Christianity: Ritualistic Religion vs. Relationship

I’ve never liked the term ‘religious’.  For me that invokes mindless rituals and a lack of personal interaction with God.  Sort of a Monday through Saturday apathy, but a false piousness on Sunday when people are looking.  I don’t like that.  For me, Christianity is a relationship- and it’s not about being in a specific place on a specific day.  Going to a shoe store doesn’t make me a shoe.  Going to church doesn’t make me a Christian.  What I do seven days a week makes more of a difference than whether or not I show up at a specified building on Sunday.  Yet I can’t ‘do’ anything to earn heaven.

I grew up in an evangelical church, and for me it was a great experience. The other kids were fun, the youth groups were active and kept us busy with activities and ‘field trips’, and the chaperones were generally goofy enough to not be embarrassing adults, but grown up enough to keep us from getting killed. The senior high choir even did week long tours during Spring Break to Kentucky and Washington, DC, and everybody came back in one piece. We had fun.

The teaching part was also a positive experience.  None of the pastors hollered. I don’t like to be hollered at. If someone wants me to listen, they have to treat me like my ears work, and I’m not in trouble before they even get started. Hollering is punitive to me. Normal volume gets my attention.  Just about everybody who had a pastoral position had a great sense of humor- that was also crucial. I didn’t want to sit through an hour long service with someone that sounded constipated and annoyed.  During the time I went to that church, I was lucky.  Humor was intact.  I learned a lot.

Sunday School teachers were also great role models. I remember several of mine. I even taught kindergarten Sunday School for a while, and it was a lot of fun. We had the curricula all spelled out, and projects to help reinforce the lessons.  There was singing, and with little kids, a fair amount of hugs. One of ‘my’ kids came from a moderately rough background. Her mom wasn’t in the picture much, and I was near the same age as her mom.  She tended to hang out with me a bit closer than the other kids.  I still have her school photo from 1984.

People who don’t grow up in a church often think that TV ‘Christians’ are representative of all of us.  Um, NO !  There is no magic handkerchief, or vial of oil (probably Crisco), or need for someone to pray on my behalf.  I’ve got the direct number. It’s “Hey, God?” 🙂 , or “Oh, Lord” 😮 – depending on the tone of the prayer or conversation.  I don’t always get very formal- sometimes I’m even sort of ticked off. God can handle my anger. He can handle my frustration and He WANTS to hear about my pain.  The Psalms are full of examples of David’s pain- and God used  him to be the lineage from which Jesus was born.  Check out YouTube and Amy Grant’s ‘Better Than A Hallelujah’… we don’t have to follow rules to pray and be heard! Just be open, and let God know what’s going on. Good or bad.

TV preachers don’t work for me for the most part. There are exceptions, but the ones nobody has ever heard of except for the people awake during the 3:00 a.m. time slot used to  suck money out of the desperate and disenfranchised are pitiful in my opinion. But that’s just me.  God gets to judge their hearts, and He holds preachers and teachers of the Bible to a higher standard than us regular folks.   God judging hearts- that’s good news in my book.  What humans think of me is pretty irrelevant, though I’d want nothing more than to be a good representative of Christ- but in the long run, it’s God who will judge me. NO human’s opinion even comes close.

Judgement and being a Christian aren’t the same thing. Becoming a Christian is a choice. It’s an actual ‘event’ of praying to ask for forgiveness, believing that Jesus died on the cross for my sins, and rose again- and He’s coming back one day. That isn’t something that gets ‘revoked’.  People can choose to develop a stronger relationship with Christ- or not.  And nobody does it perfectly. People ‘backslide’ (fall away from their spiritual teachings and beliefs).  I routinely ask for forgiveness for stuff I do.  I will be judged one day before God- but my salvation is secure. My judgement won’t be the same as someone who has refused to accept Jesus.

I was also lucky to have a summer camp to go to as a kid for week long sessions. Between the summers before my senior year in high school and  freshmen year in college, and half of the following summer, I worked there as a nature counselor (and a few weeks of ‘cabin’ counseling).  Timber-lee Christian Center in East Troy, WI was SO much fun- and is still a very important part of my spiritual ‘roots’. People there lived what they talked.  It wasn’t put on for show. We believed what we talked about. For those of us who worked there, it was how we all lived, for weeks on end.  The immersion in 24/7 Christianity out in the open was special.  It wasn’t a ‘real life’ setting- but it was a huge blessing to have had those times there, whether as a kid going to camp, or a summer staff member.  I met people there that I’m still in contact with, and they haven’t become ‘less’ solid in their Christianity when nobody is looking…they were and are solid examples of loving Christians.  We do exist!  But we’re not perfect.

I’m not someone who spends a lot of time talking openly about my beliefs. I think as a nurse, I became less likely to just open up about God. When I was working,  I was at work to take care of patients, not preach.  (And, it could get me fired; being an example of kindness could do more than verbally ‘Bible-thumping’ someone)  It was that way for all religions.  If a patient mentioned something I also agreed with, I did smile and say I agreed. But that was pretty much the limit that was allowed.  I did support patients in their beliefs. For example, an orthodox Jewish patient needed matches (or a lighter) to light candles when his rabbi came on Friday nights. I had no problem finding those for him.  I took trays with pork products back to the kitchen at a nursing home for a Muslim resident.  I didn’t have to believe the same thing to be respectful.  I didn’t see that as a threat to my beliefs.

For me, Christianity is a relationship with God.  I’m physically limited as far as getting to an actual church building, but there is nothing wrong with my ability to read the Bible, pray, and have ‘general’ conversations with God.  I guess it’s a fine line between that and praying, but there’s communication.  I’ve read through the entire Bible a couple of times so I could see for myself what’s in there (and the study notes I had). Mostly what I learned is that I still have a lot to learn.

I also learned that it’s not my job to cram Christianity down anybody’s throat. It’s not my job to be offensive in my beliefs.  Being a Christian isn’t about ‘making’ someone believe something.  To me, it’s more about being willing to tell someone what I believe, and hopefully living in such a way that I don’t push people away.  The Bible is clear about being gentle in one’s approach to nonbelievers.  That gets missed a lot when the sensationalistic preachers are interviewed for TV, or taped as they holler on the streets.

Christ is about love.  John 3:16 is a common verse, and talks about how God sent His only Son to die for our sins and give us eternal life if we believe Him. What gets missed is John 3:17- that God didn’t send His Son to condemn the world, but that through Him the world might be saved…. there are so many more references in the Bible about love in regards to God and Jesus than there are about judgement and condemnation. Will God judge those who reject Him?  Yep… but He also isn’t cramming Himself down anyone’s throat….it’s a personal choice.  Free will.  If you don’t want Him, that’s up to you.

Religious rituals aren’t paths to salvation. It doesn’t take much to repeat an action without thought behind it.  A relationship is personal.  It’s voluntary and individualized.  I much prefer a relationship with  God the Father, Jesus the Son, and the Holy Spirit.   I don’t ‘do’ Christianity exactly the same as someone else, and they don’t do ‘my’ Christianity either- which is the beauty of a relationship.  The big things are belief and faith.  Those are relatively simple decisions.  And continuing to aspire to be the type of believer that will please God is also a decision. I might not get it perfect all the time, but God does know my heart, and that is very reassuring.

A House Divided…We’ve Already Fallen

This isn’t about one president.  No one president can accomplish what they promise during their election campaigns since Congress is really running the show. If that’s news to anyone, I’m even more sad for this country.  To be fair, I have been so repulsed by political discussions for so long, that I avoid them. That doesn’t mean I’m stupid, and I’m listening more now.  What I am now is incredibly sad, and overwhelmingly unhopeful. It also stirs up painful reminders of how politics divide families, and erode even simple interactions.  There is nothing civil about US politics.

The divisions between the Republicans and Democrats is certainly nothing new, but it’s gotten to the point that there seems to be absolutely no common ground- like the fact that we all live HERE isn’t a good enough reason to come together.  A few days after September 11, 2001, there was that nice gathering of Congress on the Capitol steps singing God Bless America (and without the ACLU or athiest organizations threatening them with a lawsuit over a religious song- go figure; must have been their day off), and that was nice. It  is the last time I remember seeing any sort of overt public unity among our elected officials.  It was the last time I remember feeling like this is one country, “indivisible, with liberty and justice for all”.

During the Bush Administration, the ‘left’ media was nothing but vicious towards President Bush.  There wasn’t even any minimal respect for the office of the POTUS.  That wasn’t something I’d seen before (and please don’t start in on my lack of political knowledge- I’m just writing about what I remember; I spent a fair amount of time simply trying to survive personal issues to be all that cued in to what was going on in the world).  It was personal.  Pure anti-Bush… because people didn’t like him?  He wasn’t a democrat? He had an accent?  JFK had an accent, nearly got us into nuclear war with Cuba, and yet he walked on water… even more so after he was dead.  The country mourned what COULD have been. Johnson signed the Civil Rights Act.

Bush  dealt with something that no other president had been forced to deal with, and there really isn’t a ‘perfect’ way to manage terrorism on home soil in a country that had, for the most part, been mercifully spared until then.  There was the first WTC bombing- and OK, so maybe Clinton could have done more- but I firmly believe he did what he thought was best with the information he had.  Nobody gave Bush that same consideration. What’s to say that in the vast deserts of Iraq there aren’t WMDs?  Do we really know?  Maybe they aren’t there. Which leads to the only option- the far left is into some consipiracy theory that they mock the extreme far right of getting into with their apocalyptic storage sheds and ammunition accumulation.

So Bush did what he thought was best. Is it better to be proactive or reactive with terrorism?  Nip it in the bud, or clean up the mess? Congress signed off on the military action, and domestic surveillance programs.  It’s not all on Bush’s head- but that’s so easy to blow off, since it was a democratic Congress that passed those things.  They certainly can’t take any responsibility…gotta be all on Bush.

The economy undoubtedly started to go south on Bush’s watch.  That’s a no-brainer.  He brought Obama into the picture before the swearing in to ensure the smoothest transition possible.  Obama had a mess to deal with, but it’s not like it was something that was done purposely to  undermine the stability of the US… or do people think that?  (padded room time).  Obama had to appear like he was doing something, so we all got those token checks to ‘stimulate’ the economy.  I paid bills; I didn’t stimulate anything besides the utility companies.

The ‘right’ media certainly doesn’t have anything decent to say about Obama.  I no longer read any media without looking for other sources of the same story before I even consider thinking about it.  It doesn’t do anybody any favors for either side to attack ‘the other guy’.  It just makes them ALL look petty.  And there are so very few media options to get anything approaching ‘fair’.

The most unity I’ve seen in the past 3 1/2 years is when Representative Gabrielle Giffords so nobly came to the State of the Union Address (or some such gathering in the Capitol), and she got what appeared to be genuine welcome and support after being shot and nearly killed by some whack job in an Arizona grocery store parking lot.  SO, let’s see- the worst event of terrorism on US soil, and the near death of one of their own- those are things worthy enough  to join together and be supportive about.  The budget, economy, healthcare (which nobody had time to review before voting), education (we’re dropping every year in the sciences and math), and just getting along aren’t worth enough.  Congress supports the destruction of this country whenever they get together- by inaction.  The survival of the country isn’t a reason to  work together.  Watching CSPAN is like watching a schoolyard nanny-nanny-boo-boo contest.  They get nothing done that actually matters.

I have no reason to think they’re going to act like adults in Washington, D.C. any time in my lifetime.  This country will continue to fall apart, and with the lack of emphasis on general education in public schools, the next generation is getting zippo  to help them figure out how to get out of this.  Congress is a body of  elected civil war participants with words and inaction as their weapons.  The country is imploding, and pride is going to keep it moving in that direction.

I don’t identify with either party.  I’ve got relatives that think I’m so far right, I’m fascist- but that’s based on what I don’t want to hear about, nothing about any actual conversation to actually find out what I think (or make assumptions because of my personal spiritual views; I didn’t come from a cookie cutter, no matter what someone thinks). Come election season, I don’t want to hear about people’s political views.  I miss the days when those things were kept private, and didn’t color what someone thought of another person. Or destroy relationships. I’ve also got friends that make me cringe with thier intolerance about anything to do with the left- if it’s democrat it’s wrong. Period.  That is just as counterproductive as what they blame the other side for doing- because it’s the same thing.   I find it all quite repulsive.   I believe everyone should have political views just as strong as they want to…and I believe I have to right not to put up with them in social settings. There are groups to share common ideas, and I’m not in those groups.  Everybody wants to be heard, but nobody wants to listen.

The house has not only divided, it’s not much more  than crumbling rubble.  Can it be repaired?  I don’t know. But if those who ‘represent’ us in Washington, D.C. can’t get it together, this country is going to slide downhill even more quickly.  What took 236 years to build up will go down like a house of cards with the slightest winds.  Our allies won’t stick around a train wreck forever.  And for those of us here, who remember ‘good’ years, it’s going to be a very painful thing to watch.  This isn’t just about a presidential election- it’s about government growing their asses up and doing what’s right for the majority of the country in a way that is responsible and sustainable.  Or get ready for anarchy.

Forgiveness

It’s not about the other guy. It’s not about the person who has caused pain. It doesn’t mean that ‘presto’, everything is OK about what happened.  It doesn’t mean you condone anything that happened to you. It doesn’t mean you will ever have that person in your life. It doesn’t mean you go on as if nothing happened.  It doesn’t mean that you have to deny your feelings about what they did. It doesn’t happen overnight. It doesn’t mean you have to do it perfectly all at once.

Forgiveness means you don’t let that person continue to run your life through frequent thoughts about them.   It means that you let go of wanting more revenge. It means you let God have the final say in how that person is judged.  It is an act of obedience as described in Matthew 7 (Bible). It’s about the relationship you have with God, not the perpetrator.  It means that you can turn over the feeling that the perpetrator stole your life.

Forgiveness is not a feeling- it is an action and choice.  The feelings come later. Forgiveness takes the person who hurt you, and moves them out of the forefront of your life. Forgiveness allows you to move forward.  It takes the painful events and people and puts them where they belong…in the past.  🙂

But first, have you forgiven yourself for anything you’ve done to impede your life? 

Letter to My Oncologist

First of all, I can never express enough gratitude and appreciation for what you did to treat the leukemia I was diagnosed with in 2010.  I’m thankful to God for your skills and incredible knowledge that helped to save my life.  Your awareness of the latest treatments for acute promyelocytic leukemia is wonderful .  I’ll always be thankful for that.  I often wish I had the chance to find out more about Iran from you. I’m sure you could tell me things that I’d never know from a book or documentary.  Because of you, I’m more interested in TV shows that focus on Iran, as I have respect for you and your skill as an oncologist; I want to know more about where you’re from. 

But I feel so misunderstood by you when it comes to losing the weight I gained during chemo.  Every single appointment revolves around my weight, and I’m really sick of it.  I’ve told you about my history with eating disorders, and while I’m aware that you don’t specialize in them, you must be aware of the nature of EDs.  The only time you backed off was when I was in tears trying to explain that I KNOW I need to lose weight. Nobody beats me up more than I do over my weight.  It is painful to hear it from someone who doesn’t know me aside from the leukemia.

Did you have to openly chastise me in front of the med student?  Up until then YOU had said that the weight gain was a side effect of the chemo. When I said ‘chemo weight’ and you told me “don’t you blame the weight on the chemo” when the med student was there, it was confusing and shaming. Was that for the med student’s benefit?

When you thought I was depressed, as in clinically depressed, you backed off. I’m FRUSTRATED.  You backed off that day when you saw I was upset.  But yesterday, when I had no outward signs of being bummed out, you started in again. I’m not going to keep showing up to hear about my weight  from a doctor who doesn’t deal with weight issues.  Not gonna happen. You deal with the cancer. Period.

You suggested I go to the YWCA to swim. Do you understand that heated pools trigger the dysautonomia?  I wear an ice vest to appointments, and that didn’t occur to you?  Well, I guess that’s understandable since you don’t treat dysautonomia.  You don’t know enough about me to know that I can’t walk unsupported for very far. I do OK in my apartment, but if I go to the store, I need the cart for support.  I was using a walker IN my apartment up until the day I was admitted to the hospital for that first admission when the leukemia was diagnosed. I had a partially torn ACL and medial meniscus in my left knee; you didn’t know that. It never got fixed, and I’m not sure how well it healed since it still hurts now and then. I was supposed to get a knee replacement done.

You asked about specific high calorie snack foods yesterday.  Do you have any idea how long it’s been since I had chips, cookies, cake, or candy in my apartment?  No?  I don’t either.  I don’t buy them.  The biggest treats I have are freeze dried apple slices that pack in a whopping 38 calories per bag.  Oh, that’s right- you told me to quit eating fruit.  Really?  Unsweetened fruit is a very basic food.  It’s on the diabetic meal plan I have that was set up by a registered dietician. I’m sure she got more nutrition education than physicians do (or her job wouldn’t exist). I’ve read about the basic nutrition classes that US med schools require. I’m not convinced that Iranian med schools demand much more with instructions to not eat unsweetened fruit.

I don’t need anybody to tell me I need to lose weight. Do you think I’m blind, or stupid? Or maybe you just think I don’t care and sit around eating bon bons all day. How insulting.  There hasn’t been a day in over 35 years when I haven’t considered my weight.  Are you even 35 years old?   I was badgered by my mom about my weight from the time I was six years old.  Then I took over, and equated my weight with my self worth for decades. It has been something that has haunted me for years, and I’ve worked hard to keep from letting it destroy my life. I don’t need (OR WANT) you to keep harping on me about my weight.  I know it needs to come off.

I’ve been an RN for 27 years, and a diabetic for 17 years. I know how being overweight is hard on a body.  I get it !  I’ve seen my regular doctor about it, and will see an endocrinologist next week. My blood sugars were never the same after chemo.  Is that my fault also?  I know that insulin is a problem when someone gains weight, and insulin stores fat.  I can’t not take it.  You don’t realize that I was 40 pounds lighter when I started on insulin; I wasn’t ‘fat’… somewhat overweight, but more than 100 pounds less than my highest weight. You don’t know about that, because you don’t do anything but tell me to lose weight over and over and over again.  You don’t know my whole medical history, or the daily struggles because of being disabled (I do pretty damn well, considering). You see fat and cancer.  Well, I’m in remission; maybe it’s time to have someone else follow me until the five year mark when I’m considered cancer free.  Someone else can do the yearly bone marrow biopsies.

Do you get after your obese staff members in the oncology office like you do patients?  Is that why nurses no longer go over the medication lists with me when I first get there, and why I found 16 errors on my list when I went over it today? Did the nurses leave?  Or are there techs in place of nurses now to save money?  I know that isn’t something you can control, but look around.  Don’t talk to me like I’m the fattest person you’ve ever seen.  I’ve been in your office and in the hospital enough to know that isn’t true.

I feel like less of a person every day because of my weight.  I know that’s not right, but it’s the truth. You aren’t helping that. You only let up one time (when I was in tears) because YOU had done so much to keep me alive and didn’t want me to be depressed.  It’s not about you.  I appreciate what you DID.  But what you’re doing is damaging.  I hate coming to appointments, and will continue to refuse being weighed at your office if I keep coming at all.  You did a great job with the leukemia while I was still being treated, but now, it feels a whole lot more like harassment.  Continuing to tell me repeatedly that I need to lose weight is so counterproductive I can’t even explain it.  It drives home even deeper that my weight is more important than anything else.  That is a great way to trigger something I never want to go through again. And something you really don’t know much about in my history.

I have to make a decision about whether or not I’m coming back.  I know my primary doctor can refer me to another oncologist.  I don’t want to keep seeing you three times a year just to be lectured about the obvious in a way that is demeaning and shameful.  Thank you for the incredible job dealing with the leukemia. But get back when it comes to the continued lectures about my weight.  I’m not going to do it.  When appointments are more of a sense of dread than they are productive, it’s time to hit the road.

Update: My primary doc is sending a referral request to another oncologist 🙂

Riding The Scale: The Eating Disorder Roller Coaster

Eating disorders don’t always fit into nice little diagnostic criteria.  There are as many variations of anorexia, bulimia, binge eating disorder/compulsive overeating, and combinations of those as there are people with eating disorders.  The diagnostic criteria give guidelines for when to apply a specific diagnosis, but they are often very limited in their scope.  If someone starts out quite overweight, but loses a significant percentage of that original weight, and has the behavioral characteristics of a ‘pure’ anorexic, they are anorexic for treatment purposes. But, the diagnostic criteria is often limiting, and the person doesn’t get the proper treatment. They are viewed as not ‘sick enough’. I’ve also heard of 78 pound adults who didn’t have ‘enough’ of the behavioral characteristics to qualify for help. It’s crazy.  Restricting bulimics may have generally normal eating patterns between binges, but then starve afterwards or overexercise  and not purge by vomiting or laxatives- and they are misdiagnosed.  It’s about the overall picture, not just the individual behaviors.

From the time I was eleven years old, I was a compulsive eater when I could get to the store on my bike and buy food. My food intake at home was restricted by my mom beginning at age 7 (she didn’t want me to be fat- as she perceived me to be). I was hungry.  So, when I started babysitting (which I did for neighbors at an early age), I’d save my babysitting money to go buy fruit roll ups and a cinnamon roll at the bakery next to the grocery store.  I’d eat the cinnamon roll on the way home, and sneak the rest into my bedroom by cramming the fruit rollups into my socks.  As I got older, and had more babysitting money, I’d get more stuff. I’d also bought a bigger bike with a bag on the back that held more than my socks did.  I was sneaking food before 7th grade.

 

When the imposed food restriction began, at around age 7.... not fat !

When the imposed food restriction began, at around age 7…. not fat !

During high school, I often joined in on diet contests, where I’d lose up to 14 pounds in a couple of weeks, usually ‘winning’.  Between high school and my freshmen year at the University of Illinois, I became anorexic over the summer when I was working at a church camp.  By the time that first semester started at the U of I, I was ‘hooked’.  My life was never the same.  At that time (1981), the ‘Feighner’ criteria was used for diagnosing anorexia, and was based on a percentage of the original weight being lost, along with behavioral characteristics. Then a ‘refusal to maintain minimum weight’ was instituted, so the criteria eliminated people from  for treatment eligibility.  BMI wasn’t around yet, so  specific weight wasn’t required for diagnosis until then.  That made even more people ineligible for help.

Bulimia is generally diagnosed on a person’s self-reporting, or the observations of close friends and relatives- not weight.  Other telltale signs are the calloused fingers/knuckles, eroding teeth, weight fluctuations, presence of laxatives and/or diuretics, and compulsive exercising.  Those can also be seen in anorexics who are of the ‘bingeing’ subtype.  Compulsive overeaters are generally thought to be obese, but that isn’t always the case.  Much depends on the frequency and activity level of the compulsive overeater/binge eater.

These diagnostic criteria are used for insurance purposes- not for any true benefit for the sufferer.  The insurance forms require a code in order for the treating therapist or treatment center to be reimbursed. It’s as simple as that. Money.  It’s not known how many people die from eating disorders that aren’t correctly diagnosed, because the criteria is so narrow and often weight biased.  That seems so hypocritical when the treating staff then tells the patient that it’s not about weight  (which it’s not- but the diagnostic criteria often depends on it).  But money will always win out over what is best for the patient.

I spent years in treatment for anorexia, and after one outpatient treatment center’s rules about no diet soda or food, my weight blew up to 300 pounds. I learned nothing about portion control (their model was to eat when hungry, stop when full; when someone starts out with abnormal eating habits, like having food restricted for them, the hunger/satiety signals don’t work).  Most people who know me from my hometown never saw me like that.  At some point, I lost over 100 pounds from a combination of undiagnosed diabetes, and then a bad relapse into anorexia.  Since I was overweight, I wasn’t diagnosed as anorexic, even though I’d refuse to eat more than 300 calories per day, used laxatives,  and walked like a maniac for miles at a time.  I was sent to treatment, and even though my ‘eating disorder inventory’ was purely anorexic, the treatment center basically lied to insurance and said I was bulimic  in order to get paid (I did use laxatives, but never binged during that time).  I wasn’t ‘thin enough’. But I’d lost 50 pounds in three months, and panicked around food.

I managed to get myself out of that last relapse after that ‘treatment center from hell’ did little but give me access to a good dietician (the only staff member of any use). She did help me start eating somewhat better (nowhere to go but up at that point).  After that, I read every book I could find on eating disorder recovery (professional books), and applied the principles and techniques to myself.  It took years, but I got better.  My weight settled out still in the moderately overweight range, but considering where I’d been, I was about 90-110 pounds below my highest weight.  I could live with myself.

Life went on, and I ended up with gastro-esophageal reflux disease (GERD), which was very uncomfortable before being diagnosed, and I lost about 30 pounds unintentionally. It was ‘good’ weight loss, but it was because of a disease process, and thus ‘abnormal’.  The GERD got treated, and my weight went up a bit, but by that time, I’d gotten used to eating one average meal over the entire day.  That was my new ‘normal’, and while it wasn’t good, it wasn’t based on any eating disorder behaviors. I was even putting a tube from my nose into my stomach every night to supplement with diluted liquid nutritional drinks to get more protein and fluids into my body; I never would have done that during active eating disorder relapses.  My doctor knew what I was doing, and initially she wasn’t that thrilled with it (she also knew I was an RN and knew the safety measures to take, so didn’t ‘ban’ me from doing it- which would been pointless; I was trying to keep from relapsing, and would do whatever I had to in order to avoid another round with anorexia).

I was fairly stable for a while. Then I ended up with leukemia in 2010.  The initial induction chemo caused ‘bad’ weight loss (even though I was technically overweight), and muscle mass loss.  When I got done with that, my eating was still strange, but I gained back the weight I’d lost in the hospital. Then I started arsenic (treatment for the type of leukemia I’ve got; in remission now), and after that, a year of 3 different pills. The chemo caused weight gain; I remember that first week on arsenic when I was in the hospital, and overnight my ring didn’t fit from fluid weight gain. The pills also had weight gain listed as a side effect.  My blood sugars went nuts (I’d been diagnosed as diabetic in 1995), and I was needing MUCH larger doses of insulin to keep from requiring hospitalization for high blood sugars. Insulin causes weight gain.  Chemo ended, and even a year after the last dose, I’m still holding onto the weight even though I’ve tried to lose it.  Calorie counting, high protein, meal planning, etc.  It’s not working.  Oh, and did I mention I’m pre-menopausal?

So, I’m in a position now of needing to lose the weight I gained, but not get triggered back into unhealthy habits from the past.  I’m very limited physically now, so exercising is a major struggle.  Doing laundry hurts.  I haven’t been pain free since 1996 when I was diagnosed with fibromyalgia.  I also have dysautonomia which is made much worse by elevated temperatures (including increased activity- messing with the car battery yesterday had me getting to the point of ‘low’ symptoms; much more of that, and I would have been ‘out’ for the rest of the day). I’ve got several bone spurs on my spine, and degenerative joint disease. My right lung has scars from many, many pulmonary emboli in 2007.    It’s a major problem.  At this point in my life, I’m obese by the numbers, and when I see photos of myself, I see the face of one of those orangutans with the huge ‘chin-neck’.  Physically, losing weight is very important.  I love jewelry (rings and earrings, not so much the other stuff), and want to fit into my rings again.  I want to be healthier.

I just need to be very careful not to end up back in negative territory.  I’ve been up and down the eating disorder roller coaster repeatedly.  I’m not ‘eating disordered’ at this point- the weight had a start point during chemo- not because of overeating. My dad comments that I eat vicariously through the Food Network shows and eat ice (which is NOT how I eat- LOL), but he notices that I’m not overeating, and is a bit bummed that I don’t have better snacks around when he comes over.  Thirty-eight calorie freeze-dried apple chips aren’t his bag 🙂

I’ve been somewhat browbeaten by my oncologist about the weight loss, and I’ve explained my history of eating disorders.  I don’t think he gets it at all.  But I’ve got to protect myself from anything that leads me down that familiar, dangerous path.  I see my regular doctor, and will be seeing an endocrinologist for the crazy blood sugars. Something happened to make those crazy even before I gained the weight during the entirety of the chemo; the added pounds now make insulin work less effectively, so I need more insulin.  It’s a vicious cycle.

I’m doing what I can, emotionally and physically.  I have to focus on health, not numbers.  Medicine likes numbers.  For someone with an eating disorder past, numbers are hell.  They have hooks that snag me back into that dangerous area of seduction.  I have to be vigilant, but still get the job done.  Most of the time, I feel incredibly misunderstood.  Like I’m hanging onto this weight for the heck of it.  I’m not.  😦  I want to feel better, and not like I’m lugging around a 40 pound bag of rock salt everywhere I go.  I want to fit into my older shirts, and not look at my legs and see tree trunks.  I have motivation- to stay healthy, but still get rid of this weight.

I’m tired of explaining that I am actively trying to lose weight to my oncologist. I no longer agree to be weighed there. I won’t discuss it with him; it’s not his job to keep harping at me about it. But he keeps bringing it up, and spends the majority of the appointment talking about how much I need to lose weight.  I’m not stupid.  He’s kept me alive with the chemo for the leukemia; job done.  This has to be done carefully, and with the doctors who can really help me, not just keep telling me I’m fat (not in those words, but it means the same). I KNOW I’m fat.  I’m not blind.  And I’ve got a history that could be repeated if I’m not careful.  That is my job, and I won’t let up in efforts to lose the weight in a healthy manner.  There is nothing that is worth going back into relapse mode.  Once ‘it’ kicks in, it’s not a matter of turning it off when I hit my desired weight.  It’s insidious, and I’m not sure I’d survive another relapse. I’m not a teenager, or in my 20s anymore.  I don’t ‘bounce back’ anymore- stuff just adds up.  I have to go slowly, so I can be around to enjoy being at a more healthy weight.

Mandy Had A Seizure or Fainting Spell Today

Flashbacks of my last schnauzer, Hannah.  Now Mandy.  I’d just come home from picking up some things from the pharmacy, and my dad was helping me get things into the kitchen. Mandy got all excited, and passed out.   I turned around, and she was on her side, legs stiff but twitchy, eyes rolled back… She let out three long, eerie cries before she got still, and I picked her up. She was limp in my arms as I carried her to the couch where she could be off of the floor, and wake up.  By the time she was awake and back on her feet, nudging my dad to get her ears scratched, it had only lasted 90 seconds at the most.  It felt like a lot longer.

For a few seconds when I picked her up, I thought she might be dying in my arms.  Her breathing has been ‘off’ the past couple of days, and I’d already made an appointment for her at the veterinarian for Friday (of course, today’s episode happened after office hours).  There hasn’t been anything specific, just ‘different’. She hasn’t been in any sort of distress (it’s  probably bothering me more than her, as her activity level has been unchanged). I think her water pill dosage needs to be adjusted (up). I’ve been doing some ‘chest percussion’ which loosens up any fluids so she can cough them up. She has coughed a few times, which can be a  sign of the heart failure progressing, but so far it’s not affecting her activity level. At all !

She’s still alert and interested in everything I do.  I look down at her sometimes and am in awe that that sweet little dog looks up at me, and wants to be with me no matter what.  And I want her around as long as possible. But I also have to have a  game plan for when it’s ‘enough’.  It has to be what is best for her.  I had some parameters for Hannah’s ‘signs’ that it was over, and when she stopped being interested in her beloved grapes (before I found out they’re bad for dogs), that was it.  Time to let go.

Mandy at 8 weeks old

Find Mandy !

I’m hopeful that Mandy will be around for a while longer, but nothing in life is a guarantee.  Besides death.  I’ve had her since early June 2001.  She was a little bit of a thing, and had me wrapped around her ‘paw’ immediately.  Since I’ve been on disability, we’ve been together nearly 24/7.  She is the ‘constant’ living thing in my life; I have little face to face contact with people. I don’t leave home often because of medical issues, so it’s just the two of us most of the time.   I have to be thankful for the wonderful years I’ve had with her, and keep looking at what’s in her best interest.  I love her too much to do anything less.

Mandy at 11 years old, 2012

In the meantime, I can’t take anything for granted.  She’s my best friend.

Mandy- 2011

Long Term Disability

As a registered nurse, I saw people on a routine basis who had life-altering events happen to them. They were my job.  Many who were of working age were permanently and/or catastrophically injured.  Others had injuries that eliminated them from eligibility to pursue their desired careers.  I saw bad stuff.  Because of that, I always insured myself to the max when I began a new job and was in the process of selecting benefits.   I never imagined that my life would become what it has, but the decision to get long term disability insurance has been extremely worth the premiums I paid when I was working. If I hadn’t purchased LTD, I’d be in a way different situation than I’m in now.  My monthly income is approximately 2/3 of what it was when I was working.  Without LTD, it would be less than half. 

I wasn’t eligible for short term disability, or I would have bought that also. I had to cash in a 403B to make it the 3 months until LTD kicked in. Even with that, I had some help with a couple of months’ rent.  Diabetes was the problem with getting STD, which had nothing to do with why I ended up on disability.  Now, with the healthcare reforms, I’m not sure if disability insurance falls under the mandatory acceptance of pre-existing illnesses, or if that is just for medical insurance.  I always tell people to get whatever insurance they can; nobody knows what can happen.

When I was first having problems with dysautonomia, I had some major issues with staying employed. I managed to do so, but it wasn’t easy.  Many times, I would either lose consciousness, or my blood pressure and heart rate would become so abnormal (either too high or too low) that I’d become unable to function properly.  The job I was at when the dysautonomia first surfaced was at a drug and alcohol rehab facility.  I was the only RN on campus when I worked, so being conscious was required… 😮  I often had gait problems (couldn’t walk straight), and my speech and reaction times were altered.  I looked like I belonged with the treatment side of things- not the help.

My boss at the time wasn’t a great communicator, but was very fond of ‘contracts’ as if the diagnosis was somehow amenable to behavior modification (medical nursing wasn’t his forte). That irked me to no end, but I really liked the job and my co-workers.  I fought like crazy to stay employed, and fortunately had a wonderful neurologist in that small town. She was familiar with dysautonomia (most people haven’t heard of it, including doctors in ERs or general practice), and knew which medications to try after the electrophysiologist confirmed that my tilt table test was positive (my blood pressure dropped to 44/16).  My neurologist started me on Neurontin after atenolol, Norpace CR, Depakote, and propranolol alone hadn’t helped, OR had made things worse.  It was a nightmare of trying new meds, only to have a week or two when things seemed different (in a good way), and then headed south.

Neurontin bought me eight more years of being employable. That was huge. I did end up leaving that  drug and alcohol rehab facility, but it wasn’t because of my medical issues. There were major safety issues with the detox unit at the time, and I wasn’t willing to keep waiting for disaster to happen.  It was too stressful, and that didn’t help my blood pressure or heart rate.  I was lucky to be an RN in a town that often hired RNs from out of the country to fill in the gaps; I got another job in about 45 minutes from application to the phone call offering me the position at a nice nursing home.

When I worked at that nursing home in the small town in the Texas Hill Country, I found that the administrator and director of nurses were willing to work with me, and saw what I had to offer- not just my ‘bad days’.  I was loaned a cushioned mattress overlay to keep in my office, so when I felt bad I could safely lie down and sleep it off (off the clock), and then get up and resume my work when I was doing better. (I did MDS assessments for Medicare patients- desk jockey).  By the time I worked in the general hospital in the same town (where I’d worked before, and knew who I was working with), the Neurontin had really helped to stablize my condition well enough to work 3 12-hour shifts on weekend nights on the general surgical floor.  It went well; I was encouraged.

About six years into that eight years of employability, I moved back to the Midwest where I’d grown up.  I started on a pediatric floor, but it wasn’t long after starting that job when the symptoms became a major problem.  The first time happened when I was  in my car on my way to a shift, and my heart rate was in the 140s, which meant that I had little time before it nosedived, and I’d pass out. I knew that I’d have to pull over if my vision started to ‘tunnel’ and my hearing began to dim. I talked to myself, “you’re going to be ok”, “you’re almost there”, etc.  I was almost to the hospital, and managed to make it to the floor where I worked, and get help from my co-workers. They could tell immediately that something wasn’t right.  I was still conscious when they took me to the ER, but I don’t remember much of what happened.

I turn blue during these episodes, and then become cold and clammy, but my face becomes extremely red (almost a bluish-red) and very hot.  At some point, I fall into a deep sleep, and become white; I’ve been told I ‘look dead’ several times.  I was back in contact with neurologists and cardiologists, and one month long monitor showed that I was having  PVCs (that I could feel), which required medication adjustment. It seemed to help, but I still wasn’t doing well. Initially the cardiologist poo-poo’d my reports that I felt something. Then she saw the monitor report.

I was working with sick babies and children. Some of these babies were four pound preemies that were moved from the NICU because of a boom down there (had three sets of triplets born one week, so they were going nuts in the NICU).  These kids needed constant monitoring, and I was feeling less stable even picking them up.  It didn’t help that the temperature in the halls was kept over 76 degrees, and one nurse refused to agree to me having one area (out of the way as needed) where I could lower the thermostat; that was a huge problem as heat intensifies the symptoms. I could have raised a stink with the Americans With Disabilities Act, but even at home in a controlled environment I wasn’t well.  There were many nights when I didn’t make it through the shift, and was either taken to the ER in a wheelchair, or sent to lie down until I could drive home.  I needed to leave.

I went to work at another nice nursing home; I figured that pushing a med cart, and having little direct care (and risk of dropping someone) was a better option. I was soon put into another desk job (doing MDSs) because I’d done them before.   I did well enough to pass muster for a while, but again began having the episodes where I’d change colors, and eventually pass out, or fall into a deep sleep for hours.  Some of what was going on was epilepsy (something I’d had for decades by then, and has been diagnosed as temporal lobe epilepsy).  There were times when the symptoms seemed to overlap.  All I knew was that I was deteriorating.  Towards the ‘end’, I was being sent out by ambulance after someone heard me hit the floor, saw me pass out, or heard the ‘thud’ in my office. I don’t remember any of the actual ambulance ‘rides’. I was sent out 10-12 times over a 2 month period. I usually came around sometime after getting to the ER.  My boss told me it was time to tell my doctor about the need for disability (and she helped with whatever information my doctor needed, and I’d consented for the information to be exchanged).  Human resources got me the forms for LTD- which wouldn’t go into effect for 90 days.

I was horrified not to be working.   Nurses don’t just stop being nurses. In my opinion, it’s a lifetime frame of mind.  I still look at people’s veins on their hands when I’m in the line at the grocery store, and size up the ease of IV insertion. I still AM a registered nurse; I do my CEUs and renew my license every 2 years. But I’ll never work again.  So much more has happened since going on disability that has eliminated my chances to work again. I tried to go back after about 7 months, but I couldn’t do it.   That saddens me every day.  I’d figured I’d be clunking up and down the halls of some healthcare facility until I was at least 62 years old. I didn’t make it to my 40th birthday.   But I’m very thankful that I’ve been able to remain in my apartment in a decent part of town. Without LTD that wouldn’t be possible.  I have a lot of premiums to pay because I’m now on Medicare (about $100 for ‘Part B’, $225 for the supplement to pay what Medicare doesn’t, and $70 for the ‘Part D’ prescription drug plan- and any co-pays).   My LTD check roughly covers rent and my premiums.  That is a major part of my expenses.

The point to all of this is that nobody knows what will happen to them.  Whether it be illness, injury, or accidents with life-altering consequences, life is unpredictable, and we’re not guaranteed to get through it unscathed.  I never saw this in my future when I started out as an idealistic 21 year old RN in 1985. But this is what it turned out to be.  I’d encourage anyone who has the chance to get STD/LTD insurance (preferably both, but LTD for sure) to get it.  Skip a night out once a month.  That may be the difference between living in a housing project or staying in a familiar place while dealing with a ‘new normal’.   Disability is structured as such that you won’t qualify for many  additional assistance programs. The ‘extra’ income from an LTD policy makes an indescribable difference.  Things are still tight- but I get by.  I’d much rather be working, but I’m thankful that I’m not in worse shape.