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.

 

And You People WORK In The Emergency Room?

Early on when I was starting insulin I had some learning curves in the area of low blood sugars (hypoglycemia). I’d been given the diabetic teaching about what to do, and I’d been an RN for 22 years by the time I started on insulin.  Generally, I did well at home getting my blood sugars back up with regular soda or glucose tablets/gel.  One day, nothing was working. I had to call 911 when I hit 37mg/dl, and couldn’t get it to go up no matter what I did.

The paramedics got there, and I was still in the upper 30s.  They gave me more gel, and got an IV going in the ambulance.  I was still conscious and able to talk to them, but I felt BAD. They  radioed ahead that I was coming, and unfortunately I had to go to the closest ER which was notoriously horrible. En route, they gave me an amp of IV dextrose (D50). I had my purse with me that had my backup glucose meter and change for the vending machines. That proved to be incredibly important.

I was given another amp of D50 , and my blood sugar went up to 128mg/dl.  The nurse  (who rarely made eye contact, and just muttered as if I were the most ridiculous thing she’d seen come through the door all day) said she’d called a cab for me; they’d be there in 45 minutes.  I knew that I had to have some source of protein and/or fat to keep my blood sugar from tanking again. The basic information for hypoglycemia says that a snack is needed if the next meal is more than 30  minutes away.  Evidently the EMERGENCY room people didn’t know that basic information.  Straight glucose will spike and then drop. That’s just how it works.  I was sent to the lobby to wait.

Within about 10 minutes, I could feel my blood sugar drop.  I checked it, and it was in the 70s. I got a Coke and some Starburst candy from the vending machines. It wasn’t helping. I got some peanuts to help my blood sugar stay put.  The peanuts didn’t help.  My blood sugar was in the 50s by then.  I went to the triage desk and told them what was going on. I was told I’d already been seen, and a nurse might be able to get out and check on me in a while. Really?  I’d been brought in by ambulance for hypoglycemia, I was bottoming out again, and I was thrown to the whim of some nurse who might get to me?  I was safer in the cab.

I managed to stay in the 50s until the cab got there, and got home where I could work on evening out my blood sugar on my own.  The ER obviously wasn’t going to complete the process with protein/fat sources.  I got some peanut butter, and that helped.  Now when I go anywhere I take glucose tablets or gel and portable peanut butter.  I make sure my blood sugar is in a range that lets me function before I eat the peanut butter, or it will slow down the glucose’s ability to work. The duration of action of D50 is dependent on the degree of hypoglycemia (and the symptoms of low blood sugar are different for everyone at different levels of hypoglycemia).  One person can be unconscious at 40 mg/dl, while someone else can be talking at 30 mg/dl…both are in severe hypoglycemia and need immediate treatment.

I learned a lesson about the emergency personnel’s lack of comprehension on how fully to deal with hypoglycemia.  I have to take care of myself even IN the emergency department at a hospital. At least the shoddy one.  I can’t depend on anyone to help me; I have to be prepared and advocate for myself.