Here it is...proof I AM a moron and should NOT be entrusted with other people's lives...including my own! LOL
**And just to add further "salt" to my self-inflicted wound...I am now thinking the "product" I used may have been closer to 6-10 years old as the last time I can actually RECALL using it was in the year 2000! Let this be a lesson to you, kids...DO NOT TRY THIS ACT AT HOME!**
Remember that post IV Solumedrol pain I griped about last week in my wrist and thumb (and also my face)? Remember I am a nurse by training? Remember I've made some "questionable" choices about my health care a few times in the past???
Well...none of those things in the above paragraph REALLY add up to much, unless you blend them all together and know the outcome! But one more question please...did any of YOU know a product (which I shall not name out of fear of receiving the death penalty for libel) you can buy over-the-counter to use on sore aches and pains can burn the HELL out of your skin?!? I'm talking about that "product" that has the word really cold and really warm in it's brand name...yep, that's the one!
As I mentioned last week, about two days after my IV steroid treatment, I developed these pulsating pains in my left wrist and thumb. Of course I blamed the steroids, but this placing of blame did not seem to make the pains go away. And, they seemed worse at night. So, being the "good" nurse I am, I retrieved an approximate 4-5 year old container of "the product" from my medicine cabinet and started rubbing the goo on my thumb to try to relieve the discomfort. I did this for about 4 nights.
Yesterday, I awoke to a bright redness in my left hand with some raised areas around my thumb and medial wrist...it looked much like a contact dermatitis really, only quite inflamed. Being the "good" patient I am, I immediately emailed my neurologist (and called my nurse practitioner, who I was told had earned a vacation and wouldn't be back for over a week) with my questioning and self-proclaimed diagnosis of possible shingles...after all...I HAD been experiencing a weird nerve pain in my hand and now had an unusual rash...seemed quite logical to me (although admittedly, I have never SEEN shingles occur in only ONE hand before...should have listened to my inner wisdom! LOL).
Last night after work, I proceeded to wash some dishes in hot water...my hand swelled up and really burned after this and I made a mental note to myself to never do dishes again. OK, not really, but I DID wonder what the heck was happening to my hand!
This morning, I awoke with that continued "burning" sensation in the ol' hand and got up to do my standard A.M. routine, only to discover I now HAD actual burn marks on my thumb and the side of my hand!!! And what was even more distinguishing was the burn marks are long, red and appear to be exactly where I rubbed "the product" in a convenient "V" shape with my other thumb!!! I had to sheepishly email Dr. She Who Will Not Be Named and advise her to "never mind" and probably "never be concerned" about my self-proclaimed diagnoses again! LOL But at least I can admit when I'm wrong...right?!?
So now I'm forced to walk around with this weird "V-shaped" burn on my dominant hand...it really looks like I've been branded to sell at market! But I've learned a few very important lessons from this experience:
1. Never use a really old OTC product...the contents really MAY expire and cause you harm (I'm not sure that's what happened, but I'm not taking any chances anymore either!).
2. Wait 24 hours before contacting "the authorities" with any self-proclaimed and definitive diagnosis...it will save future embarrassment AND, if it hasn't killed me in 24 hours, it probably won't!
3. Most things will probably heal much faster and easier if I learn to just LEAVE THEM ALONE...medical/nursing judgments aside. My body is really smarter than my mind...
Most go now and prepare for work and ridicule with this mark of "Vern" chemically seared on my hand...I'm frantically working on some type of alien abduction story to tell my coworkers...yeah, that might save me...LOL
Note the odd angle of the photo...it's quite difficult to take a self-portrait of the back of your own head with a hand-held digital camera and a CAT ON YOUR SHOULDER!!! And it looks like I should have spent a bit more time in PhotoShop brushing out the grey in my hair and adding hair to my bald spots...LOL
This IS a typical shot of me at my computer...the cat is always there on my shoulder...like a ten pound sack of potatoes or a really, really large growth! As you can see (or "if" you can see), I am reading the most recent entries by Suzy over at Bliss (link is on the side bar...drinks are on the house. LOL)...She's back posting thank goodness. Not that I've grown tired of all you other MS bloggers out there. I just missed her and the "Memaw" stories, that's all!
My weekend is over almost. Just a few, short hours and then I must hit the hay once again to try and find some quality sleep before my all too early alarm goes off and summons me like a sombie back to work...time sure does fly by when you're doing nothing!
Today, I almost did some yard work...but then I laid down and took a very brief nap instead. So, unless you'll allow me to count "almost" completing any tasks this weekend, I've basically done NOTHING. I did make one meal out with Saint EB and my laundry is spinning cycles in the other room, but that's it...nothing to show for my 48 hours of being home, except a lengthy and boring BRAINCHEESE post yesterday.
I "almost" thought about going to a movie...and I "almost" thought about a trip to the park since the sun was shining today. I almost got up once to start sorting through some piles of papers I need to file...almost made it to the store for some shopping and almost read some pages of a book...almost...but I didn't. My "almost" life seems far more active than my REAL life! LOL
I've got about 2-3 more ALMOST hours before I need to extract this cat from my shoulder and go to bed. Maybe I'll almost find something else to complete during that time...
The long-awaited Novantrone lecture...filled with some actual medical data, a splash of opinion, and a drop of speculation...compiled just for YOU! Please note, no references will be sited so that I cannot be sued by the Mega-Pharma companies...LOL But you, too, could hit the search button on your Internet and find some equally "riveting" information I am sure...
Novantrone...Mitoxantrone (pronounced "my toe zantrone"), was first approved by the FDA (Big Boy Federal Regulators) waaaay back in 1987 for the treatment of pain related to advanced hormone-refractory prostate cancer and acute nonlymphocytic leukemia...A little ol' company called, "IMMUNEX", developed it...it's been a money maker ever since.
But did you know (and I quote an unreferenced source!) "Mitoxantrone, a DNA-reactive agent, intercalates into deoxyribonucleic acid (DNA) through hydrogen bonding, causing crosslinks and strand breaks. It also interferes with ribonucleic acid (RNA) and is a potent inhibitor of topoisomerase II, an enzyme responsible for uncoiling and nonproliferating cultured human cells, suggesting lack of cell cycle phase specificity."
Whew!!! Now what the HECK does all that mean?? Well, frankly I don't really know either...LOL But, in lay man's terms, it means Novantrone's mechanism of action is seen directly on cellular functioning, specifically the immune system and blood cells. I added the last part as the above explanation doesn't point specifically to the immune system OR blood cells...but just trust me here...that's what the drug does! It suppresses the immune system by interfering with how cells are made, specifically white blood cells (thus, it's effectiveness for treating specific types of leukemia...a blood cell disorder.)
Anytime a drug interferes with or destroys cells in the body, it is often referred to as an "antineoplastic agent" or a "chemotherapy"...Novantrone falls into both of these categories (but, it's really just splitting hairs to separate them...not all chemotherapies are considered antineoplastic agents...minor detail!).
We usually hear the word "Chemotherapy" used in reference to treating some type of horrible cancer which, in case you've forgotten, MULTIPLE SCLEROSIS IS NOT. As we all recite over and over in our MS classes, Multiple Sclerosis is THOUGHT to be a disorder of the immune system that attacks the nervous system by destroying the myelin sheath surrounding the nerve tissues of the brain and spinal cord.
Blah blah blah...I do much better with a visual myself. So, I like to think of MS as a nasty, little bunny that's hopping around in my brain and spine, leaving " poo pellets" randomly wherever it feels like it (AKA, plaques or lesions). I HAD a mini-lop rabbit indoors for a pet...trust me...they defecate in random patterns and will leave you puzzled HOW they can do it so often! But I digress...
The current school of thought about the causative factor of MS (among MANY, MANY theories) is, the immune system/white blood cells cross over into the blood/brain barrier (that odd fantasy line of demarcation where blood and spinal fluid meet) and enter ready to do battle...but the white blood cells are confused, because they're not SUPPOSED to be there (kind of like the US in Iraq...I digress again) and all they know to do is to destroy what they've been pre-programmed to. And for some unknown reason, these little buggars seem to think they've been programmed to destroy myelin (perhaps they only need a "Re-education Camp?!?).
Sooo, if Novantrone inhibits the production of white blood cells and even destroys white blood cells in the body, the immune system of a screwed up MS patient has less "soldiers" floating around to do battle...rogue soldiers AND good soldiers...but I'll hit on this hot topic later.
In 2003 (November, to be exact), Big Boy FDA reviewed a few studies that had been done using Novantrone to treat MS. They liked what they saw and said, "Hey. Why NOT give the approval for this drug to be sold for MS treatment as well?" And that's really all their "approval" amounted to...giving IMMUNEX the go ahead to MARKET Novantrone for MS treatment...and, make some more money on another population of needy, ill people. (Although I should probably check because I doubt it is JUST IMMUNEX making the money...I believe Mitoxantrone, the generic label, IS produced by more companies than IMMUNEX now...but that's only speculation and NOT speculated fact...LOL)
The studies/drug trials the FDA reviewed actually had some mixed reviews. The trials DID show that "it appeared mitoxantrone may have a beneficial effect on disease progression in patients with MS whose clinical condition is deteriorating" and it was "probable mitoxantrone reduces the clinical attack rate and reduces attack-related MRI outcomes in patients with relapsing MS". They went on to say, "In general, however, this agent is of limited use and of potentially great toxicity and should, therefore, be reserved for patients with rapidly advancing disease who have failed other therapies". The FDA approved the use of Novantrone for Secondary Progressive, Progressive Relapsing, and Worsening Relapsing and Remitting MS.
Toxicity??? Did you catch that word in the last paragraph?? It was kind of "snuck" in there, wasn't it? But, yes...Novantrone CAN be quite toxic...remember, it KILLS stuff in the body! And, as we are learning in Iraq, you can't just go around killing things without consequences...
So, currently Novantrone/Mitoxantrone is carefully administered to MS patients...to avoid TOXICITY. There is a life time limit or amount of the drug any one person with MS SHOULD get...it's what the FDA recommends, so most doctors follow the Big Boys to avoid lawsuits later. The FDA recommends no more than a life time dosing of 140mg/m2 (can't make that "2" hang higher, sorry!)...translated, it's based on body weight. The usual course of treatment is somewhere between 2-3 years or 8-12 doses. However, based on MY size, I could conceivably be on this "juice" for 10 years! (I'm kidding, really!)
Novantrone for the treatment of MS, is usually given every three months via IV. Don't ask me why because I don't know...I can only speculate (I love that word!) it has to do with the amount of time it takes the body to recover before being "immunosuppressed" again...which leads me back to that word TOXICITY.
In the world of duality, all good things have an equally darker side. Novantrone does not escape this fact. Two of the primary problems or "extra" conditions Novantrone can cause are Congestive Heart Failure (CHF) and a specific leukemia called Secondary Acute Myelogenous Leukemia (AML)...You guessed it...AML IS a type of cancer (odd that a cancer-treating drug could CAUSE a cancer, but it can).
So, because Novantrone carries its own potential demons, both the heart and blood work must be checked (by Big Boy FDA recommendation, so you KNOW it will happen) prior to each dose every three months. An echocardiogram is usually used to monitor the heart's functioning and standard labs are drawn to monitor the suppression of the white and red blood cells as well as platelets. If a problem shows up in either one of these tests, you might as well kiss your Novantrone goodbye...your drug days will be over...there's likely NO ONE, except Dr. Kevorkian, who will hook you up for an infusion at this point!
And, of course, I shouldn't forget the other "adverse effects" Novantrone can cause...it just doesn't bring out the best in us! Most references list the following as possible side effects...not everyone will have them and some lucky B-turds may have none:
*Nausea
*Hair thinning or hair loss
*Hypotension (low blood pressure)
*Rashes or mouth sores (stomatitis)
*Susceptibility to other infections such as urinary tract
*Menstrual disorders (seriously boys, no worries here)
*Diarrhea OR Constipation (because you can't win for losing here!)
One of the other "potential" side effects, which I actually wouldn't mind having (as I think it might be "cool"), is a bluish discoloration of your urine...and even for some, a bluish discoloration of the whites of your eyes. Neither is said to last more than 24-72 hours, but I seriously wouldn't mind a bit of robin egg tint to my pee...how exciting is THAT?!? The discoloration is caused by the blue color of the liquid infusion...haven't seen a bag of it myself, but I've heard Novantrone referenced as the "blue juice" or "blue Kool-Aid". I'm wondering if my personal bag could be tinted purple...it's a favorite color!
Let's see...check, check, check, covered that, and that, and...Oh yeah...the most important part of this post (because it IS all about me) is, I have consented to the Novantrone...reluctantly...hesitantly...kicking and screaming-ly. I've done my homework and I will admit begrudgingly, Dr. She Who Will Not Be Named is probably right...it makes more sense to try and stop this progression of my "aggressive" MS now, before I lose even more neurological functioning...before I can no longer refuse things "kicking and screaming-ly".
Let's face it...I rather like my independence. And my mother used to say, "That which doesn't kill us, makes us stronger". I shared that statement with Corrine several weeks ago...but had to add, "My mother is dead now, however. So she's lost a bit of credibility with me!"
Now go find something more productive to do with your time...class dismissed...
I'd love to tell you more about that title, but I can't. I'm bound by confidentiality laws to NEVER repeat even the funniest of stories about my job...that's because, A) mental illness isn't supposed to be funny, and B) for all YOU know, the story could be about you or one of your family members! But that certainly is an intriguing quote, isn't it? LOL
I've been spending way too much time at my job lately...I say this mostly in comparing my month of December, when I spent NO time at my job, to now...being back full time again. At one point this evening, I began to think there was no way I could possibly go another step...I began to believe I truly was disabled...I began to fantasize about being home on my living room couch curled up under a blanket...and then, I completed my work tasks anyway (in spite of myself) and came home.
One of the most troubling things I've noticed in my functioning since my last relapse is the fact I'm much SLOWER mentally than I used to be. I seem to have lost my "edge" for multi-tasking...my cognition is spinning about as quickly as a windmill on a still day. I seem to get overwhelmed mentally by what used to be the simplest of tasks...and I haven't quite yet figured out how to work around this or compensate.
Fortunately, I have this weekend off to recharge my depleted battery and try to focus on something else BESIDES work. I have nothing pressing on my "social calendar" (like I really keep one anyway?!?) and I can just let myself REST...something I'm really needing right now...just emptying my mind of all thoughts and responsibilities...no ferrets to tend to...just me and my devilish cat.
Now there's a weekend to look forward to...
It's true...even when I IMAGINE I can stop time, life just keeps on whirling by! And lately, it has seemed to be spinning at an extraordinary cycle. Here it is almost the end of January and I'm still wondering what happened to Thanksgiving and Christmas! LOL
So, let me catch "all y'all" up to speed on the recent happenings of MY life...no matter how mundane and boring...just DEAL with it! LOL
Let's see...I think my last worrisome posts (OK, maybe "worrisome" isn't the correct word. How about "anal-squeaking-tight-obsessive-neurotic?!?) began with lamenting about WHY I had begged so strongly to go back to work on full-time status...only to discover my eyes were bigger than my belly (I'm not 100% sure what that saying means, but I know my mother used to use it, so I feel compelled). I seemed to have worn myself down to a nub after only four, consecutive days. And, true to my nature, I blamed "someone" else and became a WHINING WUSSY! I have since had several days off to recuperate and return back today with hopefully a "bigger belly" and a bit clearer vision. LOL
On Friday of last week, I also went in for the first (and now the last) of my monthly IV Solumedrol infusions. But once again, as is true to MY nature, I developed a horrendous case of insomnia, lasting 40+ hours...after FINALLY getting a piece of the "shut-eye pie" Saturday, but not enough to fill my sleep void, I slept a restless few hours Sunday night. I awoke Monday morning with considerable fatigue (but who WOULDN'T, given my lack of real sleep?!?), a deep ache in my left shoulder, shooting/sharp pains in my left wrist and thumb, and sharp, stabbing pains in my left cheek...not a "good" day...but before I get into THAT story, I need to rewind the tape a bit and discuss my visit with Jade, my mentor and friend.
You may recall my whining lament about my mentor/friend who I haven't seen in over 11 years (and when we began to count actual dog years, it was closer to 13!) coming for a brief visit over the weekend? I was obsessing about cleaning my sty and whether or not she might mistake me as the Good Year Blimp at first sight, given my propensity to pack on pounds in the last decade? Well...once again, true to my nature and the way "odd" things seem to unfold in my life, Jade DID visit, but not without having to meet her at the local EMERGENCY ROOM!!!
Simmer down now...the ER wasn't for me. However, one of the women she was traveling with developed some strange, abdominal pain over the weekend. On the way to my house, the pain only seemed to intensify, so they veered off at...drum roll please...you guessed it...MY LOCAL CLUB MED ER!!!
Jade called me from the ER and, after several phone calls back and forth, I finally decided to poke my head in at Club Med and simply meet Jade there. Typical. We spent a few hours at the bedside of a woman I did not know, trying to console her in her agony. I sheepishly kept watching for signs of ANYONE who might recognize me from MY visit to this ER a month ago...I feared I might have become somewhat of a hated celebrity in my previous delirious visit as I tend to become "verbal" when under the influence of high-powered drugs! LOL
With what was left of the evening, we did make it to a local seafood joint and broke bread together, laughing and catching up on old times. Then we returned to my SPOTLESS home and both fell silently into a stupor. Our alarm clocks chimed way too early in the morning and the near dawn drive to the airport (OK...it was really 9:00AM, but anything before 10:00AM seems like "dawn" to me!) came all too quickly. We had maybe spent a total of 3 hours together without IV alarms beeping and the sounds of vomiting...but we DID recognize each other in those short hours...all in all, it was a good visit.
Now, back to the steroid/no steroid issue. If you read yesterday's post, you'll be pretty much caught up to speed...To be Novantrone, or not to be...that is the question. And a question I just don't have a great answer for as of yet. I'm hoping to be able to do a lot more reading of the drug study materials, etc., and thenI will make as informed a decision as I can. I suppose I "shant" take too long with this decision given Dr. SWWNBN blatant statements about my potential impending "doom" of neurological status! LOL I spent most of yesterday researching on the Internet any articles I could find about the drug...not a lot of recent information out there for us lowly MS patients...damn drug companies!
And finally, after making myself sick from reading my computer screen and ingesting the multitude of "problems" that can occur from Novantrone (for those of you "not in the know"...Novantrone is a chemotherapy agent used to treat MS sometimes, when either the MS is progressing too rapidly or other treatment options have failed or not been optimal...I'll delve more into this in a later post), I dressed myself in semi-dress clothing and met Saint EB for a concert. She had purchased Natalie McMasters tickets (fiddler) for my Christmas present (damn nice of her, eh?!?) and we spent the evening in the great concert hall (Benaroya) in Seattle, listening to one of the greatest fiddlers of this century set pace for the symphony...truly a wonderful evening.
So now you are caught up to time and date...a most exciting life I lead...LOL I will report in for duty today in just a few, short hours, and see what fresh hell awaits me at my employment. I hope I can stay awake, stay upright, and stay focused...minor details for maintaining my job! LOL
Change of plans...the FOURTH original plan for my continued MS treatment is now up for grabs again. Since begging Dr. She Who Will Not Be Named NOT to give me any more IV Solumedrol after last Friday's extravaganza response, discussions of the "plan" are back on the table.
Dr. SWWNBN is pushing Novantrone...I've PUSHED back...neither of us have had much success with our shoving match, so it looks like we are now operating in more of a collaborative mode...and I am left "thinking".
I don't WANT Novantrone...the doctor worries even if I qualify for the FTY720 study this summer (the soonest I COULD possibly qualify since I received IVIg last month) I may be (and I quote her), "too far gone neurologically to be benefited". OUCH!!! At least she shoots straight from the hip I guess...no mincing of words there.
So...I am left THINKING...would y'all quiet down please so I can concentrate??? LOL Or, better yet, throw me a comment if you have any experience with Novantrone, know anyone who HAS had Novantrone, or just have some sort of a "sign/omen" you feel compelled to share! I'll just be sitting over here...thinking...
I WISH I were talking about body measurements here (well, maybe not the "40" one!), but I'm not. I'm talking about the HOURS I'VE BEEN AWAKE! Steroid-induced insomnia...it's never a "good" thing...
I'm not exactly sure what has happened to me this go round following my one dose of Solumedrol yesterday. I don't ever recall suffering from insomnia to THIS extent after only one dose of the "juice", but I have rapidly moved into my second day of being continuously AWAKE! I will need to remember to ask Dr. She Who Will Not Be Named if I got the customary dosage or something a bit higher since I'm only being popped with one IV a month now...that is, if I don't become completely bat-sheet-psycho-circus-freak-crazy in the next several hours and do the thing I fear the most...running naked down the street screaming!!
I started sucking on the psych meds a few hours ago in hopes there might be something in my medicine bag o' tricks that might sedate this raging elephant (which just reminded me to go take ANOTHER Klonopin)...so far, I'm still standing. Why God, why??
The headache I got immediately post infusion yesterday is just a dull ache now, but the nausea has remained fairly constant today...I'm starting to wonder if I didn't contract Ebola or the Hantavirus while trolling for patients in the ER's this past week. LOL I DO try not to lick my hands after being in those disease-infested areas of the hospitals, but some "bug" may have snuck up on my already weakened immuno-defensive system...this would certainly explain the unusual and new symptoms following my Roid IV.
Whatever the cause, I will be checking Craig's List shortly to see if I can find a pygmy for hire to blow dart my arse if I don't fall down in a drug-induced coma on my own fairly soon! The good news (if there can be any found in staying awake nonstop for two days) is, I have been able to channel some of this restless energy and do some deep cleaning in my sty...I will puff up and brag a bit here to say I believe you could serve a meal off my bathroom floor right now, it is sooo sparkling/Cloroxed/disinfected clean! Of course, I've probably knocked off another 10 years on the life-span of my liver from BREATHING all those toxic fumes!
But seriously, Gwen...you COULD eat off that Sh!+!!!
Was it Jackson Browne who sang that song, "Running on Empty"? I curse him...
At least the "I'm Dreaming Of A White Christmas" has left my brain from earlier snow storms this week...unfortunately, it's been replaced today with, "Runnin' On Empty"...repeating over and over in my little pee brain as though a personal theme song.
Admittedly, I'm just DAYUMed tired! I checked my internal "tank" this morning and realized I was critically low on fuel...I burned it all up working four days this week back in my full-time rotation at my job and I forgot to keep any "emergency" source available to me. (Yes, for those of you curiously wondering what the heck I was referencing in my geometry lesson the other day...it was, of course, about ME and difficult lessons learned from ASKING for what I get!)
Unfortunately, I DID have to get up this morning, make myself presentable, and report in at my favorite Club Med location for an IV infusion of Solumedrol...this is the latest course of treatment for me...monthly IV Solumedrol until sometime this summer when I may qualify for the FTY720 study via Dr. She Who Will Not Be Named. Dr. SWWNBN "forgot" to tell me I would have to wait SIX MONTHS after her Voodoo Medicine of IVIg before I can be considered for the drug study! Or, maybe she DID tell me, but I choose to blame her...it just makes my life simpler. LOL
Anyway, I made it to my infusion appointment only 5 minutes late (friggin' miracle if you ask me given my A.D.D...Arse Dragging Disorder) and the lovely infusion nurses hooked me up to my current drug of choice. Saint EB met me at Club Med and entertained me for over an hour...I've begun to think my dear friends are "worried" about leaving me alone in medical establishments, thinking I'll either wind up ADMITTED or just caught stealing toilet paper or something! LOL
Anyway, I got the "stuff" mainlined and found myself even more exhausted than on arrival AND nauseated with a headache...it's ALWAYS "sump tin"...after making sure my skinniest of thin friends (Saint EB...for THIS I DO despise her!) ate a healthy meal and I inhaled whatever was placed in front of me, I returned home with hopes of cleaning my hut/sty before my mentor, JADE, arrives on Sunday. Alas, cleaning was a lost cause...
I have instead dinked around on the computer, wandered from room to room "touring" my unnatural disaster in my home, and I am considering applying for emergency FEMA funds to assist with the clean up. I wonder what the "Bush" and "Brownie" would say about THIS mess?!?
And now, instead of cleaning (I seriously have no energy OR ability to push a vacuum), I am retiring to my living room couch...I have given up on the idea that my repeated and constant presence there is messing up my Feng Shui...I have now accepted my arse on the sofa only ADDS to the allure of my home! Much like a pig adds to the Feng Shui of a sty...
Last week, I received a phone call from a wonderful, "old" friend who I haven't seen in well over 11 years...she is making a brief stop in Seattle from the Midwest this weekend and wanted to get together...of course, I invited her to stay at my home! I HAVE remained in email contact, the usual cards on the birthdays and holidays, and occasionally a phone call every year or two. We are certainly not close friends by any standards, but we ARE kindred souls...which can sometimes be an even stronger bond.
I met Jade while living in Texas (and I've been in Seattle almost 11 years!) through a woman's spiritual studies program...she is the founder of RCG and was my advisor and mentor in the program. But since moving to Seattle, I took a leave of absence from the program, became involved in "life" here, and never continued my studies.
It's so strange to KNOW someone and yet not really "know" them at all...two very distinct and completely separate things. Jade is one of those people in my life who's presence I feel even without having much contact at all. And yet I worry about our upcoming visit...
I worry I have grown old, fat, and cynical since I last saw her. I worry she would not recognize me at the airport without a sign. I worry our lives are so incredibly different it will be hard to find mutual topics of conversation to pass the all too brief time she will be visiting. I worry my home will not be sparkling clean and inviting (because of my recent energy level) or in some way uncomfortable. But mostly I worry that feeling of connectedness I have with her will somehow vanish when in her presence because it is somehow an illusion.
I hope our visit goes well and, for the most part, is just like "old times"...but so much has happened in my life over the past year, five years, and decade. I hope we will BOTH recognize each other even midst these changes and that sense of "kindred souls" becomes all that matters...even if she does notice I've grown fat and old!
What goes a "round", doesn't always come a "round"...sometimes it comes back and "squarely" hits you in the head.
I'm getting my hair cut FINALLY today...I was starting to look like Shaggy from Scooby Do!
For a brief time, I thought I might have died during the past two months of my "relapse situation"...but since my hair and nails have continued to grow, I MUST still be among the living! LOL
URBAN LEGEND #1:
To quote the respected forensic anthropologist William R. Maples:
"It is a myth that fingernails and hair continue to grow after death. What really happens is that the skin may retract around them, making the hair and nails prickle up and jut out more prominently. Erich Marie Remarque, in his novel All Quiet On the Western Front, imagines a dead friend's nails growing in weird subterranean corkscrews after his burial. It is a powerful, disturbing image, but it is purely moonshine. No such thing occurs."
Just thought you should know...why, I have no clue...
I am ready to SLAP whoever wrote that "I'm Dreaming Of A White Christmas" song...it's become a nasty earworm in my head! And, Christmas has been over for nearly a month now...yet, here in Seattle, we're still living through the "white" part. Yes, it HAS snowed AGAIN in my beautiful Puget Sound.
I awoke this morning to the sound of the Devil Kitty meowing and pawing at my bedroom door...this is a typical alarm clock sound for me as she USUALLY decides my wake up time, regardless of my fatigue or schedule. But what I hadn't planned on discovering when I slipped an eye out my bedroom blinds was THREE MORE INCHES OF SNOW!!! A heavy blanket of "white" covered everything and made it difficult to distinguish what shapes lay hidden under its cover.
Now, under "usual" circumstances, I would most likely be thrilled by the beauty of it all...it is generally a rare occasion to get any snow at all in Seattle. But this is the THIRD time it has snowed here in less than TWO weeks! I say, "Enough already".
We here in the Pacific Northwest Maritime region have no concept for "snow" and very few defenses. Snow plows, shovels, ice scrapers, snow boots, snow routes, long johns, gloves, etc., are all things that normally remain hidden in our closets until SKI SEASON...and ski season means we are DRIVING to the mountains to see snow, leaving our cozy homes and rainy streets behind to partake in something "else". This is just not NORMAL!
And to top it all off, I will be out on the streets of the county today in my job, driving in this mush and slush...not a pretty proposition in my mind. Fortunately, I will have another coworker to do my bidding as I ride "shot gun" in one of the worst winter scenes I have witnessed here in the past 10 years.
So, I have to go now and dig out some long johns, find my winter boots, look for a pair of gloves WITHOUT holes in them, and say a prayer for safe keeping...this has to be the WORST week in the history of my career to have BEGGED to return to work on full-time status following a relapse! If I didn't think it might come full circle and bite me in the arse, I'd be "tempted" to FAKE another just to get out of my current predicament!! LOL
LESSON LEARNED: Be careful what you ask for...
Oh come on! Who CAN you poke fun at if not the President's command (or lack) of the English language??? And "misunderestimate" kind of sums up my return to work today...
Maybe I should have thought this "full-time" status out a bit more clearly because I was COMPLETELY unprepared for my entire 9.33 hours today...and here I THOUGHT I had everything in order...I guess I somehow forgot to ASK my body if it was in on the plan.
Today was a "govmet" holiday, which meant my office staffed what we call "skeletal" staffing...meaning we run the show with a few less people, but still cover the same geography and case load. Back in the day, holidays WERE a time when, for whatever reason, our clients just weren't referred to us as often. But over the past 3-5 years, mental illness has not been TAKING a holiday and our case load has only INCREASED instead of decreasing! Today was such a day...
I arrived at my "post" prepared to triage the phones and staff with the utmost of confidence...when we triage (or "screen", as we like to call it), the person in charge of the phones controls the workload and how the work gets assigned. The screener never leaves the office and is allowed to "dress down", which usually includes a pair of blue jeans, a T-shirt, and flip flops or tennis shoes...we become simply a voice on the other end of a line taking information and answering questions. I was dressed in my most comfortable, "Sponge Bob, Square Pants, Leave My Brain Alone" T-shirt, jeans and tennies...I was "zen" and I was comfortable! LOL
Immediately upon my arrival, the phone system began to ring...it never stopped for 9.33 hours...my comfort and my "zen" quickly faded as my bladder filled, my neck cramped with the receiver crammed against my ear, my patience grew short, I grew hungry, and an unusual amount of "stupid" people called (I only refer to other professionals in the mental health field with the "stupid" adjective...NOT clients!). I became buried in paper within only a few short hours.
I began to curse out loud and cursed the phone...then cursed myself for my over-eager "I can do anything" approach...and finally settled on cursing Dr. She Who Will Not Be Named, my physical therapist, my psychiatrist, and anyone else who even remotely played a role in my health care! It just seemed a "healthier" approach to curse others rather than myself. LOL
Finally, at 11:30PM, the next shift of unsuspecting staff arrived to take over the reins, and I was released from triage. I had a permanent phone receiver impression on my left ear, my shoulders had to be manually lowered with external force, and my arse had to be extracted like putty from my chair...I was truly BACK AT WORK!
Yes, I KNOW I have no one but myself to thank for this...but...I am making a written list of who to blame!!!
The torture has ceased...I am now "officially" released from Physical Therapy! I just saw Madam "Z" this morning and she has given me the green light AND her blessing to go full throttle ahead...it's a good day.
I have to say (which I CAN say here in the safety of my own blog!), I think Madam "Z" may be in cahoots with Dr. She Who Will Not Be Named. I have unfortunately had to add her to my list of suspects that have tried to kill me recently. LOL Last week, she made me so sick from all of her inner ear/flip me around/spin me like a top moves, I FELT as if I might die...and if not death, then vomit, which in my book, constitutes the same thing! LOL
I have decided I must suffer from a very serious mental disorder called Masochism. Webster defines this word as: "an abnormal condition where pleasure is derived from pain, humiliation, etc." The strange thing is, even with all the PAIN and HUMILIATION inflicted on me by Madam "Z", Dr. SWWNBN, and my various other providers, I STILL oddly LIKE them! AND...I continue to PAY them for their services.
But if I'm masochistic, what does that make THEM???...Hmmm...they DO seem to take great pleasure in their roles as well...
Tomorrow, we take pause to remember Martin Luther King, Jr...to some of us, it is a solemn day of "remembering" a time not so long ago when injustice was the rule in our country...to some of us, it's just another paid, government holiday when our mail will not be delivered. And still, to some, it is a day of reckoning...a day to tally the balance sheet and determine if the "dream" Martin Luther King spoke so fondly of has EVER been realized in this country...HAVE we become a country who honors those five, simple words in it's constitution: ALL MEN ARE CREATED EQUAL?
I look at my country today and I worry. I worry about the inordinate amount of young, black men institutionalized in our prisons, where African American skin outnumbers any other race by nearly a 50% margin ( United States - Punishment and Prejudice: Racial Disparities in the War on Drugs ). I look at the poverty levels in America, with the realization in 2003 alone, nearly 24.4% of Black Americans were living below the poverty level ( Census Bureau says 1.3 million more Americans in poverty - Aug. 26, 2004 ). I observe the high school drop out rates in America and note 13.1% of all races of high school drop outs in 2000 were young, black Americans ( Dropout Rates in The United States: 2000 - Table 3 - Status dropout rates and number and distribution of dropouts of 16- thro... ). It is because of these statistics I worry Mr. King's "dream" may still be merely a cloud in the sky.
Most of us only recall the famous words of his monumental speech on August 28, 1963..."I have a dream", or his quotation from what he called a "great Negro spiritual"..."Free at last. Free at last. Thank God Almighty, we are free at last." Some of us are too young to remember the speech at ALL and have only read it in text form (I would be one of those "some of us"). Some of us are too young to even recall segregation and can not imagine what an "all white" or "all black" school would be like...but it happened here...on American soil...to our American people.
HAVE we become a country where there is a practice of living our constitution by which "All men are created equal"? DO we treat each other with respect and kindness regardless of the color of our skin, our sex or sexual preference, our disabilities, our religious choices, our languages, our differences? I worry...
There is a paragraph from Mr. King's famous speech which, if taken out of context, STILL addresses so many of the struggles we as a people face today in America, and not just Black Americans. And I am certainly NOT trying to distract from the struggles of African Americans on this sacred day...but we "Americans" have a long way to go before ANY dream is realized in this country. We, as a people, can still learn from Martin Luther King, Jr.:
"But there is something that I must say to my people, who stand on the warm threshold which leads into the palace of justice: In the process of gaining our rightful place, we must not be guilty of wrongful deeds. Let us not seek to satisfy our thirst for freedom by drinking from the cup of bitterness and hatred. We must forever conduct our struggle on the high plane of dignity and discipline. We must not allow our creative protest to degenerate into physical violence. Again and again, we must rise to the majestic heights of meeting physical force with soul force."
It's a shame MLK wasn't whispering THIS part of his speech in the ears of our leaders when America began our "War On Terror"...just a thought...
It's over and the fat lady ain't singing...I'm talking about my beloved SEAHAWKS and their match today with the Chicago BEARS. My birds of a feather lost fair and square...
I'm just really fortunate I DID NOT bet Miss Suzy over at http://miss_suzy.typepad.com/my_weblog/ on THIS game...she is a die hard BEARS fan and I have already lost my shirt earlier this year on a Seahawks/Bears match up. No consolation packages from the Great Northwest will be sent to the windy city after today's game!
(And, by the way...has ANYONE heard from Miss Suzy? I type this to either force a response or align with those of us missing her. I keep checking her blog, but nothing has been entered since January 3rd...)
So, I'm off now to take my blood pressure medication (the game DID go into overtime) and try to figure out what I must get done today around the hut. It's a sad day here in Seattle...but it really wasn't THAT great of a day prior to the loss! LOL
1. Rubber-tipped canes provide absolutely NO traction support on ice.
2. It CAN snow twice in one week in Seattle.
3. When the weather man says, "snow showers", there is no rain involved in the "shower" part at all.
4. I wondered where all the cat toys had disappeared to...behind the wash machine...now I know.
5. There are many kinds of Ethiopian foods because there are many tribes of Ethiopians.
6. Some of my coworkers can't spell worth a darn.
7. Vertigo happens in the strangest of places and circumstances.
8. "Tube socks" are an essential wardrobe item when wearing a calf-high plastic brace.
9. Some people don't care if you hear their story, just as long as you let them talk.
10. Laughter to the point of nausea isn't necessarily a "good" thing.
11. My laundry will NOT wash itself...who knew?
12. Some people take great offense to the idea of wearing dirty underwear.
13. Just because "they" say it's getting darker later, doesn't really make the day any longer.
14. The President has no idea how to fix the mess he's created in the Middle East.
15. Turning my cell phone off before I fall asleep could be a good practice to avoid early morning calls.
16. Always write down new invention ideas with either a drawing or explanation...that way, when you stumble across cryptic notes, you'll have some idea what the heck you were talking about in the first place.
17. Dr. SWWNBN can sprint pretty fast when on a mission.
18. Cat litter on a cold bathroom floor with bare feet just plain sucks.
19. You CANNOT train a cat to do anything.
20. Nobody really notices if you don't iron your clothes...or at least they don't tell you.
21. Not being able to drive really limits one's already destitute social life.
22. I HAVE no social life.
23. Old friends, like old pennies, DO come back to you...even after 10 years.
24. Trying NOT to laugh during a serious meeting just makes me WANT to laugh harder.
25. Losing weight will not happen just by thinking about it after eating a twinkie.
26. Exercising more will not happen if you don't get up and DO it right after eating a twinkie.
27. Never place your toilet paper on the shelf over your right shoulder if you get severe vertigo while looking over your right shoulder.
28. There's just not a "good" place to throw up if you're already sitting on the toilet.
29. Homemade treats attract friends like flies to honey.
30. When you've got nothing productive to say, making a list of the things you've learned by accident just fills space, but doesn't prove to be very useful.
And to all you Naysayers and ye of little faith out there...I give YOU the Raspberry!!! Let the "happy dance" begin...
The "form", AKA, my release to return to work on full time status, has been signed, sealed, delivered, AND approved by my employer...and ALL Y'ALL thought I couldn't pull this one off! I guess to be quite honest (I DO hate honesty at times), I really wasn't certain I could pass the "neuro sniff test" either! LOL But, Dr. She Who Will Not Be Named signed on the dotted line earlier this afternoon, faxed the "form" to my office, and the cogs of bureaucracy spun in my favor...I will be returning to full time hours on Monday.
**Stepping left, stepping right, one spin and clap...the "happy dance"**
The arctic glacial chill that has settled over Seattle seems to have worked to my advantage this week via cancellation of my neuro appointment yesterday. I was able to obtain said "signature" on the "form" without having to see Dr. SWWNBN...almost...I was so close I could smell the victory in the air.
The emails went back and forth yesterday about the "form" and, being the ever-cunning patient I am, I had by the end of the day convinced Dr. SWWNBN she could simply sign off her name and all would be well. Today, I delivered the "form" to her office for her John Hancock right at noon (of course, on the way I slipped on the ice once with my cane going down hill and did a very not-so-graceful dip to the ground...no head injury, I am pleased to report! LOL). I quietly slipped (pun intended) into the office to whisper to her office staff what I needed. I didn't want my voice OR my scent to alert the blood hound doctor of my presence...she might, after all, DEMAND an exam!
It was almost a bust when her delightful and pleasant staff informed me the doctor was "in" and made motions as if to retrieve her...I frantically waved my arms in quiet motion (because I feared she might "sense" air moving in the lobby and come to see what was happening) whispering, "No no. That's the point. I don't WANT to see her!" They nodded in acknowledgment and smiled sheepishly...I held my cane close to my side as a protective weapon should I have to wield it as such.
Breathing a sigh of relief and a thankfulness for their colluding souls, I quietly slipped out the front door and headed toward the elevator...the doors were just closing as I approached. I pushed the button to await my coach to take me to the nearest exit, smiling with my head slightly tilted in smug pride. I had won the battle...whatever that meant. LOL
I stood silently at the "vator" contemplating just what I may have actually won...a solid trip back into the mines full-time...some of the idea appealing, some of it not. As I have said earlier in the week, I don't actually KNOW if I'm ready for the demands of my job full-time...my left leg still bothers me, fatigue has become a constant guest, my vertigo continues to rear its ugly head when looking to the right or up, and I haven't even TRIED driving yet.
But what I DO know about myself is this: Many times I have thought I couldn't possibly do something because of one reason or another...then, when I try it, all is well. My personal M.O. about THIS particular issue falls into the above category...I won't know if I can do it until I try it. And if I don't "try" it soon, I fear falling into some disabled complacency, at least in my mind...allowing myself to be "gimpy" because it is easier than pushing myself.
So THIS is what I have "won"...a mental battle over myself really. An "idea" about myself that I must try out while I still have the drive and desire to do so.
I listened to the elevators push and grind their way up and down as I stood in contemplation. Then suddenly, like a shrill bird screeching in the distance, I heard the loud call of Dr. SWWNBN just around the corner saying, "Stop! You can't get away from here without seeing me!" Damn, damn damn...the blood hound was hot on my trail.
I considered a frantic search for a stairwell, but the good doctor is far more physically fit than I...I was trapped...like an escaped convict with blood on their hands, the blood hound had followed my trail of deviance and "treed" me. It was time to switch to plan B...innocence and kindness! LOL
I tried to slip my cane behind my back, but even this was obvious...so I proceeded to have a brief conversation with Dr. SWWNBN. I was, after a few words, able to deflect her focus and throw her off my "mental" trail...or she just pretended...I may never know. LOL
But, all's well that ends well...I got the signature and the form. The more difficult battle will begin on Monday...the one I have to fight with myself. I'm just hoping my mind can whip my body into shape by then...or at least ENCOURAGE it to go the distance...
"Is that really my PHONE ringing at 6:00AM?" I thought to myself this morning...I may have actually even spoken the words out loud because I had been in a deep, dry-mouthed, snoring sleep when I was so rudely startled awake.
Yep...it WAS my phone...playing the theme song from "Sponge Bob, Square Pants" (if you have kids, you'll know this song) as I heard the captain yell out, "Are you ready kids? I can't hear you!"
**Note to self--consider changing ring tone as it is quite frightening to be yelled at when not expecting it**
I fumbled for and grabbed my super-secret bat cave phone in the dark and glanced at the LCD lit screen...it was a number I didn't recognize. I HAVE all of my friends/medical contacts/enemies, etc., logged into my phone and my cell service would identify them immediately...the wonders of caller ID!
"Dumb a$$", I mumbled to myself, and threw the phone back on the table not answering it. I just assumed it was a wrong number because the ONLY people who would dare call me at that ungodly hour would be, A) My work, and B) A distant relative to tell me someone had died. Nothing could be that important at 6:00AM.
But unfortunately, I couldn't fall back to sleep...so I decided to check my messages. The "dumb a$$" caller HAD left one and I started worrying it just MIGHT be something to do with work...after all, Seattle/Armageddon DID just have another winter storm blow through, dumping inches of snow and ice around and causing incredible traffic problems/accidents. I began to worry one of my night shift coworkers might be trying to reach me for some strange reason and maybe I should respond.
I dialed the access code to retrieve my messages, only to hear the deep throat voice of Dr. She Who Will Not Be Named leaving a message to CANCEL my neuro appointment today! What the hay?!? I had to listen to it twice.
Yes, she WAS calling me at 6:00AM to let me know it was "your favorite neurologist" calling to cancel my morning appointment because her office was closed due to weather...and "someone" would call me back at some point to reschedule.
Mkay...First of all, I don't "do" 6:00AM...EVER...never have...won't start now. And anyone who knows me even as a casual acquaintance knows NEVER to call me before 8:00AM...it's not only rude, but I CAN bite before eight. And if you haven't had YOUR rabies shot, just don't call me before 8:00AM to find out!
Second...I NEEDED to see Dr. SWWNBN today to get her to sign my thousand-paged form to release me back to work full time next week...I can't return to full time hours without it...and Monday is a "govmet" holiday (MLK Day), so it is imperative I have this form signed, sealed, and delivered tomorrow.
Third...I have been practicing for a few days now (in collusion with a few coworkers) how to CHEAT on my neuro exam so the good doctor will just sign off, no questions asked!!! I've grown weary of office work...it's just not as exciting as chasing the mentally ill...and I just want to ride shotgun with my coworkers as we drive around the county looking for someone to detain! I know...that description sounds pretty crude and it's really NOT what we do...just wanted to "spice" up the description of my job for you.
But, at any rate, I feel I NEED to get back to working full time as my office has been suffering a lot of illnesses lately with an increased work load. And with me out of the rotation, it makes more work for THEM/coworkers. Never mind I have YET to drive a car and I'm still walking with a cane (the issues I needed to "cheat" on during my exam today!)...I think I can get around these minor details.
The problem is, Dr. SWWNBN is a bit of a stickler for "details" I have recently discovered. I guess she doesn't like to sign her beloved name to something that has potential to come back and bite her in the arse...like, for instance, if I were to KILL someone driving during the course of my job! Minor detail...
So...I've once again had to "shtoop" to emailing her and hope I can gain her blessing to return full time without her needing to visually see me. But even if she DOES demand an in person neuro eval, I'm ready..."we've" come up with various distractions, etc., to throw this sniffing blood hound off my dirty trail!
For instance...instead of the "follow my finger" exam, I'm considering the "pull my finger" exam! Pray for me...I think I might need it...LOL
I'm not exactly talking about my weight here...although I WILL have to admit, I have of late been "tipping the scales" in that area of my life, too. Steroids have NOT been kind to me...as neither has inertia, age, and other cosmic forces!
What I AM speaking of (albeit, in round about terms) is my sense of "balance" in the world right now...or lack of it...depending on one's viewpoint. I have made a mental note recently that, as I seem to be improving (perhaps at a snail's pace unfortunately!), it appears many of my "Blogosphere" friendships and connects have taken a turn downward. I have heard from a few of you about recent difficulties, deaths, losses, changes in MS symptoms, and a various assortment of other trying circumstances.
Now, perhaps it is MY viewpoint where I am seeing these things as difficulties or as being somehow "out of balance"...I certainly feel fortunate I am NOT experiencing the ordeals some of you have described AND my heart goes out to you. I have no real words of wisdom or even comfort to offer...I just hope you realize I am thinking of you and sending thoughts of peace and calm.
As has already been said by hundreds of "greats" for probably many centuries (and I take liberties here with my very own wording of the proverb), "One man's trash is another's piece of art"...er, something like that. Or better yet, what I am interpreting as your "difficulties" may actually be viewed as "blessings" by each of you (and I believe you KNOW who you are right now...no explanations needed). It's all a matter of perspective and balance.
And in that analogy of "viewpoint", I might also add, as my OWN vision has changed from one of complete tunnel vision surrounding my life, I may simply be "seeing" or now using more of my peripheral sight...instead of being severely internally focused, YOU have finally fallen into my line of sight! In terms of my OWN balance, I think this is a "good thing" (Love ya, Martha Stewart!).
Whatever the case may be, I feel very fortunate I am improving in small steps each day...and I am saddened so many of YOU are finding yourselves in darker or more stressful times. Whether it is simply a matter of taking turns or not in life's peculiar scale of "balance", I breathe a sigh of relief to be raised up a bit in the scale...and hopefully my arms can reach the length down to you to help pull you up or lighten your load.
It's a stretch, but YOU have reached for me in the past...so I'll give it my best college try...
Sonnet 2 from "The Autumn Sonnets"
by May Sarton
If I can let you go as trees let go
Their leaves, so casually, one by one;
If I can come to know what they do know,
That fall is the release, the consummation,
Then fear of time and the uncertain fruit
Would not distemper the great lucid skies
This strangest autumn, mellow and acute.
If I can take the dark with open eyes
And call it seasonal, not harsh or strange
(For love itself may need a time of sleep),
And, treelike, stand unmoved before the change,
Lose what I lose to keep what I can keep,
The strongest root still alive under the snow,
Love will endure--if I can let you go.
Thinking of you in your time of loss...
LD
Most people think because I work in the field of psychiatry that I like psychiatric jokes...well, I DO...if they're funny! But most of the so called "jokes" that usually hit my "IN" box of email just aren't all that humorous...frankly, I've got better REAL LIFE funny stories I could tell that out rank most of the email humor. But, then again, due to federal and state confidentiality laws, I can't ever TELL my personal funny stories...so I'm stuck reading the ones in the "IN" box.
Oddly, my born again, republican, conservative, lacking in most jovial moods, sister in the Bible Belt Midwest, sent me THIS psychiatric joke...I found it to be QUITE funny. She's obviously been hiding a darkened humor side of herself all this time...LOL :
During a visit to the mental asylum, a visitor asked the Director what the criterion was that defined whether or not a patient should be institutionalized.
"Well," said the Director, "we fill up a bathtub, then we offer a teaspoon, a teacup and a bucket to the patient and ask him or her to empty the bathtub."
"Oh, I understand," said the visitor. "A normal person would use the bucket because it's bigger than the spoon or the teacup."
"No," said the Director, "A normal person would pull the plug. Do YOU want a bed near the window?"
It's Sunday evening and all I can think about is how much I did NOT get done this weekend! My laundry remains piled high in the basket...my home remains looking as if the high winds we've been having here in the Northwest actually ripped THROUGH the interior, instead of outdoors...and I'm quite certain there are other assorted tasks I simply can't remember that remain "undone" on my list! But alas, I am tired...
I return to work again tomorrow for five days of my "reduced schedule" status. Instead of putting in the usual 9.33 hours, I have only been clocking in between 6 - 8 hour days...this has certainly been ENOUGH. By the time I get home, I am absolutely fatigued, dragging my leg with me, and feeling a bit nauseated as well. I suppose this is why Dr. She Who Will Not Be Named suggested I only work SIX hour days for a bit...but, as usual, I defy her! LOL
I CAN report in that my FUO (fever of unknown origin) has resolved...I have been afebrile for almost a week now. That certainly boosts my spirits and my physical functioning...it is quite draining to feel feverish every day and the excess heat did NOT assist my fatigue.
I have not gotten any results from my CT scan of my nose hairs (actually my sinuses and mastoid bones, but it felt like they must be looking at and separating every hair in my nose based on the bizarre positioning and time it took to complete the test!)...in the medical testing business, no news really IS good news. It is standard to call within the first 24-48 hours of the testing if there's something "bad" showing up...I'll take no call to mean nothing is wrong.
I DID get my hearing tested last week on Friday after a lengthy phone battle with my insurance carrier, who kept providing different coverage information each time I called...must be a "New Year's" kind of thing...or a cost-saving one! Anyway, I am a bit HOH (hard of hearing), but it turns out when I'm not responding to people it really IS most likely because I'm choosing to ignore them! LOL There was also nothing significantly wrong with my ears/hearing.
Madam "Z", my physical therapist, also put me through some more vestibular testing (inner ear) in PT this past week...come to find out, my repeated statements (and denials) about my vertigo and NOT having nystagmus (rapid movement of the eyes usually seen with MS vertigo) were not actually "accurate". I donned a funky pair of goggles that had tiny eye cams in them while she twisted and turned me about to try to create my dizziness/vertigo. While the cameras were rolling, so were my eyes! Technically speaking, I have an upward, right "tic" in my eyes when experiencing vertigo/dizziness...AKA, friggin' nystagmus! I am now certain to have my "Junior Medical License" pulled...
This coming week, I not only am to work five days in a row, but I also see Madam "Z", Dr. She Who Will Not Be Named, AND I go back for more vestibular testing with Dr. Huh? I'm thinking my laundry will either wash itself or I'll be wearing dirty underwear...
Back to "resting" again...
Ah, yeah...that would be Grandma Goldie in the picture over there...circa 1985. What I'd give to have that polyester polka dot blouse she's wearing. I'm sure she probably sewed that outfit herself as it is so Grandma Goldie-ish!!!
Unfortunately today, I found myself initially cursing Gram under my breath...SHE'S the one who started this tradition of baking up vats of her secret recipe snack mix every holiday. And she's also the one who taught me to GIVE generously...I DO blame her for my current yearly dilemma...the making of 50 bags of her snack mix to hand out to my coworkers each winter!
I thought this year, mid relapse, I might be pardoned from this task...but oddly, even in my "gimpiness", my coworkers have still inquired about their missing bags of mix...I had no idea their very winter sustenance relied so heavily on receiving this treat! None of them appear anywhere NEAR starvation, yet several have asked me, "So, are you making Grandma Goldie's snack mix this year?" What else could I do, but continue tradition?
So, Saint EB schlepped me off to the store today to buy the well over $150.00 of items needed to mix up and bake SIX, large roaster pans full of my secret white trash recipe mix. I spent the rest of the day and evening mixing, stirring, and baking while watching the SEAHAWKS narrowly win their first NFL playoff game. I am now utterly exhausted.
I found myself premix status staring at the boxes of cereal and assorted items stacked on my counter top and wondering how I would ever find the energy needed to finish the project...let alone the "balance" to stand in my kitchen for any period of time. I was a bit grumpy about the whole ordeal, quite frankly!
Then, I thought to myself, "What would GG do?" I smiled at the obvious answer that popped in my head...GG would JOYFULLY spend the entire day mixing, stirring and baking because Gram found great pleasure in doing things for others...she'd be "happy" about the project.
I DARE MS to mess with Grandma Goldie's tradition!!!...
So, I'm sitting IMing (can that even be used as a verb??) my buddy PEEJ in Boston tonight and she is accusing me of "allegedly" asking hard questions here on "Cheese"...she was referencing Thursday's post about "How Big Is Your Character?" Apparently this post caused some brain strain for ol' PJ. LOL
And, in the course of a bit of computer laughter and discussing whether or not our MS CAN define us as people, my brain once again began to randomly wander off track a bit (as I'm so prone to do!). Somehow in this IM conversation, I started thinking about the clients I work with, otherwise known as "The Mentally Ill". The rusty cogs in my brain began grinding together as I started comparing how their diagnoses often "define" their characters...I also started thinking about how often in the mental health profession the PROFESSIONALS begin defining a client based on their diagnosis!
This led me to yet another tangent (as so often my mind does)...I started recalling when I used to train new staff in psychiatric hospitals year's ago and one of the training tools I used to provide to make a point. Now, mind you, most "new" staff who are hired in psychiatric hospitals are barely wet behind their ears and fresh out of college (if they've made it that far)...let's face it...the burn out rate and age for inpatient psychiatry is about 25-30 years old. After that age of working in the "bin", you have either figured out what your own problems are that LED you to working in psychiatry or you have become a PATIENT! Or, like some of us, you become referred to as "management". LOL
Anyway, I digress (again, typical)...I used to do a presentation on psychiatric diagnosis and symptoms of diagnoses. Riveting crap, I'm sure...but, to make my initial point, I would bring in two canned food items. One would be a lovely can with a label of fruit cocktail and the other would be the most grotesque label of spinach I could find on the market. I would set these two cans out in front of my unfortunate captive audience and ask them to pick which of the cans they would be willing to eat right now? Oh, yes...I came with spoons and forks too!
There would, no doubt, always be many questions about "why" I was asking this or was this request covered under their new health insurance, etc. But I would only respond with requesting they choose which can was most appealing to them and which they would be willing to eat RIGHT NOW. Inevitably, one poor suckered, over-achiever, too quick to please would volunteer to choose a can and eat it. I would quietly hand them the spoon and fork and the can opener.
Once the lid was successfully removed, the unknowing "specimen"/employee would grimace and look at me with absolute horror (or hatred...it was really hard to interpret) and I (with a smirk) would ask them what was the matter?
This trick worked EVERY time I presented this class...my newfound employee would ALWAYS choose the can with the fruit cocktail label and probably thought they were getting a free snack. What they DIDN'T know is, I had previously switched the labels...the can that was opened was the gross and slimy spinach and the new employee believed they would HAVE to eat the can to save face!
I never made them eat the contents...instead, we would engage in a "table" discussion about labels, how labels are used (i.e., diagnoses), how they are misused, how we prejudge the contents of a person based on their "label", AND how sometimes labels (diagnoses) can be wrong as well as HURTFUL and HARMFUL...or at the very least, NOT Palatable!!!
So what's my friggin' point? (Even I have almost forgotten THAT!) Well...my point is once again, when we define ourselves by our "labels", or dare I say our MS diagnosis, we become what our label says is in our "can". The MS label can be as slimy as grotesque spinach if we let it be...it can also be PREJUDGED by others to be grotesque spinach, when in fact, what's inside of us is lovely fruit cocktail...we have just been "mislabeled" by our friends/family/coworkers, etc.
For me, I am working toward my MS NOT being necessarily what is in my can OR the label I choose to display to the world...I don't want it to define my contents as it has seemingly been doing this past year. I want to know and feel what I have inside is that lovely fruit cocktail, even if my "label" may say something different to the world.
I'd like to be able to surprise that risk-taker who chooses to look inside me for my contents...who chooses to look beyond my label and really get to know what's inside me. My MS is a part of me, but it is NOT my contents.
Now, go treat yourself to a snack or something...I'm finished here...LOL
I ended my Boobtube watching last night with one of the THREE shows on primetime TV that I actually choose to watch (Grey's Anatomy, Numbers, and Criminal Minds). If you've ever caught an episode of "Criminal Minds", and of course are interested in deviant behavior and law (that's kind of a prerequisite!), this is the show for you. It's based on the actual FBI Behavioral Analysis Unit that exists in the United States...the characters and story lines in the SHOW are not real, but the FBI BAU really DOES exist.
I "brush up against" a bit of forensics work in my job (usually in the form of reading reports from the State Hospital), but hopefully the patients I see have never committed heinous crimes...fortunately, it is not the CRIMES portrayed on the show that fascinate me, but the BEHAVIORAL dynamics and investigation that keep me "hooked" on this show...that, and the wonderful quotes that come at the beginning and ending of the show in the form of narration.
Last night's ending quote was one from Kahlil Gibran, a Lebanese-born poet from the late 1800's/early 1900's. The quote really got me thinking about my own life and "character" for some reason...it was as follows:
"Out of suffering have emerged the strongest souls; the most massive characters are seared with scars."
It certainly doesn't take "genius" intelligence to get the gist of what Kahlil was trying to say here...Big characters come with some history/scars...it is these experiences that "grow" our characters. But hang on to follow my rambling twist on this...
So, as I'm laying awake in bed last night, unable to sleep, this quote kept rolling over and over in the waves of my pre-slumber mind. Strong souls...massive characters...scars...
We've ALL had them...scars to our psyche, that is. We have all "endured" something along our path in life, whether we've been diagnosed with MS or some other disease...whether we've endured physical, emotional, or spiritual trauma. It is these very experiences that have molded us into who we are today...whether our characters be "massive" or not.
Now, add to the equation of pre-sleep thought a commercial that's running right now with one of the Redgrave girls talking about how she'd like to die from too much laughter, or from dancing, or from...but she REFUSES to die from breast cancer. Massive characters and dying began twirling through the holes in my MS brain! I began melding together thoughts about MY character and dying...and just HOW I would want to be remembered (Hold on! This is not morose...bear with me!) in life and death.
We often hear those sappy quotes about how "I have MS, but it doesn't have me", or "My MS doesn't define me"...I have always brushed them off as trite and too simplistic for my "genius" intelligence. LOL But in review of my bedtime thoughts last night, I came to the conclusion my MS DOES have me and it HAS BEEN defining me. And, more importantly...THIS IS NOT WHAT I WANT TO BE REMEMBERED FOR IN THIS LIFE...character-building or not! Whew!...You thought I'd never get to the point, didn't you?!? LOL
It IS true...Multiple Sclerosis has been a "massive" character builder for me (whether I now have massive character remains to be seen)...and with two or more relapses a year, it has been consuming my everyday activities and life...it has been the basis of much of my daily focus. It has been in front and center in my every step, every fear, every thought of my future. "It" has been consuming me...and hopefully building more character along the way.
But in thinking of my life pre-MS and now, I began to wonder what OTHERS are seeing in my character? I began wondering just how I might be eulogized in death...what I would be remembered for? And then, it hit me like a lead balloon...I DO NOT WANT TO BE REMEMBERED AS THE WOMAN WHO HAD MS!!!
**THUD**
I want to be remembered as someone who worked hard,who loved "big", who enjoyed the simple things, who laughed loudly, and someone who found the humor in all things in life...I want to be remembered as someone who gave from their heart, who was welcoming, who danced to music anytime/anywhere...someone who made you laugh, who held your hand when you cried, who comforted the sick and suffering. NOT SOMEONE WHO "SUFFERED" FROM MULTIPLE SCLEROSIS.
So, as much as it "pains" me to repeat this or say this..."I have MS, but it doesn't have me"...this is my new mantra for 2007. Banal or not...it is how I MUST begin again to live my life if I want to be remembered for the other things above.
How big is YOUR character? What do YOU want to be remembered for? Yes, this IS an interactive post...please leave your comments below...
Two posts in one day? What will I think of next...
I was listening to Entertainment Tonight on the Boobtube just a bit ago (because this is what my life has come to) and I heard some startling news...I'll share that in a moment.
But first, I have to tell you about this funny/bizzaro email conversation I had late last week with Dr. She Who Will Not Be Named. I had been in frantic "rant" email mode with her as we tried to satisfy my employer's demands for my return to work...needless to say, I DID type many an expletive! And I think I may have even engaged in a bit of name calling...I don't think Dr. SWWNBN had ever "read" me so frustrated and angry before.
Anywhozit...late in the afternoon on Thursday, "we" had finally settled the work issue and I was scheduled to return on Friday. I sent Dr. SWWNBN confirmation of this via email and she responded with one line, "I'm just glad you didn't blow your aneurysm....." She was trying to be "cute"...I don't HAVE an aneurysm!
The actual funny part of that response (if one could ever imagine an aneurysm being "funny") came from me by replying, "My mother DIED from an aneurysm. Now don't you feel like a schmuck?" Several apologies followed from Dr. SWWNBN and my attempts to make her feel badly succeeded...AND my mother really DID die from a brain aneurysm...that's no joke. But in the game of One Upsmanship, you have to use what material is available...I'm shameless.
So, I secretly laughed/gloated over my triumphant reply and "putting her in her place" with Dr. SWWNBN, but it oddly got me thinking quite a bit about my mother's death. This February with be the 10th anniversary of that tragic event...my mother being fine one moment, then dying in my arms the next.
I have often quietly worried about MY brain with MS and if the "aneurysm effect" might be something hereditary. Although I'm pretty certain my mother did not have Multiple Sclerosis, she obviously DID have something wrong in her brain...everyone from psychiatry to neurology has assured me there is ABSOLUTELY NO CONNECTION BETWEEN THE TWO.
Now, travel with me in my time machine back to this evening and Entertainment Tonight! I am laying mindlessly on my couch obsessing over what the possible outcomes might be from my CT scan today (because it's just what I do...obsess) and I hear a report about Terri Garr (you know, the actress poster child for MS?) recuperating from a brain aneurysm and surgery which occurred on December 21st!!! Here's a link if you think I'm joking... Teri Garr Recovering from Brain Aneurysm | Teri Garr : People.com .
I've decided my thoughts are getting creepy and I need to stop thinking so much...
