The Emotionally Damaged Parent

Watching TV news, and working as an RN for years in the mental health and recovery fields, it’s so apparent why familial abuse is cyclical.  Nobody knows any better. Nobody ‘grew up’ in a normal manner and completed developmental stages. They all end up stuck, confused, and in pain.  They then traumatize any offspring they have-  sometimes very unintentionally, but leaving behind another generation of damaged adults and more confused kids.  While they do the best they can, they cause mass devastation. Others just become cruel.  I’ve seen some horrendous families.

These parents can’t see things through their child’s eyes since they never completed developmental stages themselves.  When a child enters the ‘terrible twos’, a very necessary developmental stage, the stuck parent can’t cope because they’re still functioning on an emotionally childish level themselves. So the actual toddler gets the brunt of it, and never learns how to get its own needs met, since the parent needs the kid to meet unmet needs of their own.  The child becomes the nurturer, in an incredibly dysfunctional manner.  The parent can’t identify their child’s needs since their own needs weren’t met.  And they don’t know any better.  Or that there’s even a problem  (they have no other frame of reference). And they certainly can’t fix it on their own.

The wounds continue as the children learn to live without a functional parent.  Life becomes a matter of surviving and just getting through it.  Any sources of perceived love and care (no matter how horrendous or dysfunctional) become like beacons for these kids as they grow up.  And the cycle continues, since the child ends up being used by those with an agenda, who seek them out.  The lucky ones actually have functional adults step in and help them learn what is and isn’t healthy.  Others become statistics, or abusers.  And ‘parents’.

The more dysfunction and desperation I see on the news, the more I wonder how and when people became so damaged.  I don’t think the majority of people strategically set out to screw up their kids, but they manage to do a good job of it none the less.  And I wonder who hurt them.  And so on.  I can trace some deficits (perceived or real) that  go back to the flu epidemic in 1917 or 1918.  Orphans are abandoned souls, no matter how loving their assigned parents are. They then are clueless about bonding and attachment, since being vulnerable has only meant pain and loss in their child’s view of life.  Their kids then have to learn to function with the only tools THEY have, and so on.  Nobody meant to cause pain. Nobody meant to leave  a legacy of abandonment and dysfunction…but it’s still there and very real for those who were left with the aftermath.

It’s easier for me to forgive pain caused by developmental neglect and  loss than abusive behavior with no cause, or outright cruelty.

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Inexperienced/New Nurses- Give Them A Break !

That old ‘nurses eat their young’ comment from less experienced nurses gets VERY old, but there is some truth to it, depending on where someone works.  I worked in Illinois and Texas, and I would hate to have been a new nurse in Illinois hospitals; being an experienced nurse in Illinois when I returned 17 years after leaving wasn’t so bad. Being a nurse in Texas was generally positive, as they’ve had REAL nursing shortages for a long time- not just a shortage of adequately educated new graduates– for a long time.  When I moved to Texas  in 1985, employers were very thankful to have a nurse- even a new grad- because new grads had to have the basic skills done before graduating nursing school (and even being eligible to take boards)…. there were no ‘internships’ to finish schooling.  Now, hospitals have to finish educating the new nurses, and they don’t like it. They have been put in the position of paying for the ‘internships’, or running out of new nurses. It’s expensive, and finding older nurses who want to ‘babysit’ isn’t always easy; that wasn’t part of nursing school- that is part of being a nursing instructor (who may be some relative newbie who mainlined their Master’s degree to avoid working on the floor- so she has no floor experience)  I don’t blame the hospitals for resenting what they’ve been left with, but it isn’t the newbie’s fault either.  Orientation in any new job used to be two weeks maximum… if the new employee hadn’t figured out enough to be cut loose on her own in that job (with the expectation she’d have questions along the way), she was let go.  End of story.

When I graduated in May of 1985, we had to finish a checklist of skills in each class. If we didn’t pass those skills checklists in each class, we repeated the class. Period. End of discussion.  We may not be experts by a longshot, but we could get the job done without damaging someone.  Like with anything, there are always many things to learn and improve on, but we had enough learned to be safe.  We weren’t told that ‘all hospitals have IV teams’ (which isn’t true- and if you work in long term care, you are ‘IT’… there is no IV team anywhere).  You don’t know where you’re going to end up working to pay the rent and pay back those freakish student loans.  You go where the money is- and that very well may not be what you dreamed of doing.  If you have tens of thousands of dollars in student loans (instead of going for an ADN at a relatively inexpensive community college,  and getting an employer to help with further education), you work where there is work- or you never leave your parents’ basement.

I went to nursing school to work peditrics. That didn’t happen for 17 years, and I ended up finding it extremely depressing with the abuse cases, and permanently damaged preemies that got older, but never got any more  developmentally advanced than  the day they left the NICU 15 years earlier. Very few generally healthy kids ever showed up; most were absolute train wrecks. But I was glad for the experience. By the time I got a job on a pediatric floor, I’d taken care of kids on other floors that were in hospitals that didn’t have specialized peds floors.  So I’d taken care of kids; that helped me get the pediatric job- as well as having had 17 years of honing various skills that are good for any job; I just needed to work on the specific things to pediatrics- which was challenging enough to keep me interested.  I’m glad I did it, and glad I got out.  All experience is experience in something that will be useful in any other nursing job. 

So what makes an experienced nurse?  Having actively worked for over 20 years in healthcare as an RN (and a few as a student nurse/CNA), and since being disabled, having watched nurses for 8 years as they took care of me or a family member or close friend, I’d have to say that a nurse is no longer ‘new’ after about 3-5 years- but  it depends on the nurse. It takes a lot of time to integrate the information in nursing school, which generally focuses on one body system at a time, to be able to take care of a 19 year old pregnant diabetic drug addict who is in the middle of a sickle cell crisis, and is a post-op appy.  Or an actively dying AIDS patient with pneumonia, a perforated bowel, and his Port-a-Cath has clogged past the point of being ‘clot busted’, that is intense pain and has no current orders for any pain med besides an IV delivery route.  Or an elderly nursing home patient  on dialysis, a tube feeding, a trach, and has diarrhea (first thought in that situation is fecal impaction) and a UTI.  It takes time to see the WHOLE patient- not just the parts assigned to you !  You’re assigned to all of them as a nurse- new or not !

New nurses are supposed to have questions (including nurses who may have experience, but are new to a  different specialty).  The quiet new nurse is the most dangerous and the most disliked on any unit/floor. There’s always the question that she may be too dim to know what she doesn’t know, OR that she is too meek to ask. Both are recipes for wrongful death, and no other nurse is going to want to be associated with that type of nurse for anything.  They ARE the plague. Those who talk as if they’ve been nurses for years aren’t far behind. If you’re new, ASK.  If you haven’t done something very many times (like at least a dozen), it’s GOOD to just run something past someone with more experience, until the skill is something that you do without even realizing that you’re doing it automatically.  You’re not stupid for asking; you’re stupid for thinking you have it all figured out when the ink on your license is still wet.

That leaves something for the older nurses to remember. We’ve all been new.  For those of us who graduated a few decades ago, we didn’t have the horrible situation of being turned loose after an incomplete education.  We didn’t pass boards by chance of getting 75 questions that we happened to know the answers to (we had 1000 questions over 2 days in 4 groupings of 250 questions; if we got less than 600 right, we weren’t nurses; we got two tries to get it right, and after that it was back to school). We’ve been able to adjust to things as they came along (and that’s something for the newbies to remember- the older nurses know how to do things in many different ways, including the old, new, and in between). The newbies have been cut loose having to deal with medical technology AND the alive and breathing patient.  That can be overwhelming.  Older nurses have to be role models and mentors, not antagonists. Or, expect those calls on your day off when someone calls in because you’ve run all of the newbies off.  But, if you know you don’t want to be a mentor or preceptor to a newbie, tell your manager !  Don’t get paired up with someone you have no interest in helping learn the ropes 🙂

For those nurses who went into nursing for the relative job security and decent pay, leave.  Nursing needs people who are doing the job for the patients.  Yes, everyone goes to college for the purpose of getting a job.  But those who are simply in nursing for a paycheck aren’t what the profession needs. If you can’t get into someone else’s shoes and learn to appreciate what they are going through (also known as empathy) you’re not much use.  Go be an accountant or electrician. The hours are better anyway 🙂

For those nurses who will do anything to get a nursing job, consider this:  I got an ADN. Nothing else. And I worked staff, charge, supervisory, and department head jobs.  I never needed a BS.  I got to teach CNAs (which was fun!).  I had desk jobs doing assessments and care plans. But I was also willing to go where the jobs were– meaning smaller, more rural communities.  I ended up in the Texas Hill Country, and that was wonderful. I loved my different jobs- and they were glad to have an RN who was glad to have the job.  XTXRN was born in those hills…. those who have been on a specific nursing social site will know what that means 🙂

So, old school nurses, remember what it’s like to be new… newbies, remember that those who have been doing this longer than you may have been alive know a lot more than you do. Learn from them.  Lose the superiority thing.  Explain what it is you are having trouble with, and it’s much easier to help you 🙂  Never be afraid to ‘look stupid’.  The nurses that are truly stupid don’t ask questions.  They may know a fair amount, but by not asking questions they limit their potential.  And nursing as a whole.

Dysautonomia and Disability- Social Security and Medicare

According to some, I’m nothing but a leech on society.  Here in the US, needing help is seen as being nothing more than a parasitic slug that simply doesn’t want to work. There is no distinction made between those who are lazy (a minority of the people on government assistance), and those who have worked for many years, only to become physically ill and unable to work, by those who ridicule the ‘entitlement’ help out there.  It’s so disheartening to be lumped in the category of those who want handouts. I’d give anything to have my health back.

I spent 20 years working as an RN- in staff, charge, supervisory, and department head positions. Who knows, I may have put an IV in you, or wiped your butt.  I may have been the nurse who called your elderly mom’s doctor 8 times in two days to get an order for her to be seen by a specialist.  I may have spent an hour getting your preemie to drink two ounces of formula. You don’t know. To you, I’m worthless now, and just want ‘entitlements’.  You see me as someone who just wants free stuff… such a cruel and uneducated view.

Well, let me tell you about the ‘free’ stuff. I paid into Medicare during the 25 years I worked (I worked prior to and during nursing school as well as my years as a nurse). I paid into Social Security during those 25 years as well.  I’ve never been on food stamps.  To get Medicaid assistance, I had to meet requirements I didn’t qualify for until a horrendous couple of years of life-threatening blood clots in my lung, and then an aggressive form of leukemia. Those aren’t even the reasons I’m on disability (autonomic dysfunction/dysautonomia and seizures are the culprits there).

To get coverage that meets my medical condition needs, I pay around $500 per MONTH in premiums for Medicare Part B, Medicare Part D, a Medicare supplement that covers what Medicare doesn’t, and prescription co-pays for medications that don’t come in a generic form (insulin is the big one).  That’s not free.  That’s $6000/year (Obamacare or not- it’s BEEN this way for years).   So tell me how I’m living some life on the dole, and just sucking the government dry…

I’m not able to walk more than 100-150 feet without pain that is intense enough to change my plans.  Even with my walker.  To make a sandwich means I’ll hurt. Doing a load of laundry cause intense back and leg spasms.  Bringing my groceries in from the car means a LOT more pain.  I live alone. There is no help for the mundane- I simply have to get it done…or not.  I do the best I can.  And then I see so many hateful comments that don’t differentiate between those who can’t and those who won’t.  And the difference is huge.

To qualify for Social Security Disability isn’t an easy thing.  I had more than 1000 (one thousand- not a typo) pages of medical documentation, so I was approved on the first application. Some people have to appeal several times before they get approved.  People with obvious disorders have more stress by not getting the help that they need.  Do I think that there are people who abuse ‘the system’ ?  Yep.  But I don’t think they are the majority, by a long shot. People become homeless waiting for help- people don’t fake that.  And, I don’t think I’m the only one who feels hated for needing help.  I have a disability policy from the last place I worked- before being sent out by ambulance from work roughly a dozen times during the last 2 months I worked there.  That  private policy allows me to have %66 of my last monthly salary for my total monthly income (with Social Security paying the first part, and the private disability policy paying the balance of the %66). I lost a lot of money by being disabled.  If I didn’t have that policy, I would be living in some pit, in some trashy neighborhood, hoping everyday that nobody shot my windows out.  Do I deserve that simply because my body fell apart?

I never know when my body is going to poop out on me for something as mundane as the thermostat being warmer than I can tolerate. (One former co-worker RN refused to allow me to have a small space on the pediatric floor where I worked to set the thermostat to a temperature I could handle, so I could do my charting- and she was the boss’s pet, so I was screwed… the area I wanted to cool off would not have affected her or the patients in the least….she was simply a cold-hearted bitch with no consideration for what was going on with me; I could have done a big ADA scene, but it really wasn’t worth it for working with Goldilocks… she wasn’t worth it. I’d worked enough different types of nursing to get another job, and keep trying to make it work ).  I don’t even know how stable my internal thermostat will be when I’m at home.  Not working.  I tried to make it work at another job, with fans in my office, and trying to cool off when I felt I was getting overheated, but it simply didn’t work.

The many times I was sent to the ER before, and the first few years after, ending up on disability were a nightmare. I was labelled a ‘frequent flyer’- which is about the most hated label someone can get at an ER.  I was treated like some psycho-drug seeker.  I never asked for anything.  Most of the time, I never remembered getting there via the ambulances.  I wasn’t the one who ‘sent me’ there. My employer had, and I had no say in the matter. I understand they were covering their butts when I was unconscious, because something horrible could be happening- even though most of the time, cooler air and being horizontal were the only things to help.  It sucked.  The ER nurses, and a couple of the doctors, were nasty.  Just plain cruel sometimes.  One of the nice doctors even let my regular doctor know that he’d seen some inappropriate nastiness… but nobody did anything.  I had to just go to a different ER when I knew something was wrong, so I wasn’t blown off.

Real people with real disorders need Social Security (Disability) and Medicare, even though they haven’t hit retirement age.  It’s not a choice… it’s survival.  Without those ‘entitlements’ (that I paid into from the time I was able to work at 16 years old until literally falling over at work repeatedly at age 40), I’d be homeless or dead.  I hate needing these things, since the stereotype by people who don’t know people on disability is that of some bum, mooching off of the government.  I’d love to be working as a nurse again.  I loved being a working RN.  I still keep my license current, even though I’ll never be well enough to use it… but I still want to BE a nurse- not  ‘been’ a nurse.  I worked for that license.  And I loved what I did.

I may be on government assistance, but it’s not free.  It changed my income drastically, and allows me nothing ‘extra’.  I’m doing the best I can, and would encourage everyone to get disability insurance where they work. You never know when something will happen to you.  Nobody plans on becoming disabled.

Do I Really Belong Anywhere?

When I look at the vast number of ways people can be divisive, I feel even more like I don’t belong anywhere.  Whether it’s political, religious, or anything else, I don’t tow the party line anywhere.  I don’t believe in any extremes.  I hate labels.  I sometimes don’t know exactly where I stand on things, but if it in some way makes people more distant from each other, there’s a really good chance I don’t want any part of it.  The only thing I’m definite about is my relationship with God- not how others view their own Christianity, but MY relationship with God/Jesus/The Holy Spirit… and those don’t need to be flashy and highly viewable.  I shouldn’t have to advertise it; and I shouldn’t have to hide it.

Because of my ‘religious’ beliefs (I detest the word ‘religious’- it screams of empty rituals and mindless devotion), I don’t like when people are labelled and judged by humans. I don’t believe we have the right to do that to other people. We’re human, a.k.a. fallible, and need to focus on our own shortcomings instead of being hateful  (Yes !  Christians are some of the most hateful people on the planet for those Christians who haven’t figured that out!). Check out Matthew 5 & 6… great chapters in the Bible.  Do I have specific feelings about specific issues? Yep.  But I don’t think many of those things need to be put up for public approval. Some things are between the person and God.  And, most really aren’t worth making illegal to clog up an already stagnant legal system even more. We need to keep the violent people contained…not someone who had an abortion after being raped, or something else that is seen as a violation against life and God.  When Christians use God to back up their own beliefs, it makes me sad. God can speak for Himself- and He has.  He told US to love each other, and to leave the judgement to Him.  

That doesn’t mean I don’t have my own beliefs and views on things. I do. But I just can’t stand the fighting about issues that are really very personal.   How does any Christian think that people who don’t have a relationship with God are ever going to see the benefit of knowing Him if Christians spend so much time belittling those they disagree with?  Is it not possible to have a personal (and deeply valued) belief system and relationship with God, and still reach out with an open hand to someone who thinks and believes differently?  Does being a Christian mean avoiding everybody who doesn’t show up at church 3-5 times a week?  That old ‘go ye into ALL the world….’ ?  I guess that was only for the olden days, eh? Seems that folks only want to be with like-minded folks, which is fine, until it becomes exclusive.

When I hear the far right talk about the ‘free’ entitlements such as Medicare, it makes me so sad.  Because of things outside of my control, I’m disabled, and on Medicare (and have been since I was 44 years old).  I worked as an RN for 20 years, and paid into Medicare and Social Security.  That ‘free’ Medicare costs me about $500+ per MONTH, to pay for premiums/co-pays so that I do have full coverage and the medications/supplies I need. Medicare is very deficient in many areas.  Medicaid is extremely difficult to qualify for; it’s not something that a person just goes and gets in line to receive.  It’s portrayed as the medical care that anybody can get if they don’t have something else, and that is absolutely not true.  For me to qualify for Medicaid help (during the times when I had a different Medicare supplement policy that left me with thousands of dollars in copays), I had a $2200/MONTH ‘deductible’ (called a spend-down).  That didn’t even leave enough for rent, let alone premiums, food, utilities, medications, etc.  I agree that there have to be requirements to be met in order to qualify…but I also know that those who find Medicare and Medicaid to be such ‘freebies’ just don’t understand.  It costs me $6000/year for the privilege of having ‘free’ medical care.  I don’t belong on that part of the  ‘right’.

When I hear the far left speak of ‘conservatives’ as people who generally hate most of the planet, it saddens me.  Many of my beliefs are conservative (stiflingly so to some), and yet I have met so many people from so many backgrounds and belief systems that I want to be inclusive.  Excluding people (who are not dangerous to themselves or others) from any part of society damages the whole of society.  When I look at the general decline of behavior as a whole since the ‘Leave It To Beaver’ days, I see that a dose of conservativeness isn’t a bad thing !  There is room for so much more than the black and white thinking that predominates every ‘side’ of any issue.  I don’t belong with the ‘left’ either.

I’ve been rethinking a lot of my personal views on a lot of things.  For the most part, that means that the people I grew up with probably see me as being wayward at best, and a heretic at worst.  I don’t fit anywhere.  I just don’t think that I know enough as a human to judge many of the ‘hot topic’ issues.  And I’m not afraid to admit it.  Yes, I believe the Bible.  But I also know that there are things that are known now that weren’t known in Biblical times, and changes in social and scientific ‘norms’ that cause me to step back from judgement and wait until the day I can ask God for myself, instead of categorizing  groups of humans, or specific activities- and in the meantime, try not to cause more divisiveness.  In the end, the nitpicking isn’t going to help anyone.  What is in my heart is what matters- and I’m OK knowing that God sees that better than anyone.

I’ve discussed my views on homosexuality with people who know me from the church I grew up in, and  with those who have no specific religious views, and it’s not surprising which group verbally beat me up for my beliefs.   I believe that being gay is biological. There. I said it. I don’t think it’s a choice. Or a ‘lifestyle’, like being a jet-setter or redneck, or something.  I’ve also talked before about the kids I saw when I was working as a pediatric RN, who had ‘ambiguous genitalia’ (that is a diagnosis based on biology)… those kids literally had either both male and female sex organs (internal and/or external) , or the only way to determine their gender was by sending their blood for genetic mapping.  Gender is determined by the X-Y chromosomes from the sperm, and are affected by the mom’s hormones while she is pregnant. If the mom is carrying a genetically determined baby girl, and for some reason has some surge of testosterone during the pregnancy at just the right time, why is it so hard to understand that the baby is affected?  If the baby can end up with externally visible gender ambiguity , why is it so hard to think that there can be biological changes in the brain that determine sexual orientation?  Regardless, I don’t know enough to judge someone. I’ve had many gay and lesbian co-workers, one transgender co-worker who was in the process of reassignment, and assorted friends and relatives who are gay or lesbian.  God loves them.  I love them.  SO, I don’t fit in anywhere.

Criticizing the President… Oy.  I shared some very anti-Obama things on FaceBook during the campaign, and I regret it.  I don’t trust Chicago politicians. Period. But he was/is our POTUS.  The office deserves respect, and once again, judgement isn’t my role. The entire political atmosphere scares me, but instead of being so negative, I need to wake up and do more praying than criticizing.  It’s never just about the man in the Office… no one person is responsible for the mess (or success) of a country. It’s not fair to bash our country’s leader, especially in the worldwide social media society we live in.  I also cringe when such stupid things are criticized, such as the sleeve length of Mrs. Obama’s dresses…. seriously?  Does it matter?  When every last thing is torn apart (instead of trying to see the positive), what good comes of it?  Constant criticism just becomes background noise, and nothing said by those who continue to tear things down is heard.  From then on, their credibility is going to be questioned by me (I tend to verify most of what I read online anyway 😀 ).   I don’t trust anyone in Washington, D.C., and the media is always suspect… I want the source, and their interest in the topic.

Another hot topic issue that I do have some personal opinions about is abortion. Specifically, post-rape abortion was  in the press this last year, and some really ignorant politicians made some incredibly stupid remarks. The body doesn’t ‘shut down’ and prevent pregnancy after ‘legitimate’  rape (is there an ilegimate rape?).  If a woman is ovulating when she is raped, she can very easily become pregnant.  I’ve been there.  I had an agonizing decision to make, and I found out very painfully why women consider abortion. I get it.  I couldn’t do it.  And I couldn’t talk to anybody about it.  I was told I was just stressed out because of the rape, and few people would even talk to me about the pregnancy.  I was blessed to have miscarried, though I feel horrible for those who miscarry that are wanting a baby. For me, it was the best outcome for a traumatized 23-year old brain. I’ll never forget that morning- both the horror…and the relief.

Adoption isn’t always the ‘perfect’ answer, either. I was adopted, and I have had positive experiences with my adoptive and biological families.  But I couldn’t give a baby away- and how could I raise a child of rape without prejudice?  How could I tell a baby it was conceived in violence with someone who terrorized me, and have that child ever believe his/her existence was a good thing?  Even if I truly did the best I could to be loving (and with my love for babies and kids, I probably would have done OK, but the whole thing was terrifying).  As an adopted child- who was always told that my being placed for adoption was a wonderful thing for my adoptive parents- I understand that underlying feeling of being a ‘mistake’, even in the best of circumstances.  I later found out that I was conceived with an abundance of love, which meant a lot to me. But growing up, especially as I entered and went through adolescence, I did feel like a fluke.  Being the product of a rape can never be something that can be smoothed over with later information should I have met the child (if I’d carried it to term and relinquished it), or managed to raise it with some degree of actual love and affection.  I don’t ever think abortion is an acceptable form of birth control; there are responsible ways to address pregnancy prevention.  But I ‘get it’ when someone is raped and just can’t emotionally deal with a pregnancy.  I don’t like it. I don’t support it. But I get it.  Once again, I don’t fit with so many that I grew up with.

The ‘morning after pill’… it does NOT terminate a pregnancy. It prevents implantation. Without implantation, even a fertilized egg will not result in a pregnancy. It’s simple biology.  The ‘morning after pill’ is not the same as abortion.  There are pills that do terminate pregnancies.  It is good to know the difference.

The more things there are to divide people, the more I don’t fit anywhere.  I can see many sides of an issue, and I don’t understand why others can’t do the same. Am I just stupid?  I’ve  generally graduated with honors, and done very well when I worked as an RN. Am I naive? Maybe.  Do I just want to feel like it’s OK to not hate one side or the other in order to ‘belong’? Absolutely.  That’s really all I want.  And to not be belittled for wanting that.   I’m glad that humans aren’t my Ultimate Judge.

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…

Dad Went To The Oncologist Today

Over the past few months, my 80-year old dad has been dealing with some health scares, starting with an egg-sized mass in his neck. Several weeks after it was found, he had surgery to remove it on November 30, 2012.  Surgery was considered very successful, as the surgeon was confident that the edges were all well encapsulated, and the mass had been completely removed. But they needed to figure out what had caused this thing. He hadn’t had any symptoms- it was found when he’d gone in for a routine exam to get his thyroid medicine refilled.  He had had two biopsies prior to surgery, and then the pathologist had the entire mass to dissect and tear up, and there was still no definitive answer as to the type of cancer this thing was. They knew it was an extremely low grade cancerous tumor that had actually replaced his thyroid tissue on the right side. They felt very certain that it wasn’t going to have any impact on his lifespan…but they still were not sure exactly what it was.  It had all of the characteristics of a ‘good’ cancer- but that’s about all they knew.

So, he was referred for a PET scan (fancy CT scan) and to an oncologist (who just happens to be the same oncologist I see- and like). I’ve gone to every appointment with dad (until today), since he’s not up on all of the medical terminology.  I’m quite comfortable with medical stuff, being an RN since 1985 and though I have been on disability since 2004, my own medical issues and cancer have kept me somewhat up to date on many things. And, I know how to use the search engines online 😀   I’ve been looking up everything that the docs have said, and I’ve been just as confused as dad.  I wanted to hear what the docs said, since dad calls me with questions, and I wanted to have the info as accurate as possible.  Sometimes dad’s translation of medical terms is a bit iffy !

At the first oncology appointment, the doc was very straightforward. They needed to rule out multiple myeloma. This is a cancer that dad has been terrified of since his mom died of it in a long, dreadful 9-month death back in 1979 at the age of 74.  I remember it fairly well (I was protected from some of the more sordid details- but I was 15 years old, and knew she was very sick), and knew she had been on dialysis 3 times a week during those months, had a horrible ‘quality’ of life, and had coded twice during dialysis.  Back then, they didn’t offer people hospice care like they do now. They went for the maximum treatment, even if they knew it was essentially pointless. Grandma went through hell, and dad remembers that very well.

At that first appointment with the oncologist, dad was told he’d need a bone marrow biopsy, as well as some other lab work.  Dad was offered the choice of doing the bone marrow biopsy then, or scheduling it for another day. I piped up and said he needed to do it then. He did NOT need to spend days worrying about it and imagining the procedure in his head (as he asked me about it, since I’ve had five of them).  The procedure does sound dreadful.  They drill a hole in the back of the pelvic bone to suck out bone marrow.  But, these days it’s much easier than the one I saw during nursing school.  That was the only thing that nearly dropped me to the floor in a dead faint during all of nursing school.  I don’t ‘do’ bone noise. But having them done, I learned that they aren’t that bad. I drove myself to and from three of them (the first two were done when I was in the hospital). So, dad got himself on the exam table, took some deep breaths, and had it done. He did extremely well, however, he didn’t really convince the nurse of his ability to drive home when he answered her with “well, I guess we’ll find out”.  Good one, dad.  We all felt so safe with that answer.

The oncologist also said during that first appointment that his PET scan did not show the usual ‘holes’ in the bones that someone who had multiple myeloma would likely have. And, dad hadn’t had any symptoms. This whole thing was sort of found by accident.  That was all good news. But, the bone marrow biopsy would say one way or another if he had multiple myeloma or any other bone cancer.  SO, after that appointment, there were about two weeks of waiting. He saw his surgeon last week and he felt that the results didn’t show MM- and could possibly be something so rare that he might write an article to be published on dad’s case.  There’s a possibility that this thing actually started as a couple of very slow growing cells transferred to him while he was still in his mother’s womb.  That sort of rare.

Today, I couldn’t go to the follow-up appointment to get the bone marrow biopsy and other lab work results.  I’ve got a nasty cold, and nobody in an oncology office with lousy immune systems needed my germs floating through the air.  Dad promised that he’d call me as soon as he got home, and he did. NO multiple myeloma. No chemo. No chance of that sort of agonizing death (though treatments and chemo are far different now than they were in 1979).  He does have to have some radiation, more as ‘housekeeping’ to be sure that if there are some stray cells they get nuked (the oncologist had mentioned the possibility of this at the first appointment). Dad will have some lines drawn on his neck so they know where to aim the radiation- so it will be visible that something is going on. Until now, I’ve been sworn to secrecy (well, that hasn’t actually been revoked).  But this is good news, and those radiation lines will be visible. People will know ‘something’ is going on.  And here’s the bottom line: dad is going to be OK.  This will not kill him.  🙂

As much as I love Texas and the 17 years I lived there, I’m so thankful to be here now for my dad.  I’m also thankful for the last 10 years that I’ve had to spend time with him. Though face-to-face contact is not as much as I’d like because of my own health issues, we do talk daily, even if he’s on vacation (well, those cruises and other international trips were some blips of time without daily contact, but I didn’t hear that any boats sunk, so I was fairly certain he was safe). When I am able, we do go out and do things together. And he’s always got my back. No matter what, I know that he’s always had my best interests  in mind, and now I want to be there for him to help with medical language translations, and just ‘be’ there.

Time is something that no one can ever get back.  Once it’s gone, that’s it.  I’m trying not to waste what time is left- and that is the kicker- nobody knows when it’s going to be over.  I know that one day he will be gone, and I dread that thought.  I’ve learned during these 10 years back here, as an adult, that he is, and always has been, much wiser than I ever gave him credit for (I think that’s pretty normal- when I moved to Texas, I was 22 years old and still had that post-adolescent ‘all parents are a bit dim’ outlook).  I’ve learned much more about what makes him him, and have so much more respect for him. Being adopted, I could have landed in a lot of places.  I’m SO thankful that I was ‘given’ to the dad I got. While no parent is ever perfect, he did an amazing job as a dad.

I thank God that he is MY dad.  And I’m glad he’s going to be here for a while longer 🙂

Running on Empty

The fall of 1981 was one of isolation, hopelessness, and being totally overwhelmed.  I was supposed to be having a wonderful time as a freshman at the University of Illinois- Urbana-Champaign campus.  I was 17 years old when I got there, and had become seriously anorexic the summer before when working as a nature counselor at a summer church camp I loved.  I wasn’t super skinny, but my mind was a total eating disorder trap.  Every thought included how to avoid eating, how to ‘get rid’ of food (I used laxatives- 10 of them 4 times a day), and how to avoid being noticed.  I bombed that last one pretty quickly.

My roommate and I didn’t last long. She thought I was too quiet, and requested to move out (which she did).  Looking back, I can’t blame her; watching someone self-destruct and be so consumed by the eating disorder had to be miserable for her.  We both had double rooms to ourselves- which just meant more isolation for me.  Outside of classes, I spent a lot of time walking around campus, or taking the bus to various parts of town, and just walking.  When I was in the dorm, I’d look out of my 12th floor window, and follow the lights of cars as they drove through the countryside at night.  I played a Christian radio station for comfort, and just wondered if I’d get better.  Then I’d get scared that ‘getting better’ meant eating, and I’d fall back into the ‘starvation’ mode with even more determination.  Other than the background music, and the fighting in my head, most nights were eerily quiet.  Those who know the insulating effect of heavy snow, and how it mutes most sound, will understand what my head ‘sounded like’ for the many months I was there.

I’m not sure how I lasted as long as I did.  My weight was relatively stable, but the starving/bingeing/purging patterns were also how I was ‘living’.  I’d take 10 laxatives at breakfast, lunch, dinner, and bedtime with a 16 ounce glass bottle of Diet Rite cola.  If I ‘had’ to be seen eating at dinner (only meal where I’d be noticed- missing, eating, or acting weird), I’d have an apple or half of a baked potato. That would trigger intense guilt, and I’d run up the 12 flights of stairs to my room.  Then I’d get homework done, and go back to watching the lights of the cars in the night.

When I did try to get to sleep, it was another battle.  There were many nights when I’d watch one specific star as it moved across the sky out of my window.  Many times, I’d get up to go to the bathroom (spent a lot of time in there with 40 laxatives per day), and pass out before I could get back to my room.  I’d be sent out by ambulance, rehydrated, and sent back to the dorm.  They’d lecture me about how unhealthy eating disorders were, and I’d nod, then go back to my crazy routine.

What stands out the most from that semester, besides being so sick, were those nights of such ‘silence’ as I watched those car lights (and occasional police car’s red flashes ) move across the view I had from that 12th floor dorm room.  I’d wonder what those people were doing, and if they were in their own living hell.  I’d wonder if I’d ever get out of the mess in my head.  I’d wonder why I couldn’t just snap out of it and eat, without the blinding feeling of guilt for having fed myself.  It was like I was punishing myself for existing and having human requirements to survive.  But I had no good reason why.  I’d been born there (and placed for adoption), but the starvation (and diet contests) had been brewing for a few years- so the whole adoption/birthplace thing didn’t really pan out.  My mom had been constantly on me about my weight (when I wasn’t fat).  Maybe I just picked up where she left off.  I don’t know.  I eventually did ‘click’ with the explanation given by Peggy Claude Pierre- that the ‘negative mind’ was the one in control during eating disorders, and refused to allow the anorexic/bulimic to tolerate self-care and survival.

But those nights were so muffled and eerie.  I won’t ever forget those.  Or how scared I was.  And alone.  I had several people looking after me from their assigned ‘roles’ (therapist, resident director, resident advisor, and several dorm-mates), but nobody understood.  They each tried to help in some way, but I was on my own, with something I couldn’t handle. I refused to tell my parents (I saw that as failure, which wasn’t allowed).  So I tried to just keep going… but how long could I go on fumes?  Many days I had fewer than 300 calories.  When I binged, it was a disgusting amount of food, but it possibly gave me enough of a ‘boost’ to keep going. Laxatives don’t remove food; they remove water- so some nutrients got in… but I was running on empty, and running OUT of time.

And it was so, so quiet when I looked out at the world from that 12th floor dorm room window.

University of IllinoisOctober 1981

University of Illinois
October 1981