“You Look OK… “

Well, that’s great !  I’m glad I don’t look like I feel...  I’d have to worry about the dogs mistaking me for a fire  hydrant or other excretory depository.

I’m not sure what THIS looks like: 
– autonomic dysfunction: inconsistent regulation of blood pressure, heart rate, temperature
– diabetes w/complications on insulin
– degenerative joint disease (with one shoulder now having symptoms, both shoulders, both hips, and both knees involved- and no “elective” replacement surgeries because of my history of pulmonary emboli).
– degenerative disc disease, from cervical spine to sacral spine (or neck to butt)
– severe fibromyalgia
– carpal tunnel
– TMJ
– peripheral neuropathy (progressive sensory, diabetic amyotrophy)
– nocturnal epilepsy
– neurocardiogenic syncope/POTS (related to autonomic dysfunction/dysautonomia)
– GERD (fairly severe)
– epigastric hernia (vs. ventral- still getting worked up)
– sleep apnea
– diabetic nerve pain (feels like thighs are on fire, or hot needles in feet)
– defeated patient with little hope of getting anything addressed without some sort of support.

And I’m not sure how ‘visible’ my history is, either:
–  APL (acute promyelocytic leukemia)
– acute, subacute, and chronic pulmonary emboli in all three lobes of my right lung and           right pulmonary artery
–  multiple concussions
–  mild stroke
–  TIAs
–  falls
–  hydration issues
–  kidney injury (related to dehydration)
–  pyelonephritis
–  sepsis (r/t pyelonephritis, cancer, and post knee replacement UTI)
–  and I’m sure things I’m forgetting, including several surgeries.

Now add a doctor for nearly each of those, who don’t talk to each other.   I’m supposed to manage it all, AND manage the communication (or lack thereof) between doctors.   BTDT, and it ain’t working !   My job is to be a compliant patient.  But how can I be compliant when decisions are being made without any input from myself, and the doctors not communicating with each other before ragging on me?  I get to be a participant in my own life !!   If not, I can’t work with that physician/NP/PA/XYZ.   I can’t trust anybody who won’t hear MY concerns.   The first part of assessment is focusing on the issue at hand- and that includes patient concerns.  LISTEN- it’s cheap and used to be fairly standard.

Otherwise, if I’m not a part of my own healthcare, why should I go see those who have ME figured out without my participation?

 

 

 

Hold On To Hope, Or Face Possibilities

I’m waiting, along with many others, for news about a dear woman who went into cardiac arrest last week, and is in a coma as a result.  The day they warmed her back up from the induced hypothermia (used to minimize oxygen demands on the brain while healing from CPR), her reflexes were present. The next day, she was following commands to squeeze her husband’s hand, and raise her elbow off of the bed.  That sounded good.  Daily reports were coming in, and while nothing else major was happening, there was a hopeful tone to the reports. Then Sunday, there was no word on her condition. Monday, there was information that she was struggling, and last night, the neurologist had done a test and met with the family early this morning.  When the time is right, information will be shared about what that was about.  As an RN, I can’t think of a lot of ‘good’ since there had been little  positive news for a few days.  I remember working on a neuro floor, and when the docs met with the families, there were major, and permanent decisions to be made. Occasionally, there would be some other treatment option, but not usually.

As I’ve been mulling all of this over for the past week, I’ve had so many emotions. Anybody who was a camper or on staff at Timber-lee Christian Center in East Troy, WI would have been directly or indirectly impacted by this woman. That’s tens of thousands of kids and staff members over the decades she has worked there.  Her talent for developing fun programs to get through entire summers, each one different, is indescribable.  She also has a great sense of humor, and is one of those people who just makes people feel good. Her piano playing ability is remarkable, and even more so, since her left arm is weak- but nobody would ever know that from what she can get a piano to do.  She has been an example of what Christian woman can aspire to. There isn’t an ounce of phoniness in her. She’s the real deal.

As an 8 year old, I first met her. She was in charge of the programming for that first year as a camper. Her talents brought stories from the Bible, and how to live as a Christian to life and made them applicable. I remembered her every year I was there as a camper (7 summers), and then when I was on summer staff, she was someone familiar when I was meeting MANY new people.  I wasn’t always the easiest to have around, but she was always kind and compassionate.

This last July, I got to sit down with her and her husband at a reunion at the camp. I hadn’t been back there for decades, and while it had always been my ‘safe haven’, I hadn’t seen anybody from there since the mid-80s. I’m so glad I had the chance to talk with her, and also to have reconnected on FaceBook several months earlier. She is someone who exudes life.  And now she’s in a coma, and is struggling.  That’s not her.  Oh, she’s had struggles- but she made them work for good.

And yet, I believe in a God who is omniscient.  He knows everything- and His will is perfect for His plan.  Not my plan, or her plan- but His plan.  I don’t know what that is, or why this all has happened.  Physiologically, I understand why her heart stopped and she needed CPR.  That isn’t hard to comprehend. But what is hard to understand is how her being in a coma, and so critically ill, is helpful to God’s plan.  I have to have faith.  I know that one day, I’ll be able to ask God directly, and know His reasoning. I do believe that.  And I have to have faith in the meantime. Sometimes that faith uses a lot of kleenex.  Sometimes that faith can’t see through the tears.  But it’s still faith.  It doesn’t waver, but it also rests inside a very real person with very real feelings.

So, now the battle is this (at least for me- and I don’t believe I’m alone in this)… do I hold out for hope and God performing a miracle? Or do I get myself ready to face the real possibility that she will end her work here on earth, and join those who have gone before her in Heaven?  I have to rely on my nursing knowledge to look at where she is- and ‘she’ isn’t lying in a bed on life support. That’s the logical angle.  That isn’t how she lives. She is a very vibrant and amazing woman. I believe God can use anybody in any state to speak to others, and yet being in a bed isn’t how she has lived.  When I saw her in July of this year- just 2 1/2 months ago- she was racing around the camp in a golf cart, tending to the visitors on the grounds. Smiling. Serving, encouraging, and active.

I can’t imagine what her husband is going through today after the meeting with the doctor.  He is also a ‘lifer’ on staff at Timber-lee.  He forges iron into custom ironworks and horseshoes. Yes, there are still blacksmiths!  Now, he’s faced with an incomprehensible set of circumstances and potential outcomes to sort through. But he seeks God’s will as well.  He seeks the glory of God, regardless of the loss or changes he may also face.

In the end, those of us who believe the doctrines and Biblical principles that are an integral part of Timber-lee know that we will all see each other again, no matter what happens here in this earthly life. We have that promise and confidence in what Jesus did on the cross. That makes no sense to someone who choses not to believe in Christianity as described in the Bible- and God gives everyone the free will to decide that. He doesn’t force eternity- or Himself- down anybody’s throat. For me, it’s a comfort -though I still feel the loss of people I care about in a very human way; those concepts are not mutually exclusive.  Christianity really isn’t about either/or… it’s about more and more.  I’ll get more time with my friend. I’ll get eternity with her. That doesn’t mean that I wouldn’t miss her until then.

I don’t know what will happen. I don’t know the private matters being discussed. I do know that the woman I know is vibrant, and unstoppable. Yet, now she’s suspended in time, in a very passive state. That’s not her.  I will still pray for healing. I will still pray for God’s will to be done (which might mean He takes her). But no matter what, I will never forget her impact decades ago, or even now as she triggers deeper thought about God, and why things happen the way they do… and in the end, she has once again strengthened my faith.

And those of us ‘watching’ can celebrate her life, no matter what.

Long Term Disability

As a registered nurse, I saw people on a routine basis who had life-altering events happen to them. They were my job.  Many who were of working age were permanently and/or catastrophically injured.  Others had injuries that eliminated them from eligibility to pursue their desired careers.  I saw bad stuff.  Because of that, I always insured myself to the max when I began a new job and was in the process of selecting benefits.   I never imagined that my life would become what it has, but the decision to get long term disability insurance has been extremely worth the premiums I paid when I was working. If I hadn’t purchased LTD, I’d be in a way different situation than I’m in now.  My monthly income is approximately 2/3 of what it was when I was working.  Without LTD, it would be less than half. 

I wasn’t eligible for short term disability, or I would have bought that also. I had to cash in a 403B to make it the 3 months until LTD kicked in. Even with that, I had some help with a couple of months’ rent.  Diabetes was the problem with getting STD, which had nothing to do with why I ended up on disability.  Now, with the healthcare reforms, I’m not sure if disability insurance falls under the mandatory acceptance of pre-existing illnesses, or if that is just for medical insurance.  I always tell people to get whatever insurance they can; nobody knows what can happen.

When I was first having problems with dysautonomia, I had some major issues with staying employed. I managed to do so, but it wasn’t easy.  Many times, I would either lose consciousness, or my blood pressure and heart rate would become so abnormal (either too high or too low) that I’d become unable to function properly.  The job I was at when the dysautonomia first surfaced was at a drug and alcohol rehab facility.  I was the only RN on campus when I worked, so being conscious was required… 😮  I often had gait problems (couldn’t walk straight), and my speech and reaction times were altered.  I looked like I belonged with the treatment side of things- not the help.

My boss at the time wasn’t a great communicator, but was very fond of ‘contracts’ as if the diagnosis was somehow amenable to behavior modification (medical nursing wasn’t his forte). That irked me to no end, but I really liked the job and my co-workers.  I fought like crazy to stay employed, and fortunately had a wonderful neurologist in that small town. She was familiar with dysautonomia (most people haven’t heard of it, including doctors in ERs or general practice), and knew which medications to try after the electrophysiologist confirmed that my tilt table test was positive (my blood pressure dropped to 44/16).  My neurologist started me on Neurontin after atenolol, Norpace CR, Depakote, and propranolol alone hadn’t helped, OR had made things worse.  It was a nightmare of trying new meds, only to have a week or two when things seemed different (in a good way), and then headed south.

Neurontin bought me eight more years of being employable. That was huge. I did end up leaving that  drug and alcohol rehab facility, but it wasn’t because of my medical issues. There were major safety issues with the detox unit at the time, and I wasn’t willing to keep waiting for disaster to happen.  It was too stressful, and that didn’t help my blood pressure or heart rate.  I was lucky to be an RN in a town that often hired RNs from out of the country to fill in the gaps; I got another job in about 45 minutes from application to the phone call offering me the position at a nice nursing home.

When I worked at that nursing home in the small town in the Texas Hill Country, I found that the administrator and director of nurses were willing to work with me, and saw what I had to offer- not just my ‘bad days’.  I was loaned a cushioned mattress overlay to keep in my office, so when I felt bad I could safely lie down and sleep it off (off the clock), and then get up and resume my work when I was doing better. (I did MDS assessments for Medicare patients- desk jockey).  By the time I worked in the general hospital in the same town (where I’d worked before, and knew who I was working with), the Neurontin had really helped to stablize my condition well enough to work 3 12-hour shifts on weekend nights on the general surgical floor.  It went well; I was encouraged.

About six years into that eight years of employability, I moved back to the Midwest where I’d grown up.  I started on a pediatric floor, but it wasn’t long after starting that job when the symptoms became a major problem.  The first time happened when I was  in my car on my way to a shift, and my heart rate was in the 140s, which meant that I had little time before it nosedived, and I’d pass out. I knew that I’d have to pull over if my vision started to ‘tunnel’ and my hearing began to dim. I talked to myself, “you’re going to be ok”, “you’re almost there”, etc.  I was almost to the hospital, and managed to make it to the floor where I worked, and get help from my co-workers. They could tell immediately that something wasn’t right.  I was still conscious when they took me to the ER, but I don’t remember much of what happened.

I turn blue during these episodes, and then become cold and clammy, but my face becomes extremely red (almost a bluish-red) and very hot.  At some point, I fall into a deep sleep, and become white; I’ve been told I ‘look dead’ several times.  I was back in contact with neurologists and cardiologists, and one month long monitor showed that I was having  PVCs (that I could feel), which required medication adjustment. It seemed to help, but I still wasn’t doing well. Initially the cardiologist poo-poo’d my reports that I felt something. Then she saw the monitor report.

I was working with sick babies and children. Some of these babies were four pound preemies that were moved from the NICU because of a boom down there (had three sets of triplets born one week, so they were going nuts in the NICU).  These kids needed constant monitoring, and I was feeling less stable even picking them up.  It didn’t help that the temperature in the halls was kept over 76 degrees, and one nurse refused to agree to me having one area (out of the way as needed) where I could lower the thermostat; that was a huge problem as heat intensifies the symptoms. I could have raised a stink with the Americans With Disabilities Act, but even at home in a controlled environment I wasn’t well.  There were many nights when I didn’t make it through the shift, and was either taken to the ER in a wheelchair, or sent to lie down until I could drive home.  I needed to leave.

I went to work at another nice nursing home; I figured that pushing a med cart, and having little direct care (and risk of dropping someone) was a better option. I was soon put into another desk job (doing MDSs) because I’d done them before.   I did well enough to pass muster for a while, but again began having the episodes where I’d change colors, and eventually pass out, or fall into a deep sleep for hours.  Some of what was going on was epilepsy (something I’d had for decades by then, and has been diagnosed as temporal lobe epilepsy).  There were times when the symptoms seemed to overlap.  All I knew was that I was deteriorating.  Towards the ‘end’, I was being sent out by ambulance after someone heard me hit the floor, saw me pass out, or heard the ‘thud’ in my office. I don’t remember any of the actual ambulance ‘rides’. I was sent out 10-12 times over a 2 month period. I usually came around sometime after getting to the ER.  My boss told me it was time to tell my doctor about the need for disability (and she helped with whatever information my doctor needed, and I’d consented for the information to be exchanged).  Human resources got me the forms for LTD- which wouldn’t go into effect for 90 days.

I was horrified not to be working.   Nurses don’t just stop being nurses. In my opinion, it’s a lifetime frame of mind.  I still look at people’s veins on their hands when I’m in the line at the grocery store, and size up the ease of IV insertion. I still AM a registered nurse; I do my CEUs and renew my license every 2 years. But I’ll never work again.  So much more has happened since going on disability that has eliminated my chances to work again. I tried to go back after about 7 months, but I couldn’t do it.   That saddens me every day.  I’d figured I’d be clunking up and down the halls of some healthcare facility until I was at least 62 years old. I didn’t make it to my 40th birthday.   But I’m very thankful that I’ve been able to remain in my apartment in a decent part of town. Without LTD that wouldn’t be possible.  I have a lot of premiums to pay because I’m now on Medicare (about $100 for ‘Part B’, $225 for the supplement to pay what Medicare doesn’t, and $70 for the ‘Part D’ prescription drug plan- and any co-pays).   My LTD check roughly covers rent and my premiums.  That is a major part of my expenses.

The point to all of this is that nobody knows what will happen to them.  Whether it be illness, injury, or accidents with life-altering consequences, life is unpredictable, and we’re not guaranteed to get through it unscathed.  I never saw this in my future when I started out as an idealistic 21 year old RN in 1985. But this is what it turned out to be.  I’d encourage anyone who has the chance to get STD/LTD insurance (preferably both, but LTD for sure) to get it.  Skip a night out once a month.  That may be the difference between living in a housing project or staying in a familiar place while dealing with a ‘new normal’.   Disability is structured as such that you won’t qualify for many  additional assistance programs. The ‘extra’ income from an LTD policy makes an indescribable difference.  Things are still tight- but I get by.  I’d much rather be working, but I’m thankful that I’m not in worse shape.