People Who Literally Make Me Sick (Dysautonomia)

That may sound ridiculous, but within the walls of dysautonomia,  anything that triggers a fight or flight response is something to be avoided at all costs. Unfortunately, that includes  avoiding people who come across as harshly combative, unapproachable, condescending, promoting hate, and/or having no respect for anybody but themselves and their very narrow circle of (usually) legalistic Christians.  It’s sad.  Several of these people are folks I’d hoped to reconnect with, or at least get to know better.  But when interactions with them actually trigger the heart rate abnormalities and changes, and other dysautonomia symptoms, I can’t have anything to do with them.  😦

I love the Lord with all I am.  I try to look at things with a non-judgemental view, and realize that I’m only responsible for my own actions.  I’m also supposed to be a representative of Jesus, and He Himself said that He is love.  Love doesn’t have a place for hate, rudeness, impatience, unkindness, abruptness, superiority, pride, or anything else that pushes others away.   I feel like I fail that because of not being able to physically tolerate hostile and confrontational people.  I don’t like that my life is better without some people in it, and for that ‘all’ I can do is pray.  Being sick because of them helps nobody. 

I see so much hatred for our President.  That saddens me.  I don’t have to like what he promotes, or believe anything he believes. But promoting and spreading unkind words doesn’t reflect him  nearly as much as it does my own character.  I’m supposed to pray for him as well.  It’s the most powerful thing I have for those who disregard what I believe… and just because I don’t agree with some things doesn’t mean that I disagree with everything.  I don’t claim a political party… I don’t identify with any of them because of the extremism, which always repels more than it engages.

I see so much judgement for those who aren’t Bible-thumping, legalistic Christians (BY Bible-thumping legalistic Christians).  I believe in the Bible very strongly. But I also believe that I don’t know a whole lot more than what I do know.  Because of that, I don’t feel like judgement is my right.  I believe that a Christian is supposed to represent Christ, and not be judge, jury, and executioner for people they don’t know.  I can only judge myself.  Each person will answer to God one day… not me.  I don’t believe in legalism. I believe in a relationship with God that is my own. I can’t live someone else’s relationship with Christ.  I can’t determine who is ‘enough’ of a Christian.  I’ve only walked in my own shoes.

I see so much condescension and disrespect online. Some people I know, but most I do not, and am thankful for that.  I can still pray for them.  I don’t have to like someone to wish them better than what they offer me.  I have had to block some of these people from my life because of the physical reaction to their apparent demeanor in whatever way they’ve communicated with me.  A huge part of communication- the non-verbal- is missing from anything written.  I don’t understand why some people can say things I strongly disagree with, and I don’t become sick, while others leave me needing medication to regulate my heart rate.  Maybe it’s because I’ve heard their tone, general demeanor, and know their personality well enough to know they typically communicate with kindness and respect.  I don’t know.

There are a few people who have been SO personally ‘combative’ in how they interact with me.  One refers to me as ‘human debris’, and has been blocked from my life for several years. I wish him/her well in his/her life, but he/she’s too toxic to have anything to do with. There is another person who comes across as generally condescending in a bizarre way.  He/she also has some indescribable quality that pushes me away. I don’t like that I feel that way, yet I can’t control the way my body responds.  I’m not proud of that. I’ve tried to form some sort of relationship in the past, but there’s a huge wall.   Others who have pushed my body past the limits of being physically stable are those who have been friends of friends on FaceBook… unfortunately, their hateful combativeness with any interaction ended up in deleting the friend (at least on FaceBook; with some, there is still e-mail contact away from the venomous ‘friends’ of theirs.  IF someone had talked to someone I actually knew like that, THEY would be the one cut loose.  I won’t tolerate attacks when something is on a page with my name on it.

There are others who condemn someone very close to me for things that they may have heard about, but got either a biased report, or just enjoy grudges. The people who were there are not nearly as hateful as those who were not.  I will stand behind this person any day of the week.  He/she has always had my back. Has he/she annoyed me at times? Yep.  I’m sure I’ve done my share of being annoying.  (Anybody want to cast the first stone?)  My mom was very hard to live with.  She taught me that appearances and my weight determined my value as a person, and treated me as such. (In her own weird way, I know she loved me, but she was very damaging; I still love and miss her).   But, that is always blamed on my dad- by someone who wasn’t even there.  There are a lot of judgmental eyes on the most outwardly “Christian” side of the family… and that saddens me.  I had no idea how deep the hate ran until I moved back here, hoping to be closer to all of my family.  Evidently, they have no need or desire to move forward and be forgiving- or have anything to do with me, because of their feelings about my dad. (Not all, mind you…. but enough to make things difficult). 😦

Anyway, dysautonomia isn’t just about the physical limitations of standing or sitting too long, being overheated, or having pain push me over the edge. It’s also about being triggered emotionally,  while having all of the cognitive parts of the interaction being very rational, but having my body become ill.  It’s incredibly embarrassing.  I have medication that helps to some degree, but prevention is always better.  And sometimes prevention means avoidance.

I will always wish those people well.  🙂

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.

 

Autonomic Dysfunction and Daily Life

I get a lot of search engine topics relating to how dysautonomia affects daily life.  I’ve decided to write about how it affects me, and why I’m disabled by it.  This in no way is a comprehensive description of autonomic dysfunction- each person has various ways that it impacts them more, as well as different triggers for their symptoms. This is just my situation…

I was diagnosed in 1996 after a tilt-table test (I was strapped to a table, and it was ’tilted’ so my feet weren’t bearing my weight, then monitored to see what my blood pressure did. It dropped to 44/16…. that’s not a typo).  I’d been passing out frequently, and my housemate (also an RN) encouraged me to get checked out. I kept thinking it was ‘just stress’ after returning from eating disorder treatment and trying to get into healthy routines.  Anyway, I had a neurologist who was familiar with dysautonomia, so that was really fortunate. Many doctors I’ve seen (before and since) look at me like I’ve made something up.

The episodes I’d have (when I was still working, and putting more strain on my body) included bright red flushed cheeks, chest blotching, blue tinged lips, and very pale skin everywhere else. Eventually, I’d pass out, and become extremely pale, with very shallow breathing- to the point that one boss thought I was dead.  During the ‘early years’ (in Texas), my employers were more willing to work with me when I had a desk job.  I’d be allowed to lie down, and then resume work when I felt better. When I moved back to Illinois, I was sent out by ambulance when I’d keel over. I’m sure it was to cover their butts, but it annoyed me to no end, and the ER they sent me to was horrible and cruel.  I ended up having to go on disability since I was having so many episodes.

My main triggers are heat and pain, which cause my heart rate to go up and then suddenly drop, and my level of consciousness to go down.  Exercise, or any activity that causes heart rate changes is a no go.  Cleaning my apartment is a SLOW process, and embarrassing that I’m not able to do a better job of it.  Eating hot foods in a ‘normal’ temperature environment causes problems. If I eat very warm food at home (where I keep the temperature around 62-66 degrees year-round), I do fairly well.  But eating away from home isn’t something that is pleasant to think about.

I’m in pain no matter what, which is a problem if I can’t keep it under relatively tolerable control.  I start passing out if it gets worse.  I have fibromyalgia and chronic headaches, and recently have had problems with my left shoulder muscles ‘pulling’ to the point that I can’t really use my left arm for a day or so until it gets back together.  I have to avoid anything that increases pain.  Laundry, emptying the dishwasher, taking out the trash, and things like that have to be paced.  When I do my main monthly shopping, I’m done for the rest of the day. It’s very painful.  I get many things shipped to my home, which helps with some bulkier items.  I live alone, and while my dad would help with as much as he can, I still want to do what I am able to do. I just have to be careful.

Being in environments away from home is extremely risky, and I have to wear an ice vest to avoid being overheated. I’m also waiting for an ice bandana, and have shaved off most of my hair, since my head just gets too hot.  I can’t tolerate doctor’s office waiting rooms, friends’/family’s homes, church, or just about any place that isn’t less than 66 degrees at all times.

Over the last couple of years, it seems as though the dysautonomia is getting worse. I have to be more careful about activities, pain, and temperature.  I don’t know if that has to do with the chemo I had for leukemia, or if it’s just the nature of the disorder. At any rate, I’m having to make more adjustments.  And, I’m having to let people help me more with getting my apartment straightened out.  I hate needing help (but I’m thankful for it).

That’s just an example of what things are like for me…

The New Oncologist

I saw the new oncologist yesterday. I was a bit nervous, but that ended up being wasted energy. The new guy is young, and the cancer center he’s associated with is pleasant. I told him that I’d been quite satisfied with the care the other guy gave regarding the cancer, but I was having a lot of trouble with how he handled my weight. About half of each appointment was spent telling me “you have to lose weight” over and over. I’m not stupid or blind… I know that I’m overweight, in a way that haunts me daily.  I told the last guy that I was working with my regular doctor (whose JOB it is to help with that -NOT his) and also an endocrinologist, since my blood sugars and insulin requirements went nuts during chemo.  There are so many things that were affected by the chemo, as well as weight gain, and now he gets very dismissive when I refer to the weight gain as being from the chemo. I didn’t weigh this much before chemo… during chemo when I complained about the weight gain, HE said it was the chemo- but not now?

The new guy understands about how the autonomic dysfunction (dysautonomia) fits into ‘exercise’. If I get my heart rate up, there’s a good chance I’ll lose consciousness. If I get overheated from exercise, there’s a good chance I’ll pass out as well. If the fibromyalgia or disc/joint pain gets booted up a notch from repetitive muscle/joint movement, the pain will trigger the dysautonomia. I can do some simple stretching, and if I  walk anywhere, I have to have my rolling walker (or a shopping cart), ice vest, cell phone, and blood pressure cuff.  I would love nothing more than to be able to take off and go walking, preferably with my camera, like I used to, and enjoy being outside. Unfortunately, that’s not safe.  Being unconscious is to be incredibly vulnerable to the not so nice people in the world.

The new oncologist said the only thing he really gets after patients about is smoking. I quit 5.5 years ago when I had the pulmonary emboli (multiple blood clots in all three lobes of my right lung, with enough ‘volume’ to push into my heart, causing the symptoms of a heart attack).  I smoked two cigarettes before driving myself to the emergency room … do not try that at home !  That was that. Cold turkey.  I’m lucky to be alive from so many things.  Anyway, the new doc told me that one day he’d lost three patients from smoking-related cancers…he was angry.  He hated what their smoking had done. On the way home, he’d stopped to get something to eat, and saw five guys smoking in the parking lot. He went over to them, and gave each one of those guys one of his business cards!  I like a doctor with cajones.

The new guy understands what a history of eating disorders can do to efforts to lose weight. It can’t be some crazy crash diet, or things can go south fast. I’m not sure I’d survive another relapse, regardless of my weight.  Eating disorders aren’t about weight, and the symptoms can be very severe in someone who looks like they could shed some serious pounds. Been there, done that. I don’t want to go back to that place.

The new guy has overweight sisters, and he’s been overweight himself. He understands that weight loss requires more activity than what I’m able to do right now.  He understands that I’m stuck between a rock and a hard place, figuring out the balance of calorie reduction, activity, and avoiding the other medical stuff I have to consider.  He didn’t make my weight a source of shame and humiliation. He saw more of the ‘whole’ me, and didn’t focus on something that I’m not there to have treated by him.

I signed consents so the new guy can get information about my cancer treatment from the other guy.  The other guy has no clue I’m not coming back, and I’m not sure how to handle that.  I am very thankful that he knew the current treatment for acute myelocytic leukemia, subtype M3.  I’m very thankful I’m still alive (again).  I also believe that the other guy’s reasons for badgering me about my weight are because of health risks- I get that.  But the way he did it, and the way he didn’t let up after I told him I was seeing other doctors for that (and wanting him to back off and stick to what I was seeing him about), or have any clue about how eating disorders fit into my history made seeing him a nightmare.  I dreaded appointments.  I refused to be weighed, and he still kept on for about half of each appointment telling me I needed to lose weight. The one time he backed off is when I started crying- THEN it became all about him, and how I “couldn’t be depressed” (I was frustrated- big difference) since HE had worked so hard to keep me alive when I was “dead sick”.  I had to be OK for him?  I don’t think so.  I’m very thankful to be alive, and I know his knowledge did that. But my obligation to him lies in my payment source. He’s getting paid. I don’t work for him or his need to feel good about how I’m doing.  That might sound cold- but normally I don’t have to make the distinction about who gets the care during an appointment.

I’m not sure about how to handle any contact from the other guy’s office, or him, when they get the requests for my medical information.  I don’t dislike the guy. I think he’s a good doctor. I think there may be some cultural influences in how he’s been talking to me, and also the seeming unawareness of my total situation.  I didn’t start out ‘normal’ when I was diagnosed with leukemia. I was already disabled. I have a history that he never was part of.  I don’t feel he really ‘got’ what I have to balance- and that wasn’t a big problem when I was lying in a hospital bed for six weeks.  The activity, temperature, and pain issues were minimal, so not something he had to deal with.  But I’m still stuck with those whether he ‘gets it’ or not- and I’ve got to take care of myself.  So, when/if I’m contacted by his office or him directly, I don’t know how to give him any more reasons than I already have. I’ve told him over and over again that the weight is something I’m painfully aware of, and am seeking help in dealing with…what more is there to say?  I don’t want to be nasty.

The new guy is someone I can work with.  He understands his role in my cancer follow-up care, and gets it that I am aware of my entire health history, and current medical issues. He understands that I’m an RN, and have that knowledge as well as my own ‘experience’ with living with myself, and managing the disorders I have.  He understands weight issues, and doesn’t use shame or demeaning comments. He’s also kinda cute!  He’s got a sense of humor. He was willing to do a different type of heart function test (a 2-D echocardiogram, instead of a MUGA scan- which isn’t a ‘bad’ test, but lying on a metal table for an hour is painful- if that had been the only option, I would have complied without question).

Even after just one appointment, I felt like more of a part of my own health care team.  The new guy talked about prognosis (very good), what can happen (and what can be done- also not horrible news), and expanded on more than just the here and now.  At one point, that’s all I needed to know- but now, during the longterm follow-up, I do need to know the big picture. The other guy was very good at telling me the ‘now’ stuff, and was spot on when things happened.  Maybe it’s not just my body that grew, but maybe I just outgrew that other doctor and his way of doing things.  Anyway, I’ve begun a new chapter.  I don’t feel judged or belittled at the new place, and that’s a good place to start. 🙂

Diabetic Inconveniences and Insulin Shots

I’m back to measuring everything I eat.  My blood sugars have been completely out of control since starting chemotherapy in April 2010.  The initial chemo didn’t seem to have the impact that the 50 doses of arsenic, and then the year of tretinoin, methotrexate, and M6 mercaptopurine had.  Those really messed things up.  This morning my ‘fasting’ blood sugar was 161 mg/dl. That is beyond unacceptable, and I’ve been off of all chemo for roughly 11 months.

Before the leukemia my blood sugars were those of someone without diabetes- but that doesn’t mean I wasn’t diabetic.  My diabetes was just in control.  Diabetes doesn’t go away; it gets controlled.  For 12 years I didn’t take any medications at all. I went from an A1C of 10.2 at diagnosis (random blood sugar was 389 mg/dl) to an A1C of 4.7 and fasting blood sugars between 65-85mg/dl about %95 of the time; rarely over 100 in the morning.  Even when my A1Cs started to rise and I started on metformin my numbers were still doing OK- but I saw that they were starting to go up, and asked to do something before they got ‘bad’.  I didn’t want to wait until things were in a higher risk range.  Proactive, not reactive.

The metformin ate my stomach. I couldn’t keep taking it, so I was started on Lantus (long-acting) and NovoLog (rapid acting, for right before eating) insulins.  My numbers went back to where they had been almost immediately.  I could see my risk for blindness, amputations, and dialysis going away. That was my whole point for starting insulin.  Keep the risk for complications as close to nil as possible.  I already have an autonomic nervous system disorder, so didn’t want that getting worse.  And it has since my blood sugars have been out of control.  I don’t know for sure if there’s any correlation (it could ‘just’ be progressing), but I don’t want it to keep going in the wrong direction if there’s something I can do to avoid that.  I need to get my blood sugars back under control.

When I hear people talk about their resistance to starting insulin, I do understand that.  I’d given countless insulin shots (and IV doses) to patients over the years I worked as an RN before becoming disabled.  That helped a lot in knowing how and where to give the shots.  But I didn’t realize how little the needles had gotten. They are tiny !  They are so easy to get used to, and the vast majority of the time I don’t feel the injections at all.  Initially, the Lantus burned some but my numbers were so much better I didn’t care.  Now, the shots don’t hurt at all.  There may be a bit of discomfort for a second or two, but it’s no big deal. 🙂 I’ve had worse fingerstick soreness than I have had with insulin shots.

Anyway, while on chemo, it didn’t matter what I ate or how much insulin I took- nothing helped keep my blood sugars ‘OK’.  I wasn’t supposed to ‘diet’ during active cancer treatment.  I was gaining weight, taking more insulin (which stores fat), and had high blood sugars which makes ones appetite weird.  Hyperglycemia causes increased appetite. I didn’t need that.

Now I’m getting used to the ‘new’ normal.  I’m having to recalculate my insulin-to-carbohydrate ratios.  I had been at a steady 1 unit for every 4 gms of carbs pre-leukemia. Now it’s a crapshoot.  SO back to measuring, weighing, and doing before and after meal blood sugar checks.  It’s annoying, but I’m guessing dialysis, getting used to a leg prosthesis, and learning Braille would be much worse.  I’m also having to tweak my Lantus dose, and am doing a trial of twice daily Lantus.  I’ve got to DO something !

I’ve got a nice digital food scale (measures in grams and ounces), multiple sets of measuring cups, and various measuring spoons. It’s a pain in the butt to have to measure out everything that goes into my mouth.  But it’s necessary.  I’ve got to get things back in check.  Surprisingly, my A1C was under 7 during my annual physical and diabetic lab work in February of this year.  I want it under 6- where non-diabetics live.  The closer to normal I can keep my blood sugars, the greater chance I have at not developing the big complications.  So it’s all a pain in the butt for a very good reason. 

But You Look OK….

Dysautonomia doesn’t ‘look sick’ when the symptoms aren’t present.  It only looks sick when the symptoms kick in, and that can happen just about any time for me.  My specific triggers are heat, pain, and fatigue.  I can’t leave home without an ice vest (about 5 pounds of ‘synthetic ice’ in four inserts that fit into a vest).  If I get overheated, even with the vest, the chances of my blood pressure and/or heart rate going bonkers is pretty good.

From the outside, it doesn’t look like anything is wrong with me.  But there isn’t any part of my life that isn’t affected.  My activity tolerance, even for basic household chores, is lousy.  I get things done, but it takes a  lot longer than it used to.  No matter where I go, I have to have a contingency plan in the event I start to feel like I’m going to lose consciousness.  I do have some warning, but if I’m away from home, the only thing I want to do is GET home.  I don’t want people around me when symptoms kick in.

Dysautonomia is a disorder of the autonomic nervous system.  It’s the stuff that is either reflex or not within my ability to  consciously  control.  Something goes haywire when I am up for too long, get overheated, or my chronic pain isn’t adequately controlled, and I simply pass out.  My body doesn’t compensate for the low blood pressure properly.  Or, I get a rapid heart rate that sometimes includes abnormal heartbeats and rhythms.

It’s frustrating when people don’t understand that I am not avoiding contact  just for the heck of it.   I would love to be able to do more.  I know my limitations.  I know when I can or can’t do something.   Every single day my ability to do things is affected.  Going anywhere is risky because of the temperature.  It may feel fine to others, but for my body it’s too warm.  Even in the winter I have to wear the ice vest.  When I do my once a month trip to the grocery store I have to wear the ice vest and remove my coat immediately when I get inside.  Usually I go in the middle of the night because there are fewer impatient people, and it’s cooler.

Making a sandwich or emptying the dishwasher is really painful.  I still have to do those things but I also have to rest afterwards.  Laundry is painful.  But it gets done.   I’m not feeling sorry for myself- it’s just the simple truth.  So I am responsible for avoiding things that make it worse, or could trigger completely losing consciousness.  That’s my ‘job’ since I can’t work.  I have to make my life as decent as possible without taking unnecessary risks.  Risks to me are simple things to most people.

I know I look fine.  But please don’t judge me for that when I say I can’t do something.  I’m thankful that I’m not any worse, though the dysautonomia seems to be progressing.  I still have a lot to be thankful for; I still live by myself, and get things done, even if slowly.  For those who haven’t seen what happens, please don’t assume I’m just being weird.

Outward appearance seldom tells the complete story about anybody.

 

Ending Up On Disability….Part Two

When I got back to my hometown, I was thrilled when I got the job that I actually went to nursing school to do.  I was going to be a full-time pediatric nurse.  I had taken care of kids in various other settings, but never on a pediatric floor.  I’d also be floating to the Neonatal Intensive Care Unit (NICU) and Pediatric Intensive Care Unit (PICU) after orientation.  I couldn’t wait.  The autonomic episodes had been much less frequent in the months before I moved back to the Midwest, and I was very encouraged.  I started that pediatric job absolutely recharged.

I really enjoyed the experience on peds.  I wasn’t prepared for the abuse cases, or some of the really serious limb and congenital deformities, but I was eager to learn.  I wasn’t prepared for the temperature of the hallways on the floor.  The other nurses kept the temp at about 76-78 degrees.  In patient rooms, it was always expected that temperatures varied according to the patient’s comfort.  Hallways were generally kept cooler.  Not with that bunch.  I asked if I could keep the report room cooler so I could  tolerate it, and the vast majority of the nurses agreed.  The night shift was really a nice group of nurses, until….

…one  young, catty nurse (that needed 3-4 tries to pass boards) refused to allow me any space that was tolerable.  I’d already been having more episodes, even at work, and it was a major issue.  I’d been sent to the ER several times during my shifts, which was a burden on everyone I worked with, since they’d have to pick up my patients mid-shift.   I hated that, and was trying to stay well enough to work by having one corner of the floor where I could have the temperatures cooler.  Had I been as vindictive as that one nurse, I could have thrown the Americans With Disabilities Act in her face, and gotten some space that I could tolerate and keep functioning- that was a reasonable request.  There were issues with hours being cut in the summer because of low census, and that became a deal breaker.  I was also becoming terrified of dropping a baby if I began to feel shaky.  I would do all care by keeping the baby in the crib- I’d put my arms around them, but their body never left the mattress.  I never told anybody.   I needed to go.

I got a job at a nursing home, where most (if not all) of the direct care was done by the CNAs. The chances of me dropping anybody were next to nil.   I would help transfer people or reposition them, but I was never primarily responsible for the direct care.  The ambient temperature in the facility was warm, but better.  I went a few weeks without any episodes. And then it happened, towards the end of a shift. My blood pressure sky-rocketed, and then I started passing out.  They were already getting ready to put me in a desk job doing the patient assessments that were similar to the ones I’d done in Texas at a couple of facilities.

I started the desk job, and could keep my office cool enough with a fan to be doable. Then the seasons changed, and the heat was on in the building.  I started having trouble again, as well as considerable pain.  Both of my primary triggers were kicking in, and I started having a lot of the episodes.  Eventually, my boss had to start sending me to the hospital via EMS for liability issues (which I hated). There was also some weird rift between the office staff and the administrative nursing staff (that I was part of), and ‘hiding me’ became a problem.   In  the last six weeks I worked, I was sent to the ER via ambulance about 12 times or so.  I don’t remember any of the rides.  I do remember waking up in the ER often enough that it became common enough not to scare me.  One time I had pyelonephritis and sepsis, which triggered me passing out in my boss’s office- so that’s not technically the dysautonomia.  But the rest of the trips were because I was cyanotic, blotchy, and/or cold and pale- and at best, semi-conscious.  There were times my boss thought I was dead.   My coworkers would either see me starting to fade, hear me fall, or find me- out cold.  It wasn’t going to work.  I had become unemployable.

The seizures were also an issue, as they were more likely to happen when I was in the earliest stages of sleep (regardless of cause), as was discovered on a 5-day video EEG done later on.  It made some things make more sense.  Sleep seizures sound relatively harmless, and since mine are located in my temporal lobe, they aren’t as taxing on the brain- but, I wake up groggy and with headaches that are pretty intense. I’m shot for the day after those.  I also have chewed up inner cheeks and/or the side of my tongue with the seizures.  My coworkers did see seizures, and described them to me; I don’t remember much of what they said.  There was some left-sided shaking, but not the whole body jerking that people see on TV.

Finally, the day came when my boss said I needed to go on disability. April 2004.  She was very nice about it all, though I later became frustrated by corporate ‘legal requirements’ about me returning to work (I think they tried to make it impossible for me to return, and hoped I wouldn’t try). I met the requirements, and tried to return about seven months after leaving.  I didn’t last long- maybe 6-8 weeks.  I couldn’t do it.  I honestly tried during that 6-8 weeks, but I was constantly in agonizing muscle pain, and the temperatures weren’t good. I’d make it through my partial shifts (but go home and fall apart), but then I started full 8-hour shifts. The pain and heat triggers were too intense, and I was off for good.  I was devastated. The last day I was there was actually to pick up my paycheck, when I started having one of the episodes.  I refused to go to the ER even after EMS was called.  My blood pressure was very high (as it sometimes did with the dysautonomia, before dropping). Police drove me home since they wouldn’t let me stay in my own car (it was about 15 degrees below zero wind chill). January 2005- the last time I ever worked as a RN.

My life as I knew it was over.  I felt completely useless, and my coworkers acted like I never existed (as was the M.O. of how we had been instructed to treat former employees at that facility; it was weird). When I was initially off,  I had been told that some of the floor staff were asking about me, and to not talk to them on the phone if they called me at home- at my own home, on my own phone, on my own time.   I saw one former coworker in the grocery store one day, and as soon as she saw that I saw her, she took off, without even acknowledging I was there.  I know she saw me.  All I did was get too sick to work.  Yet I was treated as if I were some enemy of the facility.  It was a nice place, and I liked my job.  But that was weird. Or maybe just ‘Yankees’… I’d been used to people in Texas, where that wasn’t ‘normal’ by a long shot.  At one nursing home, one of the nurses had to take an extended leave because of cancer, and the entire facility collected food for her family for Christmas, and toys for her kids… that’s just how it was done there.

Later I was told I screwed things up on the assessments- I had been doing the same essential  job  I’d done where the corporate consultant called me herself to ask me not to resign.  It didn’t make sense.  All I could think of was the times I’d returned to work at 3:00 a.m. to complete assessments on time, and maybe being so exhausted I made mistakes.  But screwing things up wasn’t something I was known for.  That hurt even worse.   I could deal with the ice cold shoulders- but negative comments about the quality of my work that made no sense to me was really hard.  Integrity is really important to me.  Having that trashed was extremely difficult- and I was never shown proof.  I don’t know how much was actually true, and how much was manufactured, since being told not to talk to anybody. I was still in the early stages of getting on disability from insurance from this employer…I felt  intimidated.  It may have been what was told to the other staff to explain why I was gone… I’ll never know. And I wouldn’t trust anything they told me now anyway.  I wonder why the two other people I saw ‘removed’ actually left.

Not being employable was (and still is) extremely hard.  My identity as a nurse is essentially gone. I have had more physical problems since going on disability.  I had a knee replaced, tore the other ACL and meniscus but couldn’t get them fixed because of other medical problems, had  multiple pulmonary emboli (acute, subacute, and chronic in all lobes of my right lung), heart catheterization, 4 years of Coumadin,  leukemia, worsening diabetes with multiple insulin shots/day, major issues with medication interactions, horrendous things happened repeatedly at one ER , etc. My pain level has gotten worse, and the headaches now are bad enough that narcotics are ineffective after an hour or so- so I live with them.

I have to wear a vest with 4 ice inserts year round if I go out to the store, or to someone’s home for as little as 15 minutes.  I can’t walk without some sort of support except for the short distances in my apartment.  If I don’t have something in my monthly budget ahead of time, it isn’t possible.  There were no friends to have dinner with, and no place I can go without my ice vest (and I’m thankful I’ve got that, or I wouldn’t be able to spend any time at all with family at Christmas; I can’t eat hot food in a hot room even with the ice vest- but being able to visit with them after dinner is a blessing). I do have a childhood friend with whom I’ve reconnected, and we’re hoping to get together soon. With the ice vest.

What can YOU learn from this?

Always get short term  and longterm disability insurance whenever you can.  If you don’t have it, and end up needing it,  you can plan on having to move in with whatever relative you have, and being poor for the rest of your life, but not poor enough to qualify for any extra assistance from anyone, anywhere. Be very thankful if it just becomes wasted money- but if you need it, it’s the difference between about %40 more income. Think of it as rent being covered.  You may never get sick….but you never know when a drunk driver is out there.

-Don’t forget people who get sick and have to leave.  Their world has been completely altered forever.  Even a five minute phone call means a lot.  Just being remembered at all is huge.

-Keep documents of health related issues.  If nothing else, it saves time if you have to see a new doctor.  If you need information for any sort of disability, you’ll have it (even if  just dates and providers)  to fill out the Social Security, and LTD forms.  I had over 1000 pages of hospital and physician documentation, and was passed on the first application.  I’d have 3-4 times that amount now.

Don’t assume you will never become disabled.  I certainly never expected it when I started out as a nurse, and even when I was initially diagnosed with epilepsy, and later the dysautonomia. I thought I could fight through whatever happened…eventually a body gives out.  Nobody knows when, who, or why.  Be prepared as much as you can be.