The Cost of Healthy Eating

Over the past several months I’ve become much more interested in the quality of what I eat, as well as the cost of eating well.  I was diagnosed with leukemia in late March 2010, and went through 19 months of nearly continuous chemotherapy (either IV or pills).  The type of leukemia I was diagnosed with is acute myelocytic leukemia, subtype M-3.  That particular type of leukemia is diagnosed by analyzing my chromosomes.  It’s that ‘deep’ in how it impacts someone’s body.  Two of my chromosomes had switched their ‘arms’…also known as translocation (on chromosomes 15 and 17).  I wasn’t born with this, or I would have died as an infant.  Something caused this change.  While I don’t know for sure what it was, I’ve been looking at the impact of nutrition, and more importantly, what types of food are produced in this country.

I had heard vague information about genetically modified organisms (GMOs) and how they relate to our food supply.  The vast majority of the corn, soy, and canola produced in this country are GMOs.  This is a very rudimentary explanation; there is plenty of information online. “GMO” can mean they have had a bacteria that acts as an herbicide (weed killer) injected into the seeds, or  a bacteria that acts as a pesticide (bug killer) has been injected into the seeds. These are the seeds that grow up to be our food, and these bacterial/ chemical changes haven’t been tested on humans.  Go ahead !   Look it up !  Monsanto (the parent company of the majority of agricultural seeds) says it’s not needed.  The mice got sick, but that’s OK.  Monsanto came up with the hormones given to cattle to increase milk production.  Oh, and Monsanto also made sure that NutraSweet and Equal didn’t require the full amount of testing the FDA originally wanted once they purchased the company that made aspartame.  How handy for them ! $  Monsanto is a pesticide and herbicide company… producing our food seeds.

In the years since GMO foods have been around, food allergies and intolerances have increased many times over.  High fructose CORN sweetener has contributed to obesity, as it’s added to who knows how many things- and that corn hasn’t been tested on humans.  I don’t remember peanut allergies when I was a kid- but now some schools don’t let ANY kid bring the old PB & J in their lunch in case someone in the class is allergic to peanuts. I wonder if it’s the peanuts, or the additives in the peanut butter.  Monsanto sure doesn’t want us to know.  In fact, they don’t want OUR food labelled saying whether or not it is even a GMO food at all !  Yet many countries refuse to allow our  GMO crops within their borders, and/or don’t grow or sell GMO products in their countries.  But in the US, it’s just fine.

Here’s a way to identify produce.  You know those annoying little stickers on each piece of fruit?  The code tells you if they’re organic, conventional (topical pesticides), or GMO.  If the number starts with a ‘4’, it’s been grown conventionally.  If the sticker number starts with a ‘9’, it’s organic.  If it starts with an ‘8’, it’s GMO.   “Hate 8, nine is fine”  is how I remember that (and four is OK, but needs to be washed well).  GMO foods can’t be ‘washed’ of their ‘GMO-ness’… it’s IN the genetic make-up of the product.  And you eat whatever that is.  Wheat has also been genetically modified for decades, even longer than the others. Rice hasn’t escaped, either.  If your steak, bacon, or eggs used to eat corn or soy based feed, you don’t escape in the barnyard, either.

The cooking oil spray you use?  More than likely it’s canola or soy.  You can get oil misters and add your own organic oils.  It’s a bit more expensive, but chemotherapy costs a lot more.  The snack foods with corn?  GMO.  ‘Healthy’ popcorn?  GMO.  You can look up GMO foods/products online and find out the horrible list. It’s in nearly everything unless you pay attention.  It’s possible to get good organic products- but unless it says “USDA Certified Organic”, it may still come from GMO seeds, but is grown organically.  It’s a tricky business.

I’m on disability, I’m diabetic, I’m a cancer survivor, and  I’ve got a somewhat weakened heart from chemotherapy (so retain sodium/fluids more than I used to).  Food quality is important, and my budget is limited.  But it’s about priorities.  I can’t afford to buy everything ‘organic’. I pick and choose (there are websites that tell about the most important things to buy organic if you don’t go in all the way).  I’ve  still got some ‘bad’ foods around, but I’m more aware, and make choices that work with my budget. I still get a few things that I really like once in a while, even though they are GMO-ridden. I’m working on that !

I’ll always wonder how much the contamination of the national food supply affected me ending up with leukemia.  I’ll never forget the day I got the bill for the first six weeks of being hospitalized, and seeing that the hospital and drug costs alone were $300K+.  Nearly a third of a million dollars. For six weeks of a disease that will be monitored for the rest of my life. Medicare ended up with most of that, and I got help from the hospital itself for my part; I didn’t qualify for Medicaid.  That didn’t include the doctors.  Or the next 17 1/2 months of medications, office visits, chemotherapy in the hospital (I had to be on a monitor), chemotherapy pills (one was $120K/year), lab work, bone marrow biopsies, and heart testing.  I’m sure in the time up until then, I didn’t eat $300K+ of any sort of food; organic would have been an overall bargain.  I’ve since purchased a Medicare supplement that covers virtually %100 of my part of the cost of being on Medicare.  Medicare doesn’t come near to covering the bills without a GOOD supplement (post for another day !).

Become informed.  I still need to do a lot more reading, but at least I’m aware of what items are pretty well guaranteed to have GMO crops in them.  It’s a staggering list.  But learning more gives me the power to change how I’ve done things.  If that means I reduce my chances of having to do another round of cancer treatments, it’s worth it.  And spending a bit more on quality food may increase my odds in many areas of my health.

The Rest of The World Moves On…If I’m Sick or Not !

Even before the leukemia I was a medical train wreck.  I still am.  It bugged me when people would almost apologize for telling me about stuff they were struggling with.  First, I’m not the only person on the planet going through stuff; I get that.  And second,  I’m a nurse (I’m disabled, but I’m still licensed as an RN).  If I can be of use to someone, I’m a happy camper !  It helped me if I could help them.  Still does.

There are times when I’ve felt almost guilty for not being healthy, as if I could fix the stuff that limits me.  And at the same time, I have to know my limits, or it can cause other people hassles.  That was one of the worst things when I was still working; I caused other people extra work.  I hated that.

I don’t ever want to  put my struggles ‘above’ anyone else’s.  Everybody has ‘stuff’, and it’s not a competition. It’s all relative.  For someone who has had a fairly sedate life, having a flat tire on a dark, lonely road is traumatic !  For someone who has had multiple health issues, another one is like “well, what now?”.  Both still have to deal with the situation at the time.  And being grateful for the things in my life that are going OK, or that I still can do makes a big difference in how I see just about everything. 🙂

I think of my figure skating coach when I was 14– her husband murdered their six children.  I can’t imagine having something like that to survive, and then go on with some sort of life.  The survivors of the various natural disasters around the world also come to mind. Someone else always has it worse.  That doesn’t  invalidate what I’m going through, but it does put life in general in perspective.

If my head ever gets so crowded with my own stuff that there’s no room to hear someone else’s struggles,  I’m staying in it too much !

So, friends and family, I’m still here for you!

Why Blog?

For me, it’s a combination of catharsis and purging my mind of things I haven’t talked about in a way that makes me feel heard.  Many people know about the things I write about, but they don’t really know what went on, and the extent of some things.  Other things are just good memories that I want to record.

I can be me- unknown in the real world by most who read my posts. There’s a freedom in anonymity that is enticing.  I don’t have to censor much.  I can unload- and in the process, hopefully say something that resonates with a reader who is either struggling with some inner battle, or understands the nursing profession.  I don’t have a single topic focus.  I’m just emptying my head.

Most of my blogs are fairly long- and some may say that will keep them from being read by most folks out there. That’s fine.  I edit what I feel is appropriate to the topic, and leave it at that.  If people want to read them, fine; if they find them too long to bother with, that’s up to them.

Since starting this on August 10, 2012, I’ve had so many things come to mind that I want to write about.  I live alone.  I’ve been through a lot.  I don’t discuss a lot, and it’s time to dump it.  I can’t be the only one who has had the same experiences- and so I throw my story and feelings out there.  Do with them as you will.  My hope is that they make a connection and help someone- either through a tough time, or a reminder of something funny.

Diss Auto Gnome Ee Ya….. So there !

Dysautonomia.  Fancy word that means my autonomic nervous system (‘automatic’ functions; nothing that is controlled by me) is whacked.  I was formally diagnosed in 1996 when I flunked a tilt table test. My blood pressure tanked to 44/16, and I was still not totally unconscious. The doc told me that when I completely passed out (which had led me to the testing) my heart may have just taken a break for a second or two, and the thud on the floor jumpstarted me again…scary thought).

My blood pressure, heart rate, respiratory rate, and temperature regulation are all messed up. Pain and  being overheated are the biggest triggers, although having anything get the ‘fight or flight’ response going makes it go weird.  I’m not much fun when that happens.  Tipping over got me put on disability, which was (and is) the pits. I miss being a  working nurse (I keep my license active; I earned it, and it’s mine!).  I do not like being a patient (and I’m not that good at it, in spite of a fair amount of experience).  I tend to take care of any nursing ‘jobs’ I can when I’m a patient, and the nurses aren’t always that thrilled. I’ve gotten better about that…sorta.

Nobody is for sure what has caused this.  Some types of this disorder go along with other diseases, like Parkinsons or multiple sclerosis. Sometimes head injured patients have ‘brain stem storms’ which are similar, but those are generally confined to those with serious, life altering brain injuries.  Autonomic dysreflexia is similar. Diabetics can get autonomic neuropathy and have similar symptoms. Sometimes nobody knows.  Sometimes it progresses until the person dies (Johnny Cash), and sometimes it just sort of coasts along.  It looks weird regardless.

I was living with a co-worker in a house with no central air conditioning (in Texas) and hardwood floors when I started having symptoms that were enough to be noticably abnormal (i.e. passing out and hitting said floors about 10 times in two weeks). I had a bedroom window AC unit, but during the day, it was box fans or bust. In July.  I initially blew them off as ‘stress’. My co-worker (another RN) told me there was nothing ‘stress’ about what was going on- I had something physically  wrong, and needed to get it diagnosed and treated before I ended up getting really hurt.  Up until then, I bounced fairly well, and aside from some bruises and a concussion, I would just wake up on the floor, usually with my co-worker sitting on the floor next to me after being awakened in her room down the hall from my body whacking the floor.  She said I looked like someone was beating me, and since she was the only person around me on a consistent basis, it didn’t look good for her !!

So, off to the neurologist, who did some tests, and then to an electrophysiologist in San Antonio (60 miles from home, where I’d drive myself back and forth for the consults with a cardiologist, another neurologist, and the electrophysiologist…. basically they were looking for heart rhythm and brain abnormalities).   The electrophysiologist figured out the problem with passing out, and my neurologist back where I lived figured out some medications to help me keep working. Things had been pretty dicey with that, and my boss was ready to cut me loose. I was horrified.  I was tested for all sorts of things, but dysautonomia was the official word.  There are various types, and I seemed to have a mixed bag with neurocardiogenic syncope (I keel over if my blood vessels in my legs dilate and suck the blood from my brain (more  or less) , causing me to pass out), and some orthostatic tachycardia issues (POTS for the informed) where my heart rate goes up abnormally when I stand upright for too long.  Then there’s the strange stuff with heat that makes my blood vessels swell, and there’s no compensation with my heart rate, and I eventually keel over, after a very patriotic display of bright red cheeks, white around my mouth, and  bluish lips. If I don’t get it controlled at that point, I’m out for the day. It’s all quite exhausting.

It’s weird.  It’s misunderstood, and it’s taken my main sense of purpose – working as a registered nurse. I have been an RN for 27 years, and miss it terribly.  In some ways, it’s been good I’ve got that license to make sense of my own stuff.  But since 2004, I haven’t been able to work, and I do well to get the basic things dealt with at home. Laundry and cooking are quite painful, so it all gets done in ‘batches’.  But, it could be worse. I’m not in some retirement home.

At my last job, I was shipped to the ER between 10-12 times in the last 6 weeks or so that I worked there. Finally enough was enough (and the ER they sent me to was really snarky; if they didn’t understand it, it must not exist, so I was treated like the dreaded frequent flyer – even though I hadn’t sent myself there, my boss had. They were  very cruel at times).  My primary doc agreed that work wasn’t working. There was no way to know when I’d be more prone to having the episodes happen, and since I was (and am) in constant pain, there was always that trigger waiting to blow up.  If the thermostat was comfortable for everyone else, chances are I’d be burning up.  I now have an ice vest that I wear to leave home on the days I have MD appointments, or the one day a month I do major grocery shopping, which finishes me off for the rest of the day because of the pain that causes.

But I’m still relatively independent. That’s important to me. Even when I was getting chemo for leukemia, I’d drive myself to the chemo appointments and Neupogen/Neulasta shots. I wanted to do it on my own.  I’ve had to call my dad for enough stuff, that if I can take care of something, I prefer to do so (he would help in  a second if I asked him).  I rarely drive (have killed two batteries for lack of use), and know if it’s not a good day to go.  I shop in the middle of the night, so it’s cooler. I’ve had to make some adjustments, but that’s OK.

Anyway, if you see someone who has weird symptoms, encourage them to get help.  I got another 8 years of work from the right medications. That is priceless.  Don’t assume that just because you don’t understand it, it must not exist.  Too many people do that.  That can be dangerous.