Friday, June 16, 2006


     I’m a Leo…most everyone is familiar with this astrological sign.  We’re the outspoken, stage-hogging, prideful, loyal, and dramatic ones.  This is a copy of my Leo Horoscope for today (Ignore the “Angelina Beavermartin” reference…it’s my stage name! LOL):


Horoscope for: Friday, June 16, 2006
Yesterday | TODAY | Tomorrow

Angelina Beavermartin,
Self-examination may reveal signs of unexpressed anger, although you probably will do your best to avoid confronting these negative feelings today. The emotions can be quite subtle, for you could easily disguise the feelings as something else. However, if you harbor unresolved tensions now, they can resurface as someone else trying to manipulate you. Express your hurt with kindness to avoid unnecessary control games.

     I bring you my daily horoscope as a means of explaining why I feel I must share with you the disastrous events of my day yesterday…”To express my hurt with kindness to avoid unnecessary control games”…yeah, right!

     I’m not one to generally go into great detail about my personal frustrations with the medical establishment for two reasons:  1.  Some of my experience is best left private, and 2.  I WORK in the medical field and would never want to read in someone else’s blog how horribly THEY might have been mistreated by ME!  It’s a matter of balance.

     But yesterday’s events just topped my cake, so to speak!  I’ll provide a smidgen of background to catch those of you up to speed who are just joining in:  I have Multiple Sclerosis (duh!) and it is progressing on scans rather rapidly, which has resulted in my neurologist attempting to treat it aggressively with monthly infusions of IV Solumedrol while we await the return of TYSABRI to the market in July or August.  I generally don’t “do” well on steroids, thus posing a complicated “event” for me medically and psychiatrically, resulting in multiple treatments for those complications.  Nuff said on that…yesterday was one of those “complications” days.

     On Tuesday of this week, I awoke feeling extremely bad with muscle weakness, something I refer to as “log legs” (my legs feel too heavy to move), severe diarrhea, a profound tightening in my chest, and a severe headache.  This followed a weekend three-day course of Solumedrol 1000mg IV and was quite unusual.  Being the diligent patient I am, I emailed Dr. She Who Will Not Be Named to consult.  She felt I needed MORE steroids and scheduled me for two more IV infusions.

     By Wednesday, I could hardly move with effort and personally wanted to stop breathing because my chest was so tight.  Everything hurt.  My dear friends schlepped me to my infusion, stayed with me through the event, and got me home, which was NO minor task (sending a thank you not to heaven right now for their records).  A few hours after my infusion and actually feeling a bit improved, Dr. She Who Will Not Be Named emailed to say my potassium and calcium levels had dropped significantly and I needed to start oral supplements.  This has happened to me before with steroids and personally what I had suspected was happening on Tuesday…but, hey…I’m NOT the neurologist, so I played along.  I DID email her back, requesting a bit more “data” on the matter and a few suggestions because I honestly felt she was missing something…mainly, these NEW SYMPTOMS WERE NOT MS and I suspected they were caused by an electrolyte imbalance!  This was her email response:


 Good point – your K today was 2.8; 3.4 on 6/11, 3.2 on 6/10 and 3.6 on 6/9, so I think your body just didn’t like me hitting you with another course of solumedrol so it dropped your K today. Also your calcium was 8.3 so you should chew on some tums too.


     A potassium level of 2.8?  Even I know that is far too low (normal range is roughly 3.5 – 5.0…people can have heart attacks at 2.5!), so I started to get a bit “concerned”.  Concerned for me means I begin to switch modes from patient to healthcare provider and figure out for myself what best course of action should be taken.  Hypokalemia (low potassium level) can cause a plethora of muscular symptoms because potassium regulates nerve conduction…thus the potential for cardiac symptoms if the level falls too low.  The worst symptom for me was the potential of confusion and disorientation because I live alone and would need to be able to call for help if things took a drastic turn.  I poked the K+ pills down my throat immediately and chewed the TUMS with vigor.

     By 3:00am Thursday morning, I awoke with left-sided cramping in my face, both calves tight as steel cables, the headache pounding, and what I was certain was indigestion mimicking chest pain (Potassium supplements cause severe heart burn and I had a normal pulse without palpitations, no sweating, and no palpated arrhythmias …something to watch for if you “think” you might be having a heart attack).  Time to take matters into my own hands and start TELLING Dr. She Who Will Not Be Named what I felt I needed and wanted.  I felt too ill to simply “play along” anymore so I fired off another email:


4:00AM and awake from cramps in my calves and most likely steroid insomnia, too...also now have unusual mild cramping in left side of my face w/ increased muscle fatigue and headache.  Still lucid, but irritable...Perhaps chronic diarrhea and diuretic are depleting potassium too much w/ steroids (taking Tums and Klor-Con orally)?  Unreasonable to throw on a "banana bag" today w/ Solumedrol just in case?...Supposed to be in the Ambulatory Treatment Center at 3:00PM for infusion.  I feel very unwell, but NO ER suggestion please...unknown doctors scare, I tolerate.


     I needed IV potassium.  I was certain.  And I didn’t want to go the time and expense of an ER to get it infused.  That seemed irrational when it could simply be done at the infusion center.  Unfortunately, I did not anticipate the out of office auto-reply return I got immediately from Dr. She Who Will Not Be Named, informing me she was now officially on vacation until 7/03/06 and to route concerns to her office assistants!  Drat and double drat!  I would be forced to “play along again”!

     I forwarded my original email to Dr. SWWNBN office assistant.  It was the best I could do at 4:00am and hope for a 9:00am response.  By 10:30am, I realized that response was not coming and my symptoms were worsening.  I called the next best person I could think to help me:  Sandi, the wonderful infusion nurse at the Center.

     Sandi instructed me to CALL the neurologist’s office because “she has to have someone covering for her”, and told me she would wait for their contact and call me back with instructions.  So, I did as I was told.

     After an unusual amount of time on hold (Dr. SWWNBN office has always been very responsive and precise, which is why I have felt comfortable there), a receptionist came back on the line and gave me another doctor’s name and number to call who was “allegedly” covering for my neurologist.  I hung up the phone and immediately dialed.

     This call lasted for over 10 minutes on hold, never reaching a live person, so I finally had to give up and leave a detailed message for a call back and what I needed.  Speaking coherently was becoming difficult as my frustrations mounted and the symptoms of discomfort were wearing me down.  I called my friend, Saint “EB”, and begged a ride from her on her day off to the infusion center at 2:30pm…I didn’t have the strength to get myself there, let alone even stand in the shower to bathe.  Saint “EB” arrived to rescue me (and entertain me) and plowed up the hill to the hospital.

     On the way to the infusion center, my cell phone rang.  It was the covering neurologist’s office calling me back to make me an appointment.  I explained three times politely I did not need an appointment, but a telephone consultation with the doctor instead.  The woman on the phone finally told me, “Please bear with me.  This is only my 5th day here”…I shoulda known…besides the fact the original message said this particular doctor was a neurological ophthalmologist…I didn’t need an EYE consultation!

     I hung up the phone deciding my fate would have to lay in the hands of competent Sandi, the infusion nurse.  She’d get me an order for IV potassium.  She knew the “system”.  She is a NURSE after all!

     Sandi took one visual look at me when I arrived and told me, “I’m not infusing you with another dose of steroid until I talk to a doctor.  You look like hell.”  She was right.  I DID look and feel like hell and needed someone to assist me.

     I now have to fast forward through this next part of my day…it only got worse!  Sandi spent TWO hours trying to reach ANY physician to get orders for me to hang a “banana bag” (IV potassium).  She never could reach anyone.  No one claimed to be covering for Dr. She Who Will Not Be Named.  No one in the hospital would take responsibility for my care.  Sandi did get stat labs on me (that was already preordered as part of the Solumedrol treatment, so she could at least do this without having to consult!).  After well over an hour, my potassium level came back at 3.0…slightly up from yesterday, but still too low.  Sandi and I began to strategize on what to do.

     I DID feel slightly better after the infusion the day before.  This was a plus.  But another infusion might only lower my potassium even more.  I needed IV potassium WITH the Solumedrol, but no one could be found to order it.  We decided to go ahead with the Solumedrol and see if the ER physicians downstairs would be willing to “consult” by phone without makingme check in there, wasting time and more money just to get an infusion I WAS ALREADY HOOKED UP TO UPSTAIRS, minus the IV potassium.

     Then Sandi got the idea to call my primary care physician, who is located at another hospital to consult.  Perhaps if she consulted with the ER doctors (she doesn’t have privileges where I go for my infusions to give orders herself) they might be willing to give me the potassium. 

     My “primary care physician” is not an MD…she’s a Nurse Practitioner and I respect her dearly.  Frankly, I would ONLY see nurses if the patriarchal medical establishment would just let them practice in peace!  ARNP, Patty, called the infusion center immediately…she’s just responsive that way (as “they” all should be!).  She consulted with Sandi and then with me.  She agreed I needed more potassium.  We worked out a “game plan” to mega dose the oral potassium and redraw the level via HER office, and if needed, I could go there for an infusion SHE could order.  We discussed my symptoms and what to watch for in the next few days.  She told me what foods to eat (always prefacing with, “I know you probably already know this, but I have to tell you”…it’s what I like about her…mutual respect).  She consulted about my diuretic and what to do about the blood pressure medications as my kidneys spill out the potassium.

     FOUR hours later, I made it safely back home and collapsed on my couch, feeling slightly improved from the steroid “high”, and poking in mega doses of potassium and Tums after filling my ravenous steroid belly with food.


     So, is there a lesson to be learned here?  Probably not and nothing I don’t already know.  Trust myself, listen to my “gut”, be kind to my loving friends because I will ALWAYS need them, let go of expectations, and remember to always say “thank you” to anyone who reaches out to help.

     Thus ends my “expressing my hurt with kindness to avoid unnecessary control games”…just as my horoscope predicted!


harkoo said...

thank goodness you are a nurse and knew the system and what to do to get help for yourself.  so sorry this episode of steroids has turned disastrous for you.   hoping you have a more peaceful weekend ahead.

monat77 said...

Holly Cow girlfriend!  Can't you just start writing your own orders!  What an exhausting say the least.  Call me if you need anything!!!!!

sonyasuzanne said...

And I called in the midst of ALL OF THIS?  

I can't even tell you how horrible I feel....I'm so sorry that sometimes I get into my own mind and world to the point of missing other peoples hurts and pain.  I was hoping to check in on you, with a few minutes of privacy that I rarely get, and tell you I was thinking of you.  But you already know this....Gosh, girl, I'm just really sorry you are going through all of this.  

Thank God you are as smart as you are and know what you need and when you need it.  I only wish (yet again) that I could be there to help care for you so that you wouldn't be alone during this tumultuous (sp?) time.  

~~hugs, oh yes, and prayers being sent up for you~~