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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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).

)

"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

 

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.

 

Tis The Season…..

….to have all sorts of things churned up.  I don’t really get ”depressed’ over the holiday season, but more a vague sense of being overwhelmed since there are a lot of ‘anniversaries’ around this time.  This year added a new one with the death of my amazing, crazy companion- my miniature schnauzer Mandy, who died on December 27, 2012.

I’m still crying pretty much every day when I think about her, and especially about that last day.  I’m very thankful that that ‘end’ part was pretty fast.  And she was in my arms.  At first, she whimpered enough to alarm me, and from that point until she was actually gone, no more than 15 minutes went by.  After she  peed, and then froze in her tracks, she seemed confused, and not sure what to do, so I just held her and told her how wonderful she’d been.  Her breathing slowly stopped as I held her on my lap.  The ‘new normal’ of not hearing her come running when I mess with the dishwasher or clothes dryer (she had a thing for appliances), of her not leaving the room when I sneeze (or even said the word ‘sneeze’), or escorting me to the door when I got my keys to get the mail.  I didn’t have to say anything; she just knew.  I miss her more than words really can describe.  She was my only companion here in this city, for the past 10 years.  I talk to my dad every day; I saw my dog 24/7- especially since being on disability since April 2004.

Then there is the whole issue of being disabled.  It is somewhat worse in the winter months since everybody has the heat on. I don’t tolerate heat- to the point I shaved my head again (well, I had a professional do it; I wanted to avoid slicing my ears off).  With my ‘normal’ hair (mine is really, really thick), I can’t tolerate the heat it retains. Think dead animal on my scalp.  I also have to see a surgeon this next week about some (more) cysts on my scalp that are painful.  They need to go, so the poor doc has to be able to see my head.  The other issues with disability include being in more pain when it’s cold outside, and my joints just not liking getting in and out of the car.  Sounds wimpy.  Maybe it is.  All I know is that I have to manage it the best I can- so whatever I can get delivered to my door (Schwann’s frozen foods, Walmart for laundry and paper goods, Amazon for miscellaneous stuff, etc), I do.   It’s still very painful just grocery shopping for the dairy/fresh items, but it definitely helps to get stuff delivered when possible.  I’m thankful that those things are available.

Early January is rough for anniversaries.  January 7, 1978 my figure skating coach’s six kids were murdered by her then husband.  I was 14 years old, and it rocked me to the core. I can’t imagine how she has done.  I think about her often, and have always prayed that somehow she’s managed to have a life after that.  January 10, 1987, I was raped and ‘tortured’ (word the newspaper used- don’t want to sound overly dramatic on my own) for 6 hours when the uncle of a baby I took care of regularly lied his way into my apartment… he did things to me I’d never heard of, being very naive…and a virgin.  I’ve never let anybody get close to me since then.  I’d always thought I’d have a family of my own.  That day changed a lot- but I survived.  And I’m thankful for that.

In 1982, the semester that started in late January was a bad one.  I was in the midst of some serious eating disorder stuff, and the depression I only get when I’m starving and purging.  I ended up getting sent to a psych hospital (no eating disorder ‘treatment centers’ back then) for several months.  That was a bad year. I ended up attempting suicide the next semester when I returned to the university.  I was in a coma, and then shipped back to the psych hospital for many more months, once I woke up and was medically cleared.  Things weren’t done in a week to 10 days back then.  I spent about 8 months altogether at Forest Hospital (Des Plaines, IL) in 1982.  They were good to me; I did do better, but the eating disorders were on-again/off-again for decades.

This is the first winter since early 2010 (when I was diagnosed with acute promyelocytic leukemia) that I haven’t been on chemotherapy or waiting for the built up amounts of toxins to leave my body.  I’m still dealing with the weight gain and changes in my blood sugars and insulin doses, as chemo messed that all up.  The diabetes is getting better faster (great endocrinologist with a Joslin Diabetes Center affiliate here in town). I wasn’t on steroids long enough for that to be an issue- it’s ‘just’ the arsenic, tretinoin (ATRA), methotrexate, and M6Mercaptopurine.  They rearranged my chromosomes (literally…. they ‘re-translocated’ the arms of 15 and 17). I guess it will take some time to get my body back to ‘normal’.  I hate the weight.  I’ve had a long history of eating disorders, so can’t just do some crash diet and hope for the best- it could easily trigger a relapse that I just can’t afford.  But I’m going to turn 50 in late 2013; I don’t want to  look like this when I turn 50.  I didn’t want to look like this at all… but it was chemo or die.

And yet, I have a lot to be thankful for. I’m alive- that’s the big one; people with APL sometimes aren’t diagnosed until autopsy (and I know of 2 people just a few months ago who only had one and two days from the time they were told the diagnosis and the time they died; one was 11 years old).  I’ve survived being raped, and other stuff. And, with my health, I am glad to just have a day when I can get the basics done around here.  I’d like to be around people more, and am hoping to get to that Bible Study I’d mentioned in another post; last week (the first meeting of this topic- Ephesians) I wasn’t feeling well- that doesn’t mix well with indoor heat, even with my ice vest.  A childhood friend who I’ve reconnected with on FB came over one Saturday, and helped me with some generalized clutter (result of not being able to unpack after the last time I’d packed to move BACK to Texas), and is coming again- that has been a huge help.  I want to get this place puppy-proofed for the new puppy I hope to get this spring.  That helps, too.  I can’t imagine not having that hope for a new little companion to fill the dog-shaped hole in my heart.

2013 isn’t starting badly… just ‘complicated’ by past and present stuff mixing together.   There is still more good than bad.  I still have a lot of interests, and while I can’t physically do a lot, I do find things to keep me happy and make me laugh, especially online.  Blogging has been a great way to blow off steam, and some days that makes  a big difference.  🙂