arms, back and neck but really in all the large muscle groups throughout my body, the same pain that put fibromyalgia into the differential before I developed optic neuritis and finally demyelinating plaques on my brain MRI, and hence, the MS diagnosis. She considered trying me on Lyrica at that time but opted to place me on Lexapro instead, since my "depression" (I've never been clinically diagnosed as having depressive disorder but was suffering from "situational depression") was causing my overall MS symptoms to worsen. I ended up taking exactly 3 days of the Lexapro and decided it wasn't for me: It made me so fatigued I could not function. It made me dizzy and nauseous and (even though it's supposed to be for treatment of depression) MORE depressed. That was enough for me. Ever since then, I haven't been able to shake this fatigue that puts me down for days at a time. She gave me the Lyrica today, so we'll see how that works out. She thinks it might also help with my migraines, which would be AWESOME. She also started me on Provigil today, to try to help with the fatigue, which she said was probably a symptom of the MS as well. I took one earlier today and I feel pretty fucking good, haven't looked wistfully at my bed for hours. . .

A lousy 3 months, and my health has definitely changed, some things better and some much, much worse. My "Health Shit Lists":

Positive Shit: I no longer feel depressed, and that's definitely a big fat plus. Unfortunately, that's about the only one I can come up with right now.

Negative Shit:

1. My pain has progressed to the point of affecting my quality of life, a my-body-is-on-fire-from-the-inside-out kind of pain. I bought some Ben Gay-smelling patches and wallpapered myself with them (not really, but it's a great mental picture, ain't it?). Please let the Lyrica work, since I'm allergic to Neurontin. . .
   
2. The vision in my right eye comes and goes, anywhere from about one-quarter to near-complete visual field loss, rapid fluctuations causing dizziness, inability to focus, or just plain not seeing shit and running into things. Thank goodness for drywall corner bead, or there'd be broken corners all over the house instead of black and blue marks all over my arms, legs, and head.
   
3. I can't remember things for more than a few minutes or sometimes even a few seconds unless I write them down, and there have been times I've forgotten what the fuck I was going to write before I even touched pen to paper.
4. My right arm is mostly useless and my right leg isn't far behind in function, affecting my ability to walk and my ability to communicate effectively with my family, who use sign language. This also makes for an interesting trip to the bathroom, which is upstairs, adding to my collection of colorful bruises.
   
5. I have just been found to have gallstones and seeing the surgeon (one of those few precious individuals above, heh heh) next week. In a way, I guess this could be on the Positive Shit list since it's relatively easily taken care of.
   
6. My bowels are disregulated due to MS. I either shit rocks (boulders and/or gravel) or I shit water. There is no in-between. I thought IBS was bad, but this takes the cake.
   
7. I am fatigued to the point of slumping over asleep in my chair for no apparent reason, even after TWELVE FUCKING HOURS OF SLEEP. The last time that happened, my (former) doctor kept barking NARCOLEPSY. He proved himself to be full of shit when he discovered it was pernicious anemia, NOT narcolepsy. My B12 levels are fine, so that's not it this time.
8. No one has any explanation for why my hair is falling out by the handful, my skin is turning to scales, and I've lost my "color." Once upon a time, I had beautiful honey golden skin, soft and smooth as a baby's, and a big thick ponytail. Then one year I turned green. GREEN-GREEN, like a fucking booger some kid just hooked out of his nose. After a couple of years, I was just white. Over time I've gotten more and more white, to the point people would ask how my moon tan was coming along. Now, I'm ready to just shave off what's left of my hair and scrub myself with a wire brush.
   

All in all, it was a productive day. I learned that my symptoms are part of the MS disease process and can come on at any time, or not, since each person's course is different from the next, and that progression to these symptoms is not necessarily an exacerbation. My January MRI was stable from the prior one, so for now it appears the Copaxone is doing its job. Now someone just needs to get to inventing a once-a-week or once-a-month injection instead of EVERY SINGLE DAY injection. Pills would be good, too.

The Pincushion Look

My latest fashion statement is what I will call The Pincushion Look. I predict that it's going to be all the rage and particularly "sexy" come summertime when I wear shorts and everyone can see the remnants of my last 6 weeks' worth of Copaxone injections tattooed on my thighs. I bruise easily to begin with, and each subcutaneous injection leaves a nifty welt and a circular 2-inch purple-black bruise, which stays for weeks, even with rotation of injection sites to different areas of the body and rotation of specific sites at each location.

Just lovely. *This is me being facetious.*

I also have them on my upper arms, hips, and belly, but I won't subject any poor individual to the sight of my belly or hips - not even my poor husband has to suffer that trauma against his will. Thankfully, he's about blind without his glasses.

I'm tired of this disease and I'm ready to trade it in, ask for a refund, whatever. It's bad enough having gone slightly demented, blind in one eye, and hemiparetic from this shit, now I have to look at nasty blotchy bruises for the rest of my life. Someone needs to move their ass on finding a cure, already, cuz I don't think I can handle injecting myself for the rest of my life, however long that might be. The whole thing is just interfering with my life, and it's not something that can be "ignored" like my gallstones. And I don't just want something to HALT the progress of the MS, or "attempt to reduce the frequency of exacerbations," I want a CURE - I want restoration of my fucking ARM and my fucking EYE and my ABILITY TO DO MATH.

Yes, I'm in a kind of pissy mood right now.

Someone's Been Shitting in My Gene Pool

Oh, how I wish I could twiddle my thumbs as I while away the time, waiting for God to come and collect me from Unclaimed Baggage. Something tells me He's busy and I've got a while to wait my turn. Like they say, wish in one hand . . .

I was out of my booger mood briefly. For all of about 10 minutes or so. Too bad you missed it. I was getting ready to crack open a fresh bottle of Dew and the Cheetos so we could have a party, but then that big-green-sticky-booger mood came back. As I'm not a professional booger-picker or a booger-picker of any sort for that matter, I just don't have the skill to pick it and flick it so it doesn't come back and stick. Yet another of life's lessons I've failed to learn, I guess. I think it must be like learning not to piss into the wind, but I'm not equipped to do that anyhow.

On to the "good" news. In the past couple months and particularly the past week, I've:

• For the second time lost about 1/3 to 1/2 of my right eye visual field that had finally mostly come back after a bout of optic neuritis I got as a Fourth of July surprise. Attacks of O.N. can leave residual visual loss, so I'm not anticipating much of it to return this time around, based on the prior 25% residual loss I already had. Seeing's overrated anyhow.
  
• I'm down to maybe (if I'm lucky) 10% functionality with my right arm and 50% with my right leg. It's just too bad I'm right-hand dominant and that I actually like to WALK. On a positive note, I'm learning to eat without the use of my hands. Dogs have it made, you know, and straws CAN be your friend. I want a motorized scooter like I "seen" on TV.
  
• My left arm has now become affected by weakness to the point that I had to ask my husband to comb my fucking hair (which is coming out by the double handfuls now) and I've developed a tremor. This is really putting a damper on my cigarette smoking habit, but I'm highly adaptable and will find a way to light those little bastards up one way or the other.
  
• I'm constantly dizzy and lightheaded to the point of nearly collapsing and falling down the stairs on the way to take a shit, yet another function which tends to be impaired when one suffers from MS. I guess I should have read the fine print, that ALL nerve/muscle function can be impaired, including those regulating the digestive tract. Wonder how long until I start pissing myself?
  
• I've had a headache out of the ordinary from my usual migraines for about the past 2 months that I can't even take the edge off with Excedrin - and I can't use anything more powerful because I'm intolerant to most analgesics. Although, I imagine projectile vomiting might take my mind off my headache for a while. Then maybe I can have a movie star career like what's-her-face that had the spinning head and puking on the priest. I don't know any priests, though, so I can't practice.
  
• I'm suffering from confusion and disorientation, which I had not had a problem with before but I think are part of the MS process, and night terrors, which I KNOW are from the trauma being inflicted upon me by Big Brother these past 4 months. I'm just shocked it took that long to catch up to me. After all, it only took about 2 weeks for me to be unable to leave my rooms in my house.
• I have these odd joint pains (? where'd they come from?) not just in my large joints but in the small joints of my fingers and toes. It wouldn't bug me so much but I TYPE FOR A LIVING, AND THAT'S KIND OF HARD TO DO NOW.
  

I'm a fucking wreck. I've been on this Copaxone for nearly 2 months and it's function is supposed to be to reduce exacerbations in severity and frequency, but I am getting worse even while on it, so my next question is: WHY THE FUCK AM I POKING HOLES IN MYSELF EVERY DAY WHEN IT'S DOING NO GOOD?

I think someone must have taken a shit in my gene pool, cuz there's no reason for me to be this fucked up. It doesn't make any sense, though, since everyone else in the family, for generations back, has been relatively healthy except for the cancer that seems to kill them off in their 40s and 50s. Not one of them had any of this other off-the-wall shit like I've gotten. So where'd it come from?

I Think I Hate Wednesday

It's hump day, right? It would be all well and good if I worked a regular 5-day week but I'm on a cycle where I'm at the end of a 10-day stretch for my main job. Now, I work other jobs that have me working every day anyhow, but it's mostly just a mental thing for me with this: TEN DAYS IN A ROW. I can't explain it. I do think it's completely awesome that when I'm on this cycle I get a 4-day weekend, even though my other jobs get in the way of enjoying that, too! Just kidding. I think it's just easier to break things down by bits: 5 days (Monday through Friday) and 2 days (Saturday and Sunday) instead of 10 days and 4 days. Maybe I'm just weird. (Yes, I know I am, you don't need to point that out.)

**SIGH**

Tomorrow I get my teeth. In a way I'm excited since I've been a year and a half with no gompers and will once again be able to eat things that don't just get swallowed. The bad part is the fact that I'm a gagger. When I had the original molds done, I puked all over the place. When I had the wax liners adjusted, I gagged and puked. When they did the final adjustment before casting the actual dentures, I gagged and puked. I know part of it was the SMELL (that wax doesn't smell pretty) and the actual teeth won't stink like that, but most of it is just the fact that I gag - period. I put food in my mouth, I gag. I put liquid in my mouth, I gag. Wind blows in my face, I gag. This ought to be fun.

Today I ordered my refill on my Copaxone. I get it through a mail order pharmacy due to my insurance, which is fine by me since they deliver it right to my door and it still costs me $40 copay anyhow. The guy on the other end of the line was very helpful. And very funny, which I really need right now. I already owed $40 for the last prescription and now I was going to owe another $40 so asked if I could just send a check for the full amount even though I didn't owe that much yet. "No problem. Do you have a check number?" Um, yeah. I'm digging around on my desk for the checkbook and keep babbling. "I think my husband has it. Hold on. . . No, he says he gave it to me, but I don't see it here. I think he's giving me a line." "Yes, he is, and we do that on purpose. I gave it to you, you gave it to me." I pause for about half a nanosecond. "I KNEW that was a man thing." "Yes, yes it is" he tells me. I still can't find the fucking checkbook, which hubby-man says he put on my desk. "You know, as soon as I'm not looking, he's going to sneak in here and put it on the desk and tell me it was there all along." "Yes, he will do that, too, and that is also a man thing" he says. Finally I just got a new book of checks and gave him a number, and it was well and good. As we were getting ready to hang up, I told the guy at the pharmacy, "You know I'm going to blog about this, don't you?" He laughed and said "Of course, but you know my name is JACK, right?" We both laugh and I shoot off "Suuuuuure, except for you already told me your name was Chris when you answered the phone." (These aren't actual quotes, just from my memory, in quotations to indicate DIALOGUE, okay?)

Hats off to you, Chris, for making my day a little brighter. We need more people in customer service departments who actually HELP their customers instead of speaking in tongues and cursing us out - you went the extra mile and made the difference.

PS: I only have a $40/month copay on this medicine, but in looking at the invoice I see that it is actually over $1740/month for this stuff. Good grief! No wonder no one can afford health care.

Week 2 of Copaxone Injections

Giving myself a shot every day isn't as bad as some people might think it would be. In fact, the shot itself doesn't hurt at all. It's just this itty-bitty needle that gives a subcutaneous injection, not a large-bore IV or blood-drawing needle like you see in the hospital or laboratory. Just a little pick, not even as bad as a mosquito bite, since it's just going a short way under the skin and not into the muscle or into a vessel. I also have a nifty device to load the syringes into to give the shot so I don't even have to "stab" myself like I do with my vitamin B12 injections.

That shit BURNS about 30 seconds after it's in, though, but that's also short lived.

These injections, given every day, have to be rotated over injection sites, using each site only once per week: One on the back of each upper arm, one on the top of each thigh, one on each hip, and the last one around the bottom of the belly, 7 all together. I've been doing those B12 injections every month for years, and needles don't bother me, so poking my arms and legs was no issue. Even shots in my hips don't bug me since that's where they inject Rhogam, and I've had many of those over the years with my A negative blood type.

My issue was The Stomach. How can diabetics give themselves injections there all the time? I was just gooey-headed thinking about it. The nurse who came to train me to use the injection device said "Oh, that will be your favorite spot." I'm just thinking to myself, "Yeah, right. Who you trying to fool, lady?" She wanted me to give my first injection there in her presence, since I thought it would be the hardest mentally, though not hardest physically. Sorry, lady, no human being needs to be subjected to the sight of my belly voluntarily. I used the back of my left arm, since that was the spot that's physically hardest for me to reach. She seemed satisfied.

Obviously, since I've started week 2, I got over myself and used that site already. I sat there for a minute, looking at my great blob of fish-belly white belly, and finally just did it. Know what? I think it's going to be my favorite spot. It's easy to see, easy to access with either my right (which doesn't work well anymore) or left (I'm NOT left handed) hands, and it's just EZ-PZ. I wish I could give ALL of them there, since the back of my left arm and right hip are hard for me to do with my weak right side, even with that doodad.

Hubby-man was somewhat confused about the reason WHY I am taking this medication (he didn't come in with me to talk with my NL, stayed in the waiting room). He asked when I was going to get better (get my eye, arm and legs back to working normally). He seemed pretty disappointed to learn that the medication won't restore my function and "fix" what's already been broken. No medication can do that - YET. This is just something to keep the MS from getting worse. I can live with that - for now. Someday there will be more, if not in this life then in the Eternal Life beyond.

Yes, I'm feeling better today, but I don't expect to get out of this particular funk until well after the holiday season. I'll be OK, though, with you by my side and God there to pick me up when I fall, carry me when I feel I can't go on, and dance with me when the time is right.

Happy Friggin Birthday, Beyotch

What a way to celebrate my 35th. . . I mean 19TH. . . birthday. Instead of sleeping in, I got up bright and early to go to the dentist to be traumatized with plates and molds for a denture fitting, only to be told I need a left anterior maxillary alveoplasty and frenectomy before I can actually get my REAL teeth, so I've ordered a $740 pair of "interim" dentures, which should last about a year while I save up the other almost $2000 for the real ones. (YES, I have no teeth, thanks to a combination of heredity and MOUNTAIN DEW CONSUMPTION--don't let them fool you that oral hygiene makes all the difference cuz I brushed and flossed every day and still lost them, just like my momma and her momma and her momma before her--sometimes shit just happens, and I wasn't about to give up my Dew knowing they were gonna fall out eventually).

Later, I was talking to the lady at Shared Solutions about insurance benefits for my Copaxone injections and the phone went dead. I tried to grab the other handset before I lost the connection but it was gone. I beeped it and ran through the house looking for it. I could hear it but couldn't find the stupid thing. Eventually I found it under the bed. I should have known, that's where the phone belongs. Of course, the connection was gone. After I called her back and finished the conversation, I called up my old boss I've kept in touch with and letting her know about finally getting my diagnosis and, of course, my dental office trauma. Then THAT handset went dead. I was out of options, since the cell phone was also dead and charging. I don't need to talk on the phone anyhow.

I got a birthday card from my boss at the hospital, a happy birthday message from one of the other ladies in my department (there are 10 of us, including my boss), a happy birthday from the dentist and from the lady at Shared Solutions, and I'm still waiting for MY OWN DEAR HUSBAND to remember that today is something more than the opening day of deer hunting season and to bark at me about making sure I pay the electric bill (I didn't let the damn thing go up to $700 on my own, but he fails to take that into consideration, along with the fact that they didn't send us a bill for months when they changed our meter over then smacked us with a big-assed bill all at once). He'll get around to it, eventually, but I'd really like him to start the MORNING off with it instead of waiting until the end of the day.

Other than that, it's just a normal, regular day.

And what the hell is a frenectomy anyhow, you ask? Go read about it (mine's gonna be a "labial frenectomy," on the top.

135 Days

It's been 135 days since the doctor's office visit that changed my life, the day I was informed my MRI scan showed brain lesions "consistent with multiple sclerosis." So 135 days, innumerable blood tests, 1 EMG, 1 swallowing function study, 1 lumbar puncture, and 1 visual evoked potential test later, I have finally gotten an "official" diagnosis: Yep, it's MS. Good thing to know it's all in my head and I just need to see a psychiatrist like I was told when my symptoms first came on.

There is no cure for multiple sclerosis. It's been studied for years and although more is known about it than ever before, no one knows what actually causes it--and, IMO, knowing what causes a disease is the first step towards finding a cure. BUT. . . there is treatment available to try to halt the progression of MS. This treatment will not repair the damage already there and will not give me back the use of my right arm and leg, but hopefully I won't lose the use of my left arm and leg and muscles of breathing any time soon.

Soon I will be starting Copaxone therapy. This is a daily injection given to try to prevent new lesions from occurring and to reduce flare-ups, worsening of symptoms or development of new symptoms. So just remember, if you don't come and visit me once in a while, every day when I am giving myself a shot, I will picture YOUR ass on the receiving end instead of my own. :)

Connecting

I started out this blog as a sort of catharsis, verbal diarrhea if you will, to get stuff out of the cesspool of stuff clogging up my mind. I didn't really expect people to read it, let alone have people come back and read it regularly and ASK FOR MORE. I admit to a great deal of pleasure knowing there really are people out there who want to hear what I have to say, whether it be profound and earth shattering, gut-wrenchingly and heartbreakingly sad, ROFL kind of funny, or just regular run-of-the-mill bitching. I also didn't expect to connect with other people but am very proud of the fact that I have made some great new friends. I dearly love visiting their blogs and seeing what they have to say, whether it be profound and earth shattering, gut-wrenchingly and heartbreakingly sad, ROFL kind of funny, or just regular run-of-the-mill bitching. My really bad habits, though, are 1) I don't always respond to comments left here, and 2) I tend to be a lurker at other people's sites, gobbling down what they say and rarely leaving comments for them. Sorry about this, but I can't help myself. Between work and kids and hubby-man and my own bodily "crap" that I'm dealing with and stretching my poor over-worked brain around everything, some days it's all I can do just to get out of bed.

I seem to have bungled up the phases of grief regarding my MRI. This isn't really surprising, considering how contrary and against the grain my personality can be been anyhow. I skipped right over shock and denial (I already knew something was up and the doctors just thought I was a flake, a liar, a hypochondriac, a worry-monger, or some combination of all of these). Who needs shock and denial anyhow? I'm sure that since I neglected them, they'll be back to bite me in the leg later on. I immediately jumped to acceptance, the final phase of the grieving process, so I'm once again proving how much of an asshole I can be. I'm now battling a mishmash of others, all at once: Bargaining, guilt, and depression. I don't need anger, since there's already enough in the world to piss me off and my body doesn't need to be one of them. Like Billy Crystal's character says in Analyze That, "it's a process." Unfortunately, I don't always follow directions well, so that's probably why I've gone about it all half-assed.

It takes so much effort to be an asshole, I'm thinking maybe I need a new hobby. So, I think once a week, on a specific day, I should post about a site I like and let you know about it so you can check it out yourselves. I'm sure there's a term for this (not just adding to blogroll, and not writing a review, either), but since I was out today in the heat picking blueberries (yeah, really intelligent, I know) and seem to be suffering sun-induced dementia, I'm sure you'll forgive me (or at least let me know what it is so I don't sound so ignorant).

I have the attention span of a dill pickle right now, so after just a few short months I've become bored with actually writing a blog but don't want you to forget about me. For some strange reason, though, I can sit and read other people's stuff for hours on end. I think that's also part of my job description as an asshole, being so bass-ackwards, but I have to check the manual to be sure.

I'm rambling now.

A New Chapter in My Life

Sixteen years ago I started a new chapter in my life with the birth of my oldest son. Over the years it has been added to and the outcome of the story rewritten with the births of 3 more children, the loss of 3 pregnancies, and the bringing of my stepchildren into my life. Other chapters unfolded alongside this one, all penned carefully in the tedious manner of my perfectionism, detailing various jobs, the love and loss of my mother, the coming and going of friends, and the final acceptance of myself as being who I really am and not who everyone else thought I should be. The story could have gone on in this manner for years, adding more and more, all the way to an "and they all lived happily ever after" ending in the book of my life.

Today I closed that chapter and opened a new one, since that life was shattered and no longer existed. The uncertainty of the outcome of this new story lurks in the lower recesses of my psyche and threatens the sanctity of the first in the face of a seemingly more menacing future.

This story begins July 30, 2007.

I received the results of my most recent MRI scan today, beginning my new tale. No one can really say how the story will end.

IMPRESSION: At least two areas of abnormality in FLAIR signal situated in the periventricular white matter on the right side, in the parietal and occipital regions, demonstrating no significant enhancement after contrast and having a nonspecific appearance and can be seen with multiple sclerosis in an appropriate clinical situation.

After being told "it's all in your head, you need to see a psychiatrist," 12 months after the onset of my symptoms I find out that it really IS all in my head - just not in the way it was attempted to be forced on me back then.

This is why it is so important for each of us to be aware of our own bodies; and if we think something is wrong, we need to pursue it to its conclusion and not just accept the word of someone who can never walk in our shoes. Had I just nodded my head and played the game according to their rules instead of my own, taking that referral to a psychiatrist, I would never had made it this far in this misadventure.

I'm not dead yet and I don't plan on giving up easily or lying down without a fight. I WILL win, you wait and see. I will use my pen and all the gifts endowed upon me by the Lord to rewrite this chapter to that happily-ever-after ending, not only for my own sake but for my children's. This iceberg has a long journey ahead in the warm ocean currents before melting away, but I know I will not be forgotten - I will live on, like the berg that took down the Titanic.

Well, I Told You So

Saw my neurologist (NL) today, who’s a lovely lady and one of my favorite people even though she charges me $20 a pop to tell me she can’t figure out what’s up. So after I hand over my $20 to get through the Ring of Fire door between the waiting room and the back part of the office, I get my turn in an exam room. I’m sitting there in my chair waiting and can’t help but notice it’s right next to the ventilation duct. And the man and the lady 4 rooms down are having their visit with the doctor. And I can hear every word they’re saying.

So much for patient confidentiality. Who’s on the other end of the duct listening to me bitch and moan? Thank God it’s a neurologist office and not a gynecologist, or they’d have to listen to me gripe about my periods and cry because we might have to think about yet another round of infertility treatment if we really decide to do this thing, and most of all hear the bitterness in my voice and how upset I am from the stress that was with 99.99% certainty the cause of my miscarriage a few months ago.

Anyhow. The NL at Cleveland Clinic assured me she would send a follow-up note to my NL about what she wanted done after my visit down there and, of course, did not do it. So my NL has to go on what I tell her the other doctor said: “Another MRI of the cervical spine to monitor the syringomyelia, particular attention looking for T1 hypointensity (say that one really fast 3 times, I dare you!) and if that is present, CSF studies to rule out spinal cord inflammation.” She says, “Of course.” I guess all those years as a transcriptionist have finally paid off, with my attention to detail and my knowledge of terminology. I can recite this crap but don’t ask me what it means because you’ll get a blank stare and possibly some drool.

Then we talk about my visual field deficits and the fact that I went to the ER and they said there was nothing wrong. I know, and she knows I know, that a CT scan without contrast is not really going to show much unless it’s something HUGE like a large tumor or bleed (thank you again, Transcription). So besides another MRI on my neck, I get to have another MRI on my head to look for those demyelinating plaques again.

Of course, after I get those done, plus a swallowing study that the Cleveland NL wants done, I get to go back to her office for another visit (another $20 copay). She was pretty pleased, though, that I’d had the foresight to schedule an appointment on my own with an ophthalmologist and that it’s tomorrow.

Not only do I have a headache, now I have a pain in my ass.

Important Lesson

No one knows our bodies better than each person themselves. The most important lesson to learn and live by is, if you know in your heart-of-hearts that something is wrong, do not give up searching until you find the answer. There IS an answer out there, but sometimes it takes a while to find if it is not staring you right in the face.

I saw the ophthalmologist today, and that was $20 actually well spent. I finally have PART of an answer: I have inflammation of the optic nerve, potentially optic neuritis, which was what I suspected from the start. I have another MRI coming up so hopefully will get the rest of the puzzle pieces soon. I don’t particularly care for the picture forming with those puzzle pieces, but having a complete picture will be a lot easier to live with, deal with, and help me move on with my life.

Can you feel my sense of relief, like a 10,000-pound weight being lifted from my broad but tired shoulders?

My Change of Heart

In dealing with members of the medical community over the past 11 months, I have had a change of heart. I no longer want to be a Physician Assistant. I do not feel I can become a member of this community with any of the positive feelings I once had for the profession and that of its parent profession, the physician. I cannot put myself into a position of demanding respect when I have so little for some of those who have "touched my life" in recent months. It was difficult coming to this decision but something I think is for the best in the long run. I love to buck the system, be radical and try to effect positive changes in ANY system I think needs improvement, but I just don't have enough energy, willpower, or fight left in me for this particular battle.

I had actually been pondering this for a while now, but it was cemented after a visit to the emergency room in the wee hours this morning. After losing a significant portion of my field of vision in my right eye with painful eye movements, vertigo, nausea, vomiting, and a catastrophic headache, a handful of basic tests were performed and I was told there was nothing "severe" wrong with me.

Your diagnosis: You have a headache. Yes, that is exactly what my discharge paperwork says. I probably would never have figured that out on my own and I have been gobbling down 4000 mg of acetaminophen a day as a dietary supplement.

Return if you have a significant change or worsening of symptoms. Why? So you can charge me some more money to tell me again that there is nothing wrong with me? No thanks. I came to you once because of "a significant change or worsening of symptoms" and you did nothing the first time; do you honestly think I am stupid enough to fall for that one twice?

Please contact your primary care provider for further follow-up. It is a vicious circle:

• Copay $20 to internal medicine/PA: "I don't know what the problem is, let's run some tests and you have to come back in a couple of weeks."
• Copay $20 to internal medicine/PA (two weeks later): It's all in your head, you need to see a psychiatrist." (I ranted about this one before.)
  
• Copay $20 to neurologist (six weeks later): "Let's run some more tests."
• Copay $20 to neurologist (two weeks later): "You have a syrinx but it's small and shouldn't be causing your symptoms. Let's run some more tests and send you to a neurosurgeon."
• Copay $20 to neurosurgeon: "Your syrinx is too small to operate, we just need to monitor it and can do surgery when it's larger. Go back and see your neurologist."
  
• Copay $20 to family practice physician to become established in his practice: "Let's see what the neurologist says."
• Copay $20 to neurologist: "Let's send you to Cleveland Clinic."
• Copay $20 to specialist neurologist at Cleveland: "We don't know what's causing your problem, let's run some more tests and then you can follow up with your local neurologist."

That next appointment with my neurologist is 3 weeks away, and the tests recommended by the specialist will not be ordered BEFORE that appointment, so there is another $20 copay for that visit and then another $20 copay for a second to get the results of the tests that need to be ordered, all spanning an additional 6 weeks. I have a crisis in the meantime and go to the emergency room ($50 copay), only to be told they don't know what the problem is and I need to see my primary care provider and my neurologist.

So. . . That is $190 out of my pocket so far for office visit copays (that doesn't count deductibles and copays on testing, just office visits, plus lost time from work) and I still have no hope of securing a diagnosis and am just being referred in circles, all the while worsening in my condition. Why is it that when a doctor doesn't come up with a straight and simple answer in the first 5 minutes, they just give up?

In my final buck before giving up and floating away into the distance, I scheduled an appointment on my own to see an ophthalmologist (another $20 copay), 10 days away. If he cannot help me find an answer, I am done trying to find it. Now I understand why so many patients with chronic illnesses frequently suffer from depression: The medical profession forces it on them and patients just get discouraged and tired of hearing over and over "I don't know." I can handle an "I DON'T KNOW," as long as it is accompanied by "BUT I WILL WORK TO FIND THE ANSWER." I have yet to hear that.