It’s Been A Bad Few Months…

I’m so frustrated with the increase in limitations over the last few months, especially with my grandma not doing well (and wanting to see her).  I haven’t said a lot recently, but it’s not because things are better.  More things are falling apart.  My aunt called this morning to offer to come and get me to go see grandma (about 50 miles round-trip), and I can’t do it.  I hate this.  I really want to see her.  I had a cousin offer as well (and an uncle volunteered my aunt)- so several offers.  I feel SO badly for declining.  But it’s just not physically safe at this time.  😦

It kind of started with the reflux/GERD getting really bad.  I have had an endoscopy and barium swallow.  Those showed chronic gastritis and some esophageal spasms.  I still have two tests I need to get done (gastric emptying and pressure of esophageal spasms), but haven’t been able to because my spine/back and leg pain being too bad to get through the tests.  I had one test a few days ago (EMG) that showed peripheral sensory neuropathy, that is progressive.   What that means is that my limbs (mostly legs at this point) are subject to strange pain and sensations, or lack of sensation.  At some time, this will lead to not feeling my feet on the floor when walking.   That’s a safety issue.  I also drop a lot of stuff, and have more trouble opening jars, even when ‘unlocking’ the vacuum with an old fashioned bottle opener.  I’m sending for one of those gimp things for opening jars soon.

The pain in my legs has been a burning pain unlike anything I’ve ever felt.  Fortunately, it’s not constant, and mostly at night (which makes sleeping unpleasant, if not impossible). I wake up frequently to that ‘what IS that?’ until I can fully become aware that it’s the neuropathy pain.  Now, both feet are beginning to burn at night, though not every night.  It seems like it’s progressing fairly quickly.  My neurologist did the EMG (pins into legs with electricity run through them, to measure muscle and nerve responses; sounds bad- isn’t that big of a deal).  The MRI was horrifically painful, which normally isn’t the case.  I couldn’t finish the “with” contrast part, as the “without” contrast part took about 1.5 hours, and by the end of that, I was in tears.  I joke around during bone marrow biopsies- so I’m not a wimp. I was just in too much pain this time around.

Over the last several months, I’ve been having more trouble with my blood pressure and heart rate.  The first time I was really aware of my BP being low was at an oncology follow-up appointment when it was 80/50.  I’d been really tired- but I’m  disabled with autonomic dysfunction- I’m tired a lot anyway.  BUT, at that visit, my kidney  function was moderately impaired (at the levels it was at, it would have been considered Stage 3 out of 5, of chronic kidney disease).  Thankfully, with some additional fluids, I was able to get it to the vague acceptable range (normal levels are 90-100; the standard lab values only measure >60, or the specific numbers if <60).  I’d prefer to know the actual number no matter what they are.  Even 60 is stage 2.   But anyway, I dodged a bullet with that.

At that same oncology appointment, I noticed that my A1C had gone up, so got myself off to my endocrinologist to have my insulin adjusted.  With my 2016 Medicare part D drug plan, I will be able to get the “good” insulin, instead of the half-assed stuff I’ve been able to afford over the past 3 years.  Insulin is ridiculously expensive- yet until next year, Medicare has been more wiling to pay for dialysis, amputations, blindness, heart attacks, and strokes before making good, up-to-date insulin a realistic possibility.

My blood pressure meds, which paradoxically maintain my blood pressure (or are supposed to) have been adjusted three times since this summer.  I’ve noticed some orthostatic intolerance on several occasions, but once the meds were adjusted, things would get better for a while.  But it seems that no matter what the dose,  after a couple of weeks, I get symptomatic again.  When driving to my dad’s friend’s house for dinner one night, I started getting lightheaded; that is a bad situation in the car.  I got home OK, but it shook me up. I’m being referred to a cardiologist/electrophysiologist for ANOTHER work-up on this.   I’ve looked up the name of the guy I’m being referred to- and he’s a specialist in heart rhythm and orthostatic issues… perfect for what is (and has been) going on.

I need to see my pain doc, now that there are some answers as to what type of pain is going on.   All pain isn’t  equal.  What is going on is more neuropathic pain, as well as the pain from degenerating discs in my spine (neck to tail).  I’m not sure what is going to be done about that. I don’t like the spine injections.  They aren’t painful, but just don’t last all that long.  I’m not a big fan of being on “routine” pain meds, either (instead of just “as needed”), but I may have to suck it up and just take them.

So, there’s my internal med doc (primary doc), gastroenterologist, oncologist (just follow-up at this point), endocrinologist, neurologist, pain doc, and cardiologist (to come).  Seven doctors in about four months.  I loathe adding doctors to an already complicated mess, but at least until things stabilize, I just have to see them.  Fortunately, my pulmonologist (sleep apnea), plastic surgeon (scalp cysts), and dermatologist (psoriasis) get a break for now.

But the timing on any of this is horrible.  My grandma is dying (as in actively).  I want to see her, and don’t feel it’s safe to go 25 miles each way to see her.  It’s not because I don’t want to.  She was my best friend during those early years on disability when I knew nobody here (and had no access to Facebook or other online social connections and reconnections).  We’d talk about so many things and laugh about stuff in the past.  We’d also reminisce about my mom (who died in 2003).  She’s almost 101 years old, and has been the glue holding our family together.  All get-togethers and gatherings centered around her.   I have called her care-taker who tells her I called, and that I love her.   I know she knows that I do, but it’s still hard not to be able to go down and hold her hand one last time.

Sometimes Being Homebound and Isolated is Really Hard

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

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

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

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

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

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

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

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

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

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

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

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

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 ❤

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 Psychotic State University School of Nursing

I must say that the vast majority of nurses I’ve worked with over the years have been wonderful.  Some were a bit on the side of displaced sorority sisters in need of a house (annoying and way too old to be stuck in an early 20-something mentality). And there were some that just left me with my jaw dropped through to the floor below me or backing away in fear.  The graduates of Psychotic State University’s School of Nursing. A frightening lot of the eternal mystery of  WHO LET THESE PEOPLE GRADUATE?  I understand someone needing to be at the bottom of the class, but puhleeze….

One of these miracles in self-survival worked with me on an acute neurology floor. Most of our patients were at least partially dependent for just about everything. Everybody helped each other out when moving these patients up in bed, cleaning them up, or transferring them to recliners or chairs.  One ‘special’ nurse (I’ll call ‘J’) was nothing short of mind-boggling.  I’d gone in to help her move her patient up in bed, and since we all had helped each other do this a bazillion times, there was an unspoken ‘dance’ in getting the job done. Put the side rails down, put the head of the bed down, move the patient up, put the head of the bed back where it had been, make the blanket look spiffy, get the side rails back up, get the call light within reach, and leave. Done.  Depending on how tall the bed was, we’d raise it to a ‘working’ height (to save our backs).  Anyway, I had started putting the head of the bed down (it was still moving) and noticed ‘J’ fiddling around on the other side of the bed, mumbling to herself.  I asked what she needed and she replied “I’m trying to put the head of the bed down.” 😮   I’m sure my eyes bugged a bit.  Another night, a bunch of us had decided to order burgers from a nearby place, and I asked ‘J’ if she wanted to order anything. Her reply:  “I don’t like Chinese food.”  Alrighty then….no Chinese burgers for ‘J’.  *shaking head* While she never smelled of a particular herbaciousness, there were suspicions.

At this same hospital (which really was a nice place to work- these examples were the flukes of nature that joined us for a period of time), there had been some budget cuts and an associated long term care portion in a free-standing building across town was being closed down permanently.  The staff nurses there were being dispersed throughout the hospital, ready or not.  Long term care nursing is its own animal.  I’ve worked it, and loved it- but it is NOT the same as acute care nursing.  The skill set is much different- and in some ways much more varied than the specialty floors set up in that hospital.  Well, our ‘gift’ from the defunked facility was nearly a fossil herself. She had to be older than many of the patients she took care of.  She was pleasant enough, and easy enough to get along with, which was always tricky in a group that had worked together for any period of time and knew each others’ strength and weaknesses’.  But she was a bit ‘thick’.  Normal conversation seemed to be a bit of a struggle for her. And her hearing was fine. Evidently normal nursing skills were also a bit difficult.  We had a policy that all insulin doses were double checked by another nurse.  One day she asked me to check the dose she’d drawn up.  No problem. Glad to help.  I nearly passed out when she showed me a 3-cc syringe with the insulin in it.  For those not in the medical loop, insulin is drawn up in very specific insulin syringes with 1-unit increments marked on the side of a ONE-cc syringe.  I was dumbfounded. I think part of my jaw may still be on that hospital floor.  I asked her how she knew how much insulin she had in that thing.  She had crickets and the deer-in-the-headlight thing all going on at the same time. She didn’t know.  And it didn’t seem to bother her that she was about to kill someone or leave them in a vegetative state. I’m not sure exactly what I was supposed to check, but I checked my butt on over to the charge nurse after taking the syringe away from Nurse d’Permanent Sleep.  Oy.   Needless to say, Einstein was sent for some ‘remedial’ education. We never saw her again.

At a drug/alcohol rehab place I worked at, many of the nurses were primarily psychiatric or chemical dependency rehab nurses. No problem since that’s what we dealt with %99 of the time, and the medical complications that came up were usually pretty specific to detox.  But…we had patients who had some ‘side effects’ to their years of drug usage that were emergency situations when they happened.  One weekend night nurse (a ‘traveling’ nurse- who were also good for the most part) was giving me report one morning about a new patient who had a high fever earlier in the shift (let’s say 103 degrees for some reference point).  This nurse was SO proud of herself that she’d been on top of things with Tylenol, and the guy’s temp was now hovering in the 97-degree range. That was NOT good news. When someone becomes septic, the body fights with a fever as a way to help heal itself; when the temp goes sub-normal it means the body can’t cope any longer and is decompensating. The train to dead has left the station.  I couldn’t get out of report fast enough to see if the guy was even conscious anymore.  He was, but looked BAD.  I got the OK to send him to the local ER to get labs done (and I couldn’t imagine them not admitting him to ICU). I was pretty sure he was in septic shock.  The local ER didn’t like drug patients, and sent him BACK to us after drawing the labwork.  Scared me to death.  I’m not sure what we did that day to keep him from dying, but the next morning I got a call from the hospital telling me his blood cultures were bad. Ya think?  He was an IV drug user with a massive infection around his heart.  The drug rehab doc arranged to send the guy back to the hospital where he stayed for a couple of weeks on IV antibiotics before returning to complete his drug rehab, with another 4 weeks of IV antibiotics every 3 hours (at a facility where the nurses weren’t used to giving IV meds, or dealing with a PICC line- I didn’t mind).  He was a great guy who got a second chance, no thanks to the Tylenol dispenser.  He should have been shipped out while his fever was high.  High fevers were not typical of what we used to see, and in an IV drug user should be a huge clue that something is wrong.

One of my nursing student compadres was ‘interesting’.  He reminded me of Waldo from ‘Where’s Waldo’ fame, sans striped clothes and beret.  Tall, skinny, huge glasses, and screamed “I’ve got uber-geek genes’. But he was very sweet. I got paired up with him to do a report on riboflavin during our Nutrition class. We had arranged to me AT the library at a specific time.  I got there a bit early, and waited.  The arranged time came and went.  OK, maybe he got hung up somewhere. SO I waited a bit longer. Nada.  I peeked inside of the library, and he wasn’t there. I wandered around, looking around the library and inside of the library, and never found him.  The next time we had class, I asked him why he hadn’t shown up. He looked baffled and said “I was there !  I was in the back in one of the cubicles.”   Really?  I was supposed to find him in the library’s equivalent of a cave?  I asked him if he crawled in the trunk when someone told him to meet him at the car…   I did my own report, and got an A. 🙂 This guy- sweet as he was- didn’t make it through the first class that newbie RN students take (Fundamentals of Nursing).  God looked kindly on patients everywhere.

I’ll think of more ‘special’ nurses to write about.  I learned something from each of them, and wondered how they ever got through the nursing schools they went to, or hadn’t been reported to the nursing board for being dangerous (even if unintentionally- they weren’t ‘killer nurses’, they were idiots).  I was scared for their previous patients; maybe they were no longer able to complain about the nurses in question… 😮

Riding The Scale: The Eating Disorder Roller Coaster

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Well Pancreas, It Was Nice To Know You

Sigh.  I’ve known something was wrong since my blood sugars started going insane while I was on chemotherapy for leukemia.  For the year on chemo pills methotrexate, tretinoin, and M6mercaptopurine, and the prior 50 doses of arsenic (IV), my blood sugars have been impossible to control if I ate anything at all.  So, I did some reading and found that the immunosuppression effects of chemo may have caused enough damage to my pancreas that it no longer produces any insulin.  The weight I gained on chemo make my body resist any insulin (‘homemade’ or shots).  So my blood sugars are insane.

Let me rephrase that.  I can’t get my blood sugars to the level of control I had prior to the chemo, which was essentially that of someone without diabetes.  I took 4-5 insulin shots a day to keep it ‘normal’, but that was a small price to pay to buy some insurance for my eyes, kidneys, and legs.  My last HgA1C (the number that shows 3 month ‘average’ blood sugar, that is helpful for showing overall control) wasn’t that bad in February 2012.  But it was up by 1.5 points from pre-chemo.  That’s not acceptable.

While I was still on the chemo pills, I had days when my blood sugars would actually go into the 300s.  It hasn’t been that high since I was diagnosed in 1995.  Most days I went into the 200s.  My ‘old’ normal was to have a fasting blood sugar between 65-85mg/dl, and a rare 100-105mg/dl.   Now, with tight monitoring over the last week (and a trial of different insulin dosing patterns), I can’t get it below 130mg/dl.  That’s not acceptable.  I’ve been ‘eye-balling’ my carbohydrate intake for months, but started writing down everything this week.  It’s not what I’m eating.

My weight gain since being on chemo has also been an issue.  Insulin stores fat (and I’ve had to use more insulin).  Fat makes the body resist insulin so it needs more insulin; it’s a vicious cycle.  I’ve been eating around 1400 calories, and I’m not losing weight (I was told to consume 1400-1600, so I’ve been at the low end).  But I’m having to use a lot of insulin, so what I’m eating is being stored.

I’ve seen my internal medicine (primary care) doctor regularly, and e-mailed her with what has been going on.  She confirmed that the chemo could have made my pancreas useless as far as insulin goes.  I’ve been resistant to seeing any of the local endocrinologists because of bad experience in the past.  The one I saw seemed to want things to get ‘bad’ on paper before doing anything  proactively.  I don’t work that way.  When I see trends going south, I want to do something to fix it.

What is the rationale behind watching something get to the undesirable stage before doing something?  When someone has a heart attack, does the doctor wait until they need CPR before doing anything? NO !  I don’t want vision problems.  I don’t want to go on dialysis. And I don’t want anything amputated.  I want to minimize my risks by taking care of things before I have other symptoms or complications.

I got an e-mail from my primary doc this morning.  She wants to refer me to an endocrinologist, and told me that we have a Joslin Diabetes Center doc here in town.  The Joslin Diabetes Center is the biggest researcher of diabetes in the world.  I’ve known about them for at least 15 years, and have read some of their older books.  They are ‘da bomb !   I told her I’d be happy to see someone that follows their protocols. No problem.  SO there is hope. There is someone with direct access to the biggest collection of data on diabetes. I can’t ask for more than that.

I’ll be doing even tighter monitoring and recording until I see this new doctor.  I want to have the most amount of information I can to give to him/her at the first appointment.  There’s no point in going in to be told to keep track of things, just to go back again if I can have it to start with.  I have to get this blood sugar business taken care of.  I’m enough of a medical train wreck.  If I can DO something, I want to get after it, and get it done.