The Lull in Posts Over the Past Year

It’s certainly not for lack of material.  Or being too busy (well, having a new puppy has been interesting over this last 11+ months).  In many ways, it’s because I have too much rattling around in my brain, and trying to figure out what to write about (in a coherent fashion) has been more of a problem.

The last year has been wild.  In January of 2013, I was grieving the loss of my beloved Mandy- the miniature schnauzer I’d had since the summer of 2001.  She was my heart, my life, and my only consistent companion.  I knew the day would come, but it’s never easy.   I was really alone for a couple of months, and it hurt.  As in ‘boohoo’ type crying on and off for weeks.

Mandy Bluebonnet Tumbleweed Mar. 28, 2001- Dec. 27, 2012 This was her last photo… ever.

Mandy Bluebonnet Tumbleweed
Mar. 28, 2001- Dec. 27, 2012
This was her last photo… ever.

Then, I got my new miniature schnauzer puppy at the end of February.  She was a day short of 9 weeks old when I brought her home.  She wouldn’t get near me in her crate on the car seat until about 2 hours into the 2.5 hour drive home from where she was born (longest drive I’ve made in over 10 years, and my left knee still hurts).  Then she scooted to the wire door, and at least was close enough to see… she was so cute !  And the games began !!  She was  a crazy little thing, after being seen as the ‘shy, reserved little girl’ in the litter of three pups, two of which were males.   She got over that in a hurry !!  Just NUTS !!  But not a mean bone in her- she was just active, and always on the go.  It took quite a while for her to listen to my commands- which wasn’t about ‘dominating’ her, but making sure she was safe.  I had to get a shock collar, which broke my heart- but the little zap (about the same as when you rub your socks together on the carpet and touch someone, or something) was enough to catch her attention.  Now, I just have to ask her if she needs her collar. 😮

Shelby in one  of her toy bins :)  About 9 weeks old.

Shelby in one of her toy bins 🙂 About 9 weeks old.

Just a happy puppy kind of day !   Shelby- 4 months.  Silly girl !!

Just a happy puppy kind of day ! Shelby- 4 months.
Silly girl !!

Growing up !  About 10 months old in this photo…

Growing up ! About 9 months old in this photo…

Now, she is still active, and very much a young dog, but is such a sweetheart, and really understands a lot of what I tell her.  “Stay” needs some work, but otherwise, she knows the difference between the types of her toys, different rooms, and when she is NOT supposed to bark or whine at someone outside – I mean seriously, the mailman doesn’t require daily announcing !

My biological mom visited a couple of times, and it’s always great to see her 🙂   I’ve thought more and more about ‘biological bonds’ and how that never is severed by adoption- if anything it’s more intense.  Having my biological mom in my life has been such an amazing gift.  That’s something for a few blog posts.  My biological paternal uncle also visited- the first time I’ve met someone from my biological dad’s side of the family.  That was great !   I honestly enjoy both of them (as well as others I’ve met through my biological family tree- that is more like a group of trees).  Neat, really nice people.

This summer, my cousin was diagnosed with cancer.  It’s a tough kind of cancer, and she hasn’t  ever been really sick before, which makes all of the procedures, sensations, and inability to just do what she sets her mind out to do that much more difficult.   She has had so many side effects and complications- it’s been so hard for her (as it would be for anybody).  Since I’m the family ‘go-to’ for deciphering medical information, we talked and e-mailed a lot.  We still do.  I’m glad to be of some use to her (and other family members who know I’ve been an RN for nearly 29 years, even if I’m now disabled- which has increased my knowledge about a  lot of the little things with my own personal medical journey- it helps me find some ‘good’ in the bad I’ve been through).  She is SO strong mentally, and has such an amazing support system with friends and co-workers.  I told her how in awe I am, since the people around here (co-workers) dropped me like a hot rock when I had to leave work in 2004.  She is blessed with an employer who still sees what she can do, and co-workers who are really there for her.  It’s amazing how well she’s doing in such a truly lousy situation.

Last (early) summer, I started on a weight-loss plan, and did lose 35 pounds that have stayed off- but I had to stop the Nutrisystem products for the artificial sweeteners.  I had about 3 solid months of migraines… no days off. I might have some time during the day when my head didn’t hurt, but there were no days with no head pain (I’m never free of muscle pain, and that’s been for the last 19 years).  SO, I had to give in and start taking daily pain meds along with some ‘as needed’ migraine meds.  I’ve been avoiding regularly scheduled pain meds for years.  But, my quality of life is going down the tubes.  With the pain meds, I’m now able to do more around the apartment in short spurts, which has been good- though I’m in no way able to do ‘normal’ amounts of housework.

The dysautonomia is also getting considerably worse- so any activity has become incredibly painful and leads to problems with my heat intolerance, blood pressure and heart rate.  The chemo I was on for leukemia from early 2010 through the latter parts of 2011  is known to cause peripheral neuropathy (as are many types of chemo)- so with an already existent neuropathy, it makes sense that it doesn’t do it any favors.  The heat intolerance is much worse, and even though the ice vest helps considerably, I have the air conditioner on when it’s  less than 20 degrees outside because I’m over-heated inside, if I do any sort of activity that causes my internal thermostat to go whacky.  It’s miserable.

My thighs have begun to shrink.  As in visibly smaller, and not in the good way from weight loss, but in an abnormal way.  SO I had to have an EMG (electromyelogram).  That showed more neuropathy.  I was sent to physical therapy (PT) for exercises- which will be an ongoing thing to avoid ending up needing a walker (at best) or wheelchair (at worst) for just getting around my apartment.  That is scary.  Since last spring (or maybe before then- the time gets away from me), a childhood friend of mine has been volunteering to help me get my apartment straightened out and drag stuff off to the thrift store at one of the churches here.  That has been SUCH incredible help.  She will also go to the grocery store if I need something picked up, and we’ve made a sort of contingency plan if I can’t do much at the store  at all, where I ride the scooter and she pushes a cart.  My guess is that we’d spend a fair amount of time laughing with that arrangement, but it’s so nice to know she’s around.   Another junior/senior high school friend has also moved back to this area recently, and has also offered to help out – so I really do feel blessed to have two people (and my dad) who I trust, that are willing to help me out.   There are days when I feel like that’s the only way I’m going to be able to live outside of some type of facility- and having no longterm care insurance, I would have to go to some state run ‘pit’.

Last week, I went to the store for my monthly fresh food/dairy stuff.  I had my ice vest on, and when I got home, I was still in trouble.  I had to drag out my ‘arsenal’ of thigh squeezes, leaning over the counter, etc. to keep from passing out.  I am so thankful for days when nothing is so bad as to need some sort of quick ‘first aid’ maneuvers to stay conscious.  Or headaches that are bad enough to land me in bed.  Or muscle pain that causes me to be essentially immobile.   I’m getting more and more thankful for days that other people would consider to be very boring- but keep me from having to contact one of my doctors.

The first week and a half of January is rough every year because of two very painful anniversaries… the January 7, 1978 murders of my figure skating coach’s six children (by her husband)- and wondering how she has been all of these years. I miss her, even now.   And, the January 10, 1987  six-hour rape I went through by the uncle of a baby I took care of up to six days a week for about 6 months (back when 6 months of my life was a much bigger portion of my overall existence).

I’m not sure anybody ever ‘gets over’ things like either of those.  While I wasn’t physically hurt by the murders, it was one of the most traumatic things I’ve ever been through, and at age 14, I was miserably unprepared for how to ‘get through’ something so horrific. I knew the older girl a bit from the rink- which made it all hit so much closer to home.  She was a year younger than I was… and it was all so impossible to understand.  I was 23 at the time of the rape- and while I managed to keep myself alive, it was also something beyond my level of coping skills emotionally.  There isn’t a year that has gone by, or even a day or week since either of those events that I haven’t thought about the overall impact they have had in my life- and wondering how my skating coach has been.  Every few years, I have to deal with parole protest letters for the guy who raped me.  I’ve written other blogs about both of those.

So, I’ve had plenty to write about.  But sometimes, it’s just too much to try and put thought to writing.  Many things are rattling around in my thick skull… and writing about them does help me.  I feel ‘heard’ – even if the majority of things I write about won’t be seen by people I know- it still helps that ‘someone’ out there will have seen what I have to say.   Thank you for stopping by to ‘hear’ me.

*Ann, if you are out there… please comment.  I see a lot of people who look up information about that day.  If you are one of them – or know how she is… please let me know 🙂

 

 

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.

Running on Empty

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

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

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

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

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

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

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

University of IllinoisOctober 1981

University of Illinois
October 1981

Eating Disorders and Suicide

This time of year stirs up memories of my first year at the University of Illinois (Champaign-Urbana campus).  I’d arrived there with anorexia well entrenched, after losing 45 pounds in about 6 weeks while working at a church summer camp as  a nature counselor.  I didn’t want to get to college ‘fat’.  And I didn’t (though I thought I was grotesquely huge), but I was already a slave to the eating disorder (ED) voice in my head that made eating absolute hell.  People who haven’t crossed the line to an actual eating disorder don’t get it. I don’t expect them to- and I’m thankful they don’t know what it’s like to have a war in their heads over the number of curds of cottage cheese that are ‘acceptable’.  Yeah- it gets pretty weird.

By the beginning of the Spring semester, and returning from Christmas break, I was a mess. Being home for the holidays had been very difficult- I’d done what I could to avoid being around family by working at the University during a missions conference (‘Urbana ’81’).  Ironically, I worked in the food service area. But I had to be at home at some point (and in Florida with my parents for Christmas itself- that was a battle I lost).  Trying to hide an active eating disorder and starving/purging isn’t easy- and caused even more havoc in my mind.  I didn’t return to school at all well.  I’ve never been clinically depressed unless I’ve been starving/malnourished.  And I was a mess when I got back to my dorm.

I’d been seeing a therapist since I had arrived on campus the fall of 1981, as my resident director, resident assistant, and dorm-mates had found me wearing 6 pairs of socks and a winter coat in late August in central Illinois… humidity with the heat was probably stifling- but I was freezing.  The RD could actually feel the cold coming through the socks. SO she called 911 and I was hauled off. I was diagnosed with anorexia nervosa the next morning, and ‘ordered’ to start therapy or leave school.  I had no clue what to think about therapy, but I knew that going home wasn’t an option. It would mean I’d failed.  SO I went to therapy.

That therapist ( a very nice youngish woman) probably never heard me say much more than “I don’t know”- and I didn’t !  I had absolutely no insight, and no clue what could have gone on in my past to lead to the eating disorder.  By the Spring semester of 1982, I was really falling apart, and had a plan to kill myself.  My roommate had moved out long before (because I was too QUIET !!), so I could be isolated for quite a while before anybody would have noticed I’d been missing.  I had planned to take the tranquilizers (Thorazine- supposed to chill me out enough that I didn’t care if I ate) I’d been given at the university health system pharmacy,  and lock myself in my room, IN my closet (with the keys), and just wait.   I’d become fairly resigned to the idea that I wasn’t going to  live all that long with the anorexia (which had included periodic bingeing at that point, and daily purging via 40 laxatives spread out throughout the day), so it was more about just dealing with the inevitable.  I didn’t really want to die– I just didn’t know how to get out of the ED.  I felt trapped, overwhelmed, ashamed, and hopeless.

The emotional pain had hit the tipping point.  For some reason (like wanting to live maybe?), I spilled my guts to my therapist, who promptly had me escorted to the university health system (via the University Fire Department….. subtle), where I stayed until arrangements could be made to have me shipped to Forest Hospital in Des Plaines, IL.   It was a nut house.  Back then, there were no eating disorder ‘treatment centers’… if you had a nutty problem, you went to the nut house. That in and of itself was terrifying, but I was even more afraid of facing my parents- and being a disappointment- so a longtime adult friend and her daughter (former babysitter) came to get me…once the blizzard passed, some 3-4 days later.  The therapist and health center folks had wanted me out of there much sooner, but the weather was a big problem.  So, I waited at the health center ‘hospital’ as dorm friends came and went, both trying to cheer me up and also to say goodbye.

Suicide  attempt averted. That time. The next fall, I returned to the university, and the pressure build-up was almost instantaneous.  More on that later….

I’m Grumpy Today

I’m not sure what my malfunction is, but I’m sorta grumpy.  I got up way earlier than usual (I’m one of those who is usually up half of the night and then sleeps until noon).  I’ve got a vague headache, but that’s nothing all that new. I have chronic headaches.  Christmas was really good- I got to see (and meet) family, and talked to my biological mom and half-brother on the phone, which is always good.  I got to spend time with family at the Swedish Christmas party since I’ve got the ice vest to wear when I leave home and don’t have as much chance of being overheated because of the dysautonomia. And yet, I’m a major dud this morning.

My 11.75 year old schnauzer with heart failure was so eager to eat some ‘meatloaf’ I made for her yesterday (with controlled sodium), and this morning she won’t touch it. I’m running out of options.  She started refusing the prescription dog food weeks ago, and prior to that had been eating a minimal amount (which wasn’t all that unusual for her- but she managed to keep her weight up). So now I’m trying to figure out other ideas… have been through ground beef/turkey/chicken, oatmeal, mashed potatoes, brown rice, white rice, baby food veggies, cooked carrots (gag), baby food applesauce and oatmeal,  and various combinations of the above.  She normally likes all of those things. Now, I’m lucky if she eats some of her Charlee Bear dog treats- they have minimal sodium, so she can still have them.  If she weren’t still alert and very interested in what is going on, as well as physically mobile and showing no signs of pain, I’d have her put to sleep…but I don’t want to ‘kill’ my best friend if she’s still getting some enjoyment out of life.  It’s a fine line right now, so as long as it’s not blatantly obvious, I’m holding out… but that time is coming.  There’s only so much I can do, and I think I’ve pretty much hit my limits. 😦

I’ve been extremely irritated at comments to news stories on various online sites and publications. So many people are so heartless and cruel.  Or pathologically immature and even psychopathic.  Responding that they’re ‘happy’ about an article where five people were made homeless by a fire that destroyed their home? How do people get that way?  Who dropped them on their head?  Or burned them?  And then there are the other ‘less’ disturbing posts that are just plain nasty and/or cruel.  Or ignorant.  I’m actually very thankful I don’t know those people or have to spend any IRL time with them.  A click of the back button takes them out of my life.

The onslaught of horrible stories that are on the news constantly is also a major bummer. I feel really badly for those folks and what they’re going through, but what good does it do anybody to have it dissected in the media for days to weeks on end?  I’ve been a crime survivor of a high profile case (before the 24/7 media, back in 1987).  It wasn’t helpful to see it on TV for days or see the newspaper coverage over and over.  The people who knew about it, and were my actual friends/family already knew what happened, and face it: most people really don’t want to know about real life horrors that happen to other people.  Or they don’t know what to do with the information, at least to the persons’ face. Behind their back, the chatter won’t stop. If people would have just asked me straight out what happened, or even if I wanted to talk about it would have been much  more helpful than days of media coverage  (without any input from me- I was an object).  I had one ‘different’ neighbor that responded to meeting me with “I never thought I’d meet you ! ”  Really?  Meeting someone who has been raped and beaten was a life goal?  Step away from the strange one !

I’m extremely disgusted with my weight, and have my food diary set up to start on January first. I don’t want to look like this on my 50th birthday next November.  I don’t want to be grotesque and repulsive going into the last third to half of my life. I have to restrict food. I’ve tried the ‘normal’ calorie amounts I’ve been given from the doctor and diabetic dietician, and that doesn’t work…so I’ve got to go lower. I can’t do much exercise because of the issue with passing out when my heart rate goes up or I get overheated, and my knees and spine issues.  So the calories have to go.  A slippery slope for me, so I’ve got to be careful- but I have to DO something beyond what I’ve been doing.  I didn’t look like this before chemo… and I want to lose any remnants of those days.

Losing weight will also save me some time before having to have my left knee replaced (I had the right one done in late 2006, and it was a very unpleasant experience with some complications and ‘dull’ response time by the doc and nurses to a bladder infection). I had to go to a rehab place for the medically defective. It was a good rehab facility- great care, but set up where people stayed in their rooms like a hospital between therapies (no common area), and since I was infective, I was in a private room- not a horrible thing, but friggin’ isolated. It’s not like there was a big risk of someone coming into contact with my pee.   My left knee has unrepaired, and questionably healed ACL and medial meniscus tears, done when I turned over in bed back in 2009- about a week before my closest friend from here in this town died suddenly (following several complications from a KNEE replacement). She’d moved to a different state to be closer to one of her daughters, but we were in contact by phone daily, even when she was in the hospital or rehab.  I was supposed to have the left knee replacement done, but then got leukemia and everything was put on hold to survive that.  Been a weird few years.

I’m frustrated that I don’t feel that people understand why I’m like I am.  I’ve got diagnoses that people haven’t heard of.  I ‘look’ like I’m capable of working, and I miss being a nurse SO much- but too much standing or walking, and the whole heat/heart rate thing = one unconscious middle-aged RN.  I’ve been an RN for nearly 28 years.  I’ve been on disability for 8 years.  But I still keep my license, because I still AM an RN.  I worked hard for that thing.  And I loved working with it…  And those days are done.  When people ask me what I’m doing to get back to work, it hurts- there isn’t anything that can be done by me or anyone else. Some things CAN’T BE FIXED !  SO those perky, blessed-to-be-clueless people need to shut up and go target someone who has some stuff going on that is treatable. I’ve been dealing with much of this since 1996- and worked until 2004- I held out as long as I could.  I fought to keep working.  QUIT asking me if I’m going back to work. NO, I can’t !

I was raised in an evangelical church, and am a born again Christian, without some of the judgmental drama that can go with those two things.  I hate the passive ‘I’ll pray for you’ stuff- prayer is wonderful, and I do it often, but if someone wants to help, some action would be really amazing ! Prayer is about as passive as a person can get and rationalize to themselves that they’re ‘doing’ something– and while I do believe in prayer and that it is a very positive and powerful thing (and pray for people on the news all of the time since I can’t do anything else), it’s not the be-all end-all answer to really being of use to someone.  It’s definitely better than nothing, but it really doesn’t show much in terms of actively supporting and helping someone. Sometimes it’s all people CAN do- and that’s appreciated.  But remember the ‘faith without works is dead’?  I’ve sensed a lot of dead.  I wish I could do more for others, and feel guilty about that.  Not like I know many people around here to be available for… back in the home where my heart is, I could be more useful, even if I’m not that physically ‘able’… I could drive someone to the store, or appointments.  I could water plants when they were gone, or change out cat litter. I couldn’t walk dogs or watch kids… but I’d do what I could.

I’ve contacted my ‘old’ church (from when I grew up and it was an amazingly positive experience) to find out about women’s Bible studies and other things in the past, and have been essentially blown off. I guess I’m not good enough for the ‘elite’ evangelicals anymore. My checkbook may not be deep enough or something.  I’ve tried again, and will hear back after the 31st when the contact person returns. I had really looked forward to going back there when I moved back from Texas.  I found it to be cold and a bit pretentious.  If someone can’t go back to the church they grew up in, where should they go?  Where is the ‘real’ message in that?   It hurt.  There were some really nice ladies (who I’ve known since I was a kid) who invited me to a type of ‘grief’ group, but I don’t want to sit and talk about dead family.  If that works for them, I’m really glad they have somewhere that feels right for their grieving process.  My mom is dead. Sitting in a room with folks who need that type of support doesn’t work for me.  I guess if I want to connect with anybody there, I have to be bummed out.  Not something I’m interested in.  I’m hoping the Bible study that starts on January 9th will work out- otherwise, I’m done trying to get back in to the church I grew up in. It shouldn’t be a ‘project’ just to find somewhere to fit in there.  The singles group wasn’t my bag – I want some ‘study’ group type thing.  🙂

Anyway, that’s a bit of what’s rattling through my head today.  I’m a little less grumpy now.

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. 🙂