I'm Putting On My Nurse's Cap...

Yes, in the picture, that IS dear Florence Nightingale or Sister Flo...patron saint to all nurses. And no, I am NOT Florence Nightingale by ANY stretch of the imagination. Heck, in some medical circles, I'm not even considered a "real" nurse because I work in psychiatry!

But I thought I'd share with all y'all some *tips of the trade* in regard to IV Solumedrol/steroids and oral Prednisone. Since my personal financial DEBACLE while on IV Soly, I'm probably the LAST person who should even be talking about this subject. LOL And then again, this may actually qualify me as an *expert* on the topic...who knows.

Of course, any time I address ANY medical issues here on CHEESE, I feel compelled to add a very serious disclaimer...the disclaimer being, "I AM NOT A MEDICAL DOCTOR". Any concerns you have about your own condition or medications should be discussed with your physician. I only PLAY a doctor on CHEESE/the Internet at times...much like Marcus Welby, M.D. did in the late 60's and early 70's. And THAT show only ran for about seven years, so... :-)

So, back to the topic at hand: IV Solumedrol/IV steroids and the use of oral steroid agents to treat Multiple Sclerosis relapse.

Anyone who has been mindlessly following the *story* line here on CHEESE of my MS saga and treatments knows I have had several series of IV Solumedrol pumped into my system over the past 5 years since diagnosis (as well as most of the disease-modifying medications, but that's a different story). Some of you have been bold enough to ask "why?", while others either thought this treatment was basically fine or simply didn't question. Either way, I'll respond here to explain.

When I first began seeking treatment for my personal brand of MS, I advised my physician(s) I wanted to do whatever was possible to keep me working the longest without impending disability or loss of my job. For a physician dealing with all the uncertainties of Multiple Sclerosis, that's a tall order to ask. And for a patient with MS, that's a thin line of rope to balance upon (especially WITH balance issues!). When in a relapse, I am constantly (as is Dr. SWWNBN) weighing out how LONG to allow my body to simply REST and how SOON it would be appropriate to TREAT the relapse with steroids.

Because I cannot afford to be out ill from my job for extended periods of time (or risk LOSING my job and thus having no INSURANCE!), and because of the type of occupation I have which requires all of my faculties working, I cannot go to work *half baked* or partially functioning. I do not have a desk job and must be capable of rapid, physical response if needed for my own safety and the safety of my coworkers and clients. In other words, it's ALL OR NOTHING at my job...I'm not at liberty to experience extended periods of vertigo, numbness, incoordination, cognitive changes, etc. So, I choose to TREAT most relapses fairly quickly with what has PROVEN to be effective for my own brand of MS...STEROIDS. This is a prearranged agreement I have with my physician(s)...and we can discuss WHY I don't find a different job that is more accommodating to my physical needs at a DIFFERENT time, but not now. :-)

Most of the time, Dr. SWWNBN will order a flat series of IV Solumedrol for either 3 or 5 doses...that's one IV a day, 3 or 5 times. The usual dose of cocktail for ME is 1,000mg...for some, it's 1500mg. And for other MSers, it may even be LESS than 1,000mg. I have a hard time tolerating anything in a higher dose than the even number of ONE THOUSAND, so that's what gets popped into my veins.

I head up to Club Med and have an indwelling catheter (IV or Heparin lock) placed (usually in my hand now, because my veins in my arms were blown from IV Phenergan while hospitalized a couple of years ago...sigh), which stays in my hand for as long as it will remain patent (usable)...sometimes the entire 3 days, sometimes not. I'm just fickle that way. I bring home latex gloves and tape that I can use to cover my hand (taping up the arm opening while on my hand to make a water-proof seal for showering) whenever needed for basic hygiene or dish washing purposes. I prefer to only be stuck ONCE if I can get away with it...because finding a second site for an IV start can get tricky on me.

Steroids are powerful drugs. IV steroids are even more powerful than oral. Interestingly enough, I oddly TOLERATE IV steroids much better than oral Prednisone, as the Pred. tends to make me battier than a bell ringer (but we'll get to THAT issue a bit later)!

Methylprednisolone, or as we know it to be called Solu-Medrol here in the States, is a powerful synthetic glucocorticoid steroid. It is primarily used as an anti-inflammatory which, in theory (please don't make me explain the theory of MS lesions here?!?), lessens the inflammation in the brain of an MSer, thus relieving symptoms CAUSED by that inflammatory response (relapse). But, like ANY drug that has a benefit, THIS particular drug comes with a rap sheet of potential problems (side effects), too.

For instance (and this is just for starters), Solumedrol can have an immediate affect on a MSer's metabolism and their immune system. In layman's terms, it can make one EAT LIKE A HORSE and not even KNOW THEY ARE ILL if they come down with SOMETHING LIKE AN INFECTION. It is not known WHY IV Soly (or steroids in general) cause such weight gain/stimulate the appetite (again, consult your OWN physician here, because sometimes people report LACK of appetite with this drug!), but it is a serious side effect that can occur. I will typically gain anywhere from 5-15 pounds when on steroids, depending on how long the course of treatment is...and I REALLY can't afford to pack on the pounds here...seriously!

It is always important for me to be aware of signs/symptoms of *other* opportunistic infections popping up whenever I am on steroids because the drug "masks" these symptoms. MSers typically report an increased occurrence of bladder/kidney infections, or respiratory infections, and/or poor wound healing. Of note, steroids ALSO can increase a person's WBC (white blood count...the cells responsible for fighting infections) well above *normal* range, which certainly doesn't make sense at all if steroids ALSO can increase one's risk for DEVELOPING an infection, now does it?!? I had to argue with a doctor once in an ER (got sick with an Adenovirus right after IV Soly treatment) that my elevated White Count was NOT due to infection, but most likely due to Soly treatment...he STILL insisted on other tests (like chest X-ray, Urinalysis, etc.) to *rule out* an infection, only to discover I was dehydrated, had a low potassium level, and had a VIRUS instead...whatever. I'm no doctor, am I?!?

IV Solumedrol can also mess with a person's blood glucose levels...messing with equals ELEVATING the level. Yes, that's right. You can ALSO develop drug-induced hyperglycemia (just like me)! I'm not a diabetic, even though I'm probably on my way to developing adult onset diabetes mellitus because I'm too frickin' fat. I typically run a blood sugar (glucose level) of around 80 (*normal*, depending on what lab you believe, is somewhere between 60 - 90 or 70 - 100). But when on IV Soly, my BS (blood sugar, silly!) can creep its way up into the 300's...and THAT'S way too high on any skinny OR fat person's scale.

If I know I'm going to be getting IV Soly, I try to rid my hut of unnecessary sugars and stock my shelves with fresh vegetables, fruits, and lots of protein items (or I have a kind friend make a store run for me). Protein DOES help to combat the rapid conversion carbohydrates will cause when on Soly because it takes the body more effort to convert protein than carbs...it's simple KREBS CYCLE info here, for that scientific mind I know everyone who reads CHEESE has...(truly LOL here AND rolling on the floor laughing). I also have my own glucometer (blood sugar checker thingy) to monitor my BS (if I only had a *real* BS monitor to gauge the B@!! S#!+ that I spew here...now THERE'S an invention!) and keep watchful eye on the increase. Because it always DOES increase...like clockwork. But this CAN be controlled with careful dietary restrictions...which is very hard to do when I am considering eating my cat's food out of binging desperation when ON IV Soly!

I take a *water pill* (diuretic) daily...I was prescribed Dyazide a few years ago (after my Rituxan Study when I developed severe hypertension) and, although my blood pressure has returned to normal for the past 6 months to a year, I just haven't seen my ARNP to discuss stopping the medication (because I'm non-compliant like that). I rather LIKE having a pill that taps off excess fluid every day...it's a *fat thing*...Hehe.

But Dyazide (and MOST diuretics) has its own side effect of not only running the extra water out of my system, but also taking my blood potassium with it through my kidneys and causing me to pee (urinate...ehem) it out (what's called *non-potassium sparing*). Because of this, I typically run a lower or below normal range potassium level (K+ on your lab reports, which usually is found to be *normal* between 3.5 and 5.0). Unfortunately, IV Solumedrol (and MOST steroids) are also potassium depleting...I have had instances when on IV Soly that my K+ level has dropped to a dangerously low 2.8 (people tend to experience cardiac symptoms around 2.5!). So, rather than ALSO having a heart attack while on Soly, I take a prescription potassium supplement whenever I'm on steroid treatments. This ensures my K+ level will hang on to a normal range and I won't be seeing a cardiologist AND a neurologist any time soon. And, symptoms of hypokalemia (low potassium levels) can mimic MS neurological symptoms...because potassium affects how well our muscles work. Too low a level can cause cramping in the extremities and a whole HOST of other symptoms.

Other sometimes annoying/sometimes relieving side effects of IV Soly for me are, a noticeable decrease in my typical irritable bowel syndrome/diarrhea, flushing (or redness) of my face, increased acne, abdominal bloating, hand tremors, increased body temperature, and photosensitivity (lights bothering my eyes).

Now...FINALLY I swing into an area of steroid side effects I know something about. Mental changes.

Most any MSer can describe to you what it "feels" like to be on IV Solumedrol...because the mental changes the drug can cause are what we tend to notice FIRST. Steroids not only work as an anti-inflammatory on the brain, they also MESS with the FUNCTIONING of the brain. I have both observed and experienced what can only be labeled as *drug-induced psychosis* with IV Solumedrol. That's right...the mental health expert is drawing upon personal experience to provide you with this information!

It is not known WHY steroids affect the emotional/mental functioning of the brain. Some theorize it may be due to the restlessness and insomnia the drug(s) can produce, while still others believe the drug(s) actually alter the brain functioning itself, causing an interruption in perception within the brain. Personally, I think it's probably a combination of BOTH.

One of the many benefits of IV Soly I get is a decrease in my incessant fatigue level. That's because steroids cause me to have an increase in energy well above what has become *normal* for me. Steroids also cause my to experience *jitters*, irritability, and restlessness as well as an inability to sleep (insomnia). I once had an episode (early in my experience of MS) where I remained awake for over 56 hours due to steroid-induced insomnia. Needless to say, I began seeing "shadows" and movement that wasn't occurring as well as developing my own crazy brand of paranoia (well...I "thought" people who were trying to help me were actually trying to kill me and the medications they were giving me were actually poison...and THAT, my friends, is called *psychosis*). Once I was finally KNOCKED OUT by my psychiatrist and the psychiatric symptoms were treated, I returned to my BASELINE level of regular paranoia!

What I do now (knowing I am susceptible to this type of episode) is to always contact my shrinky dink and therapist (Hey! I work in the *field* and one can NEVER have too many people to talk to!) so they are on board with my treatment plan. They both step up their monitoring. Which means I can expect phone calls from either or both of them, just "checking". I also begin a low dose regimen of Klonopin at the start of my treatment just to get some benzodiazapines (anti-anxiety medication) under my belt...just in case. I have a PRN (as needed) prescription for Zyprexa, which IS an anti-psychotic medication (used to treat a host of disorders, but also psychosis), which I will generally take if I have experienced insomnia for one or more nights. I don't *like* to take the Zyprexa because it is highly sedating and also has a side effect of weight gain...but it sure beats hole-ing up and hiding behind locked doors because I *think* someone is trying to kill me! Sigh...

Steroids can also trigger serious depressive episodes (Jen, over at MSStrength, has written a wonderful and heartfelt post about this very experience) and anxiety attacks that a person might not *normally* experience. For some, suicidal thinking (or suicidal ideation) raises its ugly head while on steroids. And because the brain is already whizzing around and firing weird signals (most likely from the frontal lobe, but again, nobody knows for sure), a MSer on steroids BELIEVES or can easily buy into this thinking...because the mind has a way of convincing itself it has ALWAYS felt this way and will NEVER feel better. That's not to say the depressive/anxiety symptoms and feelings are not REAL, they are just drug-induced and not necessarily coming from the *normal* brain...or at least the part of the brain that uses reason and logic to resolve this type of experience on its own. IT IS CHEMICALLY-INDUCED.

MSers are already at a very high increased risk for suicide (I've read various studies on this phenomenon, and NONE of which, are recent studies)...anywhere from 3 to 5 times at a higher risk. Again, *speculators* (what I like to call researchers and psychiatrists!) have various theories about why this is true, ranging from depressive symptoms due to physical disability/changes and depressive symptoms due to altered brain chemistry. That's WITHOUT steroids on board. "We" may already have a propensity toward negative psychiatric symptoms just by HAVING MS...it makes sense if "we" pump a highly toxic chemical like Solumedrol (or ANY steroid) into our system, "we" might set off a dangerous chain reaction.

A few other things I do (just to be certain I keep my sanity) while on IV Soly, is to print out a list of my emergency phone numbers and keep this list by my phone and/or on my kitchen counter top. This is because I can become so cognitively impaired (DUMB, for a lack of a better word), I might not be able to LOCATE these numbers if I needed them. I usually make sure a friend or two knows I am doing IV Soly treatments "just in case"...so I'm not found dead 3 weeks later because my cat and I tangled while I was in a steroid-induced fit, and the CAT won! I leave this list out in plain sight because I live alone, and if a friend needed to know who to call, they could easily find my doctor's numbers on this list.

I also try never to engage in any mental activities that require concentration...which leads me all the way back to the origins of this post and my checkbook debacle! Boy, did I slap myself to remember THIS one the hard way...due to paying my bills while on steroids, I have managed to rack up ONLY $75.00 in overdraft fees with my bank...something I have never done in my LIFE! So, if you need proof of this last suggestion, well...I'm the scientific experiment. DON'T TRY TO DO ANYTHING THAT REQUIRES A HIGH LEVEL OF CONCENTRATION WHILE TAKING STEROIDS!!

And yes, that last line WAS a **note to self**...

Party In The Hood...

If I didn't know better, I'd swear I was living in a war zone...but it's just a party in da hood, celebrating the announcement of Obama as our 44th President of the United States!!!!

Gonna go get me some of that "Bush Be Gone" spray...

09 America The Bea...

Speaking Of Hacking...

No, NOT the kind in the picture! Computer hacking.

I had the most unfortunate experience of having my private email HACKED yesterday around 4:00PM. Yes, that WOULD be AOLHELL who provides my main email...thank you for asking. :-)

Within a matter of minutes, my password as well as my email account were commandeered, which I only discovered after getting a couple of those "Mailer Daemons" showing up in my in box and a "note" from AOLHELL telling me I had engaged in online activity against their User Agreements. WHAT THE A-O-HELL?!?

Needless to say, I panicked because I couldn't remember what all I had stored on AOLHELL and what the hacker/robot malware may have access to...I say "robot" because I'm pretty sure this must have occurred from a remote access site that perhaps sent me something that got downloaded as software...or not. I say "pretty sure"...I'm not that much of a computer geek to KNOW for sure.

Anyway, within a matter of minutes, my password was changed and several hundred emails got sent out from my account with one of those, "I am Mugo Prugeo of the Kenya Bank and wish for you to transfer the sum of $39,000,000.00 dollars" or something like that! You know the spam mails?!? The access/software they use also deletes your email once they have commandeered it so you NEVER know they are there...until you sign out of your account and try to sign back in. Which one cannot do because the original password has been changed!

I maintained enough dignity not to crap my pants during this ordeal AND to remember AOLHELL has phone numbers one can call and get access to someone in India who tries to tell you his name is "Steve", said with heavy Eastern Indian accent. So, I called AOLHELL. Come to find out "Steve" no longer works for them and has become a completely automated system where you can NEVER speak to a live person again! **I will miss you, "Steve"...if that really WAS your name.**

Through much confusion and slamming of my phone on the desk, I was able to finally get to a "change your password" automated feature. Because the hacker/robot did not have control of the answers to my security questions already stored with AOLHELL, I was able to change my password, thus blocking the hacker/robot access to my account. But not before receiving multiple "Mailer Daemons" (like about 175 of them!) still stored in my "recently deleted" mail file. This is where I found out just how MANY of these crappy spam emails had been sent out under my email account!!!! As many as 45 emails, all with about 50 more embedded addresses, were emailed out in my name...somewhere around 2,000 of these babies. EFFERS. But, at least I was able to quickly restore my account and remove the hacker/robot from my system. Whew...

Unfortunately, the "FUN" didn't end there. After establishing the hacker/robot was not sophisticated enough to delve into any personal files, I blew a heavy sigh of relief. But then I wondered about my bank account (which I rarely think about, even though I do a lot of online banking)? Maybe I should check this too, just to be safe?

So, I went over to my SKANKOMERICA bank website and signed in. One could have heard a pin drop had it not been for the deafening screams emoting from my mouth!

I had the sum of about $3.00 in my account...total...balance. Again, a big ol' WTF escaped my lips. I quickly scanned through all the recent transactions, only to discover they had all been made by "moi". WTH? (What the heck) "That can't be right", I thought. "Surely the bank has now made an error".

After careful review of my checking account online against my personal PAPER ledger I keep, I discovered the bills I had paid while ON STEROIDS had been OVERPAID! WTF - WTH?!?! Yes. Your's truly made a gross math error while ON STEROIDS (**note to self** Never pay bills while taking IV Solumedrol) and had managed to transfer sums on line that did not match the math done in my checkbook ledger...to the tune of about $600 miscalculated. Sigh.

I know, I know. Y'all probably think I'm some kind of money bags or something to not HAVE TO keep such close track on my funds with diligent oversight. Truth is, I just always kind of KNOW my balance in my head, subtracting as I go, and sometimes waiting until the end of the week to balance my ledger. The unfortunate mathematical miscalculation of $600.00 left me "thinking" I had far more dollars at hand than I did.

I guess I should THANK the hacker/robot who tortured me by taking command of my email account, thus propelling me to check my bank account, thus causing me to quickly respond this morning with a CASH deposit to cover the bleeding of overdrafts that were starting to occur!

Yes, thank you, Mugo Prugeo (if that really IS your name!) for your illegal and malicious attack on my email account. Had it not been for you, I might not have caught my OWN steroidally induced financial error in my tiny checking account, which "could" have resulted in me contacting you about that "sum of $39,000,000.00" you'd like to transfer into my account!!!

So, here I sit in my Tysabri infusion (the wonders of laptops and WiFi) after rushing to the bank this morning just prior to a dentist' appointment (joy of all joys), typing from Club Med (yes...sigh...still HERE for now. More to come in the blog about THAT issue!), while waiting TWO hours (not one) for my Tysabri to infuse (because there is some "thought" infusing over two hours versus one may decrease the post infusion joint pain I continue to experience), which will ultimately take THREE hours, not two, while awaiting election results.

The anxiety of all of the above may force me to cough up my OWN hairball...

HEY! Lighten Up, Would Ya?!?...

Note that IS an a$$/donkey in the picture up there...not that I think I resemble that picture or anything!

But seriously. Or seriously not. I've been posting FAR TOO much serious information/stories here on CHEESE of late. And this act of Internet defiance must STOP! Now. Today. I'm glad to read all y'all could *relate* in some way to my "letter to the universe"...that's why I wrote it. It was intended to be serious, heartfelt, and hopefully connecting. And the gang posts? Well, it was just what was weighing on my mind this weekend...but I think it's time for a return to shenanigan writing for awhile!

So, here are some tidbits to tide you over until some utterly ridiculous event occurs in my life:

1. One of my coworkers experienced a most unusual "threat" this week. *Someone* told her/threatened her with peeing in her bra! Now...THERE'S a threat I've NEVER heard before...and believe me when I say, "I've been threatened with just about ever imaginable thing in my life". I found this *threat* to be so insanely delicious, I have been REPEATING it/THREATENING it to just about all of my friends!!! Saying things like, "Yeah, you think so huh? You do that and I'm going to pee in your bra!" OMG...they're not sure if I'm serious or I have finally had MS eat away a very important part of my brain called the "reasoning center". LOL I've also been practicing using Blindbeard's combination of two words this week: "A$$hat". Thank you, BB...tis a refreshing and delightfully compelling insult! It's starting to roll of my tongue quite freely now...

2. Today is ROJOO's birthday...WOOHOO! I have no idea how old he is (Actually I DO, ROJOO! I looked into the State Licensing Board Registrations! Moohahaha...), but I found a card for him which ALSO features a...well...an A$$! Nothing says "Happy Birthday" like a well-placed donkey.

3. One of my other coworkers made reference to the P.O.D. (my cat) being a bit *portly*...she's NOT! She just has thick fur (just like I am BIG BONED! LOL). Anyway, it got me thinking maybe I should get her to try this . I KNOW that is certainly why I won't use one of these !

4. Bubbie emailed me to join a recipe email chain...one of those "send a simple recipe to the first person on the list and by the end of this, you'll get like 36 new recipes" or sumptin' like that. Well...novel idea. Only one, big problem with that, Bubbie. I DON'T COOK!!! Unless the microwave has now been classified as a major culinary tool. She seemed offended by my response or lack there of...LOL

5. Daylight Savings Time. Who's great idea WAS this anyway?!? It NEVER works out well for me (I'm generally an evening shift worker)...and this most recent time changing event? Mkay. I reset ALL my clocks in the hut last night before I went to bed (because I'm currently in a stretch of 5 dayshifts...which makes me want to dig out my left eyeball with *joy*), except one. THE most important "one". My bedside alarm clock, which I have a terrible love/hate relationship with...but I digress. Anywhozit, it is one of them there new fangled atomic alarm clocks, which picks up a satellite wave and keeps itself accurate within one 10th of a second every 100 years or something (like I will be around to know if this "accuracy claim" is true!). I can never remember (each time change...sigh) if I am supposed to set it forward or not. Or if it will automatically reset itself based on my time zone (and Gawd forbid I should look this up in a manual or something!). So, I DIDN'T set it back an hour when I went to bed...and somehow in the middle of the night, I woke up disoriented and thought I SHOULD set it back an hour, which I did. Of course, my late night wake up was well past the 2:00AM DST curfew...and I set my clock back an hour and went back to sleep eventually. Only to wake up to my 6:30AM alarm (**sound of alarm clock being slapped off the night stand to shut it off**) and discover it was really 5:30AM because I had SET MY FRIGGIN' CLOCK BACK AN HOUR AND IT HAD ALREADY RESET ITSELF...now, if only I could be within one 10th of a second accurate every 100 years. Sigh.

6. And finally, an email joke from my sister (this is about as "unserious" as she gets!). I added the links just for fun:

NEBRASKA WOMEN

Three men were sitting together bragging about how they had given their new wives duties. The first man had married a woman from Colorado. He told her that she was going to do dishes and house cleaning. It took a couple days, but on the third day he came home to a clean house and dishes washed and put away.

The second man had married a woman from Texas. He had given his wife orders that she was to do all the cleaning, dishes, and the cooking. The first day he didn't see any results, but the next day he saw it was better. By the third day, he saw his house was clean, the dishes were done, and there was a huge dinner on the table.

The third man had married a woman from Nebraska (**sorry BB, just not a big crowd of Nebraskan bloggers to choose from!**). He told her that her duties were to keep the house cleaned, dishes washed, lawn mowed, laundry washed, and hot meals on the table for every meal. He said the first day he didn't see anything, the second day he didn't see anything, but by the third day, some of the swelling had gone down, and he could see a little out of his left eye, at least enough to fix himself a bite to eat and load the dishwasher.

Happy All Soul's Day, my preciouses...

Can We Please Call It What It IS???...

Not since the West Side Story have I heard so much talk about "gang-related" this and "gang-related" that...only difference is, the Sharks and the Jets didn't have automatic fire arms. Just knives...but we romanticized THAT, too, and created an entire musical about it!

I know, I know...the West Side Story was a "romance set to music". Yeah, right. Just like Romeo & Juliet was a "classic love story"...ABOUT TEENAGE SUICIDE! Whatever. I'm just sick in the pit of my stomach today about our "gang-related" shooting in the hood last night...and I'm ever-so-frickin'-sick of the media using that term. GANG-RELATED.

Can we stop labeling everything that has to do with anyone under the age of 18 committing crimes as "gang-related"? Whatever happened to basic terms like THEFT, CAR JACKING, ARMED ROBBERY, PROPERTY DESTRUCTION (graffiti), BREAKING AND ENTERING, VUCSA (Violation of Uniform Controlled Substance Act...aka, selling DRUGS), ASSAULT, and plain old fashioned MURDER???

"Gang-related" somehow romanticizes these acts and makes them less than what they are, numbing us all into a state of complacency. Murder is murder, no matter what the age you are when you intentionally brandish a gun, point it at someone, and pull the trigger with the INTENT to KILL someone. It's called MURDER, society and media writers. No matter what gang sign you flash, color you are wearing, or how old you are. And it is gut-wrenchingly sad we are producing more and more MURDERERS in this country.

I don't know WHAT Obama's got in his bag of tricks anymore than I know what McCain is sporting...I'm politically pensive and democratically doubtful (not to be confused with the Democratic Party). But what I DO know is this: It is time to get out there and save our children in this country...before all we have left is a society of shiny, new prisons filled with children under the age of 18 and dilapidated, old houses where these kids used to live, spray-painted with "gang-related" graffiti and falling down.

Now excuse me, while I go watch some more "gang-related" TV (because I KNOW several people who have a television set...it must be "gang-related", right?!?) about the "gang-related" shooting (**bile rises in throat just typing THAT trite statement**) in my neighborhood. Who knows? Maybe I'll have me some of that "gang-related" ice cream (cows bunch together in herds, too) while watching the "gang-related" political ads.

Or am I still allowed to call political smear campaign tactics LIES and the misuse of power CORRUPTION?!?...

They Should Have Been Eating Halloween Candy...

As you can tell by the strange hour of this post and time lapse of the previous post, I have not had much sleep last night. I wish I could say this was because of Halloween revelers, but it is not.

At 8:22PM last night, two teens were gunned down 6 blocks from my home at a local High School, one fatally shot and the other seriously wounded. My neighbors next door were having a Halloween party for their teenage kids as well. Suffice it to say, much chaos ensued in the "hood" until the wee hours of the night, as word spread throughout nearby neighborhoods and to the scared and angry kids in costume next door.

What a crazy world we live in that such young children must be on constant alert for their safety. They SHOULD have been home eating Halloween candy...

I ALWAYS Get Blamed...Part II...

OK, so Bubbie *beauched* me out for posting a post that I deleted (she's a powerful woman to get me to respond here!)...if you have Google Reader, it probably came up that I posted something titled, "I Always Get Blamed", or something like that.

Well, what happened was this: Dr. She Who Will Not Be Named sent me the original link to a video that had my BIRTH name in it...and I thought the video was so funny, I resent it to myself with my "Brain Cheese" name embedded (because God forbid, anyone but Baby Jesus and the FBI should know my TRUE identity!). Then I tried to post the video to CHEESE, but it wasn't successful.

SOOOOOOO...the best I can do is post a LINK to the video for you to click to and watch if you so desire: I Always Get Blamed For Everything! Hopefully the LINK won't change the way the video is played like editing the html did!

Awright, Bubbie...click away. LOL

The Most Difficult Letter I May Ever Write...

Dear Family, Friends, Coworkers, Acquaintances, and Small Pet:

I am writing to inform you that, contrary to what I may be telling you or what you may think you are observing, it is a lie...a falsehood that I have been perpetuating for several months now. Something I have been saying or pretending to be as a means of hiding behind what is my truth...something I have been actively trying out of desperation to cover up because of fear and a sense of vulnerability.

I have Multiple Sclerosis and I am not well. These past few months have come with a new level of loss and grief as I have struggled to manage, hide, and deal with ever-changing and perplexing symptoms of my MS. I have wanted to believe out of desperation and fear that these "changes" were simply temporary...that, as usual, I would experience new symptoms (relapse), but they would eventually go away (remit), and I would happily return to the same level of functioning I have taken for granted since I was diagnosed in 2003. It is with deep sadness I must admit to you, but primarily to myself, that this is not the case. I am slowly becoming "disabled"...a word I both abhor and one in which I am terrified to speak out loud.

I am losing cognitive abilities. Something I am far more frightened to admit or deal with than any trepidation I might experience in having a leg severed from my body. Yes, I know that sounds extreme...certainly losing a leg *should* be far more traumatic than a slow decline in one's mental capacity? But in my world and way of thinking, it is not. You see, I could learn to walk again with only one leg...and I have a second leg to carry me as well. What I do not carry spare parts for is my MIND and my ability to speak, make decisions, process language, experience regulated affect, and a whole host of other abilities each of us uses every day as a defining feature of who we are as a person.

I am experiencing a constant and sustained level of fatigue. No, I am not depressed. Depression would require a mood or affect change that would result in a lack of desire to participate in the world around me. Believe me when I say now, my DESIRE to participate is there, but the basic energy to do so is generally absent. I find most days, it becomes a guessing game of just how much energy I must conserve to complete the simplest of tasks...and how much energy I must expend just to fulfill the duties of my employment. When you have asked me to do this or that or go here or there and I have declined, you may have been left feeling as if I did not care about the activity...or worse, I somehow did not CARE about you. I can only apologize for my lack of clarity and/or flippant explanations I have provided or any hurt feelings you may have experienced. It has never been my desire to shut you out of my life...but I realize by now you may have chosen to turn away from me as a means of self-preservation.

I am unable to walk distances I used to glide through with ease. Contrary to the negative chatter inside my OWN head, this is not simply the result of a character flaw or laziness. The nerves that used to carry the necessary impulses to move my legs through sustained periods of exercise no longer are firing in their general patterns or directions anymore. I spend a great deal of time experiencing either a "cramping" sensation in my lower extremities or, worse yet, no feeling at all in parts of my legs. I stumble more than usual now. I crash into things with regularity. We generally have laughed together if you have been an observer to these mishaps. But inside my mind, I am not laughing...I am nervously trying to mask the alarming manner in which my legs may suddenly become foreign appendages to me. You are not witness to the bruises on my legs because I do not want you to see the contusions and question or worry about me. I have never wanted your "worry"...only your companionship.

My vision is changing as is my ability to immediately recognize your face. It is true...I may have known you now for several years, but in my presence, my brain may not receive the signals from my eyes in the same manner and quickly process who you are. It is not because I no longer "know" you. It is because there is what feels like an interminable amount of time needed now for my brain to recall and distinguish things I see. If I walk past you and I do not acknowledge you, please do not immediately believe I am ignoring you or simply being rude. I honestly may not recognize you until several seconds AFTER you pass me by.

I remain in a constant level of pain. This causes me to feel distracted quite frequently and, to be quite honest, more irritable than usual. I do take medications to assist with this pain, but the pills are often too strong for me to tolerate during my waking hours, and I am left to either tolerate this discomfort or be too medicated to function fully and safely in the world around me...most of the time, I choose to tolerate the pain. I do not tell you this part of my story as a means of "one upping" any ongoing physical discomforts you may also be experiencing. I do not wish this type of pain upon anyone nor am I trying to invoke sympathy from you. I am merely telling you this so that you might understand it is there for me...it is now, always there.

I have much greater difficulty controlling and regulating my affect. This again, is not to be confused with an idea I may be depressed. Sometimes, things that would normally NOT be funny, cause me intense laughter and I try very hard to control this because I recognize THIS symptom of my MS is NOT socially acceptable. But, it IS there all the same...and it creates great embarrassment for me. Likewise, so does my inability to control my tears. I can now begin crying for no real apparent reason and I will often hide away from you when this happens because I do not wish to alarm you. I am not necessarily FEELING sadness when this occurs. It is a misfiring in the frontal lobe of my brain that creates a false sense of emotion. And I, too, struggle to separate out the physiological aspect of this phenomenon from a true, emotional component. As confusing as this may be for you to observe, it is far more confusing for me to explain to you. And it leaves me feeling out of control of the most basic aspect of my personality...my emotional experience of the world around me.

I sleep very poorly due to pain and most likely due to generalized anxiety this pain creates. I will often tell you in jest that I either do not require as much sleep as you do to function or I will use my work hours as an explanation for emails or even phone messages you might receive during hours a "normal" person might sleep. This also contributes to my severe fatigue and is something I struggle to regulate with medications and other alternative therapies. If I mention to you that I am "tired", it is because I am physically exhausted...not simply bored or disinterested in some portion of my awake hours. Sleep, and what few winks I can catch of this elusive experience, is extremely important to my functioning and I now might be found "napping" during the day when I can. I hope you will not confuse this with a sense of laziness as I often label the response. It FEELS disrespectful and "lazy" for me to nap through your phone call and not answer, but I do not want you to stop calling me because you repeatedly are unable to reach me. I hope you might grow to understand, and thereby assist me to understand, that sleep has become as essential to me as food or water and I MUST obtain as much of this as I can to replenish my nervous system.

On any given day, I may experience a worsening or a grateful lessening of any of the above symptoms. You may, in fact, one day see me limping or dragging a leg in pain and, the very next day, see me walking just as a "normal" person might. It is not because I am somehow "faking" a symptom one day or perhaps even "allowing" myself to experience a symptom I might otherwise be able to PUSH myself through. Quite the contrary is true and it is the unfortunate nature of this disease. As surely as it is confusing and baffling for you to comprehend the WHY of my experience, it is equally as frustrating for me to grasp any sense of clarity in my day to day functioning. I may one day complain of numbness, or dizziness, or pain in an area of my body, or facial tics, or eyelid spasms, or incoordination, or have visible tremors...and the very next day, this symptom may have abated. This frustrates me greatly and, although I *should* be thankful the experience has passed, I am actually left feeling angry it ever surfaced in the first place. And, I feel embarrassed and "silly" to have bothered you or anyone else with my complaint at all.

Throughout all of these gradual and recent changes in my health, I have silently remained in fear of the unknown. I have not wanted to worry or invoke sympathies by telling you this...that is true. But I have purposely not disclosed this information to you because, on a very basic level, I did not want to admit to myself any of it is real or has been occurring. I have found myself pensively laying awake at night in anxiety, worrying what the ramifications of these physical changes may have upon my ability to remain gainfully employed, how I will continue to physically and emotionally survive if I can no longer participate in an avocation I truly enjoy, and I have cried many tears of anger and grief by myself. I have consciously placed myself in a status of "aloneness", which has provided an end result, of feeling alone...and this has neither been productive nor useful to me. I have contemplated my own mortality and silently wished that, if I become rapidly "disabled" to the point I no longer feel I am a productive member of society, that Death will take me silently in the night...that whatever gods or higher powers or spirits might be in charge, shine a face of empathy upon me and let me slip peacefully away without fanfare or loss of dignity. I have contemplated LIVING with my steady decline as surely as I have contemplated DYING as a result.

It is with great humility and extreme vulnerability I write this letter to you. Because I can no longer expend the energy required to smile and pretend with you that I have not and will not continue to experience further progression of "disability", I place these words upon the page. It is because I owe YOU as much as myself the freedom of honesty in this experience, that I type these words. It is because, throughout these past few months, I have slowly begun to comprehend the notion there is strength in vulnerability, I share these most deeply guarded secrets of myself.

And finally, it is because my relationship with you, if lost, would be far more traumatic than having a leg severed from my body OR losing the functioning of my mind...this being I call "me" would be forever lost without "you".

Sincerely,

LD

An Ounce Of Kindness...

I have just returned home from one of the top ten worst days in my professional career. Suffice it to say, no one DIED ON MY WATCH (which would be the *ultimate* worst day case scenario)...but a combination of circumstances out of my control, mixed with the alignment of tumultuous ocean currents, constellation phenomenon, and perhaps someone poking pins in a Voodoo doll secretly behind my back, resulted in a seriously stressful 10 hours at my job (because, as you KNOW, that's basically all I CAN say specifically about my work here on CHEESE...ehem). At one point, the latest MS "uncool" symptom to develop (something known as *blepharospasms* or involuntary twitching of the eyelid(s)...click the link or Google the word for more info because I'm too tired to provide it here!) impaired my vision so much, I was having difficulty seeing to write.

My day began with an appointment to see my OWN shrinky dink, who casually questioned what my neurologist thought about my latest sequela of unusual and bizarre maybe-neurological-maybe-not symptoms. A bolt of lightening flashed from the sky and hit me on the head in that moment as I realized I have never specifically ASKED Dr. She Who Will Not Be Named WHAT she is thinking these days...to MS or not to MS?...that is a valid question! I mean seriously. Some of the things I have been experiencing over the past 6-8 weeks have been both baffling and highly suspect on the MS scale. I decided to consult my Internet Doctor and ask.

Funny thing is, I never got a direct Internet answer...just more questions. Oh, and I was told I need another MRI. Blah.

Knowing it was highly unlikely I would not perish at work from twitching eyelids (which is just the LATEST of strange symptoms and my shrinky dink verified that "yes", my eyelids actually ARE spasming...most uncool and maybe or may NOT be MS related), I headed out the door in the early afternoon for my place of employment...only to be bombarded with a nonstop, 10 hour barrage of *situations* requiring what little strength I have left to use to effect a positive outcome. Or, in English-speak: I got the crap beat out of me mentally/emotionally for trying to do the "right" thing. It happens. Just not usually in the cascading effect of today.

When I finally dragged my weary bones back to my main office (otherwise known as the "bat cave"), I was faced with decisions to cut some corners on my typical OCD way of completing my work, or be faced working several hours of overtime to complete my tasks. Tired won out. Corners were skidded round. Things I would normally check and double check for accuracy got a *once over*...it was simply the best I could do.

As I sat at my computer trying to compose complete sentences, I realized a coworker of mine was sitting in the next cubic-hell over from me. He'd been there obviously for quite some time, but I was so super-absorbed in my own trials and tribulations, I had not even acknowledged his presence. I also suddenly (like a horrible Tourette) blurted out a fact I have known for quite some time: He is retiring soon after working many years for my employer.

"Hey, *dude in the next cubic-hell* what's this about you retiring in *an upcoming month*?" I blurted out from somewhere in the recesses of my brain.

He came around the cubic-hell wall installed to keep the natives in and we began to converse about his upcoming life change. I honestly felt guilt and remorse that I had not taken the opportunity to acknowledge his retirement sooner and offered up the excuse that I had been "too self-absorbed" lately...poor excuse, but painfully true.

And this is when the conversation shifted back to me (which my world totally revolves around, if you haven't figured THAT one out already!) and he remarked on how well he thought I had been "managing your brain", in spite of all I deal with in having MS. He commented he knew this because he occasionally reads CHEESE, so he felt he had some understanding of the difficulties I face...there was a moment of compassionate kudos. At which time, tears welled up in my eyes.

It felt as if someone had just given me a first rescue breath of CPR. That someone, in spite of my sometimes oblivious-self-absorbed-nasty-self, had acknowledged my struggles and was cheering me onward...at a moment when I seriously contemplated just laying my head down on my desk and staying there for days until someone called the County Coroner to have my husk removed. It was so little...only an ounce of kindness...but had such great weight on my heart.

I am reminded we never can truly know how important our words or actions may be to another. We may never know what affect or influence such simple things as a hello greeting, a smile, a kind word, or a touch to a shoulder may have on another human being. We may never be privileged to see the many ripples that form from these drops we leave on the surface of another's life. But I am reminded, I must NEVER stop trying...I must NEVER stop dropping a kind word into the pool of another person's heart. And I am reminded of this, not because of MY own words or deeds, but because of the effect someone ELSE has had on me...and I am humbled.

So, *dude in the next cubic-hell*...if you are reading this, you KNOW who you are! Your ounce of kindness weighs like a pound of gold and I thank you...

I Wanna Be THAT Guy!...

I know why they're there...sort of. Those *image verification* passwords some of y'all have on your comment section of your blogs. And, usually after THREE or FOUR tries, I can type the right crap/sequence of letters or numbers in the box and leave my ever-so-witty comments on your blogs! Sometimes this particular process takes me longer than it does to "finger fly" on the keyboard and TYPE my ever-so-witty comments (as most of you can tell by the level of THINKING my comments require. LOL).

Ever now and then, however, one of these image verification thingamajiggies just gets me rolling with hysterical laughter (and *maybe* it's from frontal lobe lesions w/ my MS, too...perhaps).

Like, for instance (and I kid you not), tonight I was over at pUNKrOCKfAIRY's blog (or some spelling like that) reading a very heartfelt post about (what else?) MS and I typed out my comment...I was trying to be "all that" and philosophical with my comment. I was *trying* to be a voice of maturity and wisdom. Until I got to that blogger-image-verification-thingamajiggy and went to type in the letters required to get past the Post Police and LEAVE said comment splattered on her comment wall.

The image verification password I had to type in was P - H - A - A - R - T. phaart. I don't know about YOU, but I'd pronounce that (using the Queen's English) as FART! OMG!!!!

OK, I KNOW there is not a *person* per se who generates these image verification codes, but I really WISH there was because I WANT TO BE THAT GUY/GAL! I've got LOT'S of things I'd like the opportunity to spell out in code (and if you've read much here on CHEESE, you've already noted not only classic spelling ERRORS, but deliberate miss-spelling of words)...Like say *Ubeauch*, or *byteme*, or *effoff*, or *phatcow*, or...my ideas are endless!

Hmmm...you KNOW, if this little psych nurse gig I've got going on ever dries up, I smell a new profession on the horizon!...*gottagogh*, *bbaksoon*...

**(huh, huh...I said fart)**

Mar 'in Sheen, Get Off My Screen!...

That title is the first line of my latest rap song I've been working on. Yep, I'm about to rip loose with a big ol' fashioned CHEESE rant here!

OK, Martin (if that really IS your name, which I know it is NOT...Wikipedia told me so, Mr. Ramón Gerardo Antonio Estévez)...when you played the role of the President of the United States on that West Wing Show (which I never watched), I had a tad bit of respect for you (or at least the shows' writers) because your role was that of a president with Multiple Sclerosis. Kudos. But my praise stops with that five-letter word.

Get the hell off my Washington State TV screen with your "ignert" ads concerning Initiative 1000/Washington State Death With Dignity proposition that will be voted on November 4th! You DON'T live here. You seriously DON'T have MS. You can't even VOTE on the initiative because you're not a Washington State resident. So why do you care? Why don't you use that dwindling celebrity status of yours to promote something "good"...like say, MULTIPLE SCLEROSIS AWARENESS?!? Volunteer to do a Greater Washington MS Society ad...for FREE. Otherwise, get the hell off my TV screen about this.

I really can't take much more of this political advertising. No one is telling the TRUTH anyway. But having some aging actor from CALIFORNIA (Malibu to be exact...Wikipedia told me so and we all know Wiki doesn't lie ...wink wink) instill fear and further ignorance about this issue is just maddening!

And while I'm on this rant, let me ALSO say this (because I'm an equal opportunist basher): There is no friggin' DIGNITY in death, so I really wish we could come up with another name for making a moral and competent decision to end one's life when faced with terminal/certain and insufferable pain/death. If anyone believes there is "dignity" in the physiological act of death, try being around a corpse immediately post mortem. Every bodily muscle relaxes, including the bowel and the bladder...death has an "odor". Blood begins to pool and the flesh turns a ghastly and mottled color of crimson and blue/gray. IT'S NOT PRETTY. And it's certainly NOT dignified.

But death IS a fact of life because life IS terminal. Some people would just like to have the CHOICE of opting out of the excruciating part of the pain and suffering that sometimes accompanies dying. Some people would like the CHOICE of bypassing that possibility, in the same way we compassionately put our dogs down at the veterinarian's office (which is an entirely different tangent on this rant).

In Oregon State (where a similar law was passed in 1997), 341 people to date have CHOSEN to enact their right to end their pain/suffering prior to their terminal disease killing them naturally...that's over the past TEN years. And the majority of the folks who seek out the CHOICE via the multitude of forms, exams, mental health evaluations, and certifications they must jump through just to GET legal approval NEVER COMPLETE THE FINAL INGESTION OF THE LETHAL DOSE OF MEDICATIONS. Don't believe me on this one? Google it on the Oregon State DSHS website (and if not, just go Google yourself then!).

So shut up, Ramón Gerardo Antonio Estévez, and stay the heck in California where you belong...where you can die of your OWN natural causes there. Like alcoholism and smog and death by sun stroke....

Self Portrait Of A Shadow...

I've been spending a large portion of my day today consciously (and unconsciously) thinking about shadows. I even took the time out of my hectic steroid withdrawal/post "if this is a relapse, it sucks" phase to photograph my own, physical shadow...because it seemed somehow *important*...because fall is in the air, daylight is spending less and less of its time gracing our presence, and...well...I've been thinking a lot today about *shadows*.

So WHY am I so focused on shadows today (I KNOW someone must be asking this!)? The answer is both quite simple and highly complex...just what you'd expect from a navel lint gazer, I suppose. LOL

As always on CHEESE, I am ever-cautious WHAT I write here because the Internet can be an open window of peering for billions of eyes...not that billions of eyes DO come to read my blathering (more like two sets...my TWO loyal readers!). But I am always cautious of telling ANY stories that might involve others, never knowing if those "others" might be that anonymous *click* into this blog. And even if *they* aren't the subject of my tales, far too often the human psyche wildly will project itself into ANYTHING it recognizes as "self".

OK, I'm psycho babbling here...but prepare yourself with some rubber boots because the *psycho babble* is about to get deep! And please understand, due to the sensitive NATURE of my tale, I simply must type in veiled and vague language to avoid the possibility of further discomfort. (DISCLAIMER ENDED)

I've been thinking a lot about *shadows* today because I am currently experiencing an emotional conflict with someone in my life. This *conflict* has been raging for many months now, but I've had a heightened AWARENESS of it only recently. I've even gone so far in my OWN mind to entertain the notion this *conflict* may have been part of the catalyst to my recent relapse...well, that and running myself physically ragged with abandon. Whatever. As my mother used to say, "It's six of one and half a dozen of another"...whatever the heck THAT means!

But suffice it to say, whether or not the *conflict* played a key role in my physical decline or I am simply more FOCUSED on it BECAUSE of my physical decline (after all, what DOES one do with multi-hours stacked upon hours of cabin fever and little else to distract other than navel lint gazing!?!), this *conflict* has been secretly lurking about in the *shadows* of my brain.

Swiss psychoanalyst, Carl Jung, was one of the first in the psychoanalytic field to discuss the concept of *shadows* and how this relates to the unconscious. He was once quoted as saying, "Knowing your own darkness is the best method for dealing with the darknesses of other people.” Jung believed that in each of us (our psyches) there exists areas of unconscious thought/experience/perception, which drives us to project our own experiences and way of seeing things onto another...whether that perception is TRUE for the other person or not...WE believe it to be so because of the processes in our own minds.

The term, "projection", is still a common term that is batted about in the psychiatric field like a ping pong ball. For example, we might refer to a client *projecting* their past anger toward their mother into an experience today because a situation TODAY reminds them how they FELT when dealing with their mother in the past. Often times, the FEELING is real in present day terms, but the level of INTENSITY is purely related to something in their past.

So, just to totally cause you to get a concussion from hitting your head on your computer monitor while falling asleep reading this, Jung also said, "Just as we tend to assume that the world is as we see it, we naively suppose that people are as we imagine them to be. In this latter case, unfortunately, there is no scientific test that would prove the discrepancy between perception and reality. Although the possibility of gross deception is infinitely greater here than in our perception of the physical world, we still go on naively projecting our own psychology into our fellow human beings. In this way everyone creates for himself a series of more or less imaginary relationships based essentially on projection." It is the latter part of the above quote I am focusing on today - everyone creates for him/herself a series of more or less imaginary relationships based essentially on projection.

In my current *emotional conflict* with this "other" person in my life, I am aware issues between us have an intense, spiraling effect on me. Things said, actions taken, or words written by this "other" create a literal physiological response in me that is highly exhausting. I become extremely defensive and protective as well as down right rageful internally, while all the while trying with futile effort to project into my external world a voice/presence of calm and tranquility. I even find myself becoming angry that I feel I HAVE to "pretend" in this manner, when what I am really feeling borders on homicidal! I generally think of myself as a person who (I believe) is slow to anger, but also very, very, very sloooooow to forget what has created this feeling inside me. Yes, I DO hold a grudge...if we're playing the honesty game here.

I've gone so far as to make a list of the behaviors in this "other" person that annoy/anger/frustrate the hell out of me. Lists are good, right? Lists are a way of giving a physical presence to a thought. Lists are a way of taking concepts and ascribing words to the concepts, thus making the concept "real" or concrete. Lists are a way of organizing our thoughts.

Unfortunately (although Carl Jung just turned in his grave to say "bravo"!), lists can also serve as a mirror. And in the case of making the list of annoying/angering/frustrating behaviors of this "other" in my life, I began to note words on my list in which I *resemble that remark*. LOL

You see, the very things I read on my BITCH LIST about the "other" in my life slowly became recognized as the very things I struggle to NOT be...like judgmental, not truthful, holding a grudge, manipulative, sneaky, grandiose, etc. As painful as it is to admit, ALL of those characteristics exist inside me, too. They are my SHADOW. And, although I work to project what I want to believe are *better* characteristics of who I am as a person, those *shadow* characteristics still remain inside me...locked in a time and space when their development was initiated...during life experiences where I learned coping mechanisms to survive psychological attack.

My favorite and final quote by Jung is this: “The most terrifying thing is to accept oneself completely.”

And to translate, this means, "the crap I despise the most about this "other" in my life, is the very crap I fear being consumed by in my own mind. The very characteristics of this "other" that cause such a visceral reaction in my life are the same parts of my character I run from or attempt to hide away."

Don't get me wrong here...I STILL can't stand this "other" in my life and I STILL feel angry in their presence. Change takes time. Sometimes anger at injustice is appropriate. But at least now I know the root cause of my reactions and I can begin to assume responsibility for changing ME...I can turn and face my *shadow* and not be so terrified by the darkness.

After all, *shadows* only exists because there is a light shining somewhere...

Fire In The (lesion) Hole!...

I swear to you my house was on fire this morning.

I became aware of a hot, radiating heat that was coming from somewhere outside my bedroom. I could smell popcorn popping, which I KNEW was oddly strange for such an early time of the day. I heard voices outside my door and had the distinct impression my neighbor was popping the corn at barely Dawn's crack, which disturbed me more than annoyed me. Suddenly I put two and two together and realized my neighbor had most likely set the house on fire with a popcorn popper that had overheated!

I dashed out of my front door in complete alarm and panic, frantically searching for the source of the heat, and expecting to find flames dancing around my house. All I found was a stack of smoldering debris, but the heat it produced was quite intense. I sensed at any moment the stack would burst into uncontrollable flames and my house would be consumed.

I yelled at the neighbor to find water...ANY source of H20...and to begin dousing the smoldering debris pile while I called 911. Cell phone in hand, I tried repeatedly to dial those three, simple numbers, but my fingers kept hitting the wrong buttons...which only increased my panic more. When I finally managed to hit all three buttons in sequence, I was connected with the local sheriff's department, who promptly put me on *hold*.

"WTF?!" I screamed into the phone. "My effing house is on fire and I need the fire department here stat, you *$*#(@er's!"

I redialed 911 and got an operator who said, "Just a minute"...I could audibly hear her lay the phone down and walk away. The heat from the debris was becoming intolerable as I watched my neighbor fumble with a small garden hose that only produced a trickle of water, creating more steam than defense.

Then, just as I predicted would happen, a burst of flames shot upward into the sky, and I fell backward from the flash of hot, humid air pressing against my chest. **Fortunately...this is where I awakened from my nightmare.**

It took me several minutes this morning to realize there was no actual *fire* dancing around my hut. I was completely disoriented and drenched in sweat. THIS part of my tale is no dream. I had thoroughly soaked my bed sheets in perspiration and my cheeks (on my face, silly!) felt sunburned...later when looking in the mirror, my face DID appear *burnt* in some strange fashion.

I have spent the day home AGAIN from work, recovering from "something" that took over my body in the night. Dizziness abounds as has weakness and fatigue. I thought I was *over* this...I thought my relapse (if that really IS it's name) had packed it's bags and moved on. I was not prepared for this set back...apprehension and melancholy have plagued my thoughts today...so much so, I have been unable to complete the most simple of tasks. Like remembering to take my daily medications (which has happened twice this week and COULD account for some of my disorientation! DOH!).

I don't know where my day has gone...but I clearly recall how it started. And now, as I prepare to drift off into Slumber Land again, I'm hoping whatever smoldering fire might be lying in wait will decide to burn itself out without disrupting my sleep again. Lest I spontaneously combust...

Wish I Had Something Earth-Shattering To Say...

But, I don't.

I am surviving post IV Solumedrol withdrawal at the moment. My last dose of a three-series was at 10:00AM on Saturday and I am now (hopefully) on the downward side of the roid wave. Dr. She Who Will Not Be Named no longer does the mean Prednisone taper as it seemed to always cause...well...how shall I say? CRAZINESS. So, I am left to fend for myself with maddened adrenal glands and shocked hormones trying to rebalance an already delicate (and slightly off kilter) biological system.

As always, the steroids provided immediate relief from the horrendous fatigue. Oddly though, I think my system was already running on fumes by the time the IV Soly was introduced as I felt only a mild flight into mania this time around...which is unusual. Generally, I am able to complete a full toothbrush cleaning of my entire baseboards at 4:00AM by day three of the IV's. LOL

The bizarre facial tics and trunk tremors did subside as did the dizziness...until today...sigh. The "tics" and "twitches" have not returned, but the dreaded dizziness has begun to resurface, leaving me feeling once again uncertain of my footing and giving consideration to hurling the 500 pounds of food I have been packing down my gullet while on the steroids.

Steroid withdrawal always leaves me feeling some strange sense of disconnect from my world...as if time is passing by outside my eyes, just not INSIDE my head. Random and tangential thoughts fly by as do completely unrelated bursts of emotion. None of my thoughts seem to come with handles attached...it is quite difficult to hold onto one for more than a momentary touch, until it slips restlessly away from my hands like a slick water balloon. And then, I'm on to the next thing that enters my mind unannounced. I've found that good old fashioned napping is about the best source of comfort while I pass the "crazy" through my system.

Speaking of naps...I woke up this afternoon with the TV chattering at me in the background, only to discover one of my favorite people was featured on one of my not-so-favorite TV shows...Oprah. Dr. Jill Bolte-Taylor (you may remember her from this post) was talking about her book, "My Stroke Of Insight - A Brain Scientist's Personal Journey". If you haven't seen her brief talk linked to the post on CHEESE or read her book, briefly I will say this woman suffered her own stroke, which nearly killed her. She has a fascinating tale and way of telling information about the brain--someone I highly recommend checking out.

Anyway, not to "out tangent" myself here, I *came to* from my nap just as Dr. Bolte-Taylor was discussing with Opie the event that led to her mother's arrival at her ICU bed shortly after her stroke. Dr. Bolte-Taylor had blown out part of her brain and had no word or number recognition abilities...so when everyone was talking about "GiGi" arriving, she had no ability to recall or discern WHO this person was. Turns out, GiGi is/was her mother (who also happened to be in Opie's crowd while her daughter talked today).

I sat on my couch and listened to Dr. Bolte-Taylor talk about how her mother entered her ICU room, nodded at the doctors/nurses, and then without hesitation, walked over to her daughter's bed, pulled back the sheet, and crawled into bed with her. She lay down beside her daughter and simply held her...which was the only thing Dr. Bolte-Taylor COULD feel.

The camera on the TV show cut to "GiGi" and there was this mother of a brain scientist sitting elegantly crying...she wiped her eyes and said, to this day, hearing or talking about this incident remained difficult for her because it brought up so much emotion...not knowing if her adult child was going to live or die...she did the only thing a mother COULD do. She crawled into the bed and held her child.

I know the steroids pulsing out of my body are/were the major catalyst behind the tears that flowed from my eyes as I watched this touching moment on TV...I know the steroids make me crazy-emotional.

But in that moment in time, all I could think was, I hope when/if the day comes that I cannot feel, or hear, or see, or I remain precariously balancing on that mysterious ledge of life, someone...ANYONE...gently pulls back my covers and crawls into my bed. That someone...ANYONE...holds my place for me and finds me wherever I might be amid biological chaos.

And if it is my time to go...someone...ANYONE...gently carries me over the bar back *home*.

Getting Back To The Tysabri Issue...

Still functioning marginally well with the IV Solumedrol on board, and wanted to get posted up some preliminary information about Tysabri infusion sites. I have much left to tell about my Club Med ongoing battle of the "bull" and my complaints about their charges/costs to distribute this drug to me once a month. I'll be getting to that soon.





But I've begun to notice a lot of "hits" here on CHEESE of people searching for Tysabri information SPECIFICALLY relating to cost, so I wanted to address HOW to find a TOUCH certified infusion center near you and HOW to go about determining what they are billing/what questions to ask to see if you are eligible for their services at a possibly LOWER distribution fee than where you are getting your TYSABRI infused now (or are considering getting it infused, as the case may be).





http://www.tysabri.com/ is the website to turn to when looking for infusion information. When you first log on to the site, you will get THIS screen:
You have to click the orange button over there for "Multiple Sclerosis Tysabri Patients" to be taken to the next screen, which looks like this:

Now, here is where the Tysabri folks don't necessarily make things easily clear on their website (and I have talked with a representative about this in hopes changes might be made). Off there in the far right hand corner, you may notice a small, red connecting link that tells you to "click here" to find an infusion center near you. It's where the arrow is above.

Click that link, and you are taken to the above page, which will ask you for either your zip code or your state of residence and how far/what radius you are willing to travel to GET your Tysabri. ONLY FILL IN ONE OF THESE LOCATORS...either the zip code or the state...because the site has a tendency to "lock up" if you do both. You can still add your radius location, just not both zip code AND state.




Once you've done the above specifications, the site will soon spit out a list of TOUCH certified infusion centers near you (in whatever mileage radius you requested above). It will give you names of the infusion centers, addresses, phone numbers, how far it is located from your zip code, and whether they are accepting new referrals. I have found the "new referral" issue on the site NOT to be accurate because I've gone ahead and called some that say they AREN'T accepting new patients, and I've been told they ARE. The page will look something like this:

Once you have opted WHICH infusion centers you want to try to connect with, I suggest having a list of the following questions in hand and be prepared to write down their answers for your own notes and reference as well as WHO you spoke to on the phone. If, like me, you call several places, you will find there is a VAST difference in what each of these centers is CHARGING to infuse you! I suggest anyone on Tysabri do their own homework and find a site that BEST meets their personal, travel, and financial needs.

Here are the questions I suggest as a beginning point of reference:

1) Do you accept outside referrals from physicians not affiliated with your program such as ______ neurologist?
2) If yes, are you accepting new referrals?
3) Do you accept _____insurance?
4) If yes, what is the cost billed to ____insurance or paid by ____insurance and does this include the cost of the Tysabri or is the medication provided via an outside specialty pharmacy by my insurance company to you?
A. Or do you have a flat fee billing for every Tysabri patient?
B. Does this cost include necessary laboratory fees?
5) Do you have a "private pay" option?
6) How long have you been TOUCH certified?
7) How many Tysabri patients are you currently infusing?

I'll write more about this later...enough for now, because I'm steroidally challenged and have no more focus here!....