Triggered ER Memories…

I got a canned e-mail from my dad’s medical provider, asking for one of those Press-Ganey surveys to be filled out.   I don’t do those.   They’re a colossal waste of time, and the results are used ‘against’ nurses in ways that are demeaning of the job. They’re a popularity contest for healthcare. Nurses aren’t concierge staff… they’re there primarily to give medical care.  Not have to be subjected to some very fortunate person complaining about not getting coffee ‘sooner’, totally oblivious to the reason it was ‘late’ was that the nurse was doing CPR on someone two doors down.   Anyway, it got me all stirred up, and I wrote the following before seeing that it was a ‘no-reply’ e-mail.  Sneaky them :p

–I’m xxxxx’s DPOAH, and deal with all of his e-mail (I’m his daughter- and a disabled RN). He is pleased with his care w/Dr. Kxxx- no issues whatsoever. I go to some appointments with dad, and also have Dr. Kxxx as an oncologist- great folks in the office area, lab draw folks, and Dr. Kxxx himself. Couldn’t get much better.

As an RN (I still keep my license), I have a general loathing for Press-Ganey, since it doesn’t consider all factors in someone’s care (especially inpatient- like if someone complains about their coffee request being slow to be delivered, while the nurse is tending to someone who is either trying to die, or has coded somewhere down the hall). Totally bogus complaint in the GRAND SCHEME of things… our society is too much about “me”, and not about the entire picture.

IF there are issues, I have no problem contacting the hospital directly. It’s really none of Press-Ganey’s business in my opinion. If you can tell me why their butting in is so important, I’m teachable !

I do have some compliments regarding a couple of tests I had a week or two ago. I had a abdominal and pelvic CT w/contrast and a CXR. The nurse and techs in both departments were outstanding. Lisa and Shannon were in the CT department- both very personable, friendly, and gave great instructions. They had the perfect balance between respecting my knowledge as an RN since 1985, as well as informing me of what was going on (and what needed to happen since I’m on metformin- and getting a follow-up creatinine done 2 days later). Lynette was in x-ray, and came SO quickly to get me for the CXR- very professional as well, and also kind. They made the inconvenience of having to drag my ratty body away from home much less unpleasant. My overall experiences in the outpatient/testing departments have always been good- every last person has been pleasant and professional. I didn’t feel like they were trying to suck up, so that Press-Ganey would be happy… they were genuinely doing a nice job.

I have had my share of nightmares in the ER there…

I haven’t been to that ER in a several years- so this might be outdated (wanna be fair). My experiences there in the early to mid-2000s were horrific. I was considered a ‘frequent flyer’, though many times, someone else called 911 because I’d lost consciousness (I have dysautonomia and documented epilepsy among other things). I could give you a laundry list of abuses and negligence in that place. Maybe it’s better now- I hope so. When I got there because I had actually been awake enough to call for help, I was following my MD’s instructions for when to get help (my blood pressure would drop into the 50s systolically- and it wasn’t safe to NOT get help when just lying down wouldn’t do anything). I still was verbally demeaned- for following my doctor’s instructions.  It’s so important for those in the ER to know that just because THEY aren’t familiar with a diagnosis doesn’t mean that it’s automatically some psych disorder, and they don’t know everything about the person, just because they have some vague medical info on them.  I never asked for pain meds, never had a squadron of unruly family around (never had ANYONE around), never even asked for help to the bathroom- which was partly because the call-light was nowhere to be seen, etc. I was told I was a “wasted bed”, and that “seizure patients never follow up”; (I actually had monthly appointments with my doctor at that time because things were so unstable). It got so bad that I learned to put in my own small gauge NG tube and put in 1/2 strength Gatorade by gravity, to increase my fluids- and take my chances at home. My doc  wasn’t thrilled with that (but I know how to manage an NG safely)- yet she knew what had gone on in the ER from what another doc had told her (he was one of the few nice docs). It’s amazing what medical equipment was available on eBay back then.

On April 1, 2007, I was brought in (BP dropped again), and by the time I got there, with the jostling around, it was better, but I still didn’t feel right… I had had a few weeks of weird symptoms that weren’t quite my ‘normal’ weird. The doc on that night actually refused to examine me. He wouldn’t repeat the BP (meant pushing a button- and he didn’t even have to do that; a nurse was near the monitor). I continued to have odd symptoms after being sent home, and eventually had substernal chest pain radiating into my neck. On April 11, I called my doc’s office and was told to go to a different hospital,  and tell them about the chest pain; THEY would take care of me. Tests showed that  I had multiple chronic, sub-acute, and acute PEs in all three lobes of my right lung and R PA (pulmonary artery). I spent 17 days in the hospital getting regulated on warfarin. The chest pain was from my lung pushing into the apex of my heart. That ER doc’s personal ASSUMPTIONS  at St. Xxxx’s could have cost me my life. As it turned out, it was ‘just’ another blow to my feelings as a sub-human. I didn’t have the typical PE symptoms until the 11th (actually the night before- but I wanted to talk to my doc about what to do since going to St. Xxxx’s ER was just a set-up to be blown off and humiliated).  And the doc didn’t bother to see WHY I’d been there “too much” (his words) in the prior couple of weeks.

Being considered a psych case, I was sent home unable to walk one time- crawled into the cab, then crawled to my front door. Another time, I was put in a wheelchair van, and sent home- if I needed a wheelchair to go home, how was I supposed to manage at home. Alone. ?  One doc began to intubate me without checking to see if I was even awake (I was- I’d just regained consciousness, and saw him walk in the room- alone, no help for suctioning, no meds for a genuine intubation, no indication of what he was going to do)…. he knicked a tonsil going in, cutting it, and setting off my gag reflex- so then I was vomiting blood. A nurse came in, and he eventually pulled the laryngoscope out. He asked me if I’d OD’d (a common assumption- though no drug tests were ever positive), and I said no. He told me that’s all I had to say… he never asked me anything!  I didn’t know what he was going to do (he was behind my head- my eyes back there don’t work well). Then left the room. I was so embarrassed to have vomited- but I guess they call it a gag reflex for a reason.  That nurse was very kind as she helped me get cleaned up… she must have been new.

A nurse put a Foley in one time (I’d lost consciousness at a neighbor’s home, and she’d called 911… I’d had no presyncopal feeling -which I generally did- just awake one minute, and about 3 hours later waking up in the ER). The nurse blew up the catheter balloon up ON my internal sphincter. I said it hurt, and was trying to tell her it hurt WAY more than it should- and she turned around and walked out of the room. She just left.  Absolutely no acknowledgment of what I was saying, yet she was looking at me; she heard me, and saw me trying to move the catheter.  I managed to push it in far enough to actually be in my bladder.  It took 4 liters of fluid to get my systolic BP to hit 80…. I was sent to ICU, and just managed to avoid dopamine (which could have been a disaster for someone with dysautonomia).  I was admitted as an OD– yet NO drug screens  EVER showed any type of drugs.  Really?  Even with evidence, I was still some loathed OD patient?  My doc came to see me the next morning, and told me she’d see if she could enter a note to negate the OD diagnosis.

These are a few things that I will probably never forget… and the ER at St. Xxxx’s still scares me. I sent a few letters to the customer service person (whatever they’re called) at the time, and got the canned letter of ‘we strive for excellence in patient care’, blah, blah, blah. Nothing ever changed, because I was seen as a nut job. NO psych history, no drug abuse, no ODs, nothing psych related at all. Just judgmental nurses and docs who saw me too often for their liking. I (me, myself- no doctor) eventually figured out a medication interaction that was contributing to some of the BP issues (the dysautonomia won’t ever go away- but it helps to not have interactions messing with it). I also started going to another ER if I had stuff going on that required an ER (after the PEs, there were some other incidents of chest discomfort/SOB, as well as hematuria one time, requiring some IM vitamin K, and an overnight stay for a couple of tests and IV antibiotics for a UTI). I’m lucky I went there when I was having symptoms that were eventually diagnosed as AML- subtype M3 (APL). I was there for 6 weeks in isolation, induction chemo, and started 19 months of daily chemo of some type (except for ‘scheduled breaks’ and when I had shingles on my butt). I don’t have confidence that St. Xxxx ER docs would have bothered to check things out. And, I could have ended up like Jeannie Hayes- the WREX anchor who died 2 days after officially being diagnosed, after a brain bleed.

As an RN, I know that some patients are annoying, but that doesn’t mean that there isn’t some genuine medical issue going on as well. I did my best to not bother the ER staff. I did anything they asked of me while I was there. Most of the time, I didn’t make the call to be sent there, and when I did, it was because of my personal doc’s parameters. Nobody deserves to be treated like they’re a crazy HUMAN being, and waste of time. I think some of it is the age of many of the newer nurses, and the overall mentality that ‘work’ is a destination, not a verb. I don’t remember a single nasty tech, lab person, etc… it was always the docs and nurses…. very sad.  And even if I HAD been someone with some psychiatric issues, does that mean that subhuman care is justified?   People ask why those who do have mental health issues don’t get help… I can guess part of the reason.  The humiliation isn’t worth it. 

Anyway, I’m sure this is more than you wanted to hear. I don’t do Press-Ganey, since they don’t address issues I’ve had. They run a popularity contest, and I’m not interested in those.

Have an enjoyable week, and maybe remind the ER staff that they know nothing of the patients’ entire lives… they see a snapshot of a bad time. And regardless, they still don’t deserve to be belittled, or even physically injured because of their prejudice and assumptions.—-  (end of ‘note’)

ER staff gets very little information about a patient’s entire life- or even enough to make a true assessment (or judgement) about the person.  They see symptoms and test results, and whether or not they like the ‘diagnosis’ of patient who is before them.  It’s unprofessional and abusive to not treat someone with compassion.  If it was their family member being talked to in the same manner, they’d be outraged- yet they feel it’s OK to do it to strangers.   I realize that there are some amazing, compassionate emergency rooms out there, with incredibly kind and patient staff nurses and doctors.  I commend them.  They have to deal with whatever walks in the door- and that has to be difficult.

IF it becomes so easy to judge an entire person on a diagnosis (and be less than humane), it’s time to find a new job, or another area of medicine to work in… maybe the morgue.   😉

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In Memory of Madeline Spenrath, R.N.

I just found out on Thursday, April 25, 2013 that one of my favorite nursing supervisors had died.  I’d talked to her several times over the last few years when we were both going through various cancer diagnoses, but hadn’t talked to her in a while.  She had been through breast cancer, and thought she was doing well when she discovered she had bone cancer in her thigh and had to have an amputation at the hip (around 2010).  She went through that with a great deal of grace and dignity.  I’m told that she had recurrence of cancer in her lung and spine.  I can’t imagine what that was like for her. Getting used to her leg prosthesis and wheel chair were hard enough; the leg prosthesis drove her nuts.  She was incredibly independent, and needing help didn’t make her smile.  I can just hear her saying “when I go, just toss me out into the pasture with the horses”.  Down to earth, no frills, and knew SO much about nursing.  I will always have a great deal of respect for her.

Madeline  was a no- nonsense supervisor, but also had a heart of gold. I first met her in in  1991, and while there are many people who knew her much better than I did, she left a definite impact on me, for the better.  I worked at Sid Peterson Memorial Hospital in Kerrville, TX on and off for over 10 years.  Madeline had been there much, much longer, and was a ‘staple’ supervisor on the night shift.   She had her own way of getting report on every patient in the hospital for the next shift’s supervisor (or ‘Number 9’, as they were called at Sid Pete, at least at that time). Some supervisors wanted report from each nurse- Madeline wanted the charge nurse to give the run-down.  SO, I talked to her a lot.  She wanted ‘just the facts’, but also had a really good sense of humor, and if a patient needed something, and she could do it, she’d give it her all.

Madeline could get IVs in just about anybody.  Generally, if someone needed an IV started or restarted, the direct care nurse or charge nurses would get them in.  If that didn’t work- or if someone’s veins were just too puny to go poking around when it didn’t make sense, the charge nurses would call Madeline (or whoever was the supervisor that night).  Madeline could get an IV in the butt vein of a grasshopper. In motion.  She was just that experienced and had all of the tricks down pat.

Madeline used to have incredible BBQs for the night shift staff. They were annual and legendary.  I got to go to one in 1991. She had them in the summer, and would have one of her horses saddled up for anybody who wanted to go for a ride around the farm in Comfort.  I still have a photo of me on one of her palomino horses, in my tennis shoes and t-shirt…. I looked SO not ‘Texas’.  But it was fun 🙂

When Coca-Cola changed their formula back in the 80s, Madeline rode her horse to the town store, and brought home as much of the original formula as she could secure to that horse!  I never heard that she ever smoked or had other vices- but don’t mess with her classic Coke !! 🙂

One night, Madeline called me about a predicament with staffing on the telemetry floor.  Uh oh.  Madeline could get me to agree to a lot of things that I’d normally freak out about (like charging two floors on nights when there were simply no other nurses to cover one of the floors- they were back to back units – 4A and 4B- so I just ran between the two that night; one was my usual floor, and I knew the other staff well enough).  The regular charge nurse on the telly floor had some emergent health situation happen, and they really needed a charge nurse.  I really didn’t read telemetry strips !  I knew ‘OK, looks survivable’ and ‘uh oh’. She reassured me that the monitor techs knew the rhythms and there were standing medication orders that the nurses knew about- I’d be fine. They just needed an RN body to check off orders and be physically present.  Scared the snot out of me, but I went.  Everybody survived the shift 🙂

She hated taking bodies to the morgue in the basement of the old hospital. Madeline would do anything she could for anybody in the hospital, but once she was notified of a death, she’d show up like the wind and drop off the keys to the morgue.  She wasn’t a fearful person but that morgue gave her the willies. I have to admit, it was creepy- it was a ‘one occupant’ room, with shelves along all available wall space that had the specimens from various surgeries… there were gallbladders, appendixes, lungs, and just about anything that could be removed from a body bobbing along in preservative liquid in semi-opaque plastic buckets. You could still tell they were guts.  Named, dated, and labelled.  The first time I went down there, I was very distraught.  I was still shaking the next day, and actually had to leave when I got to work (major chicken-poo reaction). Madeline was on that night, and while she wasn’t amused at me falling apart, she never made me feel ashamed of my reaction. Once I knew what I’d be seeing, I was able to go if I had to help take a body there.

When I was diagnosed with diabetes in 1995, I had just started working at SPMH again (and was diagnosed with diabetes through general pre-employment screenings)… one night I said I felt a little funny, and Madeline went bounding off to the cafeteria to get me a pimento cheese sandwich, in case my blood sugar was getting too low; I was still very early on in being treated, and could sometimes have symptoms even when numbers were decent- my body was just used to having much higher blood sugars.  Being diabetic wasn’t seen as a liability, and I had a great deal of support from Madeline and others there at SPMH.

When Madeline brought a meal for a patient admitted later in the evening or night, she’d bring back  a tray full of food fit for a football player…. her theory- never trust a skinny chef, and make sure they get enough food if they’re hungry.  Never knew when someone sick would either lose their appetite, or have the need for some energy stores.

Madeline loved her horses and cats.  She retired from nursing several years ago, and while she was dealing with a lot of health issues, she always talked about how she was doing with taking care of the horses and cats on her farm. She was deeply saddened when that palomino died… it was one of her favorite horses.  She also volunteered at the local VA hospital, and loved going out there.  She had passion about many things, and when Madeline took to something, she did it with a great deal of satisfaction- and she was good at it.

Madeline was a ‘giver’. I never heard her ask for anything for herself, even when she was going through so many life changes with her health.  When she’d call me, she’d sound upbeat- and she had so many reasons to be bummed.  She’d send funny e-mails, and periodic notes- and never complained.

When Madeline would hear of something just not sounding fair in regards to how someone was being treated after some management changes at the hospital, she felt so badly for them.  Madeline believed in people being accountable- but she also knew that sometimes people got a really raw deal… and it hurt her when they hurt.  One other supervisor comes to mind in regards to that.  We both deeply respected that other person.  Madeline didn’t always wear her emotions on her sleeve, but she was an incredibly caring person who wanted the best for those around her.   Sometimes there might be someone (usually someone who didn’t last long) who drove her a little nuts- but she was always fair if anything came up that involved her input with that person.

I’ve worked with some great people in the years I worked as an RN.  Madeline Spenrath is someone who I will never forget, and am forever grateful for things she taught me.  I became a better nurse and person for having known her.

For those who knew Madeline, and would like to leave a comment about your memories of her, please feel free to do so, and I’ll get them added to the comment section 🙂

Mandy Meltdowns

My sweet miniature schnauzer Mandy died seven weeks ago yesterday, on December 27th, 2012.  She was my sole companion for all of the years on disability, and absolute joy for the 11.75 years I had her with me.  Most of my human friends are in Texas, and I’ve been pretty much isolated since going on disability in April 2004. But Mandy was always here. We were with each other pretty much 24/7.  The bond was different than with other dogs I’ve had (though I loved them intensely, as well).  She knew my patterns and understood what I told her with an almost creepy accuracy.  My dad commented about that often.  He could tell her to do something, and she stared at him… if I said something, she knew what I wanted her to do and did it.  I miss her little quirks SO much.

The last few days have been really hard for some reason.  I’ve been sobbing when I think about how she just went limp on my lap after a few minutes of altered breathing and periodic looks of confusion. She knew that something wasn’t right. She stopped in her tracks after peeing on her pee pads (this was after she whimpered and had some type of ‘spell’ that was similar to other episodes during her nine months with congestive heart failure).  She actually had the ‘presence of mind’ to go to her pee pads after an episode that was to end her life in the next 15 minutes.  That ‘look’ made me feel that she was confused about what was happening, and so I picked up that sweet dog, and got her situated on her comforter, with a pee pad underneath, and got her onto my lap as I leaned back in my recliner. She had some ‘leakage’ issues when she’d have those spells. I knew that if she was dying, she’d have no control- even though she’d had that brief moment of clarity to run to her pee pads.   She knew something wasn’t right, but she also knew that I was holding her, and wasn’t leaving her to be confused on her own.

That last ‘episode’ was different from others. She’d whimpered and cried when she fainted before, and while that sound was horrific to listen to, she’d snap out of it and become alert fairly quickly. This was different. She woke up, but never seemed to become ‘clear’.  So, I knew that this was going to be the end- whether she died naturally in my arms, or if it went into some prolonged situation that could only be dealt with humanely at the vet’s office. Regardless, I knew I was watching my dog’s final moments.  This was my sole companion.  She was with me every single day during some really lousy stuff, and there was no judgement (about the disability issues) and only love and companionship (during the chemo for leukemia).  My best friend was dying in my arms.

When she had that ‘agonal’ breathing (deep, but very slow, and associated with the dying process), I saw the color of her tongue change.  It became pale.  She was no longer looking at me, but I talked to her and thanked her for being the amazing friend that she had been.  I told her how much I loved her.  But I also told her that it was OK to go.  She’d been through enough.  That’s what I used to do with human patients when I was working as a nurse, and while I’m sure Mandy didn’t understand those words, I had to say them.  I had to let her go.

The previous two weeks had been long and hard, and indicative that things were changing, but she’d been alert, and interested in what was going on.  Even that last morning, she was very eager to get Swedish meatballs for breakfast (she’d become very picky during that last 2 weeks).  But at the very end, I knew I had to say goodbye…to the single being that was with me every single day for nearly 12 years, and the only being that was with me after I ended  up home all day every day on disability.  I have regular phone contact with my dad, but my dog was always by my side.  All other contacts with humans at that point were either medical appointments, pharmacy and grocery clerks once a month, the vet, visits with my dad every couple of weeks or so,   and  package delivery people.  There was also the brief contact with family on Christmas Eve.  That was literally my only contact with people in person…. but Mandy was always there.

When she went limp on my lap, I knew she was gone.  No more struggling. No need to take her to the vet, wondering if she knew what was happening.  And feeling like I was ‘killing’ her (even though I believe in euthanasia for the sake of the dog).  No more of the agonal (or difficult) breathing. No more wondering when enough was enough. No more of the up and down roller coaster of watching her have hard periods of time when she seemed to be going downhill very quickly, but then have her bounce back, and being alert and curious the whole time.

She went naturally. She died in my arms. She knew I was with her.  She didn’t have to endure the stress of a car ride to the vet (it had become difficult for her because the excitement of being in the car made her breathing more labored).  And she would get SO cold, from the marked weight loss of that final few weeks.

 I wanted more time with her.  It was 2:45p.m. when she took her last breath, and the crematory closed at 4:00… I’d called them around 3:00 p.m., and they were waiting. Dad was on his way to drive me over there.  But I just wanted to hold her for a while longer.  She was my only friend that I had contact with other than online.  She was my life.  And she was gone… I just wanted a few more minutes.  Handing her over to the pet crematory staff (who were VERY compassionate and handled her very gently) was horrendous.  Shifting her from my arms to his was agonizing.  She was obviously lifeless, and yet it felt like I was giving part of my life away to death.

I can’t get these last minutes out of my head. I do still remember her quirky, funny times, but losing her hurts like salt in an open wound, in my heart. I knew the end result of canine heart failure, and I knew those last two weeks were winding down to the end… but it also felt like part of me went with her.  Having such little contact with other people (because of the disability and physical limitations) made my relationship with Mandy so different.  And she was special (as I know all pet owners feel about their babies 😉 ). Her understanding of what I told her was eerie and made her like having ‘someone’ here.  Before becoming disabled, my other dogs were amazing parts of my life- and I loved them deeply…yet I had contact with people at school and/or work during their lives.  Maybe I became too dependent on Mandy.  I don’t know.  I just know that this time was different.

I’m going to get another schnauzer; I’ve got a breeder in mind, and am awaiting news that their mama schnauzer is pregnant.  It’s really hard to wait, but I really like the breeder and photo of one of their past puppies.  In the meantime, I’m getting things ready for having a puppy again.  And, I go through ‘Mandy Meltdowns’ – more so the last few days.  Each day, something reminds me of what is missing.  Then I replay those last minutes, then weeks, in my head- and dissolve into tears.  I’ve lost two other schnauzers over the period of time from when I was a kid, through my late 30s… and this is different.  Yes, I missed those dogs a lot, but things got better over time; I’ve never forgotten them or their individual personalities (one was nuts, the other smart and social 🙂 ).  It seems like I’m stuck, even though I’m looking forward to the new puppy.

I just miss my sweet buddy.  She made my life so much better.

Mandy at 11 years old, 2012

Mandy at 11 years old, 2012

Mandy at 8 weeks old- summer 2001

Mandy at 8 weeks old- summer 2001

Mandy's final resting place. She is with her 'big sisters' and will be buried with me one day.  I still can't get rid of her pillow bed.

Mandy’s final resting place. She is with her ‘big sisters’ and will be buried with me one day.
I still can’t get rid of her pillow bed.

Limitations Don’t Define Who I Am

My disabilities don’t make me who I am.  I don’t want someone else’s life, because that wouldn’t be me either.  I wish many things weren’t the way they are, but I don’t want to be someone else.  I’m getting very close to being 50 years old, and I’m OK being plain old disjointed, imperfect me.  I can’t be anybody else.  Trying to be someone else wastes the time I have.

I’m not able to do many of the things that I used to think defined me. I’m not able to work as an RN, and I miss that more than I can describe.  I miss taking care of other people in the way that gave me so much satisfaction.  I treated them as I’d want to be treated.  I learned how to empathize with their pain, and in turn be a better human being.  I miss those moments with someone who was going through something life-changing, and being able to offer some level of comfort.  But being a nurse doesn’t really define me. I used to think it did.  It’s a huge part of me, but it’s not all of me.

I’m diabetic, epileptic (temporal lobe nocturnal seizures), a cancer survivor (acute promyelocytic leukemia), I’ve got fibromyalgia, lung scars from multiple pulmonary emboli, bone spurs in my neck, chronic headaches, severe muscle spasms with any lifting or repetitive motion (groceries, trash, laundry), and dysautonomia, which causes severe heat intolerance, blood pressure and pulse changes, and very limited activity tolerance.  And none of that defines me.  It’s stuff that I have to deal with on a daily (sometimes hourly) basis…but it’s not who I am.

I had eating disorders for years (decades), but anorexia and bulimia don’t define who I am. I thought they did, and when I was in early recovery, I didn’t know who I would be if I wasn’t ‘the one who won’t eat’.  But all eating disorders did was mask who I really am.  They took away my ability to live normally and interact with people in a way that really put me into any sort of relationship. My main relationship was with the eating disorders. Nothing happened in my life unless I thought about how it would affect my ability to avoid calories.  That was my primary motivation in everything; any sort of real friendship was put way down on my list of priorities- though I didn’t see that at the time. It was a very selfish time in my life that I’m not proud of.  Eating disorders only steal time- they do nothing else.

Being a rape survivor doesn’t define who I am. It has had a huge impact on my life to have survived six hours of continuous sexual torture.  It changed how I interacted with people, and my ability to allow anybody to get very close.  But it’s still a relatively small part of my life… six hours changed a lot, but they didn’t change who I am at my core.

So, who (and what) am I?  I’m an average human being who wants to be accepted and have people in my life who accept me, warts and all.  I loved (and miss) all of my dogs, and am looking forward to getting a new puppy (and am waiting for her to be conceived at this time; I know where she’s coming from).  I care about people, and my heart goes out to those I see on the news, and hear about on FaceBook.  I miss my ‘old’ life before disability, but am learning to accept what my reality has become.  Most of all, I love God.  Without Him, I wouldn’t be here.  The consistency I feel when I read through the Bible (especially Psalms and Proverbs when I’m feeling badly) is what I can depend on much more than I can with human beings, who are fallible just as I am.  Every day is a chance to just ‘be’. I’ve had times when I thought that I would die, so life is precious.  I realize that in spite of things that have happened, I’m very fortunate in so many ways.  Some days, I don’t remember that as much as other days.  But I do understand that I’m here for a reason, and I’m thankful for that.

 

 

Another Season of Dysautonomia

It’s so frustrating to be at home watching a movie, and begin to feel the familiar feeling of one side of my face being on fire, my heart rate being erratic, and then the general ‘unwell’ feeling.  I’m at home !  I’m in charge of the thermostat (at 64 degrees).  I’m not moving around when watching the movie.  The film (‘Flight’ – great film about addiction- NOT primarily an airplane suspense film) had to be the trigger.  The autonomic reactions to the various ‘adrenaline’ kicks in the film set me off… and there’s nothing I can do about it now.  A quick glance in the mirror to confirm that the left side of my face is nearly purple-red, while the right side stayed the ‘Midwest winter pale’, and I know what’s going on. The dysautonomia is acting up. Again.  But, I’m not going to stop watching movies or just ‘living’.

In the beginning of the dysautonomia, medication bought me eight years of manageable and employable life.  It took some time to get the right ‘cocktail’ of beta blocker, anticonvulsants, and benzodiazepine, but they worked. It was great! That was a long time ago. But the last few years I worked were pretty dang good.  I’d have occasional ‘spells’, and they were annoying- but my ‘good days’ far outnumbered my ‘bad days’.  I’ve been disabled for nearly 9 years now.  And things have been getting progressively worse.

I’ve had to shave my head to eliminate the source of heat from having thick hair. I’m not kidding. I get the #1 blade on the clippers at the hair cutting place.  The next move is to go to a barber for a straight razor shave.  Losing the hair has helped somewhat, but I’ve got to face facts. I’m getting worse.  I’ve talked about the ice vest before- and it has been extremely helpful.  Without it, there are MD offices that I couldn’t tolerate; their thermostats are set for tropical birds, not humans, in my thermo-biased opinion.  My next option was to be calling ahead to see how things were running as far as delay time in the waiting room, and then sitting in my car in the parking lot (with the AC on), and have the receptionist call me on my cell phone when it was actually time to see the doctor.  The ice vest has helped with that.  I’ve also got ice ‘bandanas’ – one type has actual ice packs in it, and the other is essentially  getting a bandana wet and letting it evaporate.  The ice pack ones do help, but don’t last long, so I have to keep changing out the ice inserts.  I haven’t tried the evaporation one yet… it is visually unimpressive.

People think that winter would be easier. Well, if people didn’t turn their heat on, it’d be wonderful !  But ironically, it’s worse.  I can’t depend on different places keeping the temperatures the same, so it’s a crapshoot as far as how I’ll tolerate being indoors away from home from one place to the next.  I wear the lightest weight coat possible, and remove it immediately when I get somewhere. The ice vest is with me unless I’m going to be in the car the whole time.  I’m only away from home for more than an hour about once a month, to do my main grocery shopping when I get my check.  That finishes me off for the day.  If I’m going somewhere for more than 2-3 hours (once or twice a year- usually Christmas, and maybe one other time), I have to pack the extra bag of ice vest inserts, the cooling ‘reusable dry ice’ packs to keep the inserts activated, and the ice bandana refills. It weighs about 25 pounds or so when it’s fully packed, which then requires the rolling walker since I can’t maintain my balance carrying the ice ‘chest’ and my purse.  Then there are the ‘as needed’ medications to regulate my heart rate and/or blood pressure, water to take meds and stay hydrated, stuff for blood sugar (glucose source and insulin), other diabetic supplies and meters, and my battery operated hand held fan with extra batteries.   Nothing is simple.

I recently found out that the ice vest inserts aren’t allowed in airplane cabins, since they are actually liquid when they ‘thaw’.  The company had enough experience with various airlines to know the TSA issues. I’d need the full pack for pre-boarding time in the terminal, as well as any time in the air. I didn’t have anywhere I needed to be; I just wanted to know the options.  Flying isn’t one of them.

When I’m at home, I can maintain the temperature fairly well, unless my autonomic system is given a swift kick from something I see in a movie, on TV, or even read online. If ‘fight or flight’ is triggered, I’m going to have problems with my heart rate. If I don’t get that under control fast enough, my blood pressure will tank, and I’ll pass out.  It’s a slow dance with everyday life.  And no two days are the same. Triggers are similar, and there is some consistency- but if I’m also tired and/or in pain, stuff gets dicey faster.

But I’m fortunate.  I’m in a safe apartment, and I’m still able to live independently.  I’m not the best housekeeper in the world, since any activity affects heart rate, but I’m slowly getting some things done that had been mucked up by the fatigue of chemotherapy (for leukemia; I’m in remission).  A friend is helping me get stuff taken out of here that I want to donate to a thrift store (and get OUT of my space), and that’s helping a lot.  I’m working on some sort of ‘paced’ vacuuming and dusting.  I’ve got a network of cobwebs that look like miniature ziplines going from corners of rooms to bookcases. I wonder what travels on them…. eek !

So, another season means shifting how I do things and getting used to another aspect of dysautonomia as things get less stable.  Something else becomes another thing to work around. There’s another cooling gizmo to try.  And a list to take to the neurologist for the next visit, to see if more medication adjustments are needed (not fun).  In the twenty years I worked as an RN, I never heard of dysautonomia. I’d heard of autonomic dysreflexia (which is a type of dysautonomia), but nothing along the lines of POTS, neurocardiogenic syncope, or other forms.  Whatever it takes to stay conscious and out of the ER and/or hospital is worth trying. Staying educated is extremely important since most ER docs and nurses aren’t all that familiar with the forms of dysautonomia, if they’ve heard of it at all.

I miss my old life. I miss being a working RN. I keep my license active and do my CEUs for license renewal; I don’t  ever want to have to say I was an RN…. I am an RN.  I just have to keep myself from totally falling apart as best as I can.  With changes in how my body functions, and different medications I’m on, I have to stay fairly up to date with drug interactions and functional adaptive equipment.  I miss being useful.  But, I have to focus on what still works.  I also am thankful that I’ve got the ability to blog, and meet others who, unfortunately, know exactly what I’m talking about when I describe something.

 

Dysautonomia and Disability- Social Security and Medicare

According to some, I’m nothing but a leech on society.  Here in the US, needing help is seen as being nothing more than a parasitic slug that simply doesn’t want to work. There is no distinction made between those who are lazy (a minority of the people on government assistance), and those who have worked for many years, only to become physically ill and unable to work, by those who ridicule the ‘entitlement’ help out there.  It’s so disheartening to be lumped in the category of those who want handouts. I’d give anything to have my health back.

I spent 20 years working as an RN- in staff, charge, supervisory, and department head positions. Who knows, I may have put an IV in you, or wiped your butt.  I may have been the nurse who called your elderly mom’s doctor 8 times in two days to get an order for her to be seen by a specialist.  I may have spent an hour getting your preemie to drink two ounces of formula. You don’t know. To you, I’m worthless now, and just want ‘entitlements’.  You see me as someone who just wants free stuff… such a cruel and uneducated view.

Well, let me tell you about the ‘free’ stuff. I paid into Medicare during the 25 years I worked (I worked prior to and during nursing school as well as my years as a nurse). I paid into Social Security during those 25 years as well.  I’ve never been on food stamps.  To get Medicaid assistance, I had to meet requirements I didn’t qualify for until a horrendous couple of years of life-threatening blood clots in my lung, and then an aggressive form of leukemia. Those aren’t even the reasons I’m on disability (autonomic dysfunction/dysautonomia and seizures are the culprits there).

To get coverage that meets my medical condition needs, I pay around $500 per MONTH in premiums for Medicare Part B, Medicare Part D, a Medicare supplement that covers what Medicare doesn’t, and prescription co-pays for medications that don’t come in a generic form (insulin is the big one).  That’s not free.  That’s $6000/year (Obamacare or not- it’s BEEN this way for years).   So tell me how I’m living some life on the dole, and just sucking the government dry…

I’m not able to walk more than 100-150 feet without pain that is intense enough to change my plans.  Even with my walker.  To make a sandwich means I’ll hurt. Doing a load of laundry cause intense back and leg spasms.  Bringing my groceries in from the car means a LOT more pain.  I live alone. There is no help for the mundane- I simply have to get it done…or not.  I do the best I can.  And then I see so many hateful comments that don’t differentiate between those who can’t and those who won’t.  And the difference is huge.

To qualify for Social Security Disability isn’t an easy thing.  I had more than 1000 (one thousand- not a typo) pages of medical documentation, so I was approved on the first application. Some people have to appeal several times before they get approved.  People with obvious disorders have more stress by not getting the help that they need.  Do I think that there are people who abuse ‘the system’ ?  Yep.  But I don’t think they are the majority, by a long shot. People become homeless waiting for help- people don’t fake that.  And, I don’t think I’m the only one who feels hated for needing help.  I have a disability policy from the last place I worked- before being sent out by ambulance from work roughly a dozen times during the last 2 months I worked there.  That  private policy allows me to have %66 of my last monthly salary for my total monthly income (with Social Security paying the first part, and the private disability policy paying the balance of the %66). I lost a lot of money by being disabled.  If I didn’t have that policy, I would be living in some pit, in some trashy neighborhood, hoping everyday that nobody shot my windows out.  Do I deserve that simply because my body fell apart?

I never know when my body is going to poop out on me for something as mundane as the thermostat being warmer than I can tolerate. (One former co-worker RN refused to allow me to have a small space on the pediatric floor where I worked to set the thermostat to a temperature I could handle, so I could do my charting- and she was the boss’s pet, so I was screwed… the area I wanted to cool off would not have affected her or the patients in the least….she was simply a cold-hearted bitch with no consideration for what was going on with me; I could have done a big ADA scene, but it really wasn’t worth it for working with Goldilocks… she wasn’t worth it. I’d worked enough different types of nursing to get another job, and keep trying to make it work ).  I don’t even know how stable my internal thermostat will be when I’m at home.  Not working.  I tried to make it work at another job, with fans in my office, and trying to cool off when I felt I was getting overheated, but it simply didn’t work.

The many times I was sent to the ER before, and the first few years after, ending up on disability were a nightmare. I was labelled a ‘frequent flyer’- which is about the most hated label someone can get at an ER.  I was treated like some psycho-drug seeker.  I never asked for anything.  Most of the time, I never remembered getting there via the ambulances.  I wasn’t the one who ‘sent me’ there. My employer had, and I had no say in the matter. I understand they were covering their butts when I was unconscious, because something horrible could be happening- even though most of the time, cooler air and being horizontal were the only things to help.  It sucked.  The ER nurses, and a couple of the doctors, were nasty.  Just plain cruel sometimes.  One of the nice doctors even let my regular doctor know that he’d seen some inappropriate nastiness… but nobody did anything.  I had to just go to a different ER when I knew something was wrong, so I wasn’t blown off.

Real people with real disorders need Social Security (Disability) and Medicare, even though they haven’t hit retirement age.  It’s not a choice… it’s survival.  Without those ‘entitlements’ (that I paid into from the time I was able to work at 16 years old until literally falling over at work repeatedly at age 40), I’d be homeless or dead.  I hate needing these things, since the stereotype by people who don’t know people on disability is that of some bum, mooching off of the government.  I’d love to be working as a nurse again.  I loved being a working RN.  I still keep my license current, even though I’ll never be well enough to use it… but I still want to BE a nurse- not  ‘been’ a nurse.  I worked for that license.  And I loved what I did.

I may be on government assistance, but it’s not free.  It changed my income drastically, and allows me nothing ‘extra’.  I’m doing the best I can, and would encourage everyone to get disability insurance where they work. You never know when something will happen to you.  Nobody plans on becoming disabled.

Dad Went To The Oncologist Today

Over the past few months, my 80-year old dad has been dealing with some health scares, starting with an egg-sized mass in his neck. Several weeks after it was found, he had surgery to remove it on November 30, 2012.  Surgery was considered very successful, as the surgeon was confident that the edges were all well encapsulated, and the mass had been completely removed. But they needed to figure out what had caused this thing. He hadn’t had any symptoms- it was found when he’d gone in for a routine exam to get his thyroid medicine refilled.  He had had two biopsies prior to surgery, and then the pathologist had the entire mass to dissect and tear up, and there was still no definitive answer as to the type of cancer this thing was. They knew it was an extremely low grade cancerous tumor that had actually replaced his thyroid tissue on the right side. They felt very certain that it wasn’t going to have any impact on his lifespan…but they still were not sure exactly what it was.  It had all of the characteristics of a ‘good’ cancer- but that’s about all they knew.

So, he was referred for a PET scan (fancy CT scan) and to an oncologist (who just happens to be the same oncologist I see- and like). I’ve gone to every appointment with dad (until today), since he’s not up on all of the medical terminology.  I’m quite comfortable with medical stuff, being an RN since 1985 and though I have been on disability since 2004, my own medical issues and cancer have kept me somewhat up to date on many things. And, I know how to use the search engines online 😀   I’ve been looking up everything that the docs have said, and I’ve been just as confused as dad.  I wanted to hear what the docs said, since dad calls me with questions, and I wanted to have the info as accurate as possible.  Sometimes dad’s translation of medical terms is a bit iffy !

At the first oncology appointment, the doc was very straightforward. They needed to rule out multiple myeloma. This is a cancer that dad has been terrified of since his mom died of it in a long, dreadful 9-month death back in 1979 at the age of 74.  I remember it fairly well (I was protected from some of the more sordid details- but I was 15 years old, and knew she was very sick), and knew she had been on dialysis 3 times a week during those months, had a horrible ‘quality’ of life, and had coded twice during dialysis.  Back then, they didn’t offer people hospice care like they do now. They went for the maximum treatment, even if they knew it was essentially pointless. Grandma went through hell, and dad remembers that very well.

At that first appointment with the oncologist, dad was told he’d need a bone marrow biopsy, as well as some other lab work.  Dad was offered the choice of doing the bone marrow biopsy then, or scheduling it for another day. I piped up and said he needed to do it then. He did NOT need to spend days worrying about it and imagining the procedure in his head (as he asked me about it, since I’ve had five of them).  The procedure does sound dreadful.  They drill a hole in the back of the pelvic bone to suck out bone marrow.  But, these days it’s much easier than the one I saw during nursing school.  That was the only thing that nearly dropped me to the floor in a dead faint during all of nursing school.  I don’t ‘do’ bone noise. But having them done, I learned that they aren’t that bad. I drove myself to and from three of them (the first two were done when I was in the hospital). So, dad got himself on the exam table, took some deep breaths, and had it done. He did extremely well, however, he didn’t really convince the nurse of his ability to drive home when he answered her with “well, I guess we’ll find out”.  Good one, dad.  We all felt so safe with that answer.

The oncologist also said during that first appointment that his PET scan did not show the usual ‘holes’ in the bones that someone who had multiple myeloma would likely have. And, dad hadn’t had any symptoms. This whole thing was sort of found by accident.  That was all good news. But, the bone marrow biopsy would say one way or another if he had multiple myeloma or any other bone cancer.  SO, after that appointment, there were about two weeks of waiting. He saw his surgeon last week and he felt that the results didn’t show MM- and could possibly be something so rare that he might write an article to be published on dad’s case.  There’s a possibility that this thing actually started as a couple of very slow growing cells transferred to him while he was still in his mother’s womb.  That sort of rare.

Today, I couldn’t go to the follow-up appointment to get the bone marrow biopsy and other lab work results.  I’ve got a nasty cold, and nobody in an oncology office with lousy immune systems needed my germs floating through the air.  Dad promised that he’d call me as soon as he got home, and he did. NO multiple myeloma. No chemo. No chance of that sort of agonizing death (though treatments and chemo are far different now than they were in 1979).  He does have to have some radiation, more as ‘housekeeping’ to be sure that if there are some stray cells they get nuked (the oncologist had mentioned the possibility of this at the first appointment). Dad will have some lines drawn on his neck so they know where to aim the radiation- so it will be visible that something is going on. Until now, I’ve been sworn to secrecy (well, that hasn’t actually been revoked).  But this is good news, and those radiation lines will be visible. People will know ‘something’ is going on.  And here’s the bottom line: dad is going to be OK.  This will not kill him.  🙂

As much as I love Texas and the 17 years I lived there, I’m so thankful to be here now for my dad.  I’m also thankful for the last 10 years that I’ve had to spend time with him. Though face-to-face contact is not as much as I’d like because of my own health issues, we do talk daily, even if he’s on vacation (well, those cruises and other international trips were some blips of time without daily contact, but I didn’t hear that any boats sunk, so I was fairly certain he was safe). When I am able, we do go out and do things together. And he’s always got my back. No matter what, I know that he’s always had my best interests  in mind, and now I want to be there for him to help with medical language translations, and just ‘be’ there.

Time is something that no one can ever get back.  Once it’s gone, that’s it.  I’m trying not to waste what time is left- and that is the kicker- nobody knows when it’s going to be over.  I know that one day he will be gone, and I dread that thought.  I’ve learned during these 10 years back here, as an adult, that he is, and always has been, much wiser than I ever gave him credit for (I think that’s pretty normal- when I moved to Texas, I was 22 years old and still had that post-adolescent ‘all parents are a bit dim’ outlook).  I’ve learned much more about what makes him him, and have so much more respect for him. Being adopted, I could have landed in a lot of places.  I’m SO thankful that I was ‘given’ to the dad I got. While no parent is ever perfect, he did an amazing job as a dad.

I thank God that he is MY dad.  And I’m glad he’s going to be here for a while longer 🙂