Dysautonomia Awareness Month…. I’m Very ‘Aware’ All Year, Every Year

OK.  October is Dysautonomia Awareness Month… With Breast Cancer Awareness Month at the same time, nobody will care about dysautonomia.  Men are more than likely behind the sanctity of boobs, so along with being a rare disorder that people really are NOT aware of, there is the whole ta ta thing that people go all pink for, and dysautonomia remains a mystery to most, if they ever hear about it at all.  Don’t get me wrong, I’m not ‘against’ cancer awareness, but who on the planet with a pulse and working brainstem isn’t aware of  breast cancer?  I’ve known and do know many women with breast cancer (including my mom, who died in 2003 after surviving multiple cancer sites for 17 years, dying from something unrelated). I understand that any cancer diagnosis is a nightmare (I’ve been there, with leukemia).  (And why is there no blue ribbon with balls on it for testicular cancer awareness? Ladies? ).   Anyway, dysautonomia is something that I’ve lived with for decades- probably longer than it was diagnosed.  It didn’t flatten me until 2004.  And most doctors are clueless.  The general population can’t even pronounce it.  Dis-auto-gnome-ee-ah.

Every morning, I wake up not knowing if I’ll be able to actually get out of bed and begin my day without my head spinning as my blood pressure tanks.  Will my peripheral vision begin to narrow, and will my hearing get muffled?  Or will I actually be able to get up and not have to lie down again?  When I get in the shower, will I get that ‘sweet spot’ in the temperature of the water where I get a nice hot shower, or will it be too hot, and once again start the process of passing out?  My heat intolerance isn’t about temperature preference or comfort, it’s about staying conscious.   My thermostat must stay around or below 64 degrees, or I start to have symptoms.  Fifty degrees is much better if I’m outside.  I wear a light snap-front sweatshirt, left open,  when it’s in the 40s.  If I leave home to go into another building where I have no control over the thermostat, I have to wear 5 pounds of cooling vest inserts.  To stay conscious.  I’ll start to ‘burn up’ for no good reason (and this is NOT hot flashes- I’ve had those, and they are totally different).  Or I’ll get so tired, that doing anything is overwhelming.

I ‘look OK’… aside from being overweight, and having very few eyebrows post chemo (which at this point has to be permanent), I look fine.  That’s all well and good- but it can also be very frustrating when trying to explain why I can’t do something.  I also have multiple ‘other’ medical and orthopedic problems (discs, knees, spine, epilepsy, diabetes, yadda, yadda, yadda…), so when I’m walking I look a bit gimpy, but the dysautonomia is totally invisible if I’m not lit up like a red stop light from severe flushing when the dysautonomia spells kick in.  My thigh muscles have atrophied (probably from diabetes and chemo), which looks weird, and makes walking quite tiresome.  But people really don’t ‘get’ the whole dysautonomia thing.

The autonomic nervous system controls involuntary body functions- blood pressure, heart rate, breathing, flushing, muscle/brain signals, etc.  There are many ways this can all go wrong.  Initially, I had problems with passing out, as well as my right pupil dilating.  Then my gait would get wonky, and eventually I’d keel over and sleep hard for hours.  Temperature dysregulation hadn’t shown up yet.  I was in Texas when this all started, and I did fairly well at first.  When it was first a ‘thing’, I was living in a house (with no central AC- just room units for at night) with a coworker to share expenses (perfect situation; we had opposite schedules, so it was basically like living alone).  My housemate would hear me hit the floor from her room at the other end of the house, and find me passed out on the wood floor.  I thought I was just ‘nervous’ after a recent hospitalization for eating disorders, but she said that there was nothing  ‘nervous’ about me that she’d seen, and she really thought I had some type of medical issue.  One  night I couldn’t get up off the floor like usual, and I agreed that she could call 911.  That started the whole testing process.

I was lucky that I had a neurologist who thought I had dysautonomia. She sent me to see an electrophysiologist (EKG specialist) in San Antonio, who ended up doing a tilt table test.  My blood pressure dropped to 44/16, and heart rate dropped into the 50s (heart rate should go up, and compensate for a low BP, though a BP that low isn’t usually associated with ‘coming back’).  I was put on the first of several meds, and sent home (driving myself 60 miles after nearly passing out).

I continued to have issues with work, but eventually meds were sorted out, and I was doing well enough to get my work done. Additional disorders were ruled out (MS, myasthenia gravis, pheochromocytoma, brain tumor, stroke, etc).   The nursing home I went to work at had some very accommodating supervisors, which made a huge difference in not being panicky when I felt something coming on (the prior place did a lot of ‘threatening’, and since I was the only RN on campus at a drug/alcohol detox center on weekends, I understood the need for a conscious employee :p – but I didn’t want to stop working; being a nurse is who I AM).  I had a mattress overlay in my office at the nursing home,  to put on the floor if I needed to lie down.  I also had a fan from home, as temperature had begun to be something I had to keep ‘moderate’.  If an episode hit, I lied down; when it was over, I finished my work.

Fast forward, and I’m back in Illinois in my hometown, trying to keep things together at work, and it just started falling more and  more apart. I was hauled out by ambulance 10-12 times in a month or so at another nursing home (office job), and it was clear that I wasn’t able to keep working. I’d left a pediatric hospital job since I was terrified I’d get dizzy/lightheaded when handling very tiny babies (or larger, heavy ones), and that just wasn’t something I was willing to risk (along with some other issues with the job itself).  I had to deal with a new neurologist on my insurance plan at the hospital, who seemed clueless.  Once on disability (and Medicare two years after that), I found a neurologist who did know about dysautonomia, as well as a internal medicine doc who was quite familiar with the disorder.  With multiple medications (roughly 25 pills/day on a good day; more if not- and 3-4 shots of insulin) and total control over my thermostat, I’m able to sit up for several hours, but  I have to get up every few minutes to avoid any ‘pooling’ of blood in my legs, or I’ll enter the ‘pre-syncope zone’ when I stand up.

Now, my ‘normal’ consists of having the air conditioner on when it’s 30 degrees Fahrenheit outside.  When there is snow piled up outside, my AC unit is the only one with space around it where the snow has melted from the heat generated by the AC.  I leave home about 2-3 times a month– monthly grocery shopping, a doctor’s appointment here and there, and maybe a short trip to the grocery store about half-way between disability checks, for milk and/or bread.  Everything has to be ‘paced’.  If I do laundry, I can’t unload the dishwasher.  If I take trash to the dumpster, I can’t vacuum in the same day.  And I struggle to maintain any muscle tone, to avoid getting worse… but the chemo I had to have to survive the leukemia has caused deterioration.  I guess there are tradeoffs with everything.  Nothing is taken for granted.

Being on Medicare has been a horrific eye-opener.  I used to do the assessments that determined reimbursement for Medicare patients at the nursing home I worked at in Texas.  I was superficially familiar with Medicare.  Then I was on it.  Medicare is expensive.  There is the part B (doctors’ office and equipment/supply part) monthly premium (about $110).  There is the supplement plan since Medicare doesn’t cover huge portions of hospitalizations and tests (so add another $325 per month).  The part D (prescription plan) is about $75 per month, and between over the counter medications I MUST have, as well as paying out of pocket for insulin, that adds about $125/month (I’ll get into insulin in another post).  SO if all goes well, $635/month goes out the door for medical expenses.   That pretty much ensures no out of pocket expenses for doctor’s office visits, tests, and (knock on wood) hospital costs.  When I was in for 6 weeks for leukemia in 2010, the bill was $300K…. nearly 1/3 of a million dollars.  I will make my last payment on what they didn’t write off this month.  Four and a  half years later.  That’s not included in the $635.

Dysautonomia can be mild or fatal.  With the chemo causing deterioration, and knowing what I was like beforehand, I don’t think I have the fatal type (Johnny Cash did).  I have the invisible, life-altering, disabling, survivable kind.  Some symptoms may be worse than others on different days.  I can have one cheek very hot, and flushed to almost a blue-red, while the other is cool and has normal coloring.  I can have blue fingernails, not from lack of oxygen, but because of constricted blood flow.   My heart rate has dropped into the 30’s for no good reason (that bought me 5 days on a cardiac floor with nurses who were very nervous about the epilepsy- padding the side rails and putting a bed alarm on my mattress that went off if I got up to go to the bathroom- and GADS, they panicked when I got up to walk in the halls for some type of activity one night…. how did they think I lived at home?  Alarmed, padded bed?).  Sometimes one arm is flushed and hot, and the other cool and pale.  I’ve looked ‘dead’ per one former supervisor, with breathing so shallow and extreme paleness, it scared her many times.  I live alone, so have had to learn what sets me off… sometimes it’s as simple as a ‘scare’ on a TV show that wasn’t expected.  But heat and pain are my main triggers.  I’m in constant, chronic pain- that’s harder to control than the temperature.

Some people have POTS (postural orthostatic tachycardic syndrome), which causes symptoms if someone is standing. At all.   Their heart rate goes out of control simply by being vertical. Lots of folks with that need wheelchairs for safety.  There is neurocardiogenic syncope- which is actually a simple faint, until it’s a pattern.  There is pure autonomic failure – where nothing works right most of the time.  Shy-Drager syndrome is one of those total failure syndromes, and even saliva production is involved.  Dysautonomia isn’t one thing.  It’s a combination of symptoms that are generated by an abnormality of the autonomic nervous system.  Some are relatively minor, and others require feeding tubes, and other external measures to make it survivable.  More people have dysautonomia than are diagnosed, per research estimates. It can affect any age group or gender, though females tend to be diagnosed more often.  It can be seen as a conversion disorder or other emotionally based problem, which causes improper diagnoses, and completely inappropriate medications.  I encourage anyone who finds their symptoms listed in the informational links to talk to their doctor.  There isn’t a cure, but it’s generally not fatal, and can be treated.  Getting used to the new normal is the hardest part, as is not being understood.

See the following for more information:

www.ndrf.org 

www.dysautonomiainternational.org

www.dinet.org

 

 

 

 

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Former Co-Workers When I Worked Pediatrics

I was stumbling around on Facebook, and  found three of the R.N.s I worked with when I worked pediatrics, and sent ‘just saying hi’ messages.  I’m not sure they’ll see them, but I hope they do.  When I worked there, the dysautonomia had started getting much worse, and they were stuck with me some nights when I was having heart rate and blood pressure issues.   More than once, I was hauled down to the E.R.  Not good.  I was more of a liability with my inconsistent ability to stay vertical.  And I’m not sure anybody really understood what was going on.   I know I was stunned at how bad things were getting… and it scared me.  But I still thought I could work if I found something else.

Anyway, I have respect for them, and am glad I had the chance to work on a pediatric floor.  I’d taken care of kids on many other types of floors I worked  (neuro, head injury rehab, general med-surg) for years, but not a ‘real’ pediatric floor.   I greatly value the experience I got there.   I’m going to post this with a ‘public’ tag, hoping they see this if they get the messages.

When the dysautonomia first kicked in after I’d moved back from Texas, I wasn’t sure what to expect, so didn’t panic at first. I’d always been able to find some medication that helped.  I had to do a 3 week heart monitor that showed PVCs.  That was treated with medication, and it did help to some degree.  I could still feel them, but not as often.  But, I was still  able to work more than not.  I was starting to feel uneasy around the tinier babies… I would do all care and assessments without moving the baby off of the bed.  I’d ‘cradle’ them in my arms, and do everything that needed doing, but I was afraid to move them away from the safety of the cribs.

The summer months were hard on that floor because of the decreased census (kids not in school giving each other ‘bugs’). Being single, I didn’t have a spouse to help make up the difference in pay I was losing when hours were cut (I lost a month’s hours over the summer).  That was a problem.  I couldn’t work overtime when I was doing all I could to work the hours I was assigned.  Everybody got hours cut- and it was fair as far as that went, but I needed full-time work year round. The nurse manager contacted an adult med-surg manager who said she’d plug me into their schedule, but she never answered my  phone calls.  And I was getting scared.  I needed to work somewhere where  I wasn’t so anxious about the dysautonomia.  I didn’t trust my own body…but I wasn’t ready to give up working. Being a nurse has been my identity for a long time.  It was like that part of me was starting to die. But I didn’t want to give up.

I made the decision to work at a nursing home.  I’d worked in several before.  I wouldn’t have the fear of dropping a small baby/child when I’d get dizzy or feel the PVCs, and if I had to move someone, there was always a CNA around somewhere at the nursing home to do it together.  It was more team oriented- though any one of the pediatric nurses would help when asked.  I’d be pushing a medication cart around, and if needed, I could stop for a minute, bend over, and try to clear my head when the dysautonomia kicked in.   While I really was thankful for the chance to work pediatrics (the reason I went to nursing school 18 years earlier), it wasn’t a good thing in many ways anymore.   And, it was really hard to leave.  I really liked the vast majority of people I worked with.  They gave good care to the patients, which I respected.  Most of the night shift nurses were ‘older’ (not 20-somethings), and I enjoyed working with nurses closer to my age.  But I had to leave for many reasons.

I felt badly about the short notice they’d get when I was feeling the pre-syncopal symptoms.  If I was taken to the E.R. in the middle of the shift, someone (or a couple of them) would have to take care of my patients.  That wasn’t fair to them.   There were huge issues with the temperature of the break room (or any designated place I could go cool down). My heat intolerance was bad, but  at that time, I could still go into patient rooms and do what I needed to do, even if it was quite warm.  The babies’ rooms were especially warm, which they needed;  I understood that, and was  able to manage.  But it was nearly impossible to find somewhere that was cool enough for me to chart between assessments or meds (being in the rooms), see my lights going off, and do better getting through the shift- mostly because of one nurse who was considered the nurse manager’s ‘pet’.  That one nurse in particular was very nasty about the thermostat.   I didn’t care if I  was in the main area- I just NEEDED somewhere that wasn’t as hot as most of them liked it (I’ve deteriorated a lot since then, and can’t leave home without cooling vests, and my thermostat is never above 68- generally cooler, and often on when the outside temp is below 40 degrees). I leave home about once or twice a month, always with the cooling vests.   I could have pursued it with the ADA (Americans with Disabilities Act), but I’m not much into ‘forcing’ someone to do the right thing.   If they’re that nasty, I’m not interested in working with them.  There were many really great nurses to work with there, but if I couldn’t stay conscious, I was no good to them or the patients.

Since then, I worked about 8 months at the nursing home before I was essentially forced to go on disability.   I was passing out ‘hard’, and hauled off by ambulance at least 10 times in the last 2 months I was there. I don’t remember any of the ambulance trips.  By then,  I had an office job doing care plans.  I tried to go back  7 months later, but it didn’t work.  My body was crashing, and the pain from the repetitive motion and shoving those 200 pound medcarts around was triggering more autonomic stuff- whether at work or at home.  Nobody there would acknowledge I existed after I had to leave.  One went out of her way to avoid me at the grocery store.  I’d gotten sick- I wasn’t some sort of criminal !!

Since being on disability, I’ve deteriorated even more, and had some more challenges come up.  I’ve had leukemia (acute myelocytic, subtype M-3, or APL) with 19 months of near daily chemo of some sort- that blew me up like a toad (face/chin is still not right after a nasty cellulitis and ear infection during the worst of the leukemia), I lost my hair twice, and my eyebrows never did come back in right. But a local news anchor died within 2 days of diagnosis from the same thing, so I’m fortunate.  I’ve got degenerative disc disease in most of my spine, so chronic pain.  I had a knee replacement.  I had multiple pulmonary emboli, and spent a lot of time hospitalized getting that straightened out, or for complications from them or the warfarin. I had testing to see if part of my brain could be removed- come to find out I need all of it :p   Chronic pain and headaches are just daily life.   Chemo makes autonomic stuff worse; my legs are atrophying, so I am ‘working’ my thighs as much as I can to maintain the strength there.

But I’m fortunate.  I’ve had great experiences as an R.N.   I miss it daily.  I’ve been of some use to some family and friends when they’ve been going through their own medical disasters.  But, I had really hoped that I’d work on that pediatric floor for a long time.  It was my dream job when I was in nursing school.   I really enjoyed most of the people I worked with.  I respected them and the care they gave those kids.  I liked the patients (the abuse cases were hard to handle emotionally; they angered me), and learned a lot.

I’m also still able to live on my own.  There are times when I wonder how long that will last, but I’m doing what I can to make sure I can live here in my own space for as many years as possible.   I have a ‘new’ dog; she’s 18 months old now, and nuts, but a lot of company.   I got her when she was 9 weeks old.   My dad is still healthy and a big part of my life. I have two friends from when I grew up here. One has helped me a lot with straightening out my apartment after being packed 4 times to return to Texas… every time I packed, something else would go on medically; I’m no longer able to travel very far.  The TSA has issues with my cooling vests (they turn into liquid), and I can’t be ‘contained’ in something with no room to get up and move around. But,  I have adjusted how I do things (order many items online, get Schwan’s food delivered, shop in the middle of the night when it’s cooler, and there are fewer people getting huffy because I don’t move as fast as they do, etc.).   There are ways to get most things done.

SO, if any of those nurses I worked with see this, thank you for being part of the good things I remember when  I worked with you.   I may have only been there for eight months, but you left good impressions, and it was long enough to respect you.  I wish you all well.   I didn’t know how to handle what had started getting bad, and I’m SO  sorry for the inconvenience I was for you, as well as the times I sort of spooked some of the nurses I worked with when I’d hit the floor.   But mostly, thanks for the good parts 🙂

Dysautonomia episode w/ chest blotching, severe flushing, lightheadedness, and other symptoms that come and go with various intensities.

Dysautonomia episode w/ chest blotching, severe flushing, lightheadedness, and other symptoms that come and go with various intensities.