Wednesday, October 31, 2007

Surrender...

Bubbie left a comment on one of my previous posts, which I'm sure she may have meant to be possibly funny. Instead, it got me thinking, which is ALWAYS a dangerous thing! LOL

The comment was about a witch flying through the air and writing our names in the sky...followed by the word, "SURRENDER".


SURRENDER is one of those words I have struggled with my entire life. For many years, I chose to only accept Webster's FIRST definition of the word: 1. hand over, give up. It has only been in recent years of my life I have ever chosen to look beyond that first definition to the SECOND and THIRD: 2. allow oneself to yield, 3. cease resistance.


There was a period of time when I lived in Houston that I gave up full-time nursing management and followed my conscience...I became a Registered Massage Therapist and had my own practice. I could never quite "give up" my psych background however, so I mostly saw psychiatric clients (referrals from therapists and psychiatrists). I did not practice "traditional" massage, but blended a combination of talk therapy (pseudo-psychotherapy), massage, and body awareness/self esteem relearning.


I also facilitated a women's body awareness group. In this group, we worked on issues of body self esteem, undoing negative paradigms, and embracing feminine archetypes. We did this through a variety of techniques, but one of my favorite to teach was combining color therapy with movement therapy...something I was trained in by a most unusual shaman-type woman!


In using colors to assist the unconscious, one looks at "universal assignments" given to the color's meaning. For instance, the color green in our culture stirs images of money, envy, growth, and even illness (i.e., "he was rolling in the green", "she was green with envy", "the trees are greening up", "he was green around the gills".) We use colors all the time in our language as both substitutes and expressions of feelings.


Each color can be given both a positive and a negative (for lack of easier explanation, I will stick with this simplistic dualistic approach) expression. For example, using the color green, one can be "rolling in the green", or translated to have an abundance of wealth, or one can become "green with envy", or feeling deprived or without.


When combining colors with movement therapy, the therapist uses body movements and patterns of movement that express the "positive" attribute of the color as a way of "retraining" the body (which ultimately retrains the mind) into a new way of thinking. So, the movement for the color green is one that symbolizes "growing/abundance"--from a balled up body shape on the ground toward movement of a firmly-rooted tree blowing in the wind--growth. Very difficult to describe in writing without a visual! LOL


But back to my point, and I DO have one! SURRENDER. I "taught" SURRENDER repeatedly to my clients in my groups, yet it was the most difficult body movement for ME to comprehend and endure! The coinciding color for SURRENDER is the color orange (I KNOW the MS Society did NOT know this when it chose brown and orange as our "gang" colors! LOL).


"Why?" you ask (or perhaps have already stopped reading?!?). Because two very powerful colors--yellow and red--must SURRENDER to each other in equal parts to make a pure orange...the colors must "yield" to one another..."cease resisting" one another.


Yellow is the color of newness, the rising sun, of possibilities and fresh ideas. But its negative aspect is weakness or rot ("he was too yellow-bellied to fight").


Red is the color representing power ("she was having a red-letter day"). But red out of control can also mean chaos! ("he was red with rage")


So now you can see why ORANGE is the symbolic representation of SURRENDER...to yield to another.


I won't go into great written detail about the corresponding movement for ORANGE/SURRENDER because it is simply too difficult to describe something so visual in words. But suffice it to say, the ENDING of the movement results in a position similar to a Muslim prayer stance...except instead of the elbows tucked under the trunk, the arms are outstretched in front of the head with the palms on the ground. This particular position is known as the "Chopping Block" because the neck is exposed and you cannot see a would be assailant OR an axe falling on your neck, for that matter! Thus, the name.


It is a highly vulnerable position, yet it yields great strength and insights. SURRENDER.


I struggle with SURRENDER every day. I am much better at fighting and "pretending" to fight than I am at yielding or ceasing to resist. Yet, I also know cognitively "fighting" only zaps me of my vital energies and many of my battles are imaginary (or in my mind), making them battles I cannot win.


I am currently in a great struggle with my Multiple Sclerosis...a fight...and I have refused to SURRENDER because I have only been viewing my situation AS a fight and focusing on Webster's first definition--to give up.


Bubbie's comment today humbled me and brought me closer to a much needed SURRENDER in my current situation...this is a battle where there will be no clear winner...only a potential loser and that "loser" will be me if I keep fighting with imaginary demons.


I have also held great pride in my ability to fight...to endure...to keep a stiff upper lip. But pride can be a dangerous attribute and certainly NOT a useful weapon in a fight. Pride can cause blindness and an inability to see clearly in the shadows.


And MS is DEFINITELY NOT a fair fighter! The disease likes to throw some solidly-placed punches, then sneak back into the shadows and wait...it waits for me to either pridefully stumble into it's shadows or exhaust myself blindly and wildly throwing punches at an adversary I cannot possibly connect to my swinging fists. SURRENDER.


I have been wallowing for the past several days in the pig shit of pride, anger, resentment, and fear...a most foul cesspool of emotional excrement! And I have been trying to "fight" my way out of this pool while also swinging wildly at my MS and current condition. Frankly, I am tired.


Today, on Hallows (Halloween to most folks) I have routinely for the past 16 years performed a ritual fast and spiritual cleansing. I have been unable to do this physical ritual today because I am on so many medications right now for my shingles, I would damage my gastrointestinal system to NOT eat for 24-48 hours. This has both angered and disappointed me and initially gave me one more reason to spit venom at my MS.


And then I read Bubbie's comment...SURRENDER...and I have spent the day "fasting" my mind of unwanted thoughts and emotions in preparation to do just that...SURRENDER.


SURRENDER is not something one does once in their lifetime and considers this to be accomplished. Quite the contrary. SURRENDER is an act of faith that must be practiced every minute of every day.


And just for this minute of my day, I will let go of the red of anger and the weakness/rot of yellow, allowing only for the orange blending of power and promise of new possibilities to wash over me in a pure orange. SURRENDER.


We don't always know how powerful our words can be or what influence they may have on another. I doubt Bubbie gave it a second thought when she typed the word, SURRENDER, in the comments here.


But I am deeply grateful she did....


For The Newly Diagnosed...Or Anyone, Really...

I came across this song and, after listening closely to the words, decided I needed to share it. It is by Kendall Payne, a wonderful folk singer...I doubt she wrote the song with Multiple Sclerosis in mind, but something about the words just seemed to "fit"...enjoy.

Kendall Payne.mp3


And here are the words:

Such a lovely day to carry on your shoulders
It turned from blue to grey and you seem so much older
But its worth all the money in the world to find a way back to
normal
If there’s such a place

The doctor called your name and things became so sober
I suppose the price we’ll pay will be worth it when it’s over
But it takes every effort to believe in the unseen when you see
clearly
That thing’s are not okay

Well I know you are frightened, and I know you are angry
And I know you tired of the unknown
But I am beside you, and I will remind you
That you don’t have to go it
alone

Seems a tailor made sickness for your sins dear
If you planned your life away we never would be standing here
But with an impending bitter end
You have learned the lesson how
The sweet is in the now

Well I know you are frightened, and I know you are angry
And I know you tired of the unknown
But I am beside you, and I will remind you
That you don’t have to go it
alone
Alone, Alone, We are not alone, Alone, Alone, Never, Not
alone

There are no guarantees, no promise they can make us
Our faith’s a fighting seed planted deep in desperate trust
I will take every moment I can get
And won’t regret I share your name
To Love is worth the pain

Tuesday, October 30, 2007




It is the eve of Halloween and my arm looks like one of those fake makeup patches you can buy to put on your face, resulting in a most disturbing and grotesque deformity. Thank goodness it IS on my arm and not on my face! (And not the most "flattering" side view of my forearm either!) But if it WERE on my face, I might just consider going Trick Or Treating this year...Moohahaha!




I remain at home "recovering" from *shingles*...some of you have asked, "What are shingles and what causes this?" Well, being the good thief and plagiarizer I am, I have stolen for you a fairly succinct, in layman's terms, article that 'splains the disorder. And, I'm also too fatigued and feeling too ill to come up with anything on my own...which is probably a BETTER explanation at this point. LOL




One thing I have found as I looked for this article were pictures of various shingle outbreaks...and I must say, not unlike MS, no two shingle outbreaks look alike! As you can see by the photo of my arm (taken tonight), my particular "brand" of shingles does NOT look like chicken pox (as the article describes)...but then again, very LITTLE about me is classic textbook...including my version of Multiple Sclerosis.




So without further ado, I give you the completely stolen-I-may-go-to-jail article:




A Painful Rash – Is It Shingles?





Shingles (Herpes zoster) is a skin rash that is often extremely painful caused by the Varicella zoster virus, the same virus that causes chickenpox.






In people who have had chickenpox, the virus is never fully cleared from the body; instead, it remains dormant in the nerve tissues. When physical or emotional stresses to the body weaken the immune system, the virus re-activates and spreads along the nerve fibers to the particular area of skin supplied by the involved nerve (called a dermatome).






The virus responsible for chickenpox and shingles is a member of the Herpesviruses, although it is not the same as the Herpes simplex 1 and 2 viruses that cause cold sores and genital herpes, respectively.





Pain, itching, tingling, or burning of the skin often precede the rash in an outbreak of shingles. The blisters that develop resemble the lesions of chickenpox but are concentrated in the area supplied by the involved nerve.






Rarely, more than one nerve is involved. Blisters may occur along the entire path of the nerve or only in certain areas supplied by the nerve. As with the blisters of chickenpox, the blisters in shingles eventually burst and begin to crust over and heal. The entire outbreak can last for three to four weeks.







Before the blisters are crusted over, the virus can be spread to anyone who does not have immunity to chickenpox through vaccination or previous infection.







The pain of shingles can be so severe, even before the rash develops, that it mimics dangerous conditions such as
appendicitis, kidney stones, or a heart attack, depending upon the location of the nerve that is affected. The appearance of the characteristic rash is usually sufficient to establish the diagnosis of shingles. Antiviral drugs are sometimes prescribed to reduce the duration of the rash, but their effectiveness is limited. Steroids or pain medications are sometimes given to help control the pain of shingles.







Most people with intact
immune systems recover completely from shingles, although recurrences are possible. Since immune function declines with age, older persons are most vulnerable to shingles. About half of shingles cases occur in people over age 60. People with weakened immune systems due to cancers, chemotherapy, or HIV infection are also at increased risk for the development of shingles.

Monday, October 29, 2007

"Official" Diagnosis...

It's official...I have shingles...herpes zoster on my RIGHT forearm AND in my RIGHT ear and throat. I just saw Dr. She Who Will Not Be Named and gimped out of her office with no less than 5 new prescriptions (and one YOU recommended, ANNE!...the lidocaine wash). I am now back on oral Prednisone, Acyclovir (anti-viral), Percocet for pain, Lyrica for pain AND MY RLS (?) (and the fact my constant left leg movement drove Dr. SWWNBN crazy...I DID wonder how she thought I felt having HAD this RLS for almost 4 weeks now if the movement drove HER crazy in 20 minutes?!?), and a Lidocaine mouth rinse for the pain in my mouth. Now, if I just had something for the PAIN IN MY ARSE this is all bringing on, I'd be happy...LOL

Dr. SWWNBN tells me I am a "public health risk" currently and will not release me to return to work until after I see her again on Tuesday of next week...we'll see. Right now, that's not even an issue as I could barely walk to the car and back for my ride to my appointment today...I am so incredibly fatigued. I know she is also just trying to protect me from ME as I typically return to work too soon, causing a cascading effect of recurring symptoms...plus, my OWN immune system is shot right now and I'm sure she doesn't want me catching "something else" on top of having shingles. The fact I troll one of the largest petri dishes known to man for a living (emergency rooms), does put me at a higher risk of "giving and receiving". But this means I am stranded at home for another week with nothing to do but contemplate the lint in my navel...I don't do well with boredom. LOL Fortunately right now, I am feeling too tired and ill to be bored.


Sorry I have not answered/commented back to the many comments all y'all have left here...I neither feel particularly "witty" nor energetic enough to respond. But I DO appreciate your well-wishes and concern. And I especially have enjoyed the "baseball rivalry" occurring! May the best MSer win...LOL


Off to rest...again...as this seems the only thing I am doing with great joy these days...

Sunday, October 28, 2007

Not Dead...

Just too ill to type...shingles are now in my mouth and throat and I'm extremely fatigued. My throat is sore and swallowing feels "funny" as well as I've developed an ear ache in my right ear.

Dr. SWWNBN suggested I go to an ER or come to see her tomorrow...I'm opting for the tomorrow approach unless something gets worse or my eye starts to hurt. I considered going to the ER in the middle of the night, but since I was pretty sure I wasn't dying, I just continued to manage at home...and as I told Dr. SWWNBN, "wishing I were dying doesn't count"...

Back to bed...

Saturday, October 27, 2007

The "Latest" Fresh Hell...

Remember this?:

Well, now it's this: For the love of God, could I just have ONE friggin week of some semblance of "normal" again?!?



As you know, my RIGHT forearm and upper arm have been burning/painful...a most concerning experience as these anomalies tend to always occur on my LEFT side. But, for whatever reason, my dearly beloved RIGHT side has decided to get in the MS game.



This morning, I awoke all too early and way too tired to the sound of the P.O.D. (Princess O' Darkness, aka, my cat) THROWING herself against my bedroom door, scratching the door, pawing under it, and jumping to grab the door handle...she had obviously slept ENOUGH during the night...her human slave had not!



I dragged my weary bones out of my warm bed and got up to feed her...all she REALLY wanted was for me to open the living room blinds because the sun was shining and she needed to "tan" herself. I stumbled into the bathroom feeling extremely fatigued and noting the pain in my right arm seemed more "sensitive" than before. I glanced down at my RIGHT forearm, only to discover a RASH had formed in the night! (I had actually noted the beginning of some weirdness the night before, but blew it off as just that...weirdness.) It was reddened, burning hot, and inflamed.


You may recall (or perchance tried to forget) the strange pain I developed in my LEFT hand/thumb in the spring with subsequent rash...and then, of course, the ICY HOT debacle where I burned the lovin' flesh right off my thumb! But let's forget THAT nursing "fox paw", shall we?!?



Well, this pain in my RIGHT forearm/upper arm smelled suspiciously like THAT pain from the spring in the other hand and NOW I had developed the same funky rash on the RIGHT side...I, of course, immediately emailed Dr. She Who Will Not Be Named...complete with a PHOTO (since she only plays a doctor on the Internet!). She emailed me back with (in my humble opinion) a rather dismissive one-liner of "maybe we should have you see a dermatologist?" I emailed her back with my best "catty" patient response of, "by the time I get an appointment with a dermo, this rash will have disappeared and I will look "stupider" than usual!" There were no more email exchanges as I went to work...very tired, arm on fire, with a suspiciously painful rash on my arm.



One of the benefits of my job (if you can call it that) is, I frequent the ER of the 4-state trauma hospital of the region on a regular basis...I interact with doctors on a near daily basis...psychiatrists and REAL doctors. LOL And tonight was no different. I was stationed more or less at this particular ER for the better part of 2+ hours...so I took advantage of the "free" medical advice at my disposal (one must always remember though, "free" can mean "cheap", too! LOL)



I consulted with 3 ER nurses, a family practice ARNP (Adult Registered Nurse Practitioner), a medical student, and a psychiatrist...they were all huddled in the same area I was at. And the consensus? Well, certainly NOT something a dermatologist could help me with.



All SIX of these medical providers came to the same conclusion I have EITHER an unusual pattern of shingles OR Post Herpetic Neuralgia (pain/rash developing because I've HAD shingles before)...and I think they are probably right.



Treatment? Neurontin/Morontin for the pain or Lyrica AND rest. Expected recovery time? Indefinite. Cause? Most likely due to my lowered immune system from all the IV steroids and Novantrone...herpes zoster likes to flare itself in immune systems that can't fight back. The cost of my medical consult? PRICELESS...or...well...at least FREE! LOL



Dermatologist? I don't need no stinkin' skin doctor...LOL...

Friday, October 26, 2007

FYI...New Blogger And New To MS...

Just a quick post to introduce a newly diagnosed blogger, Callie, who sent me an email this week...here's her site: http://msmyway.blogspot.com/

Looks like I'm going to have to change my side bar to 101 MS Blogs! But for now, I'm TTTT...That's "Too Tired To Type"...later, peeps...

Thursday, October 25, 2007

Do YOU See Anything There?...Yeah, Me Neither...

I have "Left" when it comes to my home-grown version of MS...generally and most often, anything that's going to happen occurs on the left side of my body. I call it "Left" when people ask me what is wrong. "I have Left," I will say as I walk or limp away from their inquisitive looks.

But the picture above is of my RIGHT forearm! I have noticed for about a week now I have a burning sensation on the outer portion of my right forearm, most noticeable when I am resting my arm with my right-clicking mouse hand at the computer. I find myself frequently picking up my arm off the desk at home or at work to examine what NEW FRESH HELL IS OCCURRING ON MY ARM! I keep thinking some weird blister or rash will somehow magically appear there to explain the sensation, but so far, nada...nothing...just my fat forearm and some left over bruising from IV's.


It's not that the sensation "hurts" intensely...it's just there...and it is puzzling. I'm just not used to having symptoms of ANYTHING on my RIGHT side...this side is my perfect side...the side that "works", rain or shine. The side of my body that compensates for "Left", the evil step child. (Now mind you, I AM severely left-handed, so my "Left" Disease can be a real problem.)


I'm hoping this minor issue of "Right" is transient and will pass soon...it blows my entire comic schtick regarding my "Left" Disease...it also makes me a bit pensive my MS doesn't have enough to do on my left side these days. As with anything and MS, time will tell.


I go in today for my Vocational Rehab assessment...I'm kind of hoping on some level "they" suggest I get a new job. Something I can do lying down in the comfort of my own home...suppose anyone would pay me just to sleep?!?...there's always hope...

Wednesday, October 24, 2007

Now, THAT'S Depressing...

This just stolen from the Associated Press...I found this article very interesting and probably NOT accurate at all. LOL But still interesting. Since the government Substance Abuse and Mental Health Services Administration branch CONDUCTED the survey, I imagine it was rather skewed...remember...I WORK for a State branch of this organization..."SKEW" is our middle name!

I'm just curious though...since I work in health care (#3), but also in the legal system (#11), do I get to COMBINE both categories? And then, does that make me MORE depressed or LESS depressed? I'm just curious...LOL...not depressed about it, just curious.
Oh, and don't bother clicking on the pre-embedded links of each category...it's shameless advertising for Job Builders and not at all anything of interest or related to the article. I'm just too lazy to retype all the categories and remove the links! Hmmm...maybe I AM depressed after all?!? **pause** Nope, just LAZY!


Depressed Workers


Personal Care, Food Workers Most Depressed

WASHINGTON (AP) -- People who tend to the elderly, change diapers and serve up food and drinks have the highest rates of depression among U.S. workers.Overall, 7 percent of full-time workers battled depression in the past year, according to a government report available Saturday.

Top 21 -- Most Depressing Jobs


Percentages of full-time workers age 18 to 64 reporting depression lasting two weeks or longer, by categories of occupation, as provided by the National Survey on Drug Use and Health using 2004 through 2006 data:



Source: The Associated Press, using data from the Substance Abuse and Mental Health Services Administration


Women were more likely than men to have had a major bout of depression, and younger workers had higher rates of depression than their older colleagues.


Almost 11 percent of personal care workers -- which includes child care and helping the elderly and severely disabled with their daily needs -- reported depression lasting two weeks or longer.


During such episodes there is loss of interest and pleasure, and at least four other symptoms surface, including problems with sleep, eating, energy, concentration and self-image.


Workers who prepare and serve food -- cooks, bartenders, waiters and waitresses -- had the second highest rate of depression among full-time employees at 10.3 percent. In a tie for third were health care workers and social workers at 9.6 percent. The lowest rate of depression, 4.3 percent, occurred in the job category that covers engineers, architects and surveyors.


Government officials tracked depression within 21 major occupational categories. They combined data from 2004 through 2006 to estimate episodes of depression within the past year. That information came from the National Survey on Drug Use and Health, which registers lifetime and past-year depression bouts.


Depression leads to $30 billion to $44 billion in lost productivity annually, said the report from the Substance Abuse and Mental Health Services Administration. The report was available Saturday on the agency's website at http://oas.samhsa.gov.


The various job categories tracked could be quite broad, with employees grouped in the same category seemingly having little in common. For example, one category included workers in the arts, media, entertainment and sports. In the personal care category, a worker caring for toddlers at a daycare center would have quite a different job from a nursing aide who helps an older person live at home rather than in a nursing home.


Just working full-time would appear to be beneficial in preventing depression. The overall rate of depression for full-time workers, 7 percent, compares with the 12.7 percent rate registered by those who are unemployed.

Well, At Least I've Got My Teeth...

I used to hate going to the dentist...call it PTSD from scary dentist childhood trauma or just the idea of having someones potentially dirty hands in my mouth...whatever the cause, I used to hate it. I'm still not all that "keen" about the idea, but I go like clockwork--every six months--whether I think I need it or not.

I have excellent dental insurance, so my every-six-months-whether-I-need-it-or-not trips are free...yep, free. Xrays, cleaning, and seeing Dr. Patty, my a bit too happy on any given day dentist. I've been seeing Dr. Patty almost as long as I've lived in Seattle, minus the first 2 years I flew back to Houston every six months to see Dr. Bonnie! That's right...I fear change...and it seemed easier to make two trips a year back to Texas for dentist/eye doctor/medical check ups than finding new people in Seattle to "understand" me. LOL


Dr. Patty's dental office is staffed with all females...no hairy-armed men sticking their mitts down my throat! You get blankets and a TV in the ceiling with high tech computer screens on either side of the dental chair to display any Xrays taken (thank goodness I have such good insurance!) and headphones with Mp3's if any nasty drilling is to be done. It's almost better than a spa! But not quite...


For the past several years, my every-six-months-whether-I-need-it-or-not checkups have resulted in NO dental work needed. I am usually praised on the "fine job" I've done taking care of my teeth and released back out into the wild to eat candy and all the crap I can shove in my mouth. LOL Today's check up was no different, minus a brief alarm.


When Dr. Patty came in for her "official" exam following my cleaning, she peered and poked inside my mouth with some gasping. You see, all the steroids I've taken PLUS Novantrone recently has given me stomatitis, AKA sores in my mouth and gums. I'm just used to the blisters that occur and never really give them a second thought...there's really NOTHING that slows down my eating after all. LOL And the sores DO go away with time. My mouth is generally sore for about a week, then everything heals up nicely and I'm back to sliding candy and crap down my throat without a care in the world.


But Dr. Patty has never SEEN my mouth immediately following Novantrone...and I believe she may have thought I had contracted a deadly disease by the look on her face (behind her mask, of course). She obviously wasn't quite certain how to approach the subject or tell me about the sores, so she said, "Has your mouth or gums been bothering you lately?"


I replied with my typical, "No, not really" response once she exited my mouth for conversation. I think I am just so used to these sores that occur, I had no idea why she was asking.


"Really!" she exclaimed in somewhat disbelief. "Are you aware you have several open areas on your gums...they look like blisters actually. Have you burned your mouth somehow?"


It finally sunk through my thick skull what she was inquiring about and I responded, "Oh that. That's just stomatitis from my Novantrone. It goes away eventually."


After several minutes of educating Dr. Patty about Novantrone and its use in treating Multiple Sclerosis, she seemed relieved to know I was not spreading contagion around her office. We chit chatted about my MS, recent relapse, and treatment for a few more minutes as I explained to her the progression that has occurred over the past few years and WHY I am taking Novantrone now.


Being the all-too-happy eternal optimist Dr. Patty is, she turned her head to the side as her eyes twinkled (because she wears a mask, I couldn't see her smile, but I'm sure it was there) and exclaimed, "Well, at least you've got your healthy teeth!" Shortly after this comment, she left my exam cube to tend to another patient.


I have decided THIS is going to be my new mantra when I start to feel down in the dumps about my MS or anything really..."At least I've got my teeth!" When I can think of nothing else to feel positive about, when life throws me lemons, when everything around me seems to be falling apart...AT LEAST I'VE GOT MY TEETH!...and that, my friends, IS something to be thankful for...LOL...

Monday, October 22, 2007

What Fresh Hell Is This?!?

My neighbor and coworker was sick for 4 days...several other coworkers have been out ill at work last week and this week with some sort of combo cold/gastro intestinal virus. It would only make sense that, whatever this Northwest BUG is that's floating around, it would land with a thud on my pillow and infiltrate my already highly compromised immune system...if I even HAVE an immune system after a round of steroids and a dose of Novantrone?!?

I thought the nausea was just a left over from the Novantrone I received last Tuesday...after all, I AM often nauseated for about 3 days following my every-three-month-dose of the blue juice. But when it lasted well beyond the typical three days, I then focused my sights on the addition of Sinemet that was added last Thursday to try to supplement the Requip I have been taking for the last 2ish weeks for the RLS symptoms in my left leg (which, BTW, continues to keep me in constant motion...better this past week, but still a pain in the...well...leg!). I emailed the good neuro today, explained my plight, and TOLD her I was stopping the Sinemet as it HAD to be the culprit behind the nausea.


And now tonight, alas...my head has become congested with a bit of a runny nose and my eyes are tearing up as though I am attending a funeral! Yes, I believe I have caught the common cold and I wasn't even chasing it...LOL


I'd like to blame this entirely on the fact I had to go into work this afternoon for a meeting ON MY DAY OFF, but even I know whatever "this" is, it has been brewing and churning inside me for a few days now. On Sunday, it was all I could do to raise my body off the couch as I felt a bit flu-ish...again, simply blaming the Novantrone at that time. I don't seem to be running a fever, so if I can dress myself appropriately tomorrow, I'll still make an appearance at my dentist's office and go into work following that appointment...because I believe in SPREADING THE LOVE! LOL Or cold virus...whatever. I really don't have much of a choice about going to work as I have used most of my accumulated leave time and can't afford time off without pay. And besides, they've all been sick with whatever "this" is anyway, so I might as well just give it back to them!


My immune system has been knocked on its butt this past month and it's no wonder I have fallen prey to the common cold virus. I'm not sure why we use the saying, "catching a cold" however, because THIS cold seems to have CAUGHT me! Wish me luck...I'm going in...

"Hello, My Name Is BrainCheese And I'm An Alcoholic"...And Other Statements That Might Not Surprise You...

I'm not certain why I CARE what political figures do with their lives and I'm really sick of reading about alleged celebrities (I use the word "alleged" because, come on...is Ms. Spears REALLY a celeb?!?) entering rehab to avoid various drug/alcohol related charges. But I've been following the story of a local Seattle-politician-Wannabe (who also introduced herself to me on Saturday at "Da Banquet" while vote trolling) and I read something yesterday in a Seattle Times article that just chapped my arse, so onward I rant...LOL

The article quoted politician Wannabe's attorney saying that Wannabe had undergone an alcohol evaluation and was found to "not have a problem with alcohol". Now, let me back up a bit here...


Wannabe, who is running for an elected city office, was arrested last week on DUI charges...admittedly, driving after having had a few drinks...blowing a blood alcohol above the legal limit, and allegedly going 50 in a 30 zone and weaving, according to arresting papers.


OK...I was sort of fine with Wannabe getting arrested for DUI. It happens...not enough, but it happens. As a matter of fact and statistic (quoted from research by Voas & Hause), it is estimated MOST drunk drivers get behind the wheel with blood alcohol levels above the legal limit (0.08) between 300 to 2,000 times BEFORE EVER COMING TO THE ATTENTION OF LAW ENFORCEMENT, i.e., being arrested. Yes, you read that correctly....300 to 2,000 driving episodes of BAL's (blood alcohol level) ABOVE the legal limit while driving. That's a hella lot of driving drunk! So, statistically speaking, it's no wonder there are so many DUI arrests these days (which, by the way, are now clogging our court systems and jails at a higher rate than those charged with crimes such as burglary).


But keeping this statistic in mind (and being an alcoholic myself, who has not had an alcoholic beverage in 20 years...another story to tell. LOL), I can't help but wonder how many times Wannabe has been behind the wheel of a car intoxicated and just NOW has been caught?!? And for her attorney to make such an asinine public statement is just...well...the height of RIDICULOUS! But I'm inclined to believe this attorney.


I also don't necessarily believe Wannabe has a "problem with alcohol"...most alcoholics don't.


"WOOT??", you say. Did I pickle my own brain at a very young age from intoxication to make such a crazy public statement in a blog?!? Has MS clouded my judgment and reasoning?!? Nope, neither...


Wannabe doesn't have a problem with alcohol because the alcohol is just the catalyst or symptom. Wannabe HAS A PROBLEM WITH HER EGO BEING TOO LARGE FOR HER BRITCHES...yep, said that publicly, too.


Speaking from experience (and having driven intoxicated in my early drunken days, but never "caught"...woohoo, aren't I special), one has to be extremely NARCISSISTIC to drink and get behind the wheel of a car. To risk one's own life and the lives of others and NOT CARE demonstrates a very high level of narcissism. To convince one's self they are "special", "different", or "invincible" and therefore IMMUNED to the effects of alcohol or intoxication takes a highly skilled level of denial and ego structure. And, it's easy to do...especially if you "get away with it" between 300 - 2,000 times before EVER being caught, arrested, or involved in a crash. But the act of driving while under the influence is STILL an act of spinning the chamber on the hand gun and pointing it at YOUR head and MINE...odds are, if you (or anyone else you know) is driving while under the influence, it's only a matter of time before being caught, being involved in a crash, or worse yet involved in a fatality (which in 2005, 39% of all traffic fatalities involved BAL's above 0.08...over 14,000 deaths. Go here if you want to peruse stats yourself: http://www-fars.nhtsa.dot.gov/Trends/TrendsAlcohol.aspx ). And this fact, dear reader, REALLY PISSES ME OFF! The idea that I gave up drinking only to be potentially KILLED by a drunk driver just chaps me...LOL


I am a designated driver...have been for years. I don't care if my friends drink (and believe me, working in social services/medical professions causes a high number of folks to drink!)...I don't care if my friends drink in front of me...I will mix my friend's drinks...I go to bars with them and they drink. I choose not to imbibe and they don't hold it against me any more than I hold it against them that they DRINK alcohol. I will always drive my friends home and sometimes even insist upon it if I suspect they've had "too much" to drink with "too little time" passing before getting behind the wheel of a projectile weapon, i.e., vehicle. And if I'm not around, there's ALWAYS a designated driver available to them...it's called YELLOW CAB! And I insist they keep this population of immigrants employed...it helps the economy...AND, it keeps my dearly beloved friends and total strangers on the road safe.


It takes an even bigger ego to give up the keys to your car...but this "largeness of ego" is demonstrated in a good way...it's called ALTRUISM. Perhaps Wannabe's lawyer would have been better off to just stop at the typical "no comment" and zipped the lip regarding Wannabe's problem or lack thereof with alcohol...I know I certainly would have respected her more and not felt like I'd been SLIMED by her hand shake on Saturday...
Off to compulsively wash my hands again...with battery acid...LOL...


Sunday, October 21, 2007

Dr. She Who Will Not Be Named...If That Really IS Your Name?!?...

I watched her “working” the crowd at the banquet last night…she didn’t know she was under my microscopic eye and has been since I first met her. She paused to speak to Congressmen and local government authorities as if old friends, and I’m sure they may have been just that. Always smiling, always gracious, she was engaging with everyone she encountered…no different than my observations of her interactions with patients in her office.

I’m talking about Dr. She Who Will Not Be Named. She is the person who invited me to attend the banquet last evening…I don’t know WHY she asked me to attend and I can’t even begin to second guess her motives, nor can I explain why THIS time, I accepted the invitation. The crowd was well out of the league of my typical “social circle” of social workers and the mentally ill…

I don’t really know that much about Dr. SWWNBN, only what I have observed and what she has told me. She was an immigrant to this country at a young age, went to medical school, and did her neurology training locally here in Seattle with a highly respected neurologist…who has announced publicly in the past that, “If I had to see a neurologist, I’d see Dr. SWWNBN (of course he didn’t say those initials, but I do have anonymity to protect! LOL).” She sits on many boards, provides consultation to the FDA, the National MS Society, the local King County MS Association, is published, and flies around the country giving lectures (you may have even attended one of her talks and didn’t know it!). She is very active in local government issues and quite vocal about her beliefs and philosophies. She is considered an expert in her field and is recognized nationally.

One might think the above paragraph is why I choose to see her for my MS care, but it is not. I’ve known a lot of “experts” in my near half a century 43 years, and most have never impressed me in the least…I tend to run the other direction when faced off with a self-proclaimed “expert”. And, although highly knowledgeable about Multiple Sclerosis, this is also only part of the reason I continue to include her as a part of my treatment team.

You see, in the almost 2 years I have known Dr. SWWNBN, she has remained “human”…even “humble” if you will, which has not been the foremost quality I observe in most physicians. She laughs loudly, makes mistakes and admits them, participates in and donates her time to local charities, and has always spoken to me as an individual person, allowing me to make decisions about my health care based upon her advice. I am allowed to be and be accepted as the quirky, slightly “off the beaten trail” person that I am, with my own opinions, thoughts, and feelings. And, she listens to me respectfully and with the dignity any human being deserves. I am very fortunate and grateful to have found her as it has made my tolerance of this disease much easier to bear…it is such a blessing to be “heard” and accepted, without requests to conform.

It is typical of me when posting about Dr. SWWNBN to tell funny tales or even make a mockery of conversations or encounters between us…and all, sadly are true! LOL And some of you have even voiced concern I might be paying a “quack” for my medical advice and care, based on some of these taken-out-of-context stories and adventures I post. But I can assure you I am not. I have surrounded myself with top notch medical, psychiatric, and spiritual advisors…perhaps not fitting the typical “mold” or YOUR standards, but well into the realm of my needs and desires.

Yesterday evening, the contents of my blog came up in conversation…I find it highly entertaining I can now “Google” Dr. SWWNBN and various BRAINCHEESE blog posts are reflected in the search. But I realized this morning, what does NOT come up in a “Google” search is who this person really is…not, of course, her real name or demographic data (because I might be sued, or worse killed, if I ever revealed this highly classified information!), but “who” this person is and what they mean to me. I hope THIS post may now reflect just that…the real "tale" behind Dr. SWWNBN...

Saturday, October 20, 2007

Da Banquet...

I'm a bit tired, so I'll keep this short...actually, I'm ONLY posting this because of BUBBIE'S comment re: my ball...or "balls"...I'd have to reread it to be sure. LOL

I DID make it to the NARAL fund-raiser banquet this evening in spite of my initial protests about having nothing to wear...and no, I did NOT attend the event naked (although given the crowd, it's doubtful anyone would have cared!). I pulled out some black dress pants, black top, a very old colorful "robe" I used to wear to gatherings year's ago, my best funky boots, and went...nauseated and all...I attended.


It was an OK evening...I got out of the hut...and now I am home. No more to tell really. There Bubbie!, my ball(s) report...LOL...

Thursday, October 18, 2007

Moon(face) Over Seattle...

I'm off the roids...thank Gawd. Had I remained on Prednisone (or IV Solumedrol) another week, I would have to hire a forklift operator just to get me in and out of the Hut! Yep, the "official" weight gain from steroids over the past 3-4 weeks has been about 14 pounds...I now appear to have swallowed a regulation-sized football that has lodged itself just under my rib cage and the roundness of my face makes Porky Pig look anorexic in comparison...

While reading my chart at one of my recent IV infusions (yes, I DO read my own chart...stealth reading...if it's left out, it's fair game for my eyes!), I noted Dr. She Who Will Not Be Named referencing my *appearance* as "looking Cushingoid"...that's medical speak for effing FAT FACED! My neurologist was trying to politely say (or not?!?) I had developed what is typically called a "moon face" from the roids. This is something that often occurs in a disorder called Cushing's Disease, which is caused by high levels of cortisol in the blood from various causes...and cortisol is a corticoSTEROID hormone naturally produced (primarily) by the adrenal cortex...get the steroid connection here? Solumedrol and Prednisone are both man-made steroids, thus having very similar effects on the body...AKA, FAT FACE/Moon face.


One of my primary concerns when on roids IS weight gain...well, that and stark-raving-circus-freak-crazy psychosis, which...ah...we can talk about at another time. LOL And I know many of YOU have voiced the issue of steroidal weight gain as a major concern also (somewhat quietly, however...as though it is a pornographic topic). It sucks...it's "allegedly" avoidable...but I've never quite figured out HOW to avoid it, short of having my mouth wired shut and strapping myself down in four point restraints (which maybe would "assist" with the steroid crazies, too?...but I digress). The steroids make my HUNGRY...all the time...even if I am too full to eat...I eat/gorge myself anyway. It becomes uncontrollable! I WILL kill for food (not work for it, KILL for it...which would NOT make a great road-side cardboard sign for a beggar now, would it?!?) when on steroids.


Being the "I gotta know why this works this way" type of person I am, AKA, nosey and wanting to be a know-it-all, I did a little research about steroids and increased appetite. And you know what? "They" don't really know why this occurs, just that it does...go figure. There is some thought that steroids (Solumedrol/Prednisone referencing here when I say "steroids" or "roids") suppress another chemical in the body called, "Leptin", which is a naturally occurring appetite SUPPRESSANT in the body (and the word "Leptin" comes from the Greek word "leptos", meaning thin). In lay man's speak, Leptin works to decrease the appetite while increasing body metabolism. So, it makes sense if roids are holding down Leptin, there's no one in the ring to pin down the appetite.


It is a KNOWN fact that Prednisone/Solumedrol cause the body to retain sodium and lose potassium...this is a VERY well known fact to me personally as I always have to take a potassium supplement when on roids to ward off potential heart failure from plummeting potassium levels...my K+ (potassium on your lab values sheet) can drop to dangerously significant lows during steroid treatments...been to the ER before for this and it's NOT pretty!


With the increase in sodium (known as "salt" in the diet) retention comes fluid retention in the body...yep, sodium molecules like to hang on to water to keep them company. The only problem with this is, the "water" tends to build up in the tissues, causing swelling in the extremities and in other places you just don't want to be packing around extra fluid. And...fluid retention or fluid/water that isn't supposed to be there, increases the amount of WEIGHT one carries around. It's like dragging a six pack around in each ankle and your gut just so the nasty sodium molecules have "company"...and it doesn't work to just drink MORE fluids in an attempt to drown (flush out) the sodium. Oh no...sodium will simply collect more friends to deposit in your tissues...the more the merrier to sodium.


And if all of the above isn't enough, Prednisone/Solumedrol ALSO have one last kick in your shorts...roids tend to REDISTRIBUTE fat cells. That's right...not only do you get MORE of 'em, you get the fat accumulating in places not easily concealed...LIKE YOUR EFFING FACE!!! (And also the back of the neck and abdomen, but it's MY mug I'm worried about here).


So...here's the problem in a "nut shell" as I see it...the roids increase the appetite (probably because they're knocking out the body's natural appetite suppressant), thus increasing caloric consumption, while increasing sodium retention and potassium depletion, causing a build of excess fluids, while increasing fat cell production, which gets distributed into places you NORMALLY wouldn't gain weight. Bottom line...STEROIDS CAUSE ME TO HAVE ABSOLUTELY NOTHING TO WEAR IN MY WARDROBE!!! Which is the REAL reason for this post.


I am supposed to attend a somewhat formal ball/banquet on Saturday...I have NOTHING in my closet that currently fits. I REFUSE to run out (like I CAN run right now...that image is really kind of funny!) and buy NEW FAT LADY CLOTHES. My face looks to be that of a cartoon character and I am afraid people will think I am trying to produce a genetically flawed fetus, given my protruding belly looking pregnant and the fact I am 43 years old! This is my dilemma...commiserate with me PU-LEEZE!!!


Oh...I suppose I *should* digress back to the original topic of this post and say some comments about decreasing calorie intake, decreasing sodium and fluid intake, and continuing exercise programs to combat steroid weight gain, but seriously? Do ANY of us DO this when on roids?!? NO...we already feel like crap from whatever MS is throwing our way and most of us CAN'T continue exercise programs even if we were engaged in one prior to the steroids. But I feel I must (because I play a medical professional on the "INNERNET") mention these things "allegedly" DO help with steroidal weight gain...LOL...


So, it's back to my closet to see if there are any TWO pieces of clothing I can sew into one to make some kind of tent to cover this "hunka hunka burnin' love" I call my current steroid fat self. I think it is most likely too late to convert to Muslim just so I can justify wearing a Burka on Saturday...LOL...

Wednesday, October 17, 2007

Blogstipation...

That's the official diagnosis anyway...I am suffering from Blogstipation. This somewhat serious and hopefully not chronic condition has occurred because of a lack of proper compelling substance in my life currently...AKA, quality fiber of life.

Symptomology presents itself subtly...first signs of Blogstipation are noted when great effort is needed to push out a post. One may experience a fullness in their head, compounded by mental lethargy. Bloating of the mind eventually sets in, creating an inability to conjugate verbs, spell simple words, or formulate cohesive sentences. Pained writing of blog posts may be signs Blogstipation has become acute and immediate attention to the substance of one's life should be examined.


Blogstipation should not be ignored. It can be a sign of more serious illness, such as lack of meaning in one's life. There are several over the counter remedies to assist with Blogstipation, such as finding interesting topics via news feeds, reading the local paper, and discussing politics with friends. But these are only temporary fixes for this disabling disease. It is believed ultimately the best and most lasting remedy for Blogstipation is to get a life.


If you also suffer from Blogstipation, know that you are not alone. An online support group will be forming on a webpage near you...
(And if this post wasn't enough "potty" humor for you, click on this link to see what other local Seattle bathroom humor happened today!)

Tuesday, October 16, 2007

Think Pink?!?...

Gonna have to blame Sherry/Have Myelin for this post...she's the culprit who reminded me we are now deep in the throws of Breast Cancer Awareness Month! Like I COULD forget October is the entire month dedicated to the boobs and "pinking thinking"...LOL Pink is EVERYWHERE!

I wrote a post last year on the old AOHELL CHEESE site (in case you're interested in reliving a prior rant at the risk of developing PTSD, here's the stink link: http://journals.aol.com/baitulos/BrainCheese/entries/2006/10/05/wheres-my-parade.../556 ), called "Where's My Parade" and, well...I'm STILL not "over it". As the month of October looms in the fore front, I am once again reminded of OUR gang sign and colors...you know, the MS orange and "Join The Movement" slogan that was unveiled last year?


OK...let me first start with this. THERE IS NOT ANOTHER WORD IN THE ENGLISH LANGUAGE THAT RHYMES WITH ORANGE!!! What WERE "they" thinking? Every other color in the spectrum (minus purple) rhymes with some word...but, alas...NOT orange. We MSers are locked in...there will NEVER be a cutesy rhyming saying for us as long as we are flying the ORANGE banner.


And I'm sorry to beat a dead horse here but...I've said it before and I'll rant it once more (even THAT little line rhymes...but NOT orange!), when I see/read/say, "Join The Movement", I am automatically driven to images of BOWEL MOVEMENTS! Maybe it's the health care professional in me...maybe it's my attraction to bodily secretions...or maybe it's the BROWN and ORANGE colors of the MS Society logo! I don't know..."Join The Movement = BM to me...pure and simple. And, it's NOT a pretty sight.


I understand "they" have even changed our somewhat attractive RED rubber wrist bands to ORANGE?!? Now what? Do I have to stop wearing my read "Band Of Hope" and trade it out for the new ORANGE one? I don't have anything in my wardrobe that GOES with orange! This is going to cause ripples of anxiety across the fashion world...I feel it...LOL


I remain deeply envious of the Breast Cancer Awareness public relations/advertising department...man, are they good! To be able to steal an entire month of the Roman calendar, attach your color and cause to every living person who has ever championed a cause, and raise a gazillion dollars to fight for the "cure"...that's some mighty powerful lobbying. And, to their credit, they really HAVE seemed to influence the declining rate of breast cancer in women.


I'm a little concerned about the MEN, however. Did you know that breast cancer is actually on the RISE in men in the United States? Yep, that's right...per a study published in 2003 in the BMJ, a significant increase was seen in the diagnosis of breast Ca in men. Now granted, breast Ca in men accounts for less than 1% of all cancers...and in comparison to females (roughly diagnosed around 200,000 in the USA yearly), only about 1600 men will be diagnosed with breast cancer. But, the rate of DEATH in the male population is significantly higher than that seen in females. (If you want to read the article, go here: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1126640 ).


So...here's what I'm thinking (albeit twisted). Why don't we MSers "donate" our gang sign and color to Breast Cancer Awareness for men?!? I mean really...orange and brown are much more "manly" earth tones. And I don't really hear where the Breast Cancer Awareness folks have embraced the male breast cancer population in their "movement" (probably to avoid riot behaviors in the women, no doubt)...if they had, there would already BE another color and slogan for the fellas besides "pink"!


Whaddaya think?...LOL...

Blue Dye #24, Naked People, And My Cat Giving Me "The Look"...

This is what my life has boiled down to! The title of this post, that is...

Tomorrow (actually today by the hour on the clock), I get my 4th infusion of Novantrone, AKA, "Blue Dye #24"...this is the first in my series of chemo sessions I am looking FORWARD to having the poison infused into my veins. I am really hoping once the drug kicks in, it will put the stopper on this bubbling relapse I have been experiencing...wish me luck.


Naked people...yes, I DID make it in to work today. I felt markedly improved from my Sunday morning maybe-I'm-coming-down-with-something experience and "bucked" up to return to my job. My job is ALWAYS interesting...we have an unspoken understanding in my office. If we didn't see anyone naked in the day, well...perhaps we really WEREN'T at work! And today, like many days, there were naked people in it. It's rather odd how I just accept this as routine...kind of scary, too.


My cat, AKA, Princess O' Darkness, has been engaging in peculiar behaviors...she has begun to sit and stare at me...not unlike a lion eyeing a piece of prey. She will sit and stare at me for many minutes at a time, not moving, trance-like, eyeballing me. What's up with that? What IS she thinking? Why is she doing this? Should I be concerned? Should I be fearful I may awaken one morning with half my face missing? These are just the random thoughts I have been having. LOL


So, as you can see, I have little to write (Duh!)...but I CAN suggest if you haven't already done a drive by on Bubbie's blog today, you do so...she (with far more insight and talent than I!) has written a most excellent post today about grief/MS/life...very much worthy of the "click" http://bubbiesblog.blogspot.com/2007/10/acceptance.html...a far better use of your time than continuing to read on this page...LOL...

Monday, October 15, 2007

Coming Up For Air...

Well, after that previously depressing post, I thought I should quickly and briefly update all y'all several hours later to say, "I ain't dead yet!" Actually, as the day has worn on (and I DO mean WORN), I have felt somewhat improved from my early morning I-think-I'll-throw-up-or-die experience...the Zofran has kept all vomiting at bay and the combo of Baclofen and Klonopin even knocked me out for a few hours of napping during the afternoon...woohoo!

I DID spend most of the entire day lying about and RESTING, which has probably done my body more good than fancy schmancy pills or the green tea I've been sucking down. I had a somewhat peculiar conversation moment with a friend during the afternoon that left me feeling...I don't know..."odd" I guess. The conversation was about my particular *brand* of MS. I was told rather innocently, "I've known a few people with MS before and you have the worst symptoms I've ever heard of". I wasn't sure if I should feel angry, honored, or guilty! Jury is still out on this one...


It IS funny to me though, how we with MS get lumped into categories of symptoms...even sometimes by those of us ALSO diagnosed with MS. What I know to be true for me is, I only know MY MS, not yours. We may have some similarities and most likely many differences...but your experience is yours and mine is mine and I can only speak from my experience. And likewise to that of a seemingly "healthy and normal" person!


It does bother me a great deal at times, however, feeling like I have to "justify" my symptoms or experience to the "normal" people of the world (and, sometimes on rare occasions, to the MS-self righteous). Sometimes I feel a need to carry around my portfolio of MRI's and point out the large lesion in my cervical spine and the multi-lesions in my brain while diagramming how the central nervous system works (or doesn't with MS)...or perhaps overlaying one of my first MRI's to more recent ones and play a little game called, "counting the aggressive lesion formations since day one diagnosis". LOL


But then I reign myself in and accept the fact "most" people are simply speaking to me from their own sense of helplessness or fear about my condition...God knows I speak from this place all the time! And I try to think how might I be feeling if I were wearing their shoes? If I were the one watching my friend decline in health at what is seemingly an aggressive and rapid pace? When I can put myself there, I quickly lose any anger or guilt and I feel only compassion...for the "normal" person and for myself. We ARE just all trying to get by...


So, off to bed I go...I'm hoping the sleep fairies will touch my forehead and bring me pleasant dreams...and I will awaken in the morning feeling refreshed and revitalized. There's always tomorrow...