Sometimes Being Homebound and Isolated is Really Hard

Considering what has gone on with three people who have been very important in my life this year (they died), I have to know that I’m very fortunate.  Two had battles with horrible cancers between 9 and 10 months long, and one had a sudden collapse with an aortic dissection, but lived two more days…. she had been over a few weeks earlier talking about limited time. Maybe she know something was up, or was just being realistic that at 89 years old, she wanted to get things in order.   We had a really nice visit that I’m so thankful for.  The one who had the 9 month battle with colon cancer is a cousin I had a lot of  phone and e-mail contact with during her horrific struggle.  The other was my dad’s lady friend from church;she and  his first cousin (with the aortic dissection) had services last week.  I wasn’t able to go to either, but did at least meet the lady friend’s family, who I’d heard about for years, and felt a need to pay respects to them; we’d all heard about each other for years. I couldn’t stay long, but at least I popped in after the service for a few minutes.  I will miss them especially during the holidays, but also in general, as they were either family, or just about, as she and dad were buddies for church dinners, going out with friends, etc.

Overall, I really do realize how fortunate I am, but I don’t have many perky days when all is sunny and wonderful. There are some times when I just get overwhelmed when I think about what I used to be like.  Other days, I do my best to get by, and I do still have a lot that I enjoy from home. I still get to help out family and friends with medical  questions/translations- and I’m very glad to do that.  It helps me feel useful in some way.  And I get rather nostalgic about the days when I was working 3 12-hour shifts a week as a charge nurse in some sort of facility (hospital, drug/alcohol rehab, adolescent psych), or the Monday-Friday desk jobs entering assessment data into the computer for Medicare reimbursement and/or care planning for skilled nursing facilities.  I also did some stints on neuro floors, head injury rehab, and pediatrics- so a greatly varied career that I miss.  A great thing about nursing, especially in Central, rural Texas between 1985 – 2002, is that when I’d get bored with something, I had no problem finding another job within days.  Sometimes the offers were waiting for me on my answering machine when I got home from the interview.  Being an ADN, and not having a 4-year degree was never an issue, either as a staff nurse, charge nurse, weekend supervisor (only RN in the building/facility), or department head.  I was lucky to graduate from nursing school in 1985 when we were expected to know how to do procedures and skills, or we didn’t graduate.

Then came disability in 2004.  I fought through 8 years (starting in Texas) of trying different medications to regulate the fainting and weird episodes where I turn beet red, then a bluish red, before becoming pale and cold like a corpse. For eight years, I muddled through, and even had several decent years after the neurologist down there wanted to try an off-label medication.  By the time I was told I was no longer OK to work (by my boss in IL in 2004), it crushed me.  My identity had always been as an RN.  I didn’t have a husband or kids, so no other roles.  My relationships were all with co-workers in Texas ( even though I’d moved back to Illinois, where I was basically thrown away- nobody returned calls, and one former coworker went out of her way to avoid me at the grocery store).  I’d gotten sick- I hadn’t embezzled anything !  I guess it’s a Yankee thing. :/

That started some very chaotic years of figuring out what meds would help with the worsening symptoms (fainting more often, with some injuries including a concussion, and torn meniscus on my right knee requiring a knee replacement, some very strange medication interactions that caused a small stroke, many blood clots in my right lung, and ultimately leukemia (AML, subtype 3, or APL) which required chemo that worsened the autonomic disorder with thigh atrophy and increased sensitivity to heat).  I was a ‘regular’ at one of the ERs early on, and they treated me like trash.  Had I not gone to a decent ER with the blood clots in my lungs, I likely would have died – they were numerous in all three lobes of my right lung and pulmonary artery, and in various acute, subacute, and chronic stages.  The apex of my heart had pressure against it from my lung pushing into it.  It was bad. I only went to the hospital because I thought I was having a heart attack.

I’ve been essentially homebound for ten years.  I’m not sure that many people really understand what that means when “friends” here (coworkers) disappeared as soon as I left the parking lot on my last day.  I do have my dad, and a couple of friends here- one in particular makes an effort to come over periodically, and has done a LOT of work helping me get things organized so that I can get “stuff” minimized around here. She has been incredibly helpful once we found each other again on FB a few years ago.  I have been invited to family holiday parties- which I can attend one of, after everyone eats, since hot food in close proximity to body heat of other people is a problem- so I go when I’m less likely to stick out as being totally weird.  I really like that family bunch, and I hope I don’t come across as not liking them.  I just can’t tolerate a room over 66 degrees.

There are days when I don’t hear another human voice other than my dad (who is 82 and healthy, so I’m very thankful for that). We try to do daily “attendance” checks with each other, and he is really a huge asset in my life for many reasons… he always has my back.  I know he will never give me bad advice.   I might not see another human more than once a week (again, dad) for a few weeks at a time.  The phone rarely rings… usually it’s dad, my birth mom, or a reminder for  a doctors’ appointment or test (this week it’s an abdominal/pelvic CT for some intense bloating likely related to the autonomic problem).  Facebook is my primary form of contact, and I’m incredibly grateful for that; prior to getting this laptop from my birth mom and cousin, I was even more alone… now I can at least keep up with people I’ve known for years, whether from work, family, or childhood.   I challenge anyone to unplug the phone, have nobody show up at their door, and not hear another live voice in person for days (and occasionally weeks) at a time. It takes getting used to- and even now, it’s still hard.

I miss seeing co-workers and patients.  I miss being able to just go out and do something social without having to deal with the logistics of cooling vest equipment, distance from home, how I’m going to get there, can I leave if I need to, etc.  There are no ‘going out to lunch’ days (who would I go with?).  My dad is the one I go places with on the days when I can go (and I know I’m the most undependable ‘date’ with frequent last minute cancellations because of symptoms of some sort).  He knows that when my cheeks turn a deep bluish-red that it’s time to go.  And he’s always willing to take me anywhere.

People don’t understand that I can’t unload the dishwasher and fold laundry in the same day, or I end up with spasms from the base of my skull to my lower back, and am useless for a day or two.  Chronic pain isn’t ‘seen’.  Fibromyalgia and degenerative disc disease are chronic and  the DDD, will get worse (degenerative is a clue)- so I pace what I do as much as possible.  I miss the days when I’d set my mind to doing something around my apartment, and not stop until it was done.  That’s long gone.  I ‘look OK’, so I’m not sure people understand that I really am doing the best I can.  I live independently (getting many things delivered to my apartment from Schwan’s- frozen foods, Amazon, and Walmart).  I go to the store about once a month… maybe twice if it’s a good week about halfway between disability checks.   I still want to do as much as I can myself, so I don’t lose any more muscle mass.  The initial chemo took up about 20 pounds of muscle, and then the neuropathy in my thighs took much more – while I gained weight on chemo (not easy for my head to deal with, or to get rid of the poundage).

I’ve written about the expenses of Medicare and medications not covered in other posts. Buying insulin from a part D plan guarantees that anyone on it will go into the dreaded ‘donut hole’ where meds are NOT covered by the Medicare drug plans.  Most diabetics are on several medications.  The donut hole is dangerous.   The ‘good’ insulin is upwards of $200 per vial….between the two types of insulin I use , if I got it from the part D company, that would be $600 a month just for that- minimum… Thank God for the  cheap stuff from Walmart; I’d be sunk without it.  I don’t understand why insulin (the better stuff ) – a drug that is absolutely necessary for many diabetics- is so  unattainable.   I worry about this sort of stuff…

But mostly, I miss the things that I used to take for granted… seeing coworkers, having daily contact with other humans, having a purpose that felt like ‘me’ (being an RN), and not having to plan for every contingency every time I leave the apartment, even if it’s only for an hour.   My short term memory and word-finding are still not back to normal after chemo.   Going to the store for fresh produce every week has been long gone.  I might figure out something with dad, to go with him a couple of times  a week to get fresh fruit and veggies.

I really do have a LOT to be thankful for.  I have survived a lot.  During my 55 year old cousin’s final weeks, she weakly asked why I was allowed to live and she wasn’t- not in a nasty way, but in a tone that just sounded like she was trying to make sense of things.   I don’t know.  I know I must have some reason to still be here.  I hope I can make a difference somehow.  The blog helps… I keep track of my stats, and more than 100 countries have hit more than 16, 000 times.  At least people know I’m still here… that and Facebook. And my dad and a couple of people I see every month or two.  That they take time out of their busy lives (and they are busy !!) means a lot.

I’ve got God, my dad, my birth mom, folks on FB, and my dog- who is my main companion and pretty good at it :)   So, even though I miss what my life was, I’m at least alive, and still able to live alone, and figure out how to get things I need.   I truly am thankful for that. I know that there are others out there who struggle a lot more.  I remember those people I used to take care of that were never going to live on their own again.  I don’t know where the dysautonomia, diabetes, degenerative disc disease, degenerative  joint disease, or lung scars from the clots are going to lead me… but I’m sure I’ll figure it out.  I always seem to land on my feet ;)

Dysautonomia Awareness Month…. I’m Very ‘Aware’ All Year, Every Year

OK.  October is Dysautonomia Awareness Month… With Breast Cancer Awareness Month at the same time, nobody will care about dysautonomia.  Men are more than likely behind the sanctity of boobs, so along with being a rare disorder that people really are NOT aware of, there is the whole ta ta thing that people go all pink for, and dysautonomia remains a mystery to most, if they ever hear about it at all.  Don’t get me wrong, I’m not ‘against’ cancer awareness, but who on the planet with a pulse and working brainstem isn’t aware of  breast cancer?  I’ve known and do know many women with breast cancer (including my mom, who died in 2003 after surviving multiple cancer sites for 17 years, dying from something unrelated). I understand that any cancer diagnosis is a nightmare (I’ve been there, with leukemia).  (And why is there no blue ribbon with balls on it for testicular cancer awareness? Ladies? ).   Anyway, dysautonomia is something that I’ve lived with for decades- probably longer than it was diagnosed.  It didn’t flatten me until 2004.  And most doctors are clueless.  The general population can’t even pronounce it.  Dis-auto-gnome-ee-ah.

Every morning, I wake up not knowing if I’ll be able to actually get out of bed and begin my day without my head spinning as my blood pressure tanks.  Will my peripheral vision begin to narrow, and will my hearing get muffled?  Or will I actually be able to get up and not have to lie down again?  When I get in the shower, will I get that ‘sweet spot’ in the temperature of the water where I get a nice hot shower, or will it be too hot, and once again start the process of passing out?  My heat intolerance isn’t about temperature preference or comfort, it’s about staying conscious.   My thermostat must stay around or below 64 degrees, or I start to have symptoms.  Fifty degrees is much better if I’m outside.  I wear a light snap-front sweatshirt, left open,  when it’s in the 40s.  If I leave home to go into another building where I have no control over the thermostat, I have to wear 5 pounds of cooling vest inserts.  To stay conscious.  I’ll start to ‘burn up’ for no good reason (and this is NOT hot flashes- I’ve had those, and they are totally different).  Or I’ll get so tired, that doing anything is overwhelming.

I ‘look OK’… aside from being overweight, and having very few eyebrows post chemo (which at this point has to be permanent), I look fine.  That’s all well and good- but it can also be very frustrating when trying to explain why I can’t do something.  I also have multiple ‘other’ medical and orthopedic problems (discs, knees, spine, epilepsy, diabetes, yadda, yadda, yadda…), so when I’m walking I look a bit gimpy, but the dysautonomia is totally invisible if I’m not lit up like a red stop light from severe flushing when the dysautonomia spells kick in.  My thigh muscles have atrophied (probably from diabetes and chemo), which looks weird, and makes walking quite tiresome.  But people really don’t ‘get’ the whole dysautonomia thing.

The autonomic nervous system controls involuntary body functions- blood pressure, heart rate, breathing, flushing, muscle/brain signals, etc.  There are many ways this can all go wrong.  Initially, I had problems with passing out, as well as my right pupil dilating.  Then my gait would get wonky, and eventually I’d keel over and sleep hard for hours.  Temperature dysregulation hadn’t shown up yet.  I was in Texas when this all started, and I did fairly well at first.  When it was first a ‘thing’, I was living in a house (with no central AC- just room units for at night) with a coworker to share expenses (perfect situation; we had opposite schedules, so it was basically like living alone).  My housemate would hear me hit the floor from her room at the other end of the house, and find me passed out on the wood floor.  I thought I was just ‘nervous’ after a recent hospitalization for eating disorders, but she said that there was nothing  ‘nervous’ about me that she’d seen, and she really thought I had some type of medical issue.  One  night I couldn’t get up off the floor like usual, and I agreed that she could call 911.  That started the whole testing process.

I was lucky that I had a neurologist who thought I had dysautonomia. She sent me to see an electrophysiologist (EKG specialist) in San Antonio, who ended up doing a tilt table test.  My blood pressure dropped to 44/16, and heart rate dropped into the 50s (heart rate should go up, and compensate for a low BP, though a BP that low isn’t usually associated with ‘coming back’).  I was put on the first of several meds, and sent home (driving myself 60 miles after nearly passing out).

I continued to have issues with work, but eventually meds were sorted out, and I was doing well enough to get my work done. Additional disorders were ruled out (MS, myasthenia gravis, pheochromocytoma, brain tumor, stroke, etc).   The nursing home I went to work at had some very accommodating supervisors, which made a huge difference in not being panicky when I felt something coming on (the prior place did a lot of ‘threatening’, and since I was the only RN on campus at a drug/alcohol detox center on weekends, I understood the need for a conscious employee :p – but I didn’t want to stop working; being a nurse is who I AM).  I had a mattress overlay in my office at the nursing home,  to put on the floor if I needed to lie down.  I also had a fan from home, as temperature had begun to be something I had to keep ‘moderate’.  If an episode hit, I lied down; when it was over, I finished my work.

Fast forward, and I’m back in Illinois in my hometown, trying to keep things together at work, and it just started falling more and  more apart. I was hauled out by ambulance 10-12 times in a month or so at another nursing home (office job), and it was clear that I wasn’t able to keep working. I’d left a pediatric hospital job since I was terrified I’d get dizzy/lightheaded when handling very tiny babies (or larger, heavy ones), and that just wasn’t something I was willing to risk (along with some other issues with the job itself).  I had to deal with a new neurologist on my insurance plan at the hospital, who seemed clueless.  Once on disability (and Medicare two years after that), I found a neurologist who did know about dysautonomia, as well as a internal medicine doc who was quite familiar with the disorder.  With multiple medications (roughly 25 pills/day on a good day; more if not- and 3-4 shots of insulin) and total control over my thermostat, I’m able to sit up for several hours, but  I have to get up every few minutes to avoid any ‘pooling’ of blood in my legs, or I’ll enter the ‘pre-syncope zone’ when I stand up.

Now, my ‘normal’ consists of having the air conditioner on when it’s 30 degrees Fahrenheit outside.  When there is snow piled up outside, my AC unit is the only one with space around it where the snow has melted from the heat generated by the AC.  I leave home about 2-3 times a month- monthly grocery shopping, a doctor’s appointment here and there, and maybe a short trip to the grocery store about half-way between disability checks, for milk and/or bread.  Everything has to be ‘paced’.  If I do laundry, I can’t unload the dishwasher.  If I take trash to the dumpster, I can’t vacuum in the same day.  And I struggle to maintain any muscle tone, to avoid getting worse… but the chemo I had to have to survive the leukemia has caused deterioration.  I guess there are tradeoffs with everything.  Nothing is taken for granted.

Being on Medicare has been a horrific eye-opener.  I used to do the assessments that determined reimbursement for Medicare patients at the nursing home I worked at in Texas.  I was superficially familiar with Medicare.  Then I was on it.  Medicare is expensive.  There is the part B (doctors’ office and equipment/supply part) monthly premium (about $110).  There is the supplement plan since Medicare doesn’t cover huge portions of hospitalizations and tests (so add another $325 per month).  The part D (prescription plan) is about $75 per month, and between over the counter medications I MUST have, as well as paying out of pocket for insulin, that adds about $125/month (I’ll get into insulin in another post).  SO if all goes well, $635/month goes out the door for medical expenses.   That pretty much ensures no out of pocket expenses for doctor’s office visits, tests, and (knock on wood) hospital costs.  When I was in for 6 weeks for leukemia in 2010, the bill was $300K…. nearly 1/3 of a million dollars.  I will make my last payment on what they didn’t write off this month.  Four and a  half years later.  That’s not included in the $635.

Dysautonomia can be mild or fatal.  With the chemo causing deterioration, and knowing what I was like beforehand, I don’t think I have the fatal type (Johnny Cash did).  I have the invisible, life-altering, disabling, survivable kind.  Some symptoms may be worse than others on different days.  I can have one cheek very hot, and flushed to almost a blue-red, while the other is cool and has normal coloring.  I can have blue fingernails, not from lack of oxygen, but because of constricted blood flow.   My heart rate has dropped into the 30’s for no good reason (that bought me 5 days on a cardiac floor with nurses who were very nervous about the epilepsy- padding the side rails and putting a bed alarm on my mattress that went off if I got up to go to the bathroom- and GADS, they panicked when I got up to walk in the halls for some type of activity one night…. how did they think I lived at home?  Alarmed, padded bed?).  Sometimes one arm is flushed and hot, and the other cool and pale.  I’ve looked ‘dead’ per one former supervisor, with breathing so shallow and extreme paleness, it scared her many times.  I live alone, so have had to learn what sets me off… sometimes it’s as simple as a ‘scare’ on a TV show that wasn’t expected.  But heat and pain are my main triggers.  I’m in constant, chronic pain- that’s harder to control than the temperature.

Some people have POTS (postural orthostatic tachycardic syndrome), which causes symptoms if someone is standing. At all.   Their heart rate goes out of control simply by being vertical. Lots of folks with that need wheelchairs for safety.  There is neurocardiogenic syncope- which is actually a simple faint, until it’s a pattern.  There is pure autonomic failure – where nothing works right most of the time.  Shy-Drager syndrome is one of those total failure syndromes, and even saliva production is involved.  Dysautonomia isn’t one thing.  It’s a combination of symptoms that are generated by an abnormality of the autonomic nervous system.  Some are relatively minor, and others require feeding tubes, and other external measures to make it survivable.  More people have dysautonomia than are diagnosed, per research estimates. It can affect any age group or gender, though females tend to be diagnosed more often.  It can be seen as a conversion disorder or other emotionally based problem, which causes improper diagnoses, and completely inappropriate medications.  I encourage anyone who finds their symptoms listed in the informational links to talk to their doctor.  There isn’t a cure, but it’s generally not fatal, and can be treated.  Getting used to the new normal is the hardest part, as is not being understood.

See the following for more information:

www.ndrf.org 

www.dysautonomiainternational.org

www.dinet.org

 

 

 

 

Honoring Abusive Parents… Does God Want Us To Throw Ourselves Under Their Toxic Bus?

I pray that God gives me wisdom especially as I write this post…

I’m very fortunate to have a dad who has my back, is fun to be around, and with whom I can talk about anything.  Having a relationship with him as an adult has been a lot of fun.    If/when he gets upset about something, he says what he says, and it’s over.  He doesn’t hold grudges, and generally forgets he was ever upset.  He doesn’t hold my emotions hostage. He doesn’t guilt me into anything.  I do often feel badly that I can’t spend more time doing things away from home, due to the dysautonomia, but he understands that I will do things when I can- and we enjoy those times.  Even when I was a kid, he never did anything that wasn’t in my best interest.  I didn’t always like discipline, but it was swift, to the point, and never left a feeling of shame.

My mom wasn’t so pleasant when I was growing up.  She wasn’t really ‘mean’, but she was broken. There were some things that were done that were most decidedly unpleasant, and if I had kids, I would not have repeated them.  But mostly she was broken.  She had some intense losses (two newborn sons, two years apart, just three years before adopting me). She was terrified of doing something wrong, and of losing me, so some of her ability to ‘attach’ or bond was damaged.  It wasn’t personal, though as a child, it felt that way.

It wasn’t until my mid 30s that I figured out that all of that was her ‘stuff’.  It wasn’t about me- even though it had a huge impact on me. Her mom was orphaned at the age of six, and had her own issues with attachment (she discussed this with me several times), and she deliberately didn’t allow for much closeness, so I wonder if my mom had any frame of reference for how to parent.  No kid comes with instructions, and not all parents have much insight into their own ‘stuff’.  I do know my mom loved me, and she did many things with and for me… but verbally, there wasn’t much clue that she liked me.   Basically, she did the best she could, with her own ‘stuff’ coloring her emotions and interactions.  I gained a lot of compassion and love for her, by understanding that whatever was going on wasn’t about me.

Being a Christian, it can be very frustrating and confusing to deal with abusive/neglectful/hurtful parents when so much is said about honoring one’s parents.  But does that include overtly abusive parents?  From what I’ve found, the answer is both yes and no…  We aren’t expected to obey demands that go against what God’s Will is for us (He doesn’t want us to be continuously damaged and tormented).  But there is a difference between our expectations as children and that of the adult child/parent relationship.   If a parent is acting within God’s expectations of a solid, loving parent, there probably isn’t an issue about honor, respect, and love.  But for the parent who isn’t able to understand that demeaning, demanding, and destroying their children’s emotions, and the relationship in general, I don’t believe things are so clear.   That abusiveness isn’t from God’s instructions on how to parent (Ephesians 6:2).

Here are links that help with Bible verses, regarding abusive parents, and adult children (remember, that these apply to the abusers as well as anyone who is a parent):

http://www.luke173ministries.org/537996

http://bible.knowing-jesus.com/topics/Abusive-Parents

http://www.gotquestions.org/honor-abusive-parents.html

Looking at the word ‘honor’, here is what Merriam-Webster has to say :

1. respect that is given to someone who is admired

2. good reputation; good quality or character as judged by other people.

3.  high moral standards of behavior

There’s nothing about throwing ourselves under the toxic family bus.

 

www.merriam-webster.com/dictionary/honor 

When there is a toxic relationship, we can’t control what the other person does.  We can only manage our own  responses and behaviors, and decide how honorable we want to be.   God will take care of the ultimate judgement on hurtful parents.  I don’t think we’re expected to put ourselves in harms way with abusive parents.  I do think we can protect ourselves, even via distance and refusing to participate in an abusive parents’ tirades and ongoing unrealistic demands, and outright lies.   Illness and stress are not excuses for abuse.  Even those with dementia are given boundaries.  Those with sound minds are entirely accountable.  If they have such severe reactions to something, they need a professional to help them- not unload in unhealthy ways on their family.

But what CAN we do?  We can focus on our own relationship with Christ. It’s hard to have a full-on relationship with our Lord when we are being torn down by an earthy parent.  We need to give that relationship to God.  We can forgive.  Forgiveness doesn’t mean condoning someone’s behavior- but it is an act of obedience to God.  It’s a freeing up of mental space for more positive content. It relates to our relationship with God… much more so than with humans  (Matthew 7 is good for this). We can show compassion without being subjected to continued and repeated abuse.  Sometimes people have to be loved from a distance.  Sometimes we have to just do what we can, and let the abuser stew in their own anger.

If a parent is not showing the love of God to their own kids,  there is something wrong with the parent (intentional or otherwise).  I’m not saying they have to be perfect, that’s impossible- but (if they claim to be a Christian) they should be compassionate, loving, forgiving, not demanding, not haughty, etc (I Corinthians 13).  LOVE isn’t rude, not self-seeking, isn’t easily angered, keeps no records of wrongs, isn’t proud, is kind, and is patient…  Parents are supposed to show their children those qualities.   And adult children can demonstrate these TO an abusive parent, but still not be subjected to 24/7 abuse.  Interactions can be brief, but still show love as God describes it (sometimes less is more).  Sometimes the honorable part has to be how we interact- not how we hope they interact with us.  My mom ended up with dementia before I was able to see her as someone who needed compassion; there was no reciprocation- but that was OK; I’d fixed my own perspective when I figured out it wasn’t really about me.  Not all abusive parents fit into that category, but we can decide how we want to be viewed in how we interact… we decide OUR legacy- not that of the parent.  The parent will have to answer to God one day, as will we- and He knows our hearts.  He knows about the hurt and damage done to the tender hearts we had as kids… and He can give us strength and wisdom to do what’s right as adults.

The ones who abuse are the ones with the problem, and in my opinion, it’s more of a spiritual and unresolved emotional issues that can’t be fixed until the person has some reason to change, and make amends.  It’s not about the kids (adult or otherwise).  It causes damage in the relationship, but it’s not ‘personal’. All anyone can do in an adult child/parent relationship is show the parent some healthy boundaries,  pray for them, and  be kind without being a victim again.  Sometimes distance is needed because the situation is so toxic.  I don’t think that goes against the Bible.  I don’t think we’re supposed to be slaves or sacrifices for the  abuser.  We’re to be ambassadors for Christ- with unbroken spirits.  And I don’t think that guilt and shame are ever part of a healthy relationship.

Our ultimate responsibility is to God, and following what He wants for us (Jeremiah 29:11)…. if an earthly parent isn’t following that same concept, they are not honor-able.

 

 

More Family Illness, and It’s Complicated

In the past year, we’ve lost a cousin in my age range and her mother, and last week my dad’s lady friend from his Sunday School class.  Actually, two were in the last few weeks (the visitations and funeral for two of them are this coming weekend).  Now, an uncle has been diagnosed with advanced cancer, and while things are still uncertain about his treatment recommendations and prognosis, it doesn’t sound all that great.  I still hope that there is something that the docs can offer him.

The first three people I described were wonderful, kind, beloved, compassionate parts of the family- whether actual family or ‘just’ a close friend.   The latter is not seen as a kind, compassionate person.  Yet I feel horrible that he is having to face all of this.  His wife died from cancer a few years ago (she was very much loved).  My cousins and their families are also having to deal with this.  I’ve only found out what a jerk he can be in the last 8 years or so.  I didn’t have to grow up with him.  I did have his older sister as a mother, and while she wasn’t known for being nasty, she wasn’t the same as a mom as how her students described her as a teacher (she taught for many years).  She was cold and distant at home.  As a kid, that’s all I understood.  I didn’t understand why I couldn’t have the warm, caring teacher as my mom.

I had to get to a place where I could try and see some reason for why my mom was the way she was.  I knew she loved me; that was never in question.  I didn’t, however, know if she liked me.  I knew that feeling from the time I was two years old. She wasn’t always nice to me.  I felt like I was in the way.  But as I got older, I got so tired of being resentful, that  I had to try and see her from an adult perspective, not a hurt kid, and make some attempt to understand her.  And when I did, I found out how broken she was. She had had two newborns who died within the first two weeks of life (two different pregnancies) just three years before adopting me.  She was terrified of losing me.  The attachment issues were from a place of pain, not because of anything to do with me. It would have been any kid…   Figuring that out released me from so much pain and resentment.  Her brokenness hurt me, but it had nothing to do with me.  That wasn’t the only issue, but it made sense regarding how she parented.  She wasn’t intentionally cold and distant… she was scared.  And she did ‘do’ a lot of things for me… I just never felt much of an emotional connection.   It’s really hard to explain.  She wasn’t a bad person by any means… she just didn’t know how to deal with her pain, and bond with a  new baby at the same time, with no frame of reference about how it’s ‘supposed to be done’…  nobody talked about feelings back then.

My mom’s and uncle’s  mother had been orphaned by the age of six- first her mother when she was less than four years old, and a couple of years later, her father died.  She had attachment issues (that she has discussed with me several times) because of that trauma (she was packed off to a new country with only one of her three brothers).  She told me she didn’t like to get close to people, though she always came across as ‘connected’ with my cousins and me, from what I can remember- but then I wasn’t raised by her either.  She was also ‘broken’.  And doing the best she could.  She couldn’t pass along what she didn’t have.

They do the best they can with what they have to work with, and sometimes that isn’t enough.  It just isn’t enough sometimes – but it’s all they have.

If I had any contact with my uncle, I’d want to  let him know how sorry I am that he’s going through all of this.  That wouldn’t excuse him from any of the emotional pain he’s caused, or the horrible things he’s said to/about me.  But if I stay bitter, that just hurts me.  I forgave him ages ago (that’s between me and God, not the uncle), but we have no basis for a continued relationship.  He hasn’t been a part of my life since he called me “human debris”, and said he was “ashamed to be my uncle” (fine, buddy, it’s done- you’re off the hook) after fabricating a nasty story about me that didn’t happen.  He’s a horrible bully, and is known for that character defect.  But he’s also facing some really rough stuff right now, and while I don’t want him in my life, I also don’t want to ignore the emotional torment he’s in right now.  I owe him nothing, but I owe it to myself to not be unkind in return.  I won’t like myself much if I respond that way- and I might not have a lot of time to let him know that I do care that he’s going through so much.

It’s  confusing in my head .   I don’t like this family member, and yet I can’t imagine how scared he is (and he’s still family).  He’s run off a lot of people, and it’s got to feel pretty lonely- especially compared to the way I’ve seen the other three who have been lost this year be surrounded by friends, family, co-workers, and loved ones to the point where  limits were placed on visiting/calls at times.  I don’t wish facing the end of life essentially alone (or at least not liked much) on anyone.   Yeah, people make their choices about how they treat people, and there are consequences with that.  Their ‘targets’  can only take so much crap before they have to cut ties to have their own lives not be toxic.

But I have to make my choices about how I respond, especially with something so serious.  I don’t want to have regrets in five years about how I responded.  I’ve given a message to a cousin who will relay it to him, offering my sadness at what he’s going through, and genuinely praying that whatever results from this, he doesn’t suffer (not my exact words, but the message is there).  If I could box his ears, I’d beg him to make some attempt to let his kids, and anyone else he’s hurt over the years, know whatever it is that he needs to take accountability for, and whatever amends he’s capable of.  It might not be what anybody needs, but it might be all he is able to offer.  Sometimes, that has to be enough… someone who is broken can’t give more than they have.  It hurts, but it’s not personal.

Eating Ghosts and Body Image

I haven’t been diagnosed with body dysmorphic disorder, and I don’t really think I’d qualify since I’m actually a physical mess- no imagined defects. But I don’t like my body at all right now.  I need to lose weight, and I have to admit, I have had times when the ghosts of past eating disorders start to haunt me.   It’s been three years since I stopped the chemo for leukemia that lead to weight gain. I’ve lost some of the weight, but not where I need to be to not feel so ‘inflated’.   I’d FINALLY gotten to a place where I could tolerate what I looked like, and then BOOM.  Nineteen months of heavy duty chemo to keep me alive gave me jowls and a gut that I hadn’t seen since the 90s before the last anorexia relapse.   Throw in what seems like some diabetic complications that makes food stay in my stomach for longer than normal, with horrible, very visible bloating (and often bad diarrhea when it finally starts to ‘move’), and food is becoming something that is causing some bothersome battles .

I know way too well that once anorexia or bulimia gets a foothold, it is extremely difficult to get rid of.  I’ve also been through some times with abnormal weight loss when I had undiagnosed GERD (gastroesophageal reflux disorder).  So, on one hand, I’m terrified of an eating disorder relapse, and on the other, I really, really need to lose the chemo weight.  And, the discomfort from the stomach sluggishness adds to the feeling of ‘fat’ (yeah, I know, fat isn’t a feeling).  I don’t know how to lose weight without getting into trouble (I did Nutrisystem for a while, and it is very effective, but I had some sort of reaction to something in the products).  Nobody takes me seriously, when I show up at this weight, and mention a fear of getting trapped in those cycles again.

I’m 50 friggin’ years old, and an RN (disabled, but I’ve still got my license).  I’ve never felt ‘normal’ in terms of emotional developmental stages- partly because of the eating disorders disrupting normal emotional growth (which began by the time I was seventeen, in earnest, so part of me is still stuck there- as with any addiction, emotional progress halts at the time the addiction kicks in), and also because I’ve never gone through the ‘normal’ marriage, children, love, etc. that the vast majority of 50 year old women have been through (thank you rape in 1987, and working a lot of hours, and also hours that greatly sabotaged any chances of meeting someone to have any sort of relationship with).  My brain still has that craving to have the body I had in the past (during the un-fat years), and it’s  so much more complicated than that.  I don’t really care what I look like in someone else’s eyes.  I like that I no longer have to deal with peer issues with clothing and external appearance… the battle is with how I see myself more than anything.  Since I’m rarely around anybody else, my opinion is always the ‘loudest’.

I don’t want to be scrawny.  I find that incredibly unattractive. I’ve been on the lighter end of my weight range for my body type and height… I don’t like bone protrusion, but I do remember liking to be able to feel them not too far away.   My ‘good’ weight in terms of looks, and how I feel in my own skin is actually higher than what most people would probably be OK with.  When I began my last relapse with anorexia, I was seriously fat, give or take an ounce… so when I lost %40 of my starting weight , it was a huge difference (that I couldn’t see). While I didn’t look anorexic, my mindset was entrenched in disorder.  I looked like a ‘normal’ person.   I want to be at the weight I was when I got out of treatment last time- or where I settled out at when my eating stabilized for about 11 years.

I think that’s why it’s been so hard- I’d finally been relatively accepting of my body until the chemo blow-up.  Staying alive is a good thing; I’m thankful for that.  And yet the mechanism to do that has created some really miserable feelings about this carcass I lug around.  I was extremely ill with the leukemia- six weeks on isolation in the hospital, then 50 doses of IV arsenic given while I was connected to monitors (I did get to go home afterwards, but it was about 10 weeks of daily trips to the hospital for either the arsenic, or shots to increase my white blood cells; there were 2 5-week cycles).  There was no option but to go with the treatment plan, or I could have literally dropped dead at any time (know of two people with the same form I had who did just that- though it took them about 24-36 hours for docs and their families to know they were not coming back from the bleed in their brains from such deficits in blood clotting; one was 11 years old, and the great-nephew of a friend).  In so many ways, I’m SO incredibly fortunate.  Does that make me a shallow jerk for focusing on my weight?

It’s not really about my looks. It’s about feeling physically uncomfortable in my own skin.  The photo isn’t a great angle, and my usual jeans/t-shirt ensemble isn’t very flattering – but you get the idea.   At least I wasn’t gross.  I was also somewhat miserable in this photo from the GERD… but I didn’t feel fat.  I was 43 in that photo…

I could live with this... c. 2007-2009; leukemia diagnosed in 2010.

I could live with this… c. 2007-2009; leukemia diagnosed in 2010.

SO, how to figure this out.  I don’t want to get sick.  I don’t want the torment of being ruled by calories and food.  I don’t want to be a slave to the scale.  Those years (which were on and off for about 22 years) were horrific.  I see people  (media, wherever) who have been engrossed in EDs for decades, and what merit is there in that?  My identity is in being an RN… not a stick, or something that others know is unwell.   I don’t want the mental fog as it relates to everything but the ED.  There is no life outside of an ED when someone is IN it.  Relationships with anyone and anything else are half-assed at best.  I don’t like the victim mentality of being caught up in anorexia or bulimia.  It’s so incredibly selfish, and I know that.  People want to either ‘rescue’ (those people are nowhere to be found when things get better) or run like hell from the chaos of someone who is ruled by numbers (that really mean nothing).

I go see my MD in a couple of weeks for a flu shot, and to discuss the bloating issues, as well as some other things that have been unpleasant.  If some of that could be managed better, I might feel less inclined to have to restrict a lot  in order to just feel ‘comfortable’, which will lead to weight loss, which is good, but can also lead to getting swept up in cutting back even more.    I know the cycle.  But looking at me now, I’m not taken seriously- so will have to approach this with my doc from the physical standpoint of the horrible bloating.

Ramble, ramble, ramble….  now back to regular programming.  :/

 

Suicide… It’s Not About Dying !

Tonight we learned  that Robin Williams is dead, and the consistent information is that he took his own life.  Social media being what it is, there are many comments.  Most are of shock and acknowledging the incredible talent and genius of a brilliant actor and comedian; another  who is gone too soon.  There are some  comments that are just rude and clueless.  But there are also those who just don’t understand how someone could get to the point of feeling that it was just time to give up on life, that it was too painful.  That there is no hope in sight, and that the people closest to him/her would be better if he/she was just gone… Thank God most people don’t understand what it’s like to be so far down in a pit of ‘no hope’ that suicide makes sense.

Suicide isn’t as much about dying as it is about wanting the pain to stop.  The cause of the pain isn’t really that important, though addiction is often a component.  Alcohol, drugs, eating disorders, gambling, etc. are ALL ways to numb some sort of emotional pain.  I worked as an RN in drug/alcohol rehab and adolescent psych for years, and nobody ever listed death as the main reason they considered suicide.   I had a good friend (also a co-worker) who was so solid in his sobriety and recovery  when I knew him.  He became a well-known therapist in the city where we worked.  Recently, I found out that he killed himself a few years back , while  I  was searching for him online, hoping to reconnect.  He had great local resources about where to get help (including where he could get away from town for treatment).  He knew the warnings… and yet, he relapsed into drugs, and overdosed in an amount that was said to be inconsistent with an accident.   I was able to find a close friend of his who could help me fill in the blanks, enough to know that something happened to take him into that dark hole of depression and relapse. Those are never good together.

With Robin Williams, he had resources and had recently gone back to treatment for a ‘tune up’ of sorts, knowing that he was feeling a need to protect his sobriety, not that he’d relapsed  (common knowledge).  He was getting help.  None of us know what his pain was from.  We look at the professional aspect of the man and can’t make sense of what could have been so bad in his life that he decided to give up.  But even if we knew the ‘reasons’, for most, the decision to end one’s own life will never make sense.

In 1982, I was battling an eating disorder, and got to the point of feeling very overwhelmed and unable to see that things were going to get better.  I don’t remember wanting to die.  I overdosed and was in a coma for 3 days.   I was lucky to have survived, and was able to get past those feelings of just wanting to go to sleep so I didn’t hurt (in my situation, nutritional ‘rehab’ was a huge part of clearing up my thinking).  I remember taking the sleeping pills, but don’t remember ‘death’ being my goal.  I don’t remember taking the 50 antidepressants.  I don’t remember the ambulance trip, or anything else until  I woke up in ICU three days later.  At other times, always when dealing with eating disorders, I would find myself in a mindset that didn’t see an end to the overwhelming hopelessness I felt.  I would feel myself on the edge, and yet I didn’t ever want to die.  I just didn’t want to feel so much pain.  It’s an incredibly dark place to be… and there’s a feeling of loneliness that has no words to adequately describe it.  Even with people in my life, they didn’t understand what was going on in my head, and the surrounding circumstances made things more isolating.

For those that don’t understand, please be thankful that you have no frame of reference for that kind of despair.  Please look around and see if there is someone who might need a quick phone call or note to say that they matter, and to just check in to see if they’re OK.  If someone you know has changed and either seems really down, OR suddenly ‘up’ after a period of severe depression, see if they’re really OK.  When someone makes the decision to give up, sometimes they are so relieved at making the decision, that their mood improves.  That type of ‘improved’ mood (sudden) is an alarming sign.  Gradual improvement is more likely due to good treatment ( medication for the biochemical issues, and/or psychotherapy to resolve emotional pain).  Don’t be afraid to ask direct questions.   When someone approaches from concern, it’s unlikely that it will make a situation worse.

Clinical depression isn’t sadness.  It’s not about ‘reactive’ grief that many people will feel during their life when they lose a friend or family member to death, or the loss of a job, pet, or if someone moves away who had been a part of daily life.  Clinical depression is often a biochemical disruption to normal thinking and feelings.  Hopelessness and helplessness become so pervasive that the ‘normal’ way of seeing solutions to problems just doesn’t work.  While suicide is a permanent solution to temporary despair, it doesn’t feel that way to someone who finds it  worth considering.  It doesn’t feel temporary.  It’s kind of like being too far underwater after falling off of a boat, and wondering if getting to the surface is ever going to happen… like there’s no air left in life, and no ability to feel that the surface could be reached with just a couple of kicks to reach the air that restores hope. Even if getting back on the boat is a ways off, at least there would be air.  It’s like treading water UNDER water, and never getting closer to the surface.  It’s hard to withstand that type of hopelessness and helplessness for a long time, and each person has their own threshold for how long they can hold on.

People can’t snap out of it.  They can’t just go pop in a funny movie and everything is OK.  It’s a disease, that needs treatment, and  support of friends and family that understand that the person is doing the best that they can.  And when the ones who are depressed are finding themselves going further from their normal way of looking at life, they need someone who can help them hang on…

But sometimes, it just isn’t enough.   And those left to make sense of the loss  will never have a good reason to satisfy the ‘why’ questions that inevitably come up.  It definitely isn’t fair to those left behind.  And while it’s something they have to live with for the rest of their lives, it really wasn’t about them.  Sometimes, there is nothing that will redirect a tragedy.  But nothing can take away the good memories the person leaves behind… always remember the good.