ER Wars Round 2

Winny Vs. The Management

Talked with the management of the BAD ER I saw a week ago.  This is how the conversation went:

ER Director: "My nurses didn't do anything wrong"
Winny: "They were TRIAGING in the order people presented"
ER Director: "That is what Triage is.  They WERE taking people in the order they presented."
Winny: "Don't give me that, I have worked a triage desk.  That is NOT traige. Triage is the worst first."
ER Director: "Well, maybe the person they took in WAS worse."
Winny: "I don't think so, and you JUST TOLD ME the criteria was the time people checked in."
ER Director: "Are you a nurse? Do YOU know the FIVE LEVELS of TRIAGE?"
Winny: "I don't have to know the FIVE LEVELS of TRIAGE to know you were not triaging properly. I have been at your ER before many times and have always been traiged properly before.  Something was badly wrong this time and that is why I am complaining."
ER Director: "Well the board said you had a 'headache',  I am sure the child they triaged was worse."
Winny: "I am sick of the prejudice people exhibit about headache pain.  I had "SEVERE PAIN".  I complained to the ER clerk 2x's my sister once.  Nothing was done.  Nor was I triaged."
ER Director: "I have heard this about this prejudice before, it does not exist.  People say the same thing about having Medicaid coverage."
Winny: "I work with medical, I know about being prejudged by a nurse that thinks I am drug seeking.  I have experienced the prejudice against headache patients up close and personal more than once so don't give me that!"
ER Director: "I checked your medical records. These were the same nurses you saw before the last time you were here"
Winny: "Oh, really?? Can you really say that the SAME EXACT nurses were on staff that were on staff the last time I was there?  Because I really don't think so."
ER Director: "I can't do that, so I guess they were not the same nurses"
Winny: "I thought so."
ER Director: "You need to complain to the head of registration.  The clerk should have notified the nurses"
Winny: "The clerk cannot make medical decisions.  Do you have the clerk making medical decisions there??"
ER Director: "No, the clerk cannot make medical decisions.  But the clerk should have notified nursing. He was new."
Winny: "I suspected as much, but that should NOT be my problem.  You coordinate with the head of admissions if the admission clerk is causing issues with your ER procedures.  Your nurses are in charge of the waiting room just as they are in charge of the triage room.  They need to keep aware of what is going on in the waiting room."
ER Director: "They had emergencies in the back, and were transferring a patient.  They were busy taking care of patients"
Winny:  "I don't have a problem with that, but they need to keep aware of what is going on in the waiting room, not rely on a clerk to let them know.  AND we let the clerk know what was going on.  The lack of communication again is NOT MY PROBLEM.  You need to make your nurses aware of what a person in extreme pain looks like.  I was not jonesing for a fix.  I was in EXTREME PAIN, which I communicated as clearly as I could.  Someone somewhere made a decision that my pain was less important than a child with the sniffles.  I have a problem with this big time.  I was not asking to be seen in front of a true life or death emergency.  I was asking to be triaged, properly triaged."
ER Director: "Well, there were ambulances coming in."
(I let this lie lay, but it is a teeny tiny waiting room, you can HEAR an ambulance come in. The ambulance bay is next to the door.  Duh!! )
Winny: "I don't need excuses, I need this not to happen the next time someone in extreme pain presents at your emergency room"
ER Director:  "You need to complain to the registration supervisor.  My nurses did nothing wrong.  They let me know that you had an issue."
Winny:  "If they had acute patients in the back, they certainly had no problem leaving them to come and gawk at me through the fishbowl the clerk sits in when I did a melt down.  If they are aware of what is happening THEN why was I ignored out there?"
ER Director: "These might have been radiology techs or lab techs that were there.  Those couldn't possibly have been my nurses"
Winny:  "These certainly looked like nurses to me.  I was insulted by this and the clerk certainly knew how to pick up a phone to call security when I blew up."
ER Director:  "Security isn't there that time of night and the police were not called"
Winny: "That's because the clerk hung up as my sister hustled me out the door while he sat there with his mouth open, and the rest of the crew stared at me, no one offering ANY ASSISTANCE."
ER Director: "Well, you need to follow up with the registration supervisor."
Winny:  "I'll tell you what I am going to do, I will follow up with the registration supervisor, but I am also going to follow this up with letters to your administration.  I also am requesting you educate you staff on what EXTREME PAIN looks like.  We don't sit still, we aren't quiet, and we aren't pleasant.  That's because we are in EXTREME PAIN.  I am also going to get with my physician to get injectible meds so I don't have this problem again and will not need to use your emergency room in the future."
ER Director: "That is good about the injectibles.  This is what I did when I had migraines."
Winny: HANGS UP (Thinking, yep the ER Director won't go to her OWN ER when she had migraines.  Figures!!).

In the meantime, my very nice PCP drove over to the pharmacy and hand delivered my prescriptions for injectible meds, including dilaudid.  He had extensive instructions and wanted the pharmicist to receive them in person.  How many doctors are left that would do this?  A bright point in my week!!!

Hoping all of you have pain free weeks ahead, and never have to put up with what I did at this ER.  After I am through with this ER I hope they will never treat a person in pain or a person with a headache the same way.  I am ready for Round 3!!! Ding!!

Getting Back to My Old Normal?

One Crisis Over, Waiting for The Next

I used to say my life was like living in a lower apartment and waiting for the next shoe to drop and my upstairs neighbor had a bigger shoe obsession than Imelda Marcos (I guess you have to be my age to understand THAT joke).  One problem gets solved, three more jump up to get in line to be next.  Big Sigh!

I haven't been blogging much this month because my Mom has been taking a lot of my attention and energy.  She had her gallbladder removed laproscopically a week ago today.  Seven huge gallstones were stuck in it AND it had adhered itself by all its edges to her liver because of adhesions from her colon resection a few years ago.  One other issue solved by the operation - her constant runny nose seems to be gone.  Wonder if gallstones can make your nose run??

Mom is 81 years old, and did not bounce back from this operation very quickly.  Her blood pressure was too low for her to receive pain medication for hours after the surgery so she and I stayed the night at the hospital.  I told the nurse at about 6:30 PM that I was uncomfortable taking her home in too much pain and so far away from the hospital.  Mom was feeling better about one or two in the morning, and I was feeling worse.  I am way past the age where I can comfortably sleep on two chairs pushed together!   The Legs and The Belly and The Headache were determined to keep me awake, in addition my back needed a right angle in the middle of it to make me fit in those chairs!  I stayed with Mom, determined to keep her oriented as to where she was and what was happening, and helping with technology like call lights and cell phones.

We made it home Friday afternoon, and it took Mom until Wednesday morning to feel close to normal again.  I finally had to make her walk walk walk to get all her innards to work again.  Even with pain medication I am sure it hurt, and I hated to do it, but things were not progressing because she just wanted to sleep and not move.  After walking and drinking lots of liquids she started feeling better.  Today she was as grumpy as could be, a sure sign of improvement.  Unfortunately she was also grumpy Saturday Sunday Monday Tuesday and Wednesday!!!  But grumpy is improving both in the frequency of the complaints and the substance of what she is complaining about, so I am glad she is grumpy.  Next week we return to see the surgeon and then on another day go to see the vascular surgeon about the aortic aneurysm.

More ill health has hit members of the family since I last wrote.  We have absolutely no luck in health related issues.  I am wishing the tide is turning and better health and more energy are coming our way!

I saw my PCP today, and he is increasing my fentanyl patch from 12 mcg/hr to 25 mcg/hr.  This is because I am still having significant pelvic, leg, lower back, and abdominal pain not to mention break through pain from The Headache.  I was asked what parts of my body are working OK, and I put my hands at my eyebrow level and said from here up I'm at 100%, everything else is toast.  Got a laugh but I really wasn't kidding!

I was able to wander into work today, and actually felt useful.  I was able to help several co-workers with some problems and work with a client on what they need to do to set up and bill for new services at their location.  Healthcare is never easy.  Something you would think is simple is extremely complicated, and something normally complicated in any other type of business is generally almost insurmountably terrible and mixed up with state and federal regulations that are unbelievable. 

Other countries do not have this hopelessly convoluted system we have developed here in order to capture cost and get reimbursement for services.  I don't think healthcare reform will ever touch this either, as there are entire industries devoted to special areas of healthcare management and reimbursement.  I guess its good that my company is very flexible - an advantage to being small, it is very nimble and able to make large changes very quickly.  It is one of the things I truly love about how they/we work!

Thinking of work, I am praying that the increased duragesic (fentanyl) dosage will allow me more pain free hours and increased functionality.  My PCP said today what I had already figured out - pain relief is not going to change the physical problems like weakness and leg cramps and foot cramps (I didn't know how far my feet could curl downwards until I started having these about a year ago - OUCH!) and inability to stand/walk for long distances or periods of times.  Big Sigh again.

I go on April 9th to see Dr. House at Washington University in St. Louis to see if there is any unknown metabolic or other bizarre lurking illness to blame for my leg problems.  I told my PCP I am not quite sure what I am going to see Dr. House for because all I can get is bad news or worse news, there is no possiblity left in my mind for good news.  Just another shoe dropping from my overhead neighbor to anticipate!

Hoping you have all had good days since I last looked.  I will try to get caught up on my reading in the next couple of days - I feel so disconnected.  I have just not had the energy or the will to do much in the last week.  Hoping for better things next week and the week after!

Neurontin for Nerve Pain

New Try for Old Med

Saw my PCP today and agreed to try taking neurontin again for The Legs.  This will be my third try with neurontin, the first two were flops.  Instead of titrating up, he wants me to start at 300 mg or 600 mg at bedtime.  The second time I tried neurontin it made me excessively sleepy, but not so tonight.  I had a few moments of sleepiness, but other than feeling tired (which I should - I've had about three hours sleep in as many days) I am not too sleepy.

I could not take Lyrica (for me a Dr. Jekyll and Mr. Hyde type of drug) but neurontin (gabapentin) is the precursor for Lyrica and can be used for nerve pain.  I took 300 mg at 7:30 and waited until 9:00 to take the second 300 mg.  I am very very very nauseous.  I will take some phenergan soon if I can keep it down.

Neurontin so far has taken away most of the burning pain in The Legs and almost all of the pain from touch.  The pelvic pain is still bad, but about an hour after the second dose I quit having the leg jitters from pain.  I was actually able to get up and push a swiffer mop around the kitchen without a lot of pain, which is the best it has been in months and months.

I am noticing my left eye is turning in - which it does when The Headache is bad.  The first 300 mg did rile up The Headache but I turned up the amps on my occipital stimulator and have been able to buzz it down a notch or two.   The Headache is not really happy, and I want to always keep The Headache happy and asleep!

I did not expect neurontin to effect my digestion, but it seems to have increased my intestinal motility - which is not a good thing for me, as I process food too quickly anyway.  The first 300 mg took a tiny bit of edge off the pain but I still was having severe pain in my legs and pelvic region.  The second 300 mg really worked better for the pain, but that is when the nausea started. Now three and a half hours from the first dose and two hours from the second dose my eyes are acting really funky like they can't stay looking at something very long.  I keep having to blink and redirect the eyes.  Hoping this is just temporary and will wear off.  The pelvic pain is still there, a little less than it was which is a blessing.  I don't feel very coordinated and feel a little short of breath.  Hoping this is temporary also.  I really need a pain solution that does not include narcotics.  The Headache and The Belly absolutely refuse to cooperate with narcotics.

I saw my immunologist Dr. Calm today.  I am off the cyclosporin.  Yeah!! He told me that my hives may not be connected to the mammalian meat allergy.  Bummer.  I asked him if anaphylaxis from the mammalian meat allergy could cause pancreatitis.  The first acute pancreatitis attack I had was about six hours after I ate two or three Slim Jims for lunch because I was running errands on my lunch hour.

I have a definite appointment with Dr. Kildare on Wednesday Jan 5th at 1:00.   My PCP said Dr. Kildare did call and talk with him about pain treatment options, which is the "why" for the neurontin.  At this point, I don't care what I take, as long as it works.

I feel right now like my lips are swelling and my nose is swelling and having a bit of trouble with wheezing.  Good heavens, I surely can't be allergic to neurontin.  My eyelids are itching, and my ears feel hot.  Better sign off, and take some antihistamines.  Maybe I ate something or took something OTHER than the neurontin to do this?? I did have some real butter with my low fat meal this evening. Arrrrrgh. And now The Headache is starting to spike forward through my brain from the back and come out above my left ear.

Can you run away from your body???  Wish I could!!!  Gonna antihistamine up and hope it helps!!

Calling Dr. Kildare

I'll Be Hornswoggled

Called and left a message with Dr. Kildare's nurse today.  I have an appointment tomorrow to talk to my PCP concerning effective pain management, as Dr. Kildare's nurse had told me that was who needed to manage my pain for The Legs, especially since Dr. Kildare was still reviewing my records.  I said that I had an appointment to discuss pain management and I would appreciate it if Dr. Kildare had anything he could let my PCP know that would help us make adequate plans.  I left my name, my phone number, and my PCP's name and phone number (which Dr. Kildare surely had since my PCP had referred me to him).  I didn't really expect that Dr. Kildare would have anything to add to the discussion, but thought I should give him a chance because his lack of response was going to be part of my conversation with my PCP.

When I got home this evening there was a message from Dr. Kildare's nurse on my answering machine.  I am to call back and make an appointment for January 5th with their scheduler to see Dr. Kildare.  Whether or not he has a plan is still a question in my mind.  I fully expect to arrive and get grilled again about my plethora of problems without any reference to my medical records.  I hope I will be disappointed, and he will have done his homework.  I need to get some kind of plan going so I know what actions I can take to get better, if that is possible.  I dread starting all over again one more time. 

I guess I should be glad I have an appointment before the end of March 2011.  Just wondering why wasn't this appointment scheduled when I was there?  Return in 3 wks....not too hard to write, not difficult to comprehend.  I know, blame it on the computer!  That is like saying the dog ate your homework, a disappointing lack of originality.

I wrote an email to a dear friend this week about a mutual friend who is very ill.  He told me not to "isolate yourself from those who love you".  I had to take a hard look at myself.  I am isolating myself.  I limit my contacts with old friends because I don't like to worry them.  As you can tell from this blog, I worry enough about me that they don't need to!!!  Everyone has enough burdens to bear, I don't want to add mine to thier loads.  I told him I will make reconnecting with friends my number one resolution and priority next year.

Tomorrow (or rather today since it is now early AM) I am seeing Dr. Calm the immunologist, and my PCP. The Legs are dancing tonight because it hurts too bad to hold them still.  The Headache is OK, and The Belly is behaving for now. Just hurting a little too much to sleep.  sigh.  But life is still sweet and the sky will be blue in the morning and the moon sits like a pearl in the oyster of the milky way at night and somehow someway I will continue to see the day through.

Revolt of The Legs

Living in Quandary

Have I mentioned lately I love my job?  Even with the travel, even with the pain, even with the fatigue I love doing what I do.  It's hard to define why I love it because what I do is not set in stone, it varies from day to day, sometimes it's not easy or pleasant, and physically even though it is a desk job it is becoming difficult to do.  I enjoy everyone I work with.  My bosses are great and supportive - plus they know what they are doing and are passionate about what they do.  It's intellectually stimulating and mentally challenging. I work with healthcare administration and healthcare finance which is a field I chose to work in approximately 20 years ago. I get to work with small hospitals all across the United States many in rural areas, and advocating for rural healthcare is another passion of mine.

My sister said when I got this job over eight years ago that I had found my dream job.  She was right!  I campaigned for this job.  I could tell from my first interview with them that not only did I want to work there I HAD to work there.  It was a big change for me.  I went from mega corp to tiny corp; from tons of direct reports and fiscal responsibilities to no direct reports and no fiscal responsibilities.  I went from exasperated and aggravated to excited and engaged.

I am sad tonight, not about my job or my work, but about whether I am going to be able to continue with my job, my work.  My body is not recovering well from my last trip.  I fear increasing disability, increasing medication, increasing pain.  I am wondering, am I now really disabled?  Is there someway to absolutely know?  I have great amounts of will power and have been using it to keep going but now even that may not be enough.

I experienced a great deal of pain in Michigan, and medicated and kept going even when I shouldn't have.  Even getting in and out of cars was becomming difficult. Coming back, in addition to the adventure of the flying puke fest, I experienced a great deal of difficulty walking and standing.  Flying is always an issue because of the walking necessary, and the standing necessary, and getting on and off planes while hiking a PC and a carryon full of medication.

Last weekend was frightening as the leg malfunctioning continued to evolve.  Saturday walking was very difficult.  I felt like I was shuffling along or using my thigh muscles to scooch the legs where they needed to go.  Saturday night the pain was pretty bad.  Sunday morning I woke up with big round numb areas in the bottoms of my feet and my legs tingled all the way up to my hips.  Before Sunday, the tingling only reached about six inches above my knees.  I felt very tired.

It is now difficult to get up from a couch or a chair.  I feel my legs are very weak.  The pain increases and decreases throughout the day but I ended up going home early today because of it.  Driving is hard, sitting is hurtful, and walking is an ordeal.  My incontinence issues started increasing almost two weeks ago and have settled into a new kind of normal that is worse than it was before Michigan.

I saw my PCP today and we discussed these issues.  I could not move my left leg, my left knee, my left ankle, my left foot against resistance.  I could barely move my right leg against resistance.  My reflexes have been gone almost a year now, and I think the damage decided to take another leap forward (or perhaps that would be a leap backward??).  I am much worse than I was a couple of months ago.

My PCP wants me to get EMG testing, even though I told him that Dr. Sassypants said there really wasn't anything anyone could do. I don't have structural issues that can be fixed. He also wants me to go back to the local neurology group which I really don't want to do.  I have issues with that practice, and he really doesn't have anyone else he can refer me to.  He knows why I don't want to go back there but felt like this is urgent enough it wouldn't pay to try to get established somewhere else out of the area.

When The Headache was in its full undiagnosed horror I had a neurologist, Dr. Dense, in that group that not only did not listen to ME, but also ignored the advice of the neurology group she sent me to in St. Louis.  She refused to prescribe the only medication that works for The Headache which they had prescribed in St. Louis for a few weeks until I could get back to her. After a month without any pain relief she told me she would only prescribe the medication that worked (indomethacin - NOT a narcotic)  if I signed a paper saying I would move my care to another practice! Totally unethical. I'm not thrilled at the prospect of seeing her again.  My PCP says he will speak to the head of that department but I don't think I will have any luck getting reassigned to a different neuro.  sigh. I have absolutely no confidence that Dr. Dense will be able to help me at all.  A waste of time, money and effort that I can ill afford.

Per my PCP, I am to stay off my legs as much as needed to keep the pain at bay.  Unfortunately that would preclude walking at all.  I am to let them know if it gets any worse.  I was told that I may need a fancy schmancy rollerator walker soon, and may have to retire BLING.  I fear even that would be a stop gap measure until I am forced to full out wheelchair time.

My PCP has modern views on pain management, and wants me to keep him in the loop if I need stronger narcotics, and told me to keep taking the Soma also.  With so many people having issues getting adequate medication for pain relief, I am very grateful that my PCP understands and is willing to prescribe.  I am very sparing in my use of pain medication (although I did take some tonight) and am still working on prescriptions I filled last spring.  He would like me to take more and do it on a schedule in order to stabilize the pain, but right now I am willing to be in some pain in order to function at a higher level.

I have an appointment with Dr. Calm to discuss the cyclosporine and The Hives tomorrow.  I took blood tests for that today.  All these appointments are crammed together because I had to reschedule while in Michigan because we extended our stay.  Already tired of seeing docs!

Going to bed soon, as my pain meds and my antihistimines are making me sleepy.  Hoping that maybe The Legs will be better by next week.  Sigh again. This way I can delay making any decisions I don't want to!!

Hey, at least the cankles are better!!!  And if I have to get a rollerrator walker, I'm gonna trick it out with spinners, rear view mirrors, and a special paint job - and maybe curb feelers and some fuzzy dice, and one of those horns that plays songs!!

I've Got A Fever

The Only Prescription is More Cowbell!!

Have been feeling really tired, sorta thought it was just my digestive issues, but found out yesterday I was running a fever, and I'm running one today. Going to my PCP to verify that its not contagious, but I think I have been running one for several days. My boss has a handicapped son who is very succeptible to flus and I would be horrified if I passed something around at work and it got his boy sick. I really need the money from working, but I'll feel much better in my heart if I make sure I can't pass anything along before I go to work knowing I have a fever. Have taken some acetaminophin and it felt like it dropped the fever substantially.

Dr. Bellyfixer said it could just be the pancreatitis, since the pancreas sorta eats itself with digestive enzymes and then your body has to absorb the damage which can lead to fever...or it could be another UTI, or it could just be nothing. The Belly is really complaining today as it didn't like being poked on by Dr. Bellyfixer. The Headache is better since I "retuned" the occipital stimulator.

Enjoy the long and short versions of the "Cowbell Skit" from SNL. The link More_Cowbell at the bottom leads you to the official long version. Wishing cowbells could make me better, but watching Will Ferrell playing the cowbell is the next best thing.





More_Cowbell

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