Frustration and Unpredictability of Dysautonomia

I’m supposed to be over at my dad’s  friend’s home, eating tacos with them.  I’d looked forward to it since getting the invitation this morning.  I took a shower (not a simple task when temperature changes are risky) and got my extra ice vest inserts packed into the insulated bag, and the ‘full’ ice vest ready to go.   I got in the car, and headed over there.  By the time I got to the first stop sign, I could already feel things changing.  I hoped that some cool air, and ‘thigh squeezes’ would change my heart rate and blood pressure (I couldn’t measure it in the car while driving, obviously, but anybody with dysautonomia knows when it’s changing).   No such luck.

I got to her street, and since I wasn’t feeling any better, decided it was better to circle around and go home.   I’ve had a mental plan for years for what to do if I get symptomatic in the car.   The air conditioner (which is usually on anyway), talking to myself, thigh squeezes, and knowing where the side streets are in case I need to pull out of traffic are at the top of the list.  There is no scarier place to have symptoms than when I’m in the car, driving.  If I have symptoms before leaving home, obviously I don’t drive- but tonight, it hit kind of fast. Fortunately, I do have enough warning before I pass out to safely pull over, but  I feel badly for being such an unpredictable guest.

During the last few months, I’ve had a lot of stuff going on that has made the dysautonomia (POTS and some neurocardiogenic syncope- not quite to the point of syncope) labile.  I’ve had a scare with my kidneys (that turned out to be just a scare, so dodged a bullet there).  I’ve had to change the dose of my primary dysautonomia beta blocker to HALF of what it was a few months ago- my blood pressure got low enough to cause the decrease in kidney blood flow and change my lab values, which is not a good thing.  I’ve had a lot of neck and lower back pain that has required some tests that didn’t show anything new (degenerative disc disease, and some bulging discs in my neck).  I still have another  test in a couple of weeks (EMG- needles in my thighs with electricity pulsed through them; I’ve had it before- it’s no big deal; nerve damage is already known- just have to see how fast it’s changing).  My right thigh is visibly shrinking in a weird, not normal way (like maybe if I were losing weight…. then both thighs should ‘shrink’ the same).  Diabetic neuropathy is getting worse with burning leg/thigh pain, as is gastric reflux.   The reflux issue has some other tests pending as well, but the ones that have been done show esophageal spasms as well as chronic gastritis.  Toast is my friend. The diabetic nerve pain is a burning like I’ve never felt before.  I have been awakened by it, and it feels like what I’d imagine if someone put some type of accelerant on the outer part of my entire right thigh, and lit it on fire- yet when I touch it, it’s numb.   I guess it shouldn’t be a surprise that the dysautonomia is going through some “out of whackness”.   A lot of other stuff is out of whack.

I hate these fluctuations and changes in the status quo.   I get used to one way of my “normal” and how to adjust my life accordingly, and then something else happens.  The whole thing gets weird again, and it’s another ‘normal’ to get used to.  I don’t like being undependable.   I’ve always been punctual and if I said I’d be somewhere, I showed up (aside from the dysautonomia and disability stuff that ended my working career as an RN). My dad is used to my 50-50 chance of showing up.  Not everybody knows this about me, and I feel bad when I bail out.

The shower could have made things less stable.   I have horrible heat intolerance, and showers can be a problem.  I generally don’t take a shower and go somewhere in the same day- I need some time for things to get back to ‘normal’ after being exposed to the warm/hot water (I like hot showers… my blood vessels don’t).   I didn’t feel bad after getting out of the shower (a bit winded, which is ‘normal’, but nothing weird).  I allowed time to rest (about an hour), so thought that would be enough.  Guess not. 😦

Anyway, my head still feels a bit loopy when I stand up.   I just got done with a plate of food my dad’s friend sent over- which tasted really good, and had some salty stuff which probably helped.  I just feel bad that I couldn’t be over there with them, as we’ve had fun the other times we got together.

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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

 

 

 

 

Groceries and Dysautonomia

This one went to OH this week :)

This one went to OH this week 🙂

More on him in a while….

Before dysautonomia, I loved grocery shopping.  I’d go to several places for various things, and just truly enjoyed picking out fresh produce, making new things, and trying something different each time I shopped.  Now, I am thankful to get out upright and lucid, and home on my own power.

I’ve learned that it’s much better for me to shop in the middle of the night when others who are huffy about me being rather slow are home with their noisy kids.  It’s also cooler, and while I wear my ice vest year round (in the winter people have the audacity to have their heat on), it’s the only truly  safe time to go (well, as safe as it gets).  If I try to go when it’s 90 degrees outside (and humid, like we have in Northern Illinois, and most of the Midwest during the summer), it would be incredibly foolish.  I can manage a quick ‘refill’ trip for milk, ice, and things like that…. but for my main shopping, it’s a middle of the night affair.  Handicapped parking also helps (and keeps me as independent as possible).  And, I remembered to take my cell phone tonight !

I just went shopping a few hours ago.  This time was rather noteworthy as I’m just now back on the extended release form of propranolol (beta blocker that works for me).  The idiots that decide the formulary for the Medicare part D prescription plan (which I pay for– and get the highest coverage possible) opted to cut out the extended release versions of generic meds. GENERICS !  That stuff that was free (for the past 4 years) if ordered through the preferred mail order pharmacy every 3 months is now $75 per month. Each. In addition to the other stuff I have to pay out of pocket for, now there’s this.   And the premium – I’m paying for the privilege of not having good coverage.  I spent a LOT of time comparing Part D plans…. they all chopped the extended release of many meds (my main seizure med was cut back to the regular release unless I fork over another $75/month for that; that regular release works OK for me)- as well as muscle relaxants, nausea meds, clonazepam (even though it’s used for the dysautonomia, and adjunct to seizures- which is its original classification as an anticonvulsant- it’s a benzodiazepine, which are considered bad news for the usual Medicare population, so it’s not covered…. can’t depend on a doctor to know what his/her patient needs), and the inaccessible forms of insulin that would be huge problems with the ‘donut hole’ where coverage stops until another level of out of pocket costs is met.  So I get the stuff that has been around since T. Rexes roamed the earth (but thanks to Walmart, I have an option that I can get if I fiddle with my budget for other things- can’t NOT have insulin).  Sigh. Grumble. Arggghhhh.  😦    I worked 20+ years to give good care as an RN… and now,  I’m getting bottom of the barrel stuff.  But, at least I’m not eating cat food like some people resort to.  😮

I had to try the regular release propranolol, since $75 is HUGE to add into mandatory expenses.  And, it was a big failure.  Since the chemo for the leukemia back in 2010-2011 (19 months), the autonomic stuff has gotten considerably worse (not uncommon with chemo with people who do NOT have autonomic problems ).  It’s now making my thigh muscles shrink (adios strength that was pretty iffy to start with) along with the blood pressure, heart rate, fatigue, heat intolerance, etc., especially in the evening.  I was already taking an extra 20mg many evenings, when the facial flushing and tachycardia started, as I just watched TV- no trigger or physical stressors.   The regular release stuff had me sleeping up to 20 hours a day- waking up just long enough to take more meds, get something to drink, check my blood sugar, pee, and go back to bed.  That wasn’t going to work, so I had to fork over the $75, and add it to my monthly expenses list.  That means I pay about $700 per month for Medicare premiums, a Medicare supplement, out of pocket drugs (insulin, syringes- to keep me out of the ‘donut hole’ where there is no coverage), over the counter drugs,  Part D premium, dental premium, etc.   My rent isn’t much more.  That’s nuts.  BUT, I’m back on the ‘good’ propranolol (Inderal).  The good news is that I get enough meds to get free delivery for the out-of-pocket-cost meds. ! One less trip to the pharmacy.  That’s always a good thing.  Oh, did I mention that I’m now in perimenopause and have hot flashes?   They are definitely not the same as the normal heat intolerance.  For about 15-30 seconds, I feel like I have a bonfire inside of me.  Not good.

I made it through getting this month’s groceries, at the less convenient, but more options, grocery store.  I do have a friend who will pick up bottled water for me (city water here is like putting a straw in a swimming pool, there’s so much chlorine- and I actually have stalactites growing from my faucet, the water is that hard… I chip them off periodically; and my fridge isn’t big enough for a filter pitcher, and fresh food).  She’s great about dragging water over- but she also has a life, job, husband, and young kid.  My dad will help – but his idea of shopping is getting enough for 3 days.  I can’t function like that.  I have to get what I need, and be done with it.   I’m the one who deals with %95+ of my shopping… and unloading it from the car, putting it away, hating that I hurt for a day or two afterwards.  Fibromyalgia, degenerative disc disease, and arthritis don’t like shopping at all.

I do make use of Amazon and Schwan’s.   I think most folks know about Amazon, and they’ve started Amazon Prime Pantry.  It will require a $100/year fee, but I can get grocery store items in single units, at grocery store prices (decent ones), and as much as can fit in a box that is rated for 45 pounds will cost 6.99 per shipment of the whole box.  Plus there are perks with the regular Prime for non-grocery items. That is a good thing.  And there’s Schwan’s, that has frozen food that is actually good (the ice cream cones are addicting… I have to have very good blood sugars before I can indulge in one of those ) .  Many items are basically heat-and-eat.  Minimal prep (you can get raw proteins, but I rarely do).  The turkey and mashed potatoes, and sliced beef and mashed potatoes are really good…. they have great fruit and veggies, and also decent breads (I don’t use a lot of bread, so the smaller loaves or baguettes are great).  That has helped a lot.  My dad got me a 7 cu ft freezer for Christmas for my ice vest inserts and ‘back-up’ inserts- and it’s been way roomier than I expected, so I have room for a month’s worth of stuff, easily- and some bags of ice. It helps SO much to have stuff dropped off at the front door.  That is a huge help.   The dollar entrees (Michelina is the brand I get- both the lean and regular versions) are pretty good, great on the budget, and three minutes in the microwave equals a decent small meal (which I prefer).

So, now I’m home, showered, and getting ready to go to bed.   I had some nasty calf cramping when I got home, so took some magnesium and potassium along with a pain pill, and am seeing if that’s going to be enough before I go to bed, to not wake up having to step on my foot to get it to flatten, as it’s spasmed so hard into a ‘toe point’.   Also drinking some tonic water with powdered lime (True Lime)…. tastes great- and the quinine might help the cramping.  The fluids won’t hurt either.

It used to be so easy.  I’d lug stuff up to a third floor apartment at times (lived there for about 3 years- and only had 1 1/2 flights of stairs how the building was set up).  Thought nothing of it.   I was younger, and it was many years before the big D was diagnosed.   I never wondered if the ice vest was going to ‘hold’ (it actually draws heat away from me; I’m looking into some inserts that are actual ice packs for really warm situations). I didn’t know cooling vests existed…. or that people  had need of them.  I didn’t  wonder if I’d pass out, or be on the road home and have to pull over until a pre-syncopal episode passed.  Fortunately, I do have enough warning, and know what symptoms lead to what, for me.

I’m thankful I can still do what I do.  This will be the only time I’m away from home except for MD appointments this month.  There are no social outings.  I do want to go to a conservatory here that has amazing plants and flowers (camera op !!), but figure it will be heated- and that will require the ice vest, and rolling walker with the insulated bag for the back-up inserts.  I will have to wait until the fall now, for that to work.

I still think about doing things, and do what I can to stay busy at home (the reborn doll painting is helping…. here’s some examples of a doll I’ve done and sold- they start as blank vinyl…no color.  It’s my biggest activity now, on days when I can tolerate being in the chair.  I end up in pain, but I do love making something that (so far) three people have liked enough to buy 🙂   Totally off topic from shopping, but it helps the bummer days when I can do something creative- even if only 15 minutes at a time.  🙂   OK.  I’m rambling. Time to go to bed (it’s 7:30 a.m.).

Same one that is in the pink shorts and striped shirt.

Same one that is in the pink shorts and striped shirt.

Still  here... will be getting hand rooted hair (each individual hair inserted).

Still here… will be getting hand rooted hair (each individual hair inserted).

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"Caleb" kit 14" long, 2 pounds

“Caleb” kit
14″ long, 2 pounds

'Taite' kit 16 inches and about 3 pounds.

‘Taite’ kit
16 inches and about 3 pounds.  I redid her from one I bought…. I didn’t like how pale she was.

'Avery' sculpt 21 inches, and about 6 pounds

‘Avery’ sculpt
21 inches, and about 6 pounds.   She’s a thrift store rescue I got on eBay- and fixed up.

Scarlett kit by Cindy Musgrove 22 inches long 7 pounds 8 1/2 inches

Scarlett kit by Cindy Musgrove
22 inches long
7 pounds 8 1/2 inches