Eating Ghosts and Body Image

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

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

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

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

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

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

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

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

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

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

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

 

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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.

Intervention and Treatment Memories

I gained a lot of weight during the time I was on chemo for leukemia.  It’s been very hard to get rid of it, as I’m also perimenopausal, and limited physically as far as what activity I can safely do.  Add a history of eating disorders, and the idea of losing weight is actually rather frightening at times.  I guess in some ways that’s good, since I don’t take for granted how bad things got the last time I relapsed in 1995-1996.  It took years to put my life back together so I could eat normally, and longer than that before I could accept my body without being disgusted by it.  My oncologist told me just to be thankful I’m alive (which I am), and don’t focus so much on the weight.   Easier said than done.

The last time I started to relapse coincided with being diagnosed as diabetic, and suddenly having to account for everything that passed by my lips. I lost about 50 pounds over several months prior to, and after being diagnosed (not noticeably abnormal ), and was holding my own without any eating disorder behaviors (purging- laxatives were my vice, restricting, excessive exercise, etc).  I ended up with pneumonia later that year (November 1995), and lost quite a bit of weight in a few days, and the sensation of being ’empty’ and seeing the scale numbers drop was enough to trigger the old eating disorder stuff that started when I was in my late teens and twenties (early 80s).  I’d been free of the anorexic end of things for many, many years.  It didn’t take long for being around food to cause anxiety, and for numbers on the scale, calorie books, and blood sugar meters to drive my entire life.  I lost another 50 pounds in about three months.  Other people noticed.

I worked at a drug and alcohol treatment center as a detox RN (and weekend charge nurse of sorts- if anything was wacky on campus, I had the last word if it was OK or not, though with serious stuff, I had plenty of folks to call for feedback and input) , so my coworkers were very aware of what addictive behavior looked like.  And denial.  And refusal to listen to rational feedback.  I coasted for a bit, but by the time a formal intervention was done, I was in bad shape.  Eating anything was excruciating.  Every night, I was asking God to just let me wake up in the morning.  And I literally crawled up the stairs to and inside my apartment.  Chunks of skin fell off of my heels.  Things weren’t good.

The day of the intervention was on the day after having worked a double shift.  I got off at 7 a.m. and went to rest for a while in one of the cabins my coworker had (she lived a few counties away and stayed on campus when she worked- we worked weekends and Mondays) while she went to do some discharge summaries, which I planned to do as well once I got some rest.  She came and got me at around noon, and asked me to come with her to get something to drink, and also drop off something in the Operations Director’s office.

I never saw it coming.  Inside the Operations Director’s office were my boss, her husband (who also worked there with the clinical staff), the medical director, day charge nurse, and several other people, including clinical staff who I worked with as well. There were 8-10 people there.  When I saw them all in the office, I knew what was going on.  I was terrified, but also wanted to stop fighting the wars in my head over something as ‘stupid’ as food.  It’s never about food, but that was what was going on mentally.  I was told of the plan to take me directly to my apartment to pack (supervised), then driven to the San Antonio International Airport to be put on a plane.  Someone would take care of my dog (that’s a whole different story), and my car could stay on campus where it could be monitored.  I’d fly to Houston, where an outreach employee would meet me, and be sure I got on the flight to Los Angeles.  That was the only way I’d be allowed to come back to work. What I hadn’t told them was that my primary doc had told me that I probably wouldn’t last a month, tops, if I continued as I was.  Their timing was perfect.  I wouldn’t have been ready before then.

So, off to Los Angeles I went.  Scared to death… I knew they made people EAT in eating disorder treatment.   But, I figured the sooner I got with the program, the sooner I’d get out of there.  So, in a feeble way, I’d begun to surrender on the plane.  By the time I got there, I was so exhausted from the double shift, then the intervention, traveling, etc, that the guy who picked me up thought I’d OD’d on something that made me semi-coherent.   I was just flat-out tired, and told him I was there for not eating (I never looked like I was starving as much as I was- curds of cottage cheese were something I worried about).  I was also exhausted from the battle fatigue from what had been going on in my head for months.  I’d been ‘confronted’ a couple of weeks earlier by a former coworker from another place I worked, about my weight (she was dropping off her child for treatment), and she asked if there was anything wrong with me.  I didn’t know how to answer.  It didn’t register that losing fifty pounds would be visible to anyone.  Seriously.  That jarred me a bit, but the intervention had the biggest impact.

I went to the treatment center in California (they no longer ‘do’  eating disorder treatment, thank God), and it was horrible.  The facilities were pleasant, and the food was really good (which amazed me, since I didn’t like much of anything, but all of the fresh produce ALL THE TIME was great) !  A few of the staff were decent, but eating disorder treatment it was not.  And the primary ‘assigned’ therapist I had was bad news… I was not allowed to speak about some things that seemed therapy-worthy to me. The ED patients had a table segregated from other patients in the dining room (and we were often like an exhibit in a zoo for the other patients who wanted to see if we ate), and one OA meeting a week (otherwise we went to AA).  That was the ED program. They may have been great for chemical dependency and/or dual diagnosis, but I was a generic eating disorder NOS (not otherwise specified) patient.  They didn’t get that right either.

When I first got there, I was so weak that when I went on the ‘beach walk’, I could barely make it.  Walking in the sand was exhausting, and I was having a lot of trouble even keeping a visual on the rest of the bunch who opted to do that activity.  My jeans were falling off, so they gave me a trash bag to tie two belt loops together, then trimmed the excess so it didn’t violate the safety rules about plastic bags.

The day before I was sent there, I’d packed up a detox patient to go there for more dual diagnosis issues than we generally dealt with at our facility, and then I showed up as a patient. Surprised her !   We sort of stuck like glue together, trying to make sense of the place.  Then another patient, AND person who worked where I worked showed up… They were both dumbfounded about the detox and treatment  process (so had a lot of questions), but come to find out one hadn’t told them all of the things she’d been taking. I told her she needed to fess up for her own safety.  They’d come to me (their former nurse) before talking to the staff there.  I wasn’t licensed in CA, and I was off the clock out there- but I was glad to be of some support.  We all needed each other out there.

There were a few of us ED patients, and we stuck together between groups, wondering where the ED services in the brochure were.  But, I managed to survive 36 days out there. The last 10 days, I had a virus of some sort, and wasn’t allowed to participate in any groups or meetings (but wasn’t sent home). They’d taken me to an ER, where they had me pee in a cup, and then decided I had a BLOOD virus- from a pee test…  The group would literally come to my room at the end of the session to say hello.  I could go outside and sit in the sun (or smoke), but no activities anyone else was doing. I could go to the dining room with everyone else, so it wasn’t like they were worried about me giving bugs to someone… but whatever.   I had a few roommates, some ED and one alcoholic,  (at different times) who were nice enough.  But I left there feeling totally unprepared for going home and making it OK.  I had no aftercare.  I was more scared leaving than when I got there.  But it was a great motivator to not want to ever end up in another situation like that was.

One really funny thing happened one evening, during my ‘banishment’ from groups, when I was outside  smoking.   One of the techs (fondly called the ‘clipboard jockeys’) came running around the corner asking if I’d seen the REST OF THE PATIENTS.  All of them !  😮  I told him no, and he was sure I must know something, even though I wasn’t allowed in groups. I really didn’t know. Come to find out that the rest of the patients were doing the evening community group, and after the tech checked everybody off of his clipboard, they went to another room to mess with him, and hide.  Eventually, all showed up, and the tech laughed, but I can imagine the thoughts going through his head about how he’d lost the entire lot of patients, except the puny one not allowed to go to groups.   That would have been a serious pile of incident reports and phone calls.

In the meantime I’d been told that I would NOT be allowed back to work where I’d been working at the time of the intervention until the director of nurses OK’d it (she had some serious boundary issues, and was also a neighbor of mine who had been in contact with my therapist in the treatment center- acting like some sort of information verifier.  The treatment center wouldn’t let me talk about being raped until my boss had reported to them that it had actually happened when she found the info and news clippings in my apartment when I was gone). Anyway,   I really liked that job, so that was a huge loss until I showed I was doing well enough to come back.   Eventually, I did get to go back, and stayed another couple of years until things started feeling unsafe with a huge increase in census, and no changes in detox/nursing staffing for several months.    But I’ll always be incredibly thankful that I got to work in that facility.  I learned a lot, and am a better nurse for my experiences there.  I still am in contact with several people I worked with there.

The intervention likely saved my butt, even though I had a lot of work to do ON MY OWN when I got back.  I got every professional book on EDs I could find, and did an ‘as if’ thing.   I looked at what I needed to do ‘as if’ I were carrying out orders for one of my patients.  I had to detach for a while.  Eventually, I was able to make it about me, and feel like I was doing OK. (The one OA meeting/group in town was ‘lead’ by someone who brought specific diets to show to the group- nothing 12-step about it, so I passed).  Whenever I see the show ‘Intervention’ or someone getting nailed on Dr. Phil, it brings back a lot.  Interventions are terrifying, but there was also a huge sense of relief at not having to go it alone any longer.

For those who think it might happen to them, just go with it.  Let everybody talk, and then be thankful that you don’t have to get well by yourself, and it doesn’t have to be perfect.  One step at a time, even if they’re baby steps.  A slip doesn’t have to become a relapse.  It beats being tied to an addiction that wants to kill you !  Things can get better, IF you are willing to let someone nudge you on your way (feels like an emotional sledge hammer, but in retrospect, it’s more of a send-off to the rest of your life 🙂 ).

Sorting Through The Symptoms…

 I’m whining.  *** Warning *** I’m not chipper and smiley right now…

Read at your own risk 😉

This has been a weird few weeks.  Actually, things started to get worse with the dysautonomia during chemo for leukemia, which was fairly expected, but it’s getting worse.  Chemo messes with autonomic dysfunction, especially with diabetics, or those with previously diagnosed dysautonomia.  Add in some menopause, and changes in some medications/insulin- and the party just keeps getting better.  I’m tired of trying to figure out what is from what (fibromyalgia/chronic pain, chronic migraines, chronic headaches, reactions to foods, etc).

This past weekend (a few days after two epidural injections- one in my thoracic spine, and one in the lumbar spine), I had some horrific nights with severe leg spasms and cramping. Normally, I don’t have any type of reaction to the steroid injections, other than a day or so of higher than usual blood sugars, so I didn’t really think that was the cause.   I’ve had these  spasms before, but usually getting up once and forcing my feet into a ‘flat’ position, then walking around for a few minutes generally helps.  Friday night was like that.  Saturday night was a nightmare.  I was up every 45-60 minutes, with spasms that actually made the calf muscle (the ‘drumstick’ one) have an indentation in it (like a shallow dish) until I could get the muscle relaxed.  These types of muscle spasms are incredibly painful, and I find myself doing  sort of breathing that reminds me of someone giving birth on TV. Or acting like it.

I finally gave in and called my pain doc early Sunday morning – around 7:30 a.m.  He was very prompt in calling back, and heard me out when I  asked about serotonin syndrome- which he didn’t think was likely. That was good news (no need to go to the ER).   He did  tell me to not take the tramadol anymore, just in case.  I’ve been on methadone for pain for several months now, and had noticed that it wasn’t working as well with that original dose (which spooks me after watching people detox from methadone when I worked drug/alcohol detox.  It’s THE worst type of detox that I’ve ever seen -and I’ve seen lots of alcoholics, cocaine/speed addicts, heroin/opiate addicts, and benzodiazepine addicts- they have a ‘bonus’ 10-15 days after they stop taking the benzos, with another round of acute symptoms, etc).  I’ve been chicken about even taking methadone- but it’s a legit pain med, not expensive- AND, when used as prescribed, it’s safe. I use it as prescribed, and it still gives me the creeps.  I’m lucky to have found a pain doc who doesn’t just write prescriptions right and left.  There are ‘rules’ for being one of his patients.  I respect that.  At any rate, he told me to take a bit more methadone then and another muscle relaxant, and try to get some rest.   I did as I was told, and did get some sleep.  During the worst part of the spasms, it feels like the muscle is being torn from the bone- that has stopped, thank God.   Today has been one of fatigue- but no more spasms.

Trying to figure out what is going on when I start having symptoms can be tricky.  I had e-mailed my primary doc about the symptoms on Friday evening, and she wants me to have some lab work done, which is a good thing.  As a diabetic, I’m a little on the paranoid side about my kidneys.  The chemo was hard on my blood sugars, and I’ve got them MUCH better- but still some wacky ones here and there.  I’ve had a lot of peripheral and autonomic neuropathy symptoms- so that’s sort of my ‘default’ assumption when something is weird.  I get flushed, my skin is hot- but I can feel cold (strange for me), I get blotchy areas on my chest, and in general don’t look OK….

Dysautonomia episode w/ chest blotching, severe flushing, lightheadedness, and other symptoms that come and go with various intensities.

Dysautonomia episode w/ chest blotching, severe flushing, lightheadedness, and other symptoms that come and go with various intensities.

It’s hard to know if muscle cramps could be from potassium, sodium, calcium, or magnesium deficiencies (and those can get really bad- as in don’t make plans for next weekend, since you could be six-foot under by then).  Bulimics are very prone to those- and electrolyte deficiencies are big in sudden deaths from eating disordered patients.  But I’m not in that category any longer, thank God.  The peripheral neuropathy (likely diabetes related) in my legs doesn’t help.  My thighs have deteriorated, and actually shrunk (posterior thighs)- so they tend to hurt faster than before, after doing anything.

My blood pressure has been crazy again (directly from dysautonomia changes), and I’m going to have to start a different form of propranolol (Inderal), as every Medicare part D (drug plan) formulary I checked has cut out the extended release from the generic list.  It’s been generic for a LONG time- but now it’s priced in the ‘preferred BRAND’ category.  I have too many meds to spend a $42 co-pay for 90 days for one med (well, actually two- they cut the extended release seizure meds as well- but I do OK on the regular release form of that).  I already have to pay out of pocket for insulin and syringes, since getting them would push me into the ‘coverage gap’ (donut hole) requiring ALL meds to be out of pocket- which is a map for going straight to non-compliance.  And a non-compliant patient is loathed by medical professionals.  Doesn’t matter WHY someone doesn’t take their meds. There are a LOT of us out here who have to juggle medical expenses to be sure there are funds for the entire year.   Medicare is not free.   Anyway, the symptoms are acting weird, and some days, it’s hard to get much of anything done.  BUT, I still have so much to be thankful for.  I can still think, and put together what I think is going on so I can tell my docs the information they need to know.

Menopause is a special little treat that makes the dysautonomia worse. I have had a few hot flashes- and thank GOD that they aren’t the same as my general heat intolerance.  They are brief, and feel like fire from inside… I adjust the air conditioner (had it on when it was 17 degrees Fahrenheit this winter), and ride it out.  I hadn’t expected the ‘morning sickness’ from the hormonal mayhem, so Phenergan and Zofran have become good friends.

Oh well, done venting 😉   It’s been unpleasant.  But, I’m still living indoors, and have the blog and other online interactions (though the public comments on most sites aren’t worth the nastiness).   I’ll get the blood test done this week.  Onward !

UPDATE:  The Propranolol LA 120mg (generic for many, many years) is actually $77 per MONTH out of pocket.  And I have to have it.  I tried the regular release and all I did was sleep, get up to take meds, and sleep some more.  My life is limited, but being awake is one of the perks I do look forward to.

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.

Feeling Deformed… and Being Needed

I just got back from the endocrinologist’s appointment… they always weigh me there. I already know the number will be horrible before I walk in the door. I know it every time I look in the mirror, or remember the rings I can’t wear anymore, or wonder why I look like an orangutan (my chin has more than doubled).  I detest what I see when I look at myself, so I avoid it whenever I can.  But, bless the doc’s heart- she didn’t rag me about it.  My diabetes numbers are very good, my blood pressure was 98/60, and my blood sugar records were more likely to be on the low side than too high- so it’s not about too many carbohydrates.  And, I’ve stayed within 3-4 pounds for a  year.  But I’m not happy.  Not by a long shot. I look horrible.

I know that as a Child of God, I’m supposed to look at that to determine my self-worth.  I know that He has everything under control, and that He has some reason for this.  I’ve tried so many ways to lose weight, and it just won’t move. I’m afraid to get too radical, since I have a history of some pretty significant starvation and eating disorders. I don’t want to go back there.  SO, how am I supposed to learn to accept myself like this?   I’m unacceptable !  I don’t know what He can do with me like this to be of use to Him.  But I have to trust that He’s got it figured out.

My oncologist told me to just be thankful that I’m alive; many people with acute promyelocytic leukemia don’t make it… I know of two people by name who didn’t even know they were sick  until a day or two before they died from brain bleeds. One was 29 years old, the other was an 11 year old kid.  They both shook me up more than a little.  I was pretty sick in the hospital for six weeks… and initially I lost weight on the induction chemo. Then came the consolidation (arsenic), and maintenance (M6-mercaptopurine, methotrexate, and tretinoin)… 19 months total.  I blew up by 50 pounds from the lowest post-induction chemo weight (30 pounds from before the cancer diagnosis). It’s humiliating.  YES, I’m very thankful to be alive, but I feel like I’ve failed at getting my body into better condition.

My mobility is limited because of degenerative disc and joint disease, bone spurs, and fibromyalgia. My activity tolerance is limited by dysautonomia.  I’ve tried sitting exercising, and my heart rate gets to the point of making me dizzy and pre-syncopal.  I can’t get in a heated pool, or the heat will trigger my blood pressure to nosedive.  I’d slink under the surface of the water, and drown. Not helpful.  I can do some isometric stuff- but that hardly melts off the fat.

But I am thankful for a lot. I love my new puppy, and she needs me to be here for her.  She’s someone who notices if I’m around or not, and wants me close to her. I need that. I don’t get any sort of personal satisfaction from being a nurse anymore… I miss that a lot. I loved working, and am thankful that I had the years I did.  I am very thankful for the stuff I’ve survived.  I want to be here.  I’d rather hate my body than have it parked in a marble orchard somewhere (that’s what my dad calls cemeteries).  I enjoy many things (mostly on TV, or online).  I’m thankful that one day, I’m promised to have a new body in heaven.   I’ve requested a size six. 🙂  It’s just hard for now.

My puppy doesn’t care if I’m a size &^%&# or a size zero.  She just wants me here. When I call her name, she wags her tail as if I’d just given her the best prize in the world.  To her, I’m enough.  I’m hers.  I guess maybe I’ll just have to start there, and have that be enough ❤

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.