Suicide Secrets- Time to Spill It… Secrecy Just Makes It Worse

With all of the suicides of notable people in the last couple of weeks, it has stirred up my own battles with depression and suicidal thoughts.  Not to worry- nothing ‘serious’ has gone on for years.  When the physical pain becomes more harsh than usual, or there are more health scares, I do think about the ‘what ifs’ of a longterm and debilitating illness, but I’m nowhere near that.

“Flaws”  were never discussed in my home, even after I’d talked briefly with our pastor about suicide when I was in 8th grade. There were some hard times in high school.  An English teacher that I did not have as a teacher reached out to me, and did an old, quick depression assessment.  I didn’t do well, and she told my guidance counselor who’d known me since I was two years old.  He talked to my dad (the principal of said high school) , who was furious that I’d made some “not perfect life” comment to those outside of our house.   I was given strict instructions to never tell anybody that anything was wrong.  Verbatim:  “If someone asks you how you are, you say “fine”.  I don’t care if you have an arm dangling by a thread.  You are FINE.”  When I worked in psych and alcohol/drug rehab, “FINE” translated to ‘f-ed up, insecure, neurotic, and emotionally disturbed.   I guess I have been ‘fine’ a few times in my life 😉

Back to the suicidal stuff.   In my early teens, it wasn’t something I considered seriously (mostly because I was terrified I’d get in trouble, assuming I’d mess things up and survive). And I didn’t really want to DIE.  I just wanted to feel less confusion, fear, and emotional pain.  I felt a lot of pressure being the principal’s kid (some self-imposed, some overt instructions from my folks).  Then I went to the University of Illinois after a summer of becoming anorexic.  I was a mess.  That was the fall semester in 1981.  By the first couple of weeks  after Christmas break  in late January 1982, I was still a mess, with the anorexia getting worse, and being alive felt like torture.  With my brain starving, my thoughts were not ‘normal’, and dying seemed like the only way to make the eating disorder end.

By the first week of February 1982, I had a plan, a private dorm room, and the whole thing figured out- except I didn’t really want to die. Plan:  I would overdose on the tranquilizers I’d gotten to (presumably) make me less anxious about eating, involve some sort of booze, and go into my lockable dorm closet, lock it from the inside, and also make sure my dorm room was locked.   I had been mandated to see a university student health center counselor my first semester there, and I finally fessed up to her.  She had the university fire department take me to McKinley Health Center, where they ‘babysat’ me until an adult friend (for a long time, from church) could come and get me- I did NOT want to face my parents.  I was SO ashamed for not being ‘perfect’ enough.   There was a blizzard that made most of IL a skating rink that February, so it took a few days for everything to happen to get me to the hospital near Chicago.   Where my parents were waiting in the lobby (I hadn’t considered them needing to be there to sign me in, since I was on dad’s insurance).   They were allowed to see me, then ‘banned’ from any contact for a month until my assigned psychiatrist tried to sort out the family dynamics.

I wasn’t a teenage drinker.  I’d  tried a few things here and there, but I hated the whole going across state lines thing on Friday nights,  where the drinking age was 18 at the time.  But that fall semester of 1982, when I finally got to return to school, I was not coping well with feeling like  the designated nut job.  I tried SO hard to make it look like all was well, but it wasn’t.   I started going to bars and drinking 4-5 drinks in less than 2 hours, then stagger back to the dorm.  On September 2, 1982, I got  back from the bars, and was SO tired, but couldn’t fall asleep. I remember taking the prescription sleeping pills (from shrink I was assigned to at the hospital near Chicago).  I just kept taking them (there were 10 Dalmane 30mg capsules left, and I took them all), like some sort of automated prescription Pez dispenser was dropping capsules into my hand, that went to my mouth seemingly of its own accord.  I didn’t think about dying, but after taking the sleeping pills, I was told (and stomach contents confirmed) that I then went on to take 50 imipramine tablets.  No matter what was going on in my head, my body went into a 3 day coma.   My roommate didn’t notice anything alarming enough to call an ambulance until the day after I’d taken the meds on top of the alcohol.  I told her I was just tired until I couldn’t talk anymore.  I was told more than once that I physiologically shouldn’t have survived the type and quantity of medications along with the booze, and the length of time before my stomach was pumped.

I didn’t want to die.  I wanted the expectations to FEEL less intense (they weren’t imposed by anybody but myself at that point).    I’ve been in therapy for various things, starting with the fall of 1981.   I was stunned to wake up in the ICU at the same hospital where I’d been born prior to being placed for adoption.   The first thing I remember was someone putting an oxygen mask on me (then I fell asleep again), and a syringe going towards my crotch (at the time, I didn’t know that a syringe removed the water from the balloon of a catheter that keeps it from falling out.  I didn’t know I HAD a catheter… so that was awkwardly confusing).   I also remember not being able to follow the Saturday morning cartoons they’d put on the TV.

One therapist would ask me about suicidal thoughts, and told me she would NEVER ask me to give them up, since having that option helped keep people from feeling backed into an inescapable corner.  She would ask me to hang on just until she called me at whatever pre-determined day/time she came up with.  And that was helpful.   She never shamed me for essentially just looking for ways to not feel emotional pain.   I never liked “contracts” because I didn’t want to sign something I might not be able to uphold- but the simple verbal request to hang on was enough (everybody is different, and some folks need more supervision, so more formal contracts or even interventions and required hospitalization might be the first step some folks need).  At the very least, I knew that someone cared enough to take 5 minutes to call and see if I was OK the next day.  Sometimes, when things were chaotic in my head, that external reminder that I wasn’t alone was sufficient.

I hope someone reads this who is a survivor of someone who completed a suicide attempt, not surviving it.   You need to know that it isn’t about not loving family/friends enough to stay (or reach out).   In that state of mind, people truly do believe that the world (meaning their family and friends) would be better off without them.  It’s about not being able to imagine things ever getting better.  It’s a desperate, last-ditch attempt to find some peace.  But it’s not generally about not wanting to live.  It’s about not wanting to have to endure emotional pain that feels like endless torment.

Don’t be afraid to be blunt if you are concerned about someone.  Asking about suicide will not make someone suicidal !!   The best thing someone can do, especially if they don’t know what to do, or don’t have training in crisis negotiations, is just to listen.  Don’t judge.  No empty “it’s going to be fine”.   And NEVER “oh, it’s not that bad”- that just says “you don’t care enough to try and understand me”.    Let the person know that you realize that they are doing the best they can.  Let them know that you understand that their pain is overwhelming.   NEVER “I know how you feel”…. unless you are in a person’s head, and have had identical experiences and reactions to things, you have no clue.   Empty platitudes are not helpful.  Saying something like “how can I best help you?” is very helpful.   Letting someone know that you don’t have the answers, but will do what you can to help is SO much more helpful than someone who is clueless trying to help someone when they don’t take the time to really understand the situation, and can’t admit that they don’t know what they are doing.  If you feel like you are in over your head with someone who is suicidal, call 9-1-1.   If the person gets mad, they’ll either get over it or not- but don’t put yourself in a position to have unimaginable regrets if the person can’t hang on.

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.

Dieting With An Eating Disorder History

When I started Nutrisystem 80 days ago, I had some nagging concerns about how to lose the weight I’d gained on chemo without going nuts and ending up in a bonafide eating disorder relapse.  I’m not sure that concern ever goes away.  I haven’t done any purposeful eating disorder behaviors since 1996-1997 (it was a process), and no purging since March 1996.  Yet, there were so many years of my life, starting at a young age, when disordered eating was the only way I knew how to eat at all.  It was what I was taught.

I’ve lost 43 pounds in 80 days. That’s faster than the advertised 1-2 pounds/week on the Nutrisystem literature (and any healthy weight loss plan). I’m not purposely eating less than I’m supposed to- and when I tally the calories, fat, carbs, fiber, and protein (which is more for diabetic/insulin reasons),  I’m not compelled to cut back to crazy low numbers.  There have been days when I don’t eat all I’m supposed to, but it’s because of headaches and the accompanying queasiness.  I think some of that is because of the sucralose/Splenda in some of the Nutrisystem products (they don’t use aspartame/Equal)- so this week I called Customer Service, and was able to arrange to send back all of  the Cinnamon Buns and some of the Honey Wheat Bagels (had to do with the 30-day exchange policy).  They are sending me some Granola Cereal- no artificial sweeteners, low fat, and good protein (for granola).  I really liked those Cinnamon Buns. 😦  But, I’ve had a headache every day since I started eating those with the last order. It has been a constant 6 day headache.  I’m still not sure why bagels need an artificial sweetener.  Sure, the yeast needs honey or sugar, but adding sweetness just to make them sweeter?  Yuck.  They did still work with the salmon spread I came up with, but I’ll just have to find a store bagel that has good fiber and protein.  But I digress.

I still have the body image issues. When I look in the mirror, I don’t see 43 missing pounds. I know my clothing fits differently (or in the case of 3 pairs of shorts, just falls off).  I know the ‘numbers’ say I’m losing weight, but I don’t ‘feel’ it.  My ‘old’ pajama bottoms fit again. My t-shirts fit better. My bra doesn’t make me look like the Michelin Man.  But, I’m still waiting for my rings to fit again.  And I’m waiting to see the change in my appearance.  I took ‘before’ photos, so I will have something to compare myself to.  I hope I can see it.

I’m not sure how to see myself normally.  That part of the recovery puzzle never did work itself out.  My dad asked me how much I plan to lose, and I don’t know. I told him I’d know when I got there (which can be a scary thing to think about- those with eating disorders are never happy when they reach one goal). I have a BMI number I want to get under, but it’s not anywhere near unhealthy thinness.  When I was in the worst part of any given eating disorder period, I thought that the low 70s was a perfectly reasonable weight to aim for, at 5 feet 6 inches tall.  I do know that anything below a BMI of 18 isn’t good- and for my body type, I don’t want to go below a BMI that is much higher than that. I know I have to be careful not to keep looking for some ‘magic’ number- and that I have to be vigilant about not getting into numbers games in my head.

To look at me now, ‘eating disorders’ (the ‘thin’ ones)  are not what someone on the outside would even consider being a issue of mine , but I’ve been nearly 100 pounds heavier than I am now, and 70 pounds lighter during my adult life (18 or older). Between the relapses with anorexia, I’ve also been a compulsive undereater- people don’t talk about that. It’s not quite as bad as the internal demands of anorexia,  but the focus on food and weight is still abnormal enough to affect functioning around food and eating; social events with food are very difficult, even though the diagnostic criteria for anorexia aren’t all there.

I ate a lot when I first moved away from home in 1985, and no longer had the imposed restriction of my mom, or the original ‘diagnosed’ anorexia onset in 1981.  I’d been through inpatient psych hospitalization, and was ‘allowed’ to eat.  That led to unhealthy eating, and what I don’t really call bingeing, but more like finally being set free from a noose of thinness obsession.  My metabolism had to be messed up from so many years of dieting and starvation, which just made the weight pile on faster. “Normal” intake equaled weight gain.  I got morbidly obese- which is like a death nell for someone who has been anorexic/bulimic.  I relapsed a couple of times before the last one in 1995. Each time got worse faster.  The last one was really bad. But only those who saw what I was doing knew that I was in trouble.  To most people, I was too overweight to even consider that I was starving.  I lost 50 pounds in 3 months, and a total of 120 in about a year.  Some of that was from diabetes before it was diagnosed (weight loss is a symptom of undiagnosed high blood sugars), and then after the diagnosis I became very obsessed.

Now, I’ve lost 43 pounds in 80 days.  I  let my doctor know (that’s definitely not something I would have done during the ED years).  I know that the huge reduction in insulin is probably also a factor in how ‘easy’ this has been (when nothing I did before Nutrisystem helped budge the chemotherapy weight).  I am eating more protein than before NS.  The glycemic index of the food is much better.  Even the ‘junk food’ on NS is formulated to be healthy.  The Cheese Puffs, cookies, pretzels, and candy bars are tasty enough to order after I reach my goal weight.  It’s hard to find 8 gms of protein and 6 gms of fiber in 1 ounce of regular pretzels.

I still have a problem with feeling full. I loathe that feeling.  There is a lot to eat on NS.  Most days, I don’t get it all in, but it’s not about the numbers game- it’s about feeling really uncomfortable.  Gas-X has become its own food group.  On ‘headache days’ (whether from sucralose or not- I have chronic headaches), it’s hard to pack in every meal.  But on days when I don’t have the headaches or other pain, I like the NS food.  NS food is quite good for ‘diet food’.  I go off plan now and then and have restaurant food (and it hasn’t affected my weight loss). Some people on NS (per the discussion boards) must stay very rigid so they don’t end up in long binge cycles- kind of like alcoholics can’t have a drop of booze.  I understand that from my years of working drug/alcohol rehab, but I have to be less obsessive, and go ‘off grid’ now and then to keep some sort of balance with the real world.

One of my other reasons for wanting to lose weight (besides the chemo weight) is that I’ll be 50 years old later this year.  I didn’t want to hit that milestone at such an unhealthy weight.  I want to stack the odds in my favor for the ‘senior years’ (geez, I’ll get my AARP card soon- when did THAT happen?) 😮 . I plan to eat restaurant food on my 50th birthday in November, and I can pretty well guarantee there won’t be a carrot on the plate 😀  And I will have cake.  I don’t normally enjoy restaurants (mostly from the heat intolerance and dysautonomia), but I’ve been told the sky is the limit by my dad, since a 50th birthday doesn’t come around but once.  I don’t feel like I’m almost 50… no husband, kids, etc- I guess I bypassed some of the other milestones in life, and have a different frame of reference for a lot of things.  But, I don’t want to be fat when I turn 50.

So, I’m doing well on Nutrisystem, but I don’t think I’ll ever feel like a ‘normal’ eater.  I think that the risk of anorexia is always there once it’s ever taken hold.  It takes over very subtly at first, and then everything crashes and burns.  Being aware of this has been helpful.  The ultimate goal of being healthy has surpassed the desire to be ‘skinny’.  That part of my brain has finally grown up.  But the part of my brain that remembers the horrible years of torment from anorexia, bulimia, and other variations of those doesn’t want to get ‘close enough’ to the edge.  Ever. It has scarred me in many respects.  I guess that’s probably good.  Now to get rid of the rest of this unhealthy weight, and then maintain it like a ‘normal’ person.  I’m more than half-way to my random goal, set when I started NS  (I had to put something down) but people adjust them once they reach their original goals all the time.  I’ll just have to see what feels right.

Limitations Don’t Define Who I Am

My disabilities don’t make me who I am.  I don’t want someone else’s life, because that wouldn’t be me either.  I wish many things weren’t the way they are, but I don’t want to be someone else.  I’m getting very close to being 50 years old, and I’m OK being plain old disjointed, imperfect me.  I can’t be anybody else.  Trying to be someone else wastes the time I have.

I’m not able to do many of the things that I used to think defined me. I’m not able to work as an RN, and I miss that more than I can describe.  I miss taking care of other people in the way that gave me so much satisfaction.  I treated them as I’d want to be treated.  I learned how to empathize with their pain, and in turn be a better human being.  I miss those moments with someone who was going through something life-changing, and being able to offer some level of comfort.  But being a nurse doesn’t really define me. I used to think it did.  It’s a huge part of me, but it’s not all of me.

I’m diabetic, epileptic (temporal lobe nocturnal seizures), a cancer survivor (acute promyelocytic leukemia), I’ve got fibromyalgia, lung scars from multiple pulmonary emboli, bone spurs in my neck, chronic headaches, severe muscle spasms with any lifting or repetitive motion (groceries, trash, laundry), and dysautonomia, which causes severe heat intolerance, blood pressure and pulse changes, and very limited activity tolerance.  And none of that defines me.  It’s stuff that I have to deal with on a daily (sometimes hourly) basis…but it’s not who I am.

I had eating disorders for years (decades), but anorexia and bulimia don’t define who I am. I thought they did, and when I was in early recovery, I didn’t know who I would be if I wasn’t ‘the one who won’t eat’.  But all eating disorders did was mask who I really am.  They took away my ability to live normally and interact with people in a way that really put me into any sort of relationship. My main relationship was with the eating disorders. Nothing happened in my life unless I thought about how it would affect my ability to avoid calories.  That was my primary motivation in everything; any sort of real friendship was put way down on my list of priorities- though I didn’t see that at the time. It was a very selfish time in my life that I’m not proud of.  Eating disorders only steal time- they do nothing else.

Being a rape survivor doesn’t define who I am. It has had a huge impact on my life to have survived six hours of continuous sexual torture.  It changed how I interacted with people, and my ability to allow anybody to get very close.  But it’s still a relatively small part of my life… six hours changed a lot, but they didn’t change who I am at my core.

So, who (and what) am I?  I’m an average human being who wants to be accepted and have people in my life who accept me, warts and all.  I loved (and miss) all of my dogs, and am looking forward to getting a new puppy (and am waiting for her to be conceived at this time; I know where she’s coming from).  I care about people, and my heart goes out to those I see on the news, and hear about on FaceBook.  I miss my ‘old’ life before disability, but am learning to accept what my reality has become.  Most of all, I love God.  Without Him, I wouldn’t be here.  The consistency I feel when I read through the Bible (especially Psalms and Proverbs when I’m feeling badly) is what I can depend on much more than I can with human beings, who are fallible just as I am.  Every day is a chance to just ‘be’. I’ve had times when I thought that I would die, so life is precious.  I realize that in spite of things that have happened, I’m very fortunate in so many ways.  Some days, I don’t remember that as much as other days.  But I do understand that I’m here for a reason, and I’m thankful for that.

 

 

Suicide Attempt: Those Who Knew Never Asked…

…why I attempted suicide in September 1982.  I later found out that it was a big secret from  family (or close friends) who seemed like they’d be obvious to inform (as in why I’d suddenly dropped off the face of the earth and was no longer at the University of Illinois, Urbana-Champaign campus).  And, for the most part, it seemed  like nobody really gave a rats tail.  I did have an uncle who had visited me at the psych hospital the semester before, God bless him.  He wasn’t afraid to see whether or not I was drooling in a corner somewhere (I wasn’t – in fact, back in those days, I was downright intact compared to many there, and it was a private facility in the days where  you either went to a state hospital – like ‘One Flew Over the Cuckoo’s Nest’- or to a private facility that was essentially a hotel with nurses and a lot of pills; there were no ‘treatment centers’).  There was the friend of another uncle who befriended me (strange situation).  But that was the extent of asking me WHY I was there.  My parents were the most silent.  Nobody ever asked me why I’d tried to end my own life.

That seems a bit odd. Maybe it was some sort of bizarre form of ‘manners’ to not ask.  But if there’s ever a scream from a mountain top that someone needs to say something about SOMETHING, it’s a premature, unnatural attempt to die. During that time, my mom was going through radiation, post-mastectomy, and I’d been dropped off at school a week early to accommodate her radiation schedule (I was fine with being at school early- though the dorms were kind of spooky without everybody there- there were about 10 of us in a 12-story dorm).  I don’t remember dealing with my mom’s cancer at all. I’d been in such a rush to ‘look normal’ after having to leave school the semester earlier… I know I’d never have wanted to ’cause trouble’.

Looking back, I’m not sure I know all of the reasons for the overdose, and only remember the first part of it when I mechanically took sleeping pills one after another with the only conscious thought being how much I just wanted some rest.  I don’t remember any actual ‘death wish’. I  ‘just’ wanted relief from so much pressure of being back on that campus after being ‘removed’ the semester before because of deteriorating anorexia, bulimia, and depression with a suicide ‘plan’ (that was pretty dang lethal).  I was trying SO hard to ‘look OK’, and that pressure was unbelievable. SO when I started taking those sleeping pills, one after another, I was only wanting relief from the pressure. I had intended to wake up, from what I remember. When I woke up after nearly 3 days in a coma, I was confused.  I also didn’t believe that they’d found the remnants of fifty antidepressant tablets when they pumped my stomach.  I don’t remember that at all. I eventually sent for the hospital and university health center records.  I needed gaps filled in.

I also wrote to my roommate years later, who told me that I’d been out at a local bar (underage), and came back to the room drunk before dinner. She hadn’t seen me actually take the sleeping pills (I do remember her being in the room, but I was sitting at my desk, my back to her; being drunk explains the impulsivity and lack of planning for consequences of my actions- and why the drugs ‘took’ so intensely). But she said I went to sleep and didn’t get up the next morning. She said I’d mumbled something about not going to class because I was so tired. When she got back late that afternoon, I was still out of it, and she couldn’t wake me up. At all.  She got one of my floor-mates from the last semester who knew me better, and she looked at me and called the ambulance (about 24 hours after taking the pills…it’s amazing that I survived that long). I was taken to the university health clinic, who sent me on to a regular medical hospital/trauma center with a blood pressure that was nearly meeting in the middle. (Not good).

In looking at the records, my ‘coma scale’ couldn’t go any lower. I responded to nothing. Zip.  And, understandably- but frighteningly, I remember none of that. I don’t know when I took the bottle of antidepressants.  I don’t remember having my stomach pumped (and used to get so uneasy later in my nursing career when OD patients were often ‘threatened’ with having their stomachs pumped as some sort of punishment; they were seen as deliberately causing unpleasant work for the ER staff who had ‘real’ patients to take care of- those who hadn’t put themselves in that position- never mind that the person was in so much emotional pain that they felt they had no other options).  I never told anybody that I planned to overdose. I don’t think I knew I would OD.   I’d been trying to fit in and be social (not something that came easily outside of my home church group setting). I wanted to be in school.

I do remember asking the nurse in ICU what I had been wearing when I was brought in, as that would tell me what day it had been. I’d been brought in on a Wednesday.  I had been wearing a red gingham shirt and overalls- I did remember putting those on on Tuesday- brought to the ER on Wednesday.  I probably looked like a dead farmer.  I was very close to not making it.  I sent for my medical records years later, and my vital signs were very bad- as in not much difference between the top and bottom numbers of my blood pressure, a heart arrhythmia, and very slow respirations.  I was given some resuscitative drugs to maintain my heart rhythm, and fluids to maintain my blood pressure, and over a few days, I woke up.  Freaked. Out.

My first recollection is of someone moving an oxygen mask to ask me a question, so they could see me talking.  Then fade to black again.  Then, I clearly remember a nurse going towards my crotch with a syringe (no explanation that she was removing the catheter). I’d never been in a real medical hospital before. From there on, it was a bunch of blips of memory, finally getting back to a ‘slow’ normal. I remember being very confused by the Saturday cartoons.  I’d been propped up in a chair with the cartoons on (at age 18?), and it was hard to follow them. Bugs Bunny was too ‘deep’. For a while, there was concern about permanent brain damage, and the psychiatrist I went back to was surprised I wasn’t impaired.  I also remember the charcoal diarrhea… I didn’t know the ‘rules’ in ICU about not disconnecting the EKG leads without help before getting out of bed ( I didn’t want to bother anybody), so it would look like I’d flatlined when I was just in a hurry to get to the bathroom.  They didn’t like that very much. I felt the bruising on my breastbone where I’d been ‘knuckle-rubbed’ to wake me up, and the scratchy feeling in my throat where tubes had been.  And it all confused me.

While I don’t remember a lot about the overall overdose, I do know I didn’t want to leave school! I wanted to do well !  I wanted to show my friends that I was OK ! (And with that, I had some desert property in the Everglades for anybody who was on board with that idea). I didn’t want to be a failure.  I have to admit, that at 18 years old, in an ICU room in Urbana, IL, I had a serious meltdown when I was told I’d be sent back to the nut farm I’d spent February through mid-April earlier that same year.  My parents had been called (that was like ramming a dagger into my heart- how could they call them? I especially didn’t want to disappoint them… but  how could they NOT call them?  I was a huge liability at that point). Everything was falling apart.  I was hysterically crying when I saw my mom and dad show up later that day (?Sunday- no cartoons, and mom had to be at radiation on Monday) after clearing out my dorm room and selling my books back to the bookstore– for some reason, losing those books was almost like the ultimate ‘proof’ that nobody believed in me… I’d been ‘removed’ from school. Again.  For weeks, I cried about that.

My therapist from the previous and current semester had been called in (she was recovering from a blood clot in her leg, and having a semi-miserable first months of pregnancy).  She explained that there were no other choices.  I couldn’t remember the overdose- that was almost worse than planning it out.  They couldn’t ensure my safety. Forest Hospital in Des Plaines, IL had already been notified, and since I was as medically stable as I was going to get, I was being discharged from the ICU to be driven back up to the suburbs of Chicago.  I was devastated.  I was horribly ashamed.  I’d failed. Again.  I didn’t see the ‘illness’ part of what was going on. I just saw failure.

It was almost a bit of a relief to be around people who knew me, who didn’t think I was a lost cause (though the next several months- September 1982 through early January 1983 weren’t exactly smooth at the hospital… I was a train wreck, and things got worse before they got better, in the days of endless insurance days inpatient; ‘losing’ school was absolutely devastating, and stirred up a lot).  I spent a total of 7 months in the hospital over 2 admissions.  I was tested (I’m reasonably intelligent, so they said- LOL) from one end to another, and I tested them. I’d always been pathologically well-behaved (confirmed years later by my folks), and at the nut farm, I blew through some rules.  I also tried to escape (going where?) and hurdled the gardner and his wheelbarrow only to collapse on the sidewalk about 1/2 a block from the hospital, in full view of a busy road…. nice to have that on my resumé. *rolling eyes*  At any rate, I was in a place to work on whatever was the immediate problem, which was making sure I didn’t blindly go on some life-ending rampage.  I was never a ‘danger to others’… it was always ‘danger to self’.  I’d give the shirt off my back to ‘others’.   Whatever had happened in that dorm room in Urbana couldn’t happen again.

In some ways I don’t know if I’ll ever know what was going through my ethanol laced brain that Tuesday afternoon when I started eating sleeping pills.  Maybe the booze was a huge part of that horrendous time.  It does explain a lot- but there had to be enough going on to ‘set up’ what happened.  What I did.  The memory loss has always been really hard to deal with. There are days that are just ‘gone’.  No matter how hard I try to figure it out, it’s just not there.  But I always wondered why nobody asked me if I’d really wanted to die.  The answer is no.

Gotta Lose This Weight

I’ve carried on about my frustrations with my weight gain following chemotherapy for leukemia (APL).  It’s no secret that I’ve got a history of eating disorders (just about all of them).  I’ve got to admit, I’m nervous about doing much restricting, as I don’t want to trigger that hell of anorexia again. I was told the last time around (1996) that I probably wouldn’t live through another relapse. As it is, some of my medical diagnoses weren’t identified until after that last relapse, and they’ve disabled me.

But I’m getting desperate.  I’ve got some diet journals to start using on January first… I’m not much into New Year’s Resolutions, but I do want to have this weight gone by my 50th birthday in November.  I hope I can lose the weight without losing my mind.  I have severe intolerance to heart rate or heat increases, so exercising isn’t really an option that will be of any major benefit.  I can stretch. That’s about it.   If the dysautonomia wasn’t an issue, the disc and joint disease is.  Sounds like excuses… it’s my life. I used to walk like a maniac, and loved it. I’d love it again if I could take my MP3 and hit the sidewalks.  No dice. I’d end up laid out on the side of the road.

So, I’ve got to cut back on calories considerably.  I have to be diligent. But I can’t go crazy with it.  I really just want to be more healthy- not ‘skinny’.  I don’t know how this is going to work.  But I’ve got to do something.

The New Oncologist

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

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

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

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

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

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

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

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

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

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.

I’ve Discovered Sparkle.Com for Weight Issues !

Sounds like a way to get windows clean… but lo and behold, it’s a way to get healthy !

I was reading a random article about weight loss (again) and stumbled across Sparkle.com. It’s a site devoted to healthy weight and eating, with menu plans (that can be adjusted to taste), medical issues (like diabetes and cancer, among many others), and tracking tools, so I don’t have to keep writing everything down all the time.  I’m stoked. There are also communities and message boards for support.  The lady in the article lost over 200 pounds!

This could be used for anybody with eating issues- and is based on height, weight, and goals.  I like that it’s based on healthy eating- not some quick diet and be done. It’s about lifestyle change, and incorporates limitations (i.e. my exercise goal for now is stretching, not running a marathon).  There is some sort of point system, that I’m not all that familiar with since I’ve been doing this for about 45 minutes 😀   But I have gotten points already. I just have no clue what they’re good for.

I’m thinking this could be something really good, and it’s FREE (first criteria for any weight loss support on my disability income).   When I get myself more organized (shouldn’t take long, as I’m doing my grocery list now) I’ll be able to get the right things at the supermarket, and not just throw healthy stuff into the cart, and hope a meal shows up out of the mess.  I do buy healthy stuff; I’m just not good at making meals.  But with this, it’s showing me options, and letting me make exchanges within the proper food groups to keep all things balanced.   The options include meal plans for the culinarily challenged.  I can cook, and do a decent job of it, but it’s just gotten too painful. This will allow me to still follow a healthy meal plan with minimal prep required.

For the undereaters out there, this is a very concrete way to see what is ‘enough’ or ‘too much’.  It’s based on health- not emotions 🙂  There are snacks incorporated, even for weight loss, so the snacks aren’t just for those needing to get back UP to a healthy weight… I don’t like snacks either, and I’ve got a weight loss goal (ultimately) of 60 pounds.  One pound at a time.  No matter which way any of us needs to move.  (And for you bingers, you know that the best way to avoid bingeing is to not starve…. really, you know!).

I’ll be eager to see how this all works out.  Instead of having to dream up some sort of meal, I can fire up the laptop and see what is on the list for whatever particular meal- and make substitutions as needed (but not mess up the nutritional values), and get after it.  Then I just check off the boxes, and at the end of the day, it tells me how I did.  You can add stuff if you do go off the deep end, but honesty is the big part, so just add it in, and do better the next day 🙂

This could be a very good thing !

EDIT:  There is a community on Sparkle.com for those with all ranges of eating disorders- and ways to get support with weight gain or loss. 🙂