Care4Dystonia, Inc.

It’s been some time since I’ve written. Blame it on life !! Work as an NP has been busy, sometmes too much so; but then again, so has ICU work. My day as an NP day begins at 08:30 am.

08:30 am BF arrives as a new patient for a complete physical and medical history. 0910 am KS needs blood drawn to assess her Coumadin dosing regimen.10:00 am LP arrives for a 5 hour Glucose tolerance test.10:15 am ST arrives for a follow-up visit and evaluation of her BP medications.11: 00 am CG calls reporting that he has palpitations and SOB. Schedules a visit in the afternoon.11:05 am TJ arrives for a complete physical Exam. New patient!12:05 pm JK arrives for a PT-INR check.12: 30 pm Fifteen patients have called requiring prescription refills.12:45 pm JG calls about a fall she experienced. MRI ordered. 1:20 pm New patient MS arrives for as diabetic-cardiac evaluation.2:03 pm CG arrives in heart failure and new-onset Afib. Needs IVP Lasix, CXR, and EKG. Had stopped his Lasix on his own after undergoing a CABG, without telling anyone. Requires medication compliance teaching.2:30 pm Grab a sandwich wrap at the local residing McDonald’s next door along with a 8 oz strawberry shake. 2:40 pm Begin calling in prescription refills. Get halfway finished.3:00 pm LB arrives as a new patient for a complete physical and history. 3:45 pm Eight more patients have left messages asking for “callbacks” about concerns, questions and problems.4:00 pm Unexpected heart failure patient in my colleague’s office.4:10 pm JG arrives for a complete physical and history. Weight 380 pounds. 4:45 pm AM arrives desiring a glucometer teaching lesson.5:10 pm Is this day ever going to end ? It goes on and on…5:15 pm IH comes in with a URI. Needs a Z-pack and CXR.5:30 pm Finish calling in prescription refills. 5:45 pm Begin returning and documenting patient phone calls.6:08 pm Billing codes and CPT codes need to be documented along with today’s incoming lab reports.6:40 pm It has been a long day. I need a visit to a spa! I review the next day’s patient charts. What’s ICU work like ?? Next Blog !!

I was reading a New York Post today in our staff lounge. A colleague had cleverly posted a recent NY Post article describing the wasteful spending by a local area hospital CEO. My Gosh – was I surprised at the list of expenses?

At a “development meeting” in Palm Beach, Fla., the CEO had spent $764 on a single dinner with a guest and $450 for a single night in his hotel. I have never in my life had a dinner that cost $ 764 dollars in the past. The most I could afford here in NYC was a single $ 30 buck dinner without a guest. (And that was without a glass of red wine!) Just think, $ 764 dollars is equivalent to almost a 14 hour shift at a premium nursing rate here in Manhattan. One additional nurse during one shift.

Other Expenses included:
Billing $74 in tennis-court fees and $61 at the tennis shop at the Boca Raton Resort & Club. That’s equivalent to several taxi cab rides to and from work for me.
An amount of $2,431 had been spent to go to an American Psychiatric Association meeting in New Orleans in May of 2001. Again equivalent to a 42 hour nursing ICU premium shift 2 week pay in NYC or the cost of two usable downloadable glucometers that could be used for patients and insulin titration that was required every 2 hours in the ICU setting.

Another $2,750 had been spent to attend a 2002 meeting of teaching hospitals in New Orleans, staying at the Royal Sonesta for $199 per night. Is the Royal Sonesta still functioning after Hurricane Katrina? What about the nursing shortage down South since Katrina’s aftermath? Wouldn’t a hemodialysis machine go a long way there if repaired with that amount of money and save a few lives down South? $ 199 dollars could provide at least a weeks’ amount of take out meals when none of us were able to sit, rest and eat during a 12 ICU hour shift.

As I finished reading the article this morning – I questioned – is American healthcare following the footsteps of the late corporate giant Enron? Was it being cramped and chewed upon slowly by CEOs that seemed to be following the tactics of deceased corporate American scandalous giants? Put a few nurses in a room and see where that money – total - $ 6,309- would be disseminated – towards patient care and workable equipment. It really was wasteful, pitiful financial spending even if declared accountable by the facility’s public relations department. It was becoming downright embarrassing as these news stories only affected the public’s outlook on us, as nurses , and the care given within these medical centers. What are we to do ??

But I could think of a few ways one could spend all that money on Dystonia awareness- public announcements, advertizements, magnets ( www.care4dystonia.org/magnets.htm ), auctions, new updated brochures, etc. Add in a few appointment costs for those patients with dystonia who couldn’t afford treatment ??? How about that ??? Anybody listening ?? I think not….sigghhhh…

The last two weeks have been indescribable for me. I’ve been to the moon and back! In my last blog I explained what DBS programming was like for me. And for a week afterward I did well. Hoorah — I felt normal again! I was immensely pleased. But then on a Wednesday night I went in to the CTICU to work a regular 12-hour shift, which eventually turned into a 14-hour shift. Short staffing, in relation to the high acuity, is a constant battle for the CTICU. Computerized charting seems to have become an eternal task. That night we opened several chests due to bleeding. I had been assigned a young 40-year-old woman who had undergone a double lung transplant and who was beginning to show signs of early sepsis. Her clam-shell shaped incision also looked like it was going to dehisce. She required complete care the entire shift. After my 45-minute bus commute home, I collapsed on my bed in a daze from both mental exhaustion and physical fatigue. My headaches also had reoccurred by that morning. What was I left to do??
After contacting my doctor, it became clear that there was some relationship between my stints in the ICU and these headaches. Maybe there was some sort of weird interaction between the magnetic fields of the equipment and the DBS system creating more spread of electricity or some strange magnetic field in the brain, which causes these headaches even without any obvious failure or change in the system? This is what Dr. Mike theorized. After a second shift in the CTICU I knew that I was faced with several unexpected options — startling, unforeseen choices.

I outlined my options:

1) Quitting the ICU job completely. Despite being in half a brain fog Friday night, I went in to work anyway, hoping that my symptoms were just temporary. Instead I ended up sleeping at the desk for 2 hours or so, which I’ve never done before as I’m always on the move, always finding things to do or read etc. I also unexpectedly finally found out that the CTICU has these “fire detector-like boxes” mounted in the ceilings. They make the entire electrical and computerized system in all the ICUs WIRELESS, thus I surmised that this may be the source for extra electromagnetic fields. Not a soul at the facility had told me that these existed as they were built when the facility was revamping all their ICUs 1 year or so ago. These boxes did not exist in the old ICUs before Jan 2006 when headaches were not a problem for me. So I’m feeling angry and pissed off at not knowing about these possible additional electromagnetic field sources and now knowing that potentially preventive measures could have been taken over the last year.

2) Turning my DBS system off completely is my second option, but this always resulted in my dystonia symptoms becoming 10 times worse than without the DBS device at all.

3) Reprogramming me again. But this process was getting tiresome every 6 to 8 weeks.

4) Removing the DBS system completely. I am thinking more and more about this option. I was identified as a “DBS failure” last December 2005, and these words haunt me everyday as I’m now beginning to realistically believe them. The person who said them should have never done so as it’s affected my faith/will in myself in adapting with this rollercoaster ride. I no longer saw myself as an optimal DBS patient. (Siggghhhh….)

5) Letting settings stay unchanged for an extended time period.
As time has gone on, I am concluding that adapting to living with dystonia, despite pain, abnormal postures, and the need to use sensory tricks, medications, and MyoBloc is perhaps easier than what is required for this ever changing DBS ride. Now the treatment is going to take me from a job I love - ICU nursing although my NP role still exists. This frightens me and I’m feeling panicky, worried, anxious, and upset. This wasn’t what was supposed to happen with DBS. So far I can count the number of months since implantation (Dec 2004) when the symptoms outweighed the benefits that I have encountered – 8 months out of 20 were filled with normalcy, routines, ordinariness, and typical, habitual activities. However, I can proudly report that I have met 3 out 4 of my “life with DBS” goals anyway - riding a moped in Rome, walking in stilettos in Milan, and riding a bike in Aruba. The only goal that remains is visiting Israel! Yes, these are my options as I see them. Which one I shall choose remains to be seen. Help!!!

I was just watching Entertainment Tonight and a story about Nicole Kidman being pregnant was broadcast. Now I wish I looked like her…She has the grace of Princess Grace of Monaco, the style of Audrey Hepburn, the class of Katherine Hepburn and financial standing to fill a pot of gold for a leprechaun !!! This past week has not been easy. All went well until last Wednesday when I decided to risk working a 13 hour shift in the CTICU. Bad move on my part. Ended up with headaches by the morning again. What was a girl to do ??? I had been reset DBS wise and all had seemed well. I almost felt relatively normal although I don’t even know what it is to be normal. Dystonia has been going on for the past 20 years. And it wasn’t ceasing. Dystonia is relentless and unforgivable, chipping away at you each day. Piece by piece. Taking what it wanted it anted from its’ victim. What was a girl to do ??? I wanted to feel fluid -like, grace-like, but I quess that’s just all in my dreams. I’ll keep dreaming….though…a bit longer…

Cold, dark, windy and rainy here in the Big Apple today. I just came home from working a 15 hour shift in the Open Heart Unit. And I’m tired. The last week has gone well from a DBS perspective- at least I thought so until today. My headaches have returned. I want the entire system to be turned off. And want to return to MyoBloc injections. I held off last week as it seemed that my settings were holding. So I thought…I may not be able to return to my life as an ICU nurse now. I never thought I would have to make such a choice ever in my life. ICU Nursing is my livelihood. I love the noise, intensity, problem-solving, equipment etc. of critical care nursing. Now- a dreadful choice awaits me as the rain begins to pour outside. Time to make that call to my old neurologist for MyoBloc- my magic potion that worked within an hour after being injected with the toxin. Relief will come as will choices… May be the French pop singer, Natasha St. Pier, will help relax me before another shift starts ?..De l’amour le mieux…??? I don’t want to think about choices…but am ready for some Myobloc - same dose as before…10,000 units…

I finally got my head MRI done this week. Phew…It happened the day the plane flew into my neurosurgeon’s old apartment building. The Building is right across from the Hemsley Towers, not far from Cornell Hospital itself. I arrived at the office around noontime, drinking a thick Black Current smoothie, gave my NP a verbal update about things ( I had driven a Pontiac Grand Am rental car the past weekend over a 10 inch curve, not quite realizing what I was doing until the car felt a bit tipsy and was slanting to one side ! Otherwise I don’t necessarily drive at all. Definitely not in Manhattan ! Dr. Mike walked in and decided to do schedule the MRI immediately - I must not have looked too good. I had been having thoracic back pain for a 3 good weeks, barely working , even omitting my usual weekly CTICU hours. My neck felt like it was sizzling. Give me a knife and I’ll denervate the entire left neck muscles myself ! God-forbid, but sleeping on one side for 3 weeks had been torturous. In Dr. Mike’s office , I couldn’t even sit up on the exam table. And within an hour, my entire DBS system was turned off. MRIs can drain the pacemaker batteries, leading to strokes and seizures on the MRI table. Frightening- I had never been told this before. Uhmfff. Being suddenly turned off left my mind cognitively fuzzy, I couldn’t comprehend the directions to the MRI suite. So I asked about 4 people who all wore the same NYP Employee badge that I did for directions. The MRI went smoothly as I’m not claustrophobic. The entire event was actually soothing, comforting being in a dark, enclosed safe area with electrons floating around you. Once completed, I headed back to Dr. Mike’s office on the 6th floor going to sleep for awhile as there was complete chaos on the street below. Sirens, machine guns, people gawking, camera crews etc. By 4:30 pm reprogramming began. Slow and tedious process. We laughed and joked about certain things. The rain had started falling heavily. All was grey outside with a multitude of sirens screeching loudly. We agreed on maintaining low settings. And the wait and watching period began for the next 30 minutes. I stepped out into the rain like Gene Kelly. Once back in my apartment, I took off my soaked clothes ( must have looked like a wet rat …) , climbed into my pajamas and waited for DBS side effects to develop. I missed Grey’s Anatomy, but was able to throw my clothes into a washer and dryer in the meantime. Having been turned off for about 4 hours cleared my mind, diminishing those headaches finally. I could think, at least, efficiently now. Phew…Would these settings last this time ???

OK, I’m still waiting to find out when my MRI is. This is totally ridiculous.Yesterday I spent 40 minutes on the phone , mind you- in between seeing my patients , at my cardiology office hacking it out with my health insurance company about an authorization number for the Head MRI. The woman on the phone did not even know what an MRI was ! I didn’t even bother explaining DBS to her ! A lost cause. It was only after warning her that I would report her to the NYS Health Commissioner that I finally was given an authorization number. I passed the information along to my neurosurgeon’s secretary for scheduling, but I’m still waiting….Is this optimal health care or not ? Each day my dystonia seems to be returning with a vengeance- the head and neck are now twisting to the left, the upper body the other way and the butt and legs go whichever way they want to. I have no control ! Klonopin isn’t holding me. Time to give my old neurologist a call and ask for a few MyoBloc injections, my magic potion that will help with my neck symptoms at least. I still felt irritated.

And I still had to go buy my sister a birthday present of sorts.

What kind of health care system is this in the U.S ? I’ve been waiting for about a week for this MRI to be scheduled. At the rate we are going , Glinda will be occupying my apartment.

And Winter might as well be around the corner ! Irritated to say the least….and waiting….

It has been a really long weekend- too long. My dystonia has returned and I hate it. I can’t walk straight anymore, eating upright is difficult. I bought out the entire Gatorade supply at Lee’s market around the corner on Friday. They must have thought I was crazy. 4 trips required from my apartment to get my supply. At least I would be able to ward off any signs of dehydration. And it has been darn cold today. Fall has truly arrived, so has bloody dystonia. My head is turning to the left by 90 degrees. I look like an ” weirdo ” again, people are staring as I walk the streets. This is frustrating. I was last programmed August 10th or so, about 7-8 weeks ago. I feel like screaming and writing a letter to Medtronic about device improvements. Of course, they won’t return a reply. Bottom line for them is profit. I’ve slept most of the weekend. Tomorrow begins a new week - hopefully with a scheduled MRI and appointment with my neurosurgeon ( who now happens to be jealous of my new dog ! ). ( chuckle ) I’m jealous of people whose body’s move with fluidity- they begin with a beginning, middle and end. I don’t know where I am this weekend. Is there ever going to be cure for dystonia ??? Time for MyoBloc reevaluation.

Well, looks like I’m getting a new addition to my household- a wonderful 1- to 2 year mixed lab with part cattle breed genes. Her name is Glinda. My sister has a 50 pound brown dog part lab - part Pitt Bull mix, but as lovable as can be. Since I’m moving back Upstate in March, away from all this concrete, back into greenery, I’ve desperately wanted to get a dog. Nothing overwhelming that will drag me down the street on a leash, but one that is quiet and well-behaved. Now, I know already my mother is going to be sneaking in extra dog treats to both dogs now. How do I handle that ??? I was drawn to Glinda’s eyes immediately- soulful, compassionate with a sense of loyalty and intelligence. She was a one person dog which is what I needed exactly. Tomorrow is going to be a long day- plenty of physical exams in Dr. Patrick’s office. But I’d be dreaming about Glinda and how to get her here without my landlord knowing - just a temporary thing, you know… You know, we all do it here in NYC.Everythings temporary, you know ! I hope that I can get her. Now, certainly mad about a dog !!
Check out www.bestfriends.org !