Change Of Plans...

     It was just supposed to be 3 IVs of Solumedrol, which I had Friday, Saturday, and Sunday...I had some EXCELLENT pain-free days in there, too.  Until this morning...

     Today started out with a raging headache, pounding on my temporal and frontal skull.  I tried to navigate to the bathroom, only to find my legs were as heavy as logs and almost as coordinated.  I believe someone has cinched a very tight rubber band around my upper chest, which has made breathing a bit less fun also.

     Emails back and forth with Dr. She Who Will Not Be Named..."What's wrong with me?", etc., etc.  I think it's some strange infusion/steroid reaction...she thinks it's not ENOUGH steroids.  I didn't have these symptoms BEFORE the Solumedrol...she's ordered two more IVs of the stuff.

     That which doesn't kill us, makes us........sigh in wonderment.  If only my ribcage would allow a deep inhalation to sigh....

    

A Steroid Rant...

     I just finished paying some medical bills (I hope the checks were for the right amounts given my steroid craze right now!) and decided it was time for a RANT.  I'm going after the drug companies today...

     I just read an article Biogen Idec/Elan has made a decision to raise the price of TYSABRI 26% when it returns for sale this next month.  They give lots of reasons and explanations why, but the bottom line is ALWAYS profit.  Money, money, money...making money off the sick.  I hate these bastards! 

     Now, I DO have insurance, unlike some of my MS friends, so I shant complain too much on my account.  But for those of you who don't or who have poorly funded insurance...I hate these bastard drug companies!!!

     I'm plagiarizing an excerpt from a site I found today about pharmaceutical company profits and CEO salaries.  The information is a few years old, but you'll get the picture. 

     And once again, I'M JUST SAYIN'...

Washington, D.C. - A new report by the consumer health organization Families USA refutes the pharmaceutical industry's claim that high and increasing drug prices are needed to sustain research and development. The report documents that drug companies are spending more than twice as much on marketing, advertising, and administration than they do on research and development; that drug company profits, which are higher than all other industries, exceed research and development expenditures; and that drug companies provide lavish compensation packages for their top executives.

The report comes on the heels of a recent Families USA analysis that found prices rose more than twice the rate of inflation last year for the 50 most-prescribed drugs to seniors.

Among the nine pharmaceutical companies examined in the report - Merck, Pfizer, Bristol-Myers Squibb, Pharmacia, Abbott Laboratories, American Home Products, Eli Lilly, Schering-Plough, and Allergan - all but one (Eli Lilly) spent more than twice as much on marketing, advertising, and administration than they did on research and development, and Lilly spent more than one and one-half times as much. Six out of the nine companies made more money in net profits than they spent on research and development last year.

The report also documents profligate spending on compensation packages for top pharmaceutical executives. The executive with the highest compensation package in the year 2000, exclusive of unexercised stock options, was William C. Steere, Jr., Pfizer's Chairman, who made $40.2 million. The executive with the highest amount of unexercised stock options was C.A. Heimbold, Jr., Bristol-Myers Squibb's Chairman and CEO, who held $227.9 million in unexercised stock options.

"Pharmaceutical companies charging skyrocketing drug prices like to sugar coat the pain by saying those prices are needed for research and development," said Ron Pollack, Families USA's executive director. "The truth is high prices are much more associated with record-breaking profits and enormous compensation for top drug company executives."

Pollack added, "Drug companies' commitments to research and development are dwarfed by those companies' expenditures for marketing, advertising, and administration."

In 2000, the pharmaceutical industry was, once again, the most profitable U.S. industry, and profit margins in the industry were nearly four times the average of Fortune 500 companies. According to the Families USA report, three companies - Merck, Bristol-Myers Squibb, and Abbott Laboratories - received twice as much in net profits than they spent on research and development. Three other companies - Eli Lilly, Schering-Plough, and Allergan - received more money in net profits than they spent on research and development.

"The pharmaceutical industry's repetitious cry that research and development would be curtailed if drug prices are moderated is extraordinarily misleading," said Pollack. "If meaningful steps are taken to ameliorate fast-growing drug prices, it is corporate profits, expenditures on marketing, and high executive compensation that are more likely to be affected, not research and development."

The Families USA report is based exclusively on the annual reports submitted by the pharmaceutical companies to the Securities and Exchange Commission (SEC). Since Families USA periodically reports about price changes for the 50 drugs most frequently prescribed for seniors, the report focused on the SEC filings for fiscal year 2000 of the nine pharmaceutical companies that market, or are the parent corporations of the companies that market, these 50 drugs. Mylan Laboratories, a much smaller company than the nine companies analyzed, could not be examined since it had not filed its annual proxy statement with the SEC at the time the report went to press.

This report is available on the Families USA website, www.familiesusa.org.

GRIEF VERSUS DEPRESSION IN MS...How Do We Know The Difference?

(DISCLAIMER:  Occasionally I write articles in advance for "Cheese" and post them later...this would be one of those times because I am in steroid craze right now and a bit cognitively impaired!)

     I suppose it’s about time I take on a topic I might know a little something about.  After all, I’ve worked in the mental health field for the past 20 years.  But the longer I’ve worked in this area, attended workshops, dealt directly with clients, and kept an eye on my OWN mental health, the LESS I seem to really know!  The practice of psychiatry is no more an exact science than any other form of medicine…it’s all about “guess work” and speculation.  It is a system of diagnoses based on the old, “If it looks like a duck, walks like a duck, and quacks like a duck, it probably IS a duck”.  Let me tell you now…a lot of eagles and swans are misdiagnosed in the mental health field!

     I often hear from and read blogs about folks dealing with their MS and the overwhelming feelings that surface when Multiple Sclerosis rears its ugly head.  I hear people talk about feeling sad, angry, blue, overwhelmed, scared, embarrassed, ashamed, and depressed.  I hear the word “depressed” a lot and not just from MSers.  The word “depression” has been used synonymously with any feeling of emotional discomfort we don’t like in our society.  But true depression and its clinical syndrome are not so easily explained away.

     The diagnosis of MS bringswith it a myriad of unpleasant feelings and losses.  Loss of physical function, loss of employment, loss of mobility, loss of self-concept, and many more losses…these losses can be perceived as catastrophic.  They are heart-felt and tangible realities resulting in changes we did not want or perceive.  There can also be a profound loss of sense of security with MS as fear of the unknown forces us to plan for futures without any type of set map or guidelines. 

     It is not only normal, but also essential to a healthy psyche to grieve these losses as they occur.  Grief is NORMAL.  Grief is the process of the mind and soul rebalancing itself to changes.  Without the grief process, we would become lost in our existential darkness.  Some might even refer to the grief process as the “Dark Night Of The Soul”…that sense of profound absence of light and hope and connection to ourselves and our higher being.  Grief is when we begin to question life and its meaning and the meaning of MS in OUR lives.  Grief is not clinical depression, although depression is presumed to be a steppingstone in the grief process according to Dr. Elizabeth Kubler-Ross, a renowned writer and researcher in death and dying.

     Grief in itself is not a condition requiring treatment because it IS normal.  The grief process is best experienced via a supportive and nurturing environment.  The grief process will require space and time to exam uncomfortable feelings and there is no set time limit on how long one should experience grief.  Your past baggage, coping mechanisms, and personal insights will determine how long you will grieve and how often your grief will surface.  And feel free to smack the person who tells you, “Get over it”.  They are obviously insightless morons who are afraid of uncomfortable emotions and quite possibly their own shadows!

     There is a period one eventually reaches in the grief process called “acceptance”.  Acceptance doesn’t imply you have to love your MS or hug it like a long lost friend…instead, you become “tolerant” of it, you “deal” with it, you strategize and take control of what you can and you go on with your life as it is now…knowing the next lovely change MS brings will most likely also surprise you with yet another grief process to work through.

     Depression in MS is a much more difficult beast to tame and it IS common in MSers.  Literature suggests clinical depression occurs more frequently in MS because of progressing disability, the nature of the disease destroying insulating myelin surrounding nerves that transmit signals effecting mood, lesions in the frontal lobe directly connected to emotions and cognition, and side effects from Interferons and other drugs.  Researches simply don’t know why clinical depression is so common in Multiple Sclerosis because some people who are profoundly disabled are not and do not become clinically depressed.

      Often times, the very symptoms of MS can also be interpreted as symptoms of depression.  Take for instance chronic fatigue, listlessness, difficulty concentrating, decreased sex drive, insomnia or hypersomnia, uncontrolled crying or affect dysregulation, or unexplained aches and pains…these are ALL possible symptoms of MS AND clinical depression!

     So how do we know when we are grieving, experiencing physical symptoms of MS, or in a full-blown clinical depression?  Here are a couple of tips:

 

1.      Grief and sadness lift a little when something pleasant happens.  Clinical depression does not.

2.      MS symptoms, which mimic clinical depression, worsen in relapse, and then some or all remit with remission.  Clinical depression does not.

3.      Grief and MS symptoms do not generally present without some sense of impending resolution or “acceptance”.  Clinical depression feels hopeless.

4.      Grief is generally time-limited and will resolve on its own with support.  Clinical depression can last weeks and months and is generally unremitting without intervention.

5.      Constant thoughts of death or suicide or planning suicide attempts are not symptoms of grief.  And just for the record, one study has shown MSers are at a risk of suicide 7.5% more than the general population.

 

     I tend to be a big believer in the resilience of the human spirit, physically, spiritually, and mentally.  We are hot wired to survive and to adapt to change.  But in Multiple Sclerosis, those “hot wires” can reach a melting point physically and interrupt that adaptive survival process.

     If you have MS and you are experiencing grief, do whatever is necessary to move into the process so you can eventually emerge on the other side.  And if you are clinically depressed, seek help.  It’s not a character flaw or a sign of weakness.  Reach out to what is available to you until you have exhausted your options. 

     I trust you will know what is right for you...

 

Pain Free...As Free As The Wind Blows (sung to the tune of "Born Free", of course!)

     Day two of the IV steroids and I've got that James Brown, "I feel good, YAAAOOOW", going on!  No pain, ALL gain...    

     Why is it the things that make us FEEL the best, are always bad for us if done or taken in excess?  Like sunshine, alcohol, exercise, food, and of course STEROIDS???  I'm just sayin'...

Navigating Steroid Road...

     I had a very "interesting" voice message left on my cell phone, which I picked up shortly after my first IV Solumedrol infusion today.  It was the voice of a dear friend singing (a bit off key mind you) the following words to the tune of Willie Nelson's "On the Road Again":  On the Roids again...just can't wait to get on the Roids again.  Half my life is sharing steroids with my friends and I can't wait to get on the Roids again.  All I can say is, at least I'M not the one who's psychotic yet!

     Today's infusion went fairly well actually.  Aside from the "dropsy" I feel during the infusion and afterward and the taste perversion (one I like to graphically describe as feeling like a dog has taken a crap in my mouth), it went pretty well.  I prophylactically started the psychiatric medications today "just in case" and have spent much of the day just relaxing and watching TV while I can.  Usually by the 3rd day, I am unable to focus or concentrate on anything and spend most of my agitated time pacing.

     I've got a Heparin lock dangling from my arm covered with a stocking mesh, which does pose a bathing problem, but nothing a bit of Saran Wrap and tape can't accommodate.  I tend to prefer to leave my catheter indwelling so as not to be stuck 3 different times by three different nurses with three different skill levels...it just saves me AND them the stress of restarting it.

     All in all the day was fairly eventless.  I have to say one of the side effects I DO enjoy is the extreme visual clarity that sets in about a half and hour after the infusion starts.  Colors become so much more intense and light seems to be brighter.  I can only imagine this must be a somewhat similar experience to watching Walt Disney's Fantasia while on acid...so I've heard anyway through the Timothy Leary research. LOL

     Unfortunately, I did discover tonight my blood sugar is creeping up a bit high because of the steroid side effect...it's always something!  So I will have to cautiously monitor my intake and probably cut out all sweets until I get through this weekend.  If THAT doesn't make me psychotic, I don't know what will!

     I know this will get posted as a Saturday blog, but understand it's already past 12:30 AM Saturday morning here...that's still Friday night to me.  I'm hoping Friday night doesn't turn into Friday night Saturday day...it does certainly make navigating Steroid Road a bit more difficult without any sleep!

     Puttin' the pedal to the metal and cruising the highway...

No Pink Slip Today And This Is A GOOD THING!

     I had "THE" talk today with my Big Boss...you know the one.  The one most all of us diagnosed with MS dread having with our employer?  The talk where we go in and bare our souls (and place our necks on the chopping block) and disclose we HAVE MS.

     Actually my employer has known I am diagnosed with MS.  I "came out" shortly after my diagnosis in 2003.  I've routinely had to fill out the dreaded FMLA (Family Medical Leave Act forms, which keep my job for me in my absence) papers every time I have needed more than 3 days off from work in a row (which is almost anytime I've had a relapse!).  I didn't keep my diagnosis a secret at work for several reasons, but mostly because my coworkers are more like family to me.

     Until today, other than asking for time AWAY from work for illness, I have never asked my employer for anything.  I've never wanted to go down the accommodation road and enter the realm of American's With Disabilities, so I've just managed to accommodate myself wherever I could.  Good grief...last year when I briefly had to walk with a cane, my employer nearly "spazzed out"!  So this year when I probably SHOULD have used a cane, I didn't...I just went ahead and stumbled a lot so as not to attract the attention a cane brings.  After all, everybody stumbles!

     Today I had to address the "Big Boss" about a temperature issue in our satellite office that I've been unable to remedy on my own.  IT'S TOO DAMNED HOT IN THERE!  Yep...I had to play the MS CARD.

     As it may occur for several of you, when I get overheated my MS symptoms worsen.  My leg gets weak/numb, my left arm (and writing hand) gets numb, and my left eye blurs.  Not to mention the incredible fatigue that worsens from the heat.  Our satellite office is nothing more than an oversized closet with west facing windows and absolutely NO ventilation...it's a torture chamber for someone with MS!

     So to make a long story short (or perhaps even longer), I had to have "THE" conversation today about my needs to be able to do my job effectively and efficiently at the box office.  The conversation went pretty well I think...I tried to refrain from my usual cutting-edge humor and get to the point of what I needed...an accommodation.

     The "Big Boss" listened intently to what I had to say (or at least appeared to be listening) and told me she'd work on the issue.  She even thanked me for coming in and addressing the problem directly with her AND for giving her some reasonable suggestions on how to remedy the problem.  I walked away feeling all warm and fuzzy inside...that is, until I realized I was too HOT again!  I learned too much "warm and fuzzy" can cause my MS symptoms to worsen also...LOL

     Anyway, I don't think I'm on the verge of being fired...at least not since I've now thrown the "official" MS card on the table.  That ought to buy me a few more good years at the very least...no one wants to be in the press for firing a gimp after all!

     And besides...I don't think I'd look good in a "pink slip"... 

Let The Games Begin...

     I had the day off from work today, so I spent much of my time making necessary preparations for my weekend STEROID PARTY.  I start my three day course of IV steroids on Friday morning.  Experience has taught me I must be PREPARED for these events or "bad" things can happen!

     First...I went to the grocery store as you can see by the picture.  Steroids make me ravenous.  So much so I have resorted to eating things in the past I would not feed a rat only because I had no REAL food in my house!  I'm still sporting the extra weight I put on from the last round of IV steroids, unfortunately...you'd think that would be enough of a deterrent to keep me from buying junk food, but it's not.  And it wouldn't matter if I only bought myself "health food" anyway...I'd just order out for pizza in my daze!

     Second...I've got my emergency contact lists printed out just in case I get a bit "loopy" on the roids.  Loopy for me has meant anything from sleeplessness for 48 hours to blatant psychotic symptoms.  I ALWAYS try to avoid this!  And, after all, there ARE drugs that help...I have my bottles filled.

     Third...I have a strange (or perhaps not so strange) habit of needing to clean my house whenever I am going to be gone on vacation OR whenever there is a small chance I might be rendered incapacitated.  This avoids much embarrassment later on if caring friends (or medics) have to enter my home for any reason...there's no need for anyone to see my laundry basket full of worn undies!  And, yes...my mother DID teach me to always put on the "draws" without the holes in them if there's a chance someone might see them, too.

     Fourth...and let this be a lesson for everyone...ALWAYS and I mean always shave your legs BEFORE getting that first dose of IV roids if there's a chance you might get loopy, too.  I nearly needed a blood transfusion last year when I tried to do this (mostly out of boredom) following a course of steroids that made me "loopy" and sleepless!

     Fifth...I've got the Tootsie Pop suckers laying out and ready to go.  IV Solumedrol givesme a wickedly nasty taste in my mouth during (and after, too) infusion.  It IS important to pack enough to share with your infusion nurse, however.  Somehow it's OK for them to have a sucker if you're slurping on one, too!

     As usual, I'll try to document the "highly eventful" thoughts that seep through my mind while getting my ROID RAGE on!  But just in case I miss a day or two (You think I type mindless blather now?  You should hear me on steroids!), might I suggest a great blog read over at:

http://miss_suzy.typepad.com/my_weblog/ 

Suzy is always good for a laugh or a tear over at "Bliss"!

     I'll be sending the canary into the mine shaft first thing tomorrow morning...wish me luck!