Going on Palliative Care

And the biggest reason is that I can’t get specialists to listen, and am no longer willing to put this much energy into trying to maintain as much as I can of what I have left that works.   This week, I wasn’t even allowed to come to an appointment with MY concerns,.  I own the body.  I’ve been in it for nearly 55 years.  I get to have a say in my own health.  YOU do not have the final word- ESPECIALLY if you can’t bring yourself to just listen, or LET me come in to my scheduled appointment.  Help me see your view (I understand the surgeon’s need to know more- but it’s not about those two tests that are not needed- they were done, with no current changes in how that is going- there is a diagnosis; what is going on now is different).   That doesn’t seem to be part of medical practice in many of the specialists offices I’ve been in this year alone,  I’m done with the medical shit show in Northern IL.

I’m “complicated” on a good day.  Starting in January of this year, I started having some symptoms suggestive of gallbladder disease.  I got an ultrasound ordered by my primary doc, and yup. Big gallstones, but not inflamed.  OK.  Off to surgeon.  Saw him, then had some stuff come up with my kidneys, and because of nausea, I’d become dehydrated- so had to postpone gallbladder surgery.  Off to GI doc, whose nurse practitioner became absolutely rabid when I APOLOGIZED for coming across bitchy (I felt really lousy that day).  She went off on EVERYTHING I said after that, so I guess she assumed I was there for an old problem and proceeded to order tests already done TWO YEARS ago, for something that hadn’t changed, and it all seemed very punitive.  She didn’t even let me finish. The constant berating shut me down.  She chewed me out for not seeing the nephrology guy, when I’d been told they would call me.  Ended up the order got messed up, so they didn’t know to call- NOT MY FAULT.  Finally got kidney issues figured out after weeks of putting a tube in my own nose into my stomach to help get more fluids in (but not on good reflux meds because of kidney issues, so not flawless).  Then I broke my ankle on June 2nd.  I’m still healing from that.  I’m pretty sure my 5th metatarsal (toe) got whacked pretty well, also.

On Wednesday of this week, I was supposed to go see the surgeon again per MY request.  They called three hours before the appointment to tell me that the surgeon wouldn’t see me until I had the GI tests done.  I’d waited for weeks for that appointment. The nurse wouldn’t even let me explain MY side of things, and that I wanted the appointment to show the doc a possible epigastric hernia in case HE wanted to think for himself and order a test to see what was going on structurally…. nothing down my throat or inside of my stomach has changed, symptom wise, in two years.  A CT could be useful- if that showed something in my stomach, then of course I’d agree to repeat the EGD.  I also can’t do the follow-up that the GI folks wanted before because of transportation issues (my dad died- he was my transportation), so why do it all again, just to not be able to follow-up again?  Makes no sense to me.

I’ve been an RN for 33 years (disabled, but I keep my license and CEUs current).  I’m not stupid. But I am very frustrated.  I  absolutely understand the surgeon wanting to know what he was getting into, but I’d think that actually SEEING what I was talking about at the appointment I’d waited weeks for would have been useful.   I won’t see him again.  I was gutted after that phone call (no pun intended).   I was trying to be responsible by letting him see what was going on.  It hadn’t been as pronounced when I’d seen him before.  While spending weeks mostly in bed with my foot up, I’ve had to get up and down more (bathroom closer  in bedroom vs. living room), and that’s when it really popped up.  It’s been there before- but now it’s just weird.

If I have to fight this hard just to have a physician LISTEN, then I’m done.  I’m not in any shape to move somewhere with better medical care, and I think if I had to leave this house (last part of my parents left), I’d just die anyway.   No more specialists (except one required by Medicare for CPAP supplies). No more procedures. No more consultations.  Only simple lab work.  No more bad news. No more assholes.   No more being berated by unprofessional “professionals”.   No more having to fight to stay as healthy as possible.  I’ll be compliant with what I agree to with the palliative team, but otherwise, the less I have to have anything to do with the medical community in Rockford, IL, the better.

Thank GOD for the nursing care manager at my primary doc’s office.  She has been exceptional when all of this overwhelming stuff just becomes so crazy that I just fall apart. I’m still having issues with grieving my dad’s death.  The health issues, and never knowing what else is falling apart is exhausting.  I’m doing the best I can, but there are a lot of days when I’m really struggling.  Laura has been wonderful.  And she LISTENS.  If I feel heard, I can settle down pretty well.  None of the specialists even seem to think that there might be a lot more going on in someone’s life than the issue they seek help for.

Palliative care focuses on comfort, stress relief, and symptom control.  People don’t have to be terminally ill.  It’s also for life-altering chronic disorders… and I have several.   I can have things fixed if I want to (unlike hospice), but I really don’t see the point.  I don’t want to know if anything new is messed up. No more Pap smears or mammograms- I won’t go through cancer treatment again.    I. Am. Done.   Thankfully, my primary doc and case manager have been amazing.   Everyone in that office has been great. And, the doc is leaving, so will have to see a new one (gotta have a primary doc), but have some continuity going on there, and with the palliative folks getting on board, that should also help with the transition.

NOTE to Doctors who only see one body part:  You are part of the problem for any patient you see- not just me !   You need to talk to patients to get the whole picture before writing them off.  That other doctor whose ‘side’ you cling to has spent 10 minutes with me.  How is that very useful?   If you don’t HEAR patients, what good are you?   How much of your life do you expend just by listening? I’m guessing not much. In the meantime, shutting a patient down matters in every future healthcare decision they make. Nobody wants to put themselves in a painful situation on purpose- and YOU are a painful situation.  And any other medical people who are in contact with actual humans, take the high road if a patient is having a hard time.  It’s not personal (but can get there very quickly).  If you’ve only had 5 years of being an RN, and are a nurse practitioner, that sounds like you have ZIPPO clinical experience with more than one patient’s ‘stuff’ at a time.  It shows.  If you didn’t get laid last night, don’t take it out on me.   If your life sucks, don’t take it out on me.   And don’t blow off the patient’s ENTIRE history.  It is all connected.   Be civil.  Not cruel.

This is what you ignore, just with me:  psoriasis (autoimmune), nocturnal seizures, degenerative disc disease, degenerative joint disease (shoulders, hips, knees), dysautonomia, POTS, diabetes, GERD, history of multiple pulmonary emboli (at one time), gastro-esophageal outlet obstruction, acute kidney injury from dehydration (repeatedly), chronic pain from various causes, arthritis, history of leukemia,  peripheral neuropathy, carpal tunnel (bilateral),  progressive sensory neuropathy, severe heat intolerance, limited mobility, fibromyalgia,  limited ambulatory ‘distance’, bone spurs (neck, shoulders, hips, thoracic spine, lumbar spine), abdominal hernia of some sort (reminds me of ventral hernia I’d seen in the early 90s in a nursing home patient, but it’s a bit higher), sleep apnea,  and I’m sure I’m forgetting something.    It all effects everything else, so even if you don’t have to fix it, you MUST know about it to be prudent (i.e. not negligent).

I have had some great doctors here, but they are few and far between, and they leave.  Nobody wants to stay here if they can get away.   A couple have stayed.  I wonder about them 😉

For patients out there- the doctors work for you. Don’t put up with shoddy “care”.  Move on.   Cut your losses and run.  You deserve better- or at least to be heard.  They get paid for that.  Don’t be their victim.  Survive in a way that works for you ❤ 

I’m SO Sick of Pink Cancer Ribbons… Hear Me Out, Please !!

We’re all pretty well aware of cancer.  The pink ribbons are really marketing tools- and that’s fine.  But it really chaps my hide to see the pink ones so prominently.  Like it’s the “most important” cancer… what about prostate, lung, thyroid, pancreatic, liver, bone, colon, testicular, brain, pediatric, blood, skin, and other cancers?  Any cell in the body can become cancerous.   We need PLAID ribbons.  (The rainbow has been taken).  Let everybody have equal showing in the cancer awareness campaigns.  I’d wear a ribbon that represented all cancer struggles.

I don’t have anything “against” breast cancer (my mom had bilateral mastectomies, along with lung and brain metastasis).  But what about all of the other folks out there?  Just last year, my cousin Kathy died after a 10 month hellish fight with neuroendocrine colon cancer, my dad’s friend Marilyn died after a 9 month horrible battle with ovarian cancer, and my uncle Lee died from esophageal cancer just weeks after diagnosis.  In the past, my biological father (Phil) died from brain cancer (metastasized from his kidney, dead at age 49; we never met because of cancer), a cousin’s wife (Pat) had kidney cancer that went to her liver (was also in her bladder), my dad  (adoptive guy I grew up with from the time I was 10 days old) had thyroid cancer 3 years ago, two cousins’ wives had blood cancers , I’ve had leukemia, another cousin’s husband  had prostate cancer, another aunt with breast cancer,  another one who had to deal with knowing she had genetic predisposition to breast cancer,  and there are many other relatives that I’m forgetting (or can’t remember the actual site) that matter.   Then there are the friends – several with stage 4 cancers (lung, colon, and colon going to lung and liver) who are still fighting or have done well .  And some who lost that fight.  They all deserve to be recognized for their battles.  I’m just one person who knows this many people who have or had cancer.  I’m not naming the ones who are still alive.

I have been an RN for 30 years.  While I’m disabled now, I took care of a LOT of cancer patients (mostly on a surgical floor- and we also did ‘end of life’ palliative care; we couldn’t fix them, just ease their last weeks and days).  Four stand out.  One was a Holocaust survivor with terminal colon cancer (the sweetest lady, who had more than her share of hell on earth).  Then there was the 40 year old construction worker who had just had a melanoma removed (still had sutures) when he started having headaches.  After 3 trips to the ER, they did a CT scan of his brain, and found multiple sites. He was admitted (I was the admitting nurse), and found that he had lung, bone, and liver metastasis as well…. he lived for a month. I pronounced him dead and watched the funeral home take him away.  There was the lady who had just had a baby and was having trouble breast feeding; ends up that stage 4 breast cancer was blocking her milk ducts.  She’d never see that baby grow up.  There was the lady with pancreatic cancer, who was ‘Big Bird yellow’ and looked like someone had strapped a basketball to her belly because of fluid accumulation; she had a miserable last few weeks.  There were dozens, if not hundreds, besides those four that I took care of (mostly as a charge nurse- so not direct care in some cases).   When I worked neuro, as a direct bedside care nurse, there were a LOT of brain tumor patients.  The malignant ones never ended well.  Glioblastoma multiformae (GBM) – stage 4 = grim prognosis.  The tumor has ‘tendrils’ that bore into the surrounding brain tissue to never be fully removable.  Though stage 4 in some sites is more and more treatable- much more than when I was still working- it is still generally felt that stage 4 means that is what the person will die from.  But there are never any accurate timelines; more people are living longer WITH  stage 4 cancer than ever before.

Then there are  the two little relatives of a friend of mine, just a couple of years ago-Cole and Sadie (nephew and niece) – diagnosed within weeks of each other, who both died… an 11 year old and 8 year old.  One had the same type of leukemia I had, and went to the ER on the Sunday after Thanksgiving, not feeling well since the day before; he went into a coma on the helicopter transport to a larger hospital, and was gone the next morning.  Never saw it coming.  No symptoms that were red flags.   The 8 year old survived less than a year after a diagnosis of  GBM Stage 4… St. Jude’s did what they could… but glios are notoriously tough to treat.  Then there were the kids when I was a kid- one who had brain cancer when I was in 3rd grade (he was in 4th grade- his name was Mark), a friend’s 8 year old ‘big’  brother (I was in first grade when he died- I still remember hearing about him dying.  His name was Thor.)…  Facebook is full of kids with cancer.  I can’t handle that type of grief, even if I don’t know them… what their families and friends go through is just heartbreaking.  I’ve heard parents make that guttural, primal  scream of that ultimate loss when I worked pediatrics (our PICU was connected by a narrow hall, and those sounds travelled).  The pain they feel is palpable.

I had acute promyelocytic leukemia- the most lethal leukemia if not treated (many folks diagnosed at autopsy after some type of ‘bleed’ or hemorrhage ), and the best outcome if treated- per  my oncologist.  The average survival without treatment after onset is ONE month.   I was very lucky (or more like God was looking out for me).  I had no specific symptoms- I’m disabled with a bunch of diagnoses, so I never feel “good”.  I just happened to get my annual lab work for my diabetes, and it showed a BAD ‘complete blood count’ (CBC).  Like really bad.  It took 2 weeks to get an appointment with the oncologist, and he scheduled a bone marrow biopsy for the next week.  That was 3 1/2 weeks of my month ( I didn’t know that then).  The weekend before that, I felt bad. I went to the ER, and stayed for 6 weeks, starting induction chemo.  I then had 50 dose (2 25-dose cycles of Monday-Friday for 5 weeks x 2 cycles) of ARSENIC (Trisenox- look it up 😉 ).  Then another year of maintenance chemo.  My body has never been the same.  No eyebrows or eyelashes aren’t that big of a deal- but the increasing neuropathy and weird weight gain has been rough.

So, I’m not cold or indifferent to cancer.   I’m just tired of the boobs getting the press above the others.  This month, the NFL will have their players in pink shoes and other accessories (they look ridiculous).  Go figure… the boobs win out as to who gets their public support.   It’s kind of a kick in the face for those with other cancer struggles, wins, and losses.  They are ALL important.  All of the survivors and lost fighters are important.  They all deserve some undeniable recognition.  If someone sees an orange ribbon (leukemia) or yellow ribbon (pediatric cancer), do they know what those are for?   So, I suggest plaid.  Get everybody in there.  Weave them all together, since so many cancers spread.  Maybe finish them with the color of the cancer a specific person has.  But acknowledge them all.  They all matter.  Nobody struggles more than anyone else.  Everybody needs funding for research.

I will very rarely ‘share’ Facebook posts about any cancer.   I feel for those struggling with it, and for those who have lost family and friends to cancer.  It’s not because I don’t care.  It’s because I’m sick of SO many being affected.  And only the pink ribbons being ‘iconic’. Everybody with cancer matters, and deserves to have money funded into research for their type of cancer… not just the boobs.

Everyday Poisons… To Which EVERYONE Is Exposed

This month marks 4 years since I started the journey to surviving leukemia (acute promyelocytic leukemia – always fatal without treatment).  Since then, I’ve become much more interested in doing things to minimize risk of relapse, as well as other types of cancers. I’m not perfect at it, but I’m making progress 🙂   I’ve been surprised at the things that put all of us at risk, and even more surprised at the lack of concern by the Food and Drug Administration (FDA) about the safety of personal care products, cosmetics, and household cleaning items.  In the European Union, there are over 1,300 banned chemicals from such items.  In the USA, there are ten.  That’s it.  So, we’re left on our own to figure out what is safe and what isn’t. Skin is the largest organ of the body.  That’s right- skin is an organ.  It absorbs things.  The ingredients in whatever we touch end up in our bloodstreams, and then moves into  other organs.   I’ve known that skin is the largest organ since nursing school days in the early 1980s, but I just never thought about what all it’s exposed to until I learned about a company that focuses on just that…

I’ve recently been introduced to Ava Anderson Non Toxic products.  They are toxin-free, vegan, cruelty-free, and often organic products.  AANT has cosmetics, skin care, personal care (deodorant, shampoo, conditioner, lotion, etc), baby skin care, and household cleaning products (laundry, dishwasher detergent).  They even have essential oil combinations for toxin and alcohol free fragrances and candles.  The company was started by a teenager who was horrified to find out what was considered acceptable in her cosmetics and skin care products.

The following is from the AANT brochure ‘Did You Know?’  (I had trouble matching the font size… it goes to the other line of asterisks):

*****Read your labels and avoid the following chemicals: 


FRAGRANCE is a “trade secret” in the industry and
manufacturers can legally include hundreds of chemicals
in this one ingredient. More than 75% of the time if you have
fragrance, you have legally hidden phthalates (THAL ates),
known endocrine disruptors, that are linked with birth
defects, breast cancer, infertility, liver, cancer, diabetes,
obesity, and now with autism and ADHD in pregnancy
by Dr. Philip Landrigan, Mt Sinai, Children’s Environmental
Health Center. 

PARABENS: are preservatives linked to breast cancer,
endocrine disruption, reproductive toxicity, and
developmental defects. California Study (10/11) of BPA
and methyplaraben combination turned healthy cells into
cancer cells, and rendered tamoxifin ineffective.

TRICLOSAN: is the active ingredient in “anti-bacterial”
products, is registered with the government as a pesticide,
and is a known endocrine disruptor. Triclosan is believed
to disrupt thyroid function and contribute to liver and
inhalation toxicity.

OXYBENZONE and OCTINOXATE: (and other chemical
sunscreen “active ingredients”) are UV ray filters that are
known endocrine disruptors.

PETROLATUM & PETROLEUM INGREDIENTS: endocrine
disruptors and carcinogens.

IMPORTANT NOTE: ALL SIX OF THE ABOVE ARE “ENDOCRINE 
DISRUPTORS” which are important to avoid, because the endocrine 
system regulates ALL biological processes in the body: development 
of the brain and nervous system, growth and function of the 
reproduction system, metabolism and blood sugar levels, ovaries, 
testes, pituitary, thyroid and the adrenal glands. (Natural News) 

The World Health Organization and the UN recently released 
a report that called endocrine disruptors a “Global Threat.” Small 
amounts matter, especially to the developing fetus. 

PEG’s (polyethylene glycol) are petroleum byproducts. 
During manufacturing process carcinogenic 
contamination is created: 1,4-dioxane, which is a known 
human carcinogen, with liver and kidney effects. 

SODIUM LAURYL SULFATE (SLS) and SODIUM LAURETH SULFATE 
(SLES) are considered carcinogens. SLES is sometimes 
contaminated with 1,4-dioxane. You will never see 
1,4-dioxane on a label, as companies are not required 
to list carcinogenic contaminants. 

INGREDIENTS THAT END IN “-eth”: like ceteareth, 
triceteareth, etc., carry the contamination concern 
for 1,4-dioxane. 

IMPORTANT NOTE: all THREE of the above ingredients carry 
carcinogenic contaminant concerns created during manufacturing 
for 1,4-dioxane. The government allows 10 ppm (parts per million) in 
any one product, but no one is testing. 1,4-dioxane can be stripped 
for pennies, and must be done for any product exported to EU. 

RETINYL PALMITATE: in the presence of sunlight enhances 
skin cancer lesions by 21% (FDA, 2011 Report). It is in 
many sunscreens and moisturizers. 

NANOPARTICLES: can cross the cell barrier and drive into 
organs, including the brain in humans. There is no way 
of knowing particle size, unless stated on the label. EU 
manufacturers must list nanoparticles. 

ALUMINUM and metals: these are bio-accumulative, 
meaning they store in your fat cells and accumulate, 
and are very hard to get rid of. 

DIETHANOLOMINE (DEA) and COCAMIDE DEA, LAURAMIDE 
DEA: DEA reacts with other ingredients to become the 
extremely carcinogenic nitrosodiethanolamine. Beware 
of other ethanolamines like triethanolamine (TEA) and 
monoethamolamine (MEA). 

FORMALDEHYDE RELEASERS– DIAZOLIDINYL UREA, DMDM 
HYDANTOIN, QUATERNIUM: found in most personal care 
products. Formaldehyde can cause allergic reactions, 
dermatitis, joint pains and headaches, cancer and 
immune dysfunction. 

SYNTHETIC COLOR/DYES: made from coal tar, which is 
a mixture of many chemicals, derived from petroleum. 
These colors may be contaminated with low levels of 
heavy metals and some are combined with aluminum 
substrate. Aluminum compounds and many heavy 
metals are toxic to the brain. 

GLYCOL (propylene, butylenes, etc): is a synthetic 
petrochemical mix known to cause allergic and 
toxic reactions. Has been linked to cancer, developmental/
reproductive issues, neurotoxicity and 
endocrine disruption. 

MINERAL OIL: a petroleum ingredient that coats the 
skin like plastic wrap, disrupting the natural immune 
barrier, inhibiting its ability to breathe and absorb 
natural moisture and nutrition, and its ability to release 
toxins, which can promote acne and other disorders. 
The process slows down skin function and normal cell 
development causing premature aging. 

TALC: is in the same family as asbestos. Talc is dangerous to inhale and has been linked to ovarian cancer. 

SILOXANES: cyclomethicone and ingredients ending 
in “siloxane” (e.g., cyclopentasiloxane) are toxic, 
persistent, and have the potential to bioaccumulate. 
The EU classifies some as endocrine disruptors and 
possible reproductive toxicant that may impair fertility. 
Research shows some to cause uterine tumors and harm 
to the reproductive and immune systems. Some siloxanes 
can also influence neurotransmitters in the nervous 
system. Cyclomethicone is a mixture of three siloxanes.

*******

Now, that’s a mouthful, eh? The FDA doesn’t care that these ingredients are in our everyday products, or that we subject ourselves to toxins repeatedly. They don’t require labeling that such toxins are in the various personal care, cosmetic, and household products we use, thinking they are safe.

They don’t care that the BABY CARE products in this country contain many, many of the toxins in the above list.  They don’t care that newborns in this country have, on average, more than 275 synthetic chemicals in their cord blood at birth.  Do a search for ‘toxins in newborn cord blood’ and be ready to be appalled.  The ‘tearless, gentle’ shampoo contains many toxins.

One of the worst offenders is air freshener, which I’m guilty of using like it’s oxygen (hey, I have a paper-trained dog, and some intestinal issues… ).  Any product with ‘fragrance’ listed in the ingredients could have all sorts of toxins that are protected by trademark concoctions of smell-good stuff.  Organic essential oils and candles made with essential oils and organic beeswax, coconut oil, and lead-free wicks are better options.

Mascara is packed with poisons, legally. I’m glad I don’t wear make-up.  One less thing to figure out.   Lip balms often contain alcohols- which dries out lips !   What a great way to make sure you keep lubing up your lips !!  Shampoos are full of sulfates.  I stopped using those ages ago, as my scalp peels off in sheets from that stuff.  Antibacterial hand soap actually helps increase the problems of ‘antibiotic resistant’ bacteria.  It’s main ingredient  (usually triclosan) is actually registered as a pesticide…among other problems.  Other products contain ‘nano-particles’. I’m still figuring out what those go in- but I know if I get the Ava Anderson Non Toxic products, I don’t have to worry about it.  They’ve done all of the figuring out of stuff.  BUT, there are other companies that say ‘natural’, ‘organic’, and ‘pure’, which mean absolutely nothing unless you read the label.  There are NO regulations about putting those words on a label.  OR, something could have one organic item in it, but be swimming in other ingredients that are toxic waste.  Not OK.    There are some other good brands of toxin-free cosmetics, personal care items, and cleaners… but know what to look for on the ingredient label 😉

Be aware that Burt’s Bees sold out to a major corporation recently, as did Tom’s of Maine (my OLD favorite toothpaste).  I checked out my old  Tom’s of Maine toothpaste box, and it now contains bad stuff (I don’t have a box from when I first started using the stuff- to be fair, maybe it’s always had something on the ‘avoid list’).  I’ve switched to Spry Xylitol toothpaste.  I also tried Earth Paste (great ingredients)… it looks like grout, but tastes OK, and has absolutely NO foam.  It was kind of weird… but it’s an option.  Check the ingredients 🙂

An option to talc is organic cornstarch (I avoid the regular cornstarch when I can, as it comes from GMO corn).  You can mix it with essential oils in one of those little blender thingies.  If you like the ‘cool’ feel of talc like Gold Bond medicated powder, some tea tree oil (organic if possible) will give you the same sensation, and tea tree oil is a  known antibacterial/antifungal.  Besides being linked to ovarian cancer, talc is bad for  the lungs if inhaled while applying it (so hold your breath the entire time… ).  It’s VERY bad for babies’ lungs.  I like using a 4×4 piece of woven cotton gauze as a powder ‘puff’.  It helps keep the cornstarch less airborne.  But talc should be avoided.  ‘Powders’ can be made from many things.

Whatever you do, be informed. Make decisions based on knowledge.  Don’t assume the FDA has approved or tested anything in the products you use on your body, or in your home.  Don’t assume that the companies that make these toxic products care about your health.  They want your money. Until there is a mass class-action lawsuit naming the products that have these toxins in them, nothing will change- so we all have to be our own detectives and decide what is worth the risk.  Some of these products can cost a bit more than the commonly found grocery store versions- but I can guarantee you, chemotherapy costs a lot more, both financially and physically, but also emotionally.  I figured up what my costs will be to change over to Ava Anderson Non Toxic products (for the items I normally use).  It will be less than $30/month.  I can do that !

Just So Lousy… Death Is An Ugly Business

I’ve been looking back on the last year and a half, and it has become mind-boggling how many of my friends (or their close family members), family, former co-workers, and people who were part of my everyday life are now dead.  I don’t really even know where to start.

Most people know that my cousin died on March 2, 2014, so almost two weeks (tomorrow).  She had a  horrendous fight with neuroendocrine colon cancer, with every complication known to nurse-kind.  I was her ‘go to’ person (as she described me) for bouncing around ideas of what might be going on, and getting my take on what the symptoms she was having could mean.  Being eighty miles away didn’t help, but I did what I could, and my standard line was “you probably need to go to the ER” or “It would be a good idea to call your doctor now and let him/her know what’s going on.”  I was glad to be of some use- and it was also hard to know she was going through so much.

During the last twelve to eighteen months, I’ve looked up former coworkers to see if we could reconnect, and ended up finding their obituaries.   I’ve also been informed about friends’ family members- and in the case of two particular children, it was really so incredibly sad.  One died at age eleven from the same leukemia I had- less than a day after being diagnosed. Another child (8 years old) in that same extended family died from brain cancer, less than a year after she was diagnosed.  She had the best treatment there is (St. Jude’s), and she still lost the fight.  Even though their names are available on public ‘search’ links, I won’t post their names because they were minors- and I don’t have the family’s permission to name them.  I remember some kids who died when I was a kid (friend’s brother had a brain hemorrhage, kid at school had a brain tumor, skating coach’s six kids were murdered by her husband)… but as an adult, with the experience of  pediatric nursing-  hearing the screams of the parents when an infant or child died back in the Pediatric Intensive Care Unit isn’t something I’ll ever forget.  It was the most guttural, primal PAINFUL sound I think I’ve ever heard.

I am going to name a few of  the people I’ve lost in the past few years, as I have nothing but good to say about them- and they too are easily found when looking their names up.  I hadn’t expected to find their obituaries, but ….

Madeline Spenrath, R.N. was one of my nursing supervisors in Kerrville, TX.  She was one of the best supervisors I ever had anywhere.  She maintained a bit of a strict ‘ship’…but she had a heart of gold.   I reconnected with  her after her breast cancer was found, and after she’d had to have her right hip removed from the socket (along with the whole leg), as the cancer had spread.  It continued to spread, and she eventually died at one of the nursing homes I used to work at (it helped to know she was getting good care).   Madeline was ‘good people’.   She was down to earth, very knowledgable, and could get an IV into a mosquito in motion.  She had amazing BBQs for the night shift crowd every year for a long time- those were great.  She had someone tend the pit, and everyone brought a dish to pass.  She was all about team work, and it was obvious she was an amazing team leader- and player. She wasn’t above getting her hands dirty.

I had started looking for the mom and godfather of a baby I took care of for most of the first 18 months of his life when his mom worked.  I worked 2-12 hour night shifts on the weekends, and his mom worked 3-11 shifts Monday through Friday, so it was perfect.  The first 3-4 months I had him 5 days a week (had the car seat so I could get errands done), then cut back to 3 days a week so I had some time off.  But he was my little angel bug.  He’s about 25 years old now- last time I saw him he was twelve !   Anyway, when I looked up Jae Arkeen and Dana Coy, I found their obituaries.  It stunned me when I later found out that Jae had relapsed into addiction, and had elevated levels of drugs in his system that he wouldn’t have touched when I knew him.  That broke my heart. He had been SO solid in recovery.  It reinforced that ANYONE can relapse and die with drugs and alcohol.  I really don’t think he’d mind me saying that, because he’d know it could possibly reach someone who is rocky in recovery, thinking they’re invincible with their 12-Step Program.  He was the kindest, most caring guy, and thought that his godson hung the moon. He was so funny, and great to work with.  He later worked in a very intense area of counseling, and I’m sure that, along with what seems like some serious instability in his addiction recovery, was very difficult.  I had contact with  someone who had been very close to him (that I didn’t know), via e-mail, and she let me know what happened.  While it was horribly sad, there was some partial comfort in knowing it was fast- at least at the end.  I’m sure there were some painful times emotionally for him to get to that place.  I worked with him on an adolescent psych unit… he was great with those kids before he moved into a much more specialized area that is polarizing, and very difficult. He was outstanding with those kids.

Dana Coy (RN in several psych units over the years) had a very brief obituary.  brief battle with cancer.  She had been divorced from her adopted-at- birth son’s dad for years, though the son kept in contact with him- so after losing two people who were so close, I’m sure it helped to have his dad there with a long history together.  Dana and I didn’t work shifts together… but we saw each other nearly every day when she dropped the baby off (starting at 9 days old since he was adopted, so not much time off for ‘maternity’ leave), and when she’d pick him up, or I’d take him to work to do a ‘hand off’ if I was working an 11-7 during the week.  I liked Dana.  She was very easy to interact with when I took care of her son… not high strung about things, and also appreciative of having an R.N. for a regular babysitter.   I loved the baby as if he were my own.  She knew that- and also knew that I knew my boundaries as ‘the babysitter’… I always asked her before doing anything with him.  Whether it was a trip to the store, or just going to the apartment complex swimming pool, I made sure she was OK with it.

Another shock was finding out that Tricia Heath, the administrator (and an RN) at a really nice nursing home I worked at in Round Rock, TX back in the early ’90s had died. She was so supportive when I was dealing  some personal things, and was just a kind, compassionate person, who wanted the residents in that facility to have the best possible life they could in an institution.   I really cared about her, and when she and her family moved to Memphis, TN for a job her husband was offered, it was so sad to see her go.  As often happens, people say they’ll keep in touch once they get settled, and then life happens, and they’re in the wind.  Back then, there were no internet search engines for finding people, and it was all basically just luck if phone numbers were in the 411 for a particular city.  Tricia was a great administrator- she kept the place in line for state requirements, but she also had a heart.  I had a lot of respect for her.

Madeline, Jae, Dana, Tricia, and Kathy were parts of my life for a long time. Madeline, Jae, Dana, and Tricia were people I saw every day I worked, depending on the schedule I was on. I wonder how all of their families are doing.  When Facebook and other internet ‘reconnection’ things were available, it was like we’d never been away from each other. I got to catch up with Madeline the most… Jae, only once with a postcard from somewhere, and Dana only briefly when her son was twelve, and I was in Austin for a week for my work; they came up to the hotel to see me one evening when there weren’t any seminars scheduled. But it was great to see her, and how much M had grown !      Tricia was harder to track down since she’d moved back to TX.   I could have paid to find out where she was, but there was information on that thing that was really too invasive for just trying to send a ‘hi, how are ya?” kind of note.  And then they were gone.

I stopped looking for people.  I sort of don’t want to know who else is gone. If more people pop up via Facebook, or whatever, that’s great.  But I think I’m done looking.   It hurts.

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 🙂

 

 

What NOT To Say To Someone Who Is Disabled or Dealing With a Serious Illness

I think most people are trying to be helpful or supportive when they make comments to someone about their health and/or treatments, but there are some things that  those who have not experienced the situation should just stay quiet about.  Some things are just not helpful, and some are ‘enough’ to ruin a relationship.  These are some of my ‘just don’t say it’ things:

1.  “You look OK.”… to me, that means “there must not be anything wrong with her- she’s just a wimp and making a big deal out of nothing”.  You spend a day in my body, and get back to me.  Diabetes, seizures, neuropathy, chronic pain, migraines, degenerative joint and disc disease, and a multitude of other disorders have no outward symptoms that scream out their identity.  There is a fine line between “You look OK.” and “You look good”.  When “You look good” is said following a long fight with an illness or its treatments, and someone is ‘coming back’ to their ‘usual’ self, I never found that offensive.  It’s a totally different situation.  But “You look OK” = “buck up and get with the program, you sloth.”   Trust me.  I’ve tried the best I can, and managed to get 8 years more to work with the initial medications (once the right ones were figured out). Going on disability was NOT my idea.  My employer at the time told me they couldn’t have me around (go figure, I was passing out all the time).

2. “Your doctors sound like idiots.” (opinion usually based on the online ‘research’ that is mostly from sites that are trying to sell a product– and have an 800 number at the bottom of the page, and/or ‘proven’ by someone with a plumbing or agriculture background).   Many times, this is ‘pushing’ some sort of Eastern or alternative medicine instead of the treatments that have been researched and gone through trials, with proven success rates that are better than not having that particular medication or treatment for that specific problem.  I have no issue with alternative medications, and use homeopathic headache medication as well as herbs and supplements for headache prevention/ minimization … but I have run those past my doctors before taking them. I also use Western medications for the same problem.  While I was on chemo, I took NOTHING that my oncologist didn’t approve.  There were very specific things I couldn’t have because of the type of chemo I was on.  There was  a massage/aromatherapy person who came by every day I was in the hospital, so some alternative things were offered.  I’ve been offered various products/ideas to replace medications by well-meaning friends.  Here’s the thing- it’s my body.  I trust who I trust, and it’s not someone online I’ve never met.  It’s not someone who has never seen me or my test results.  It’s not someone who has no interest in me if I don’t buy their products. When I have decided to switch doctors, it was MY decision based on how I felt about the care I was getting.  And, I never trust anybody who has credit card acceptance comments and images at the bottom of their ‘professional’ page.

I must admit, I have been annoyed by doctors I’ve heard about and gone off the rails with my responses- but once discussing the situation with the person- and I more fully understood what was going on, all was well- and bottom line, I respected their gut feeling about what was going on.  🙂 But, nobody needs to hear that their doctors are idiots… they’re depending on those doctors to be sure they’re still going to have a normal lifespan.

3.  “You should/shouldn’t eat X, Y, or Z.”  During chemo, it could have been lethal to eat fresh fruits and vegetables that someone else didn’t peel, because of the microbes that can still be on them even after washing. Because of the immune system ‘attacks’ from chemo (and in the case of the leukemia I had, the cancer itself long before the chemo kicked in), there are times when an otherwise harmless ‘bug’ could cause a fatal infection. Produce is covered in ‘normal’ bacteria, fungi, spores, and viruses- a normal immune system handles them with no problem (they can’t all be washed off).   And when my absolute neutrophil count (ANC) was below a specific number, I couldn’t have any fresh unpeeled produce around (and wasn’t given permission to peel them myself even with a mask and gloves– the risk was just too great).  I’d already had a couple of nasty infections from otherwise puny things that caused delays in chemo and/or the need for extremely potent IV antibiotics for 5 straight weeks, or antivirals for 3 weeks (BAD ear/neck infection,  and shingles during the first year).  Normally, fresh produce is felt to help prevent certain cancers… but with chemo and the effects on the immune system, it is critical to not violate the food rules !  It’s all temporary.  Better to go with what is likely not to cause more problems !  When it’s not potentially lethal, then of course- fresh foods are the way to go 🙂  There was also a very strict ‘don’t eat’ on things with a lot of Vitamin A, since one of my primary chemo medications (ATRA) was essentially a form of Vitamin A in mega form.  Vitamin A is fat soluble, and can become toxic in the body since it builds up (so can E, D, and K).   I had very specific instructions about not eating Vitamin A ‘heavy’ foods (carrots were a particular ‘loss’).

4. “Oh, disability must be just like an early retirement!”  Seriously?  People think this is some sort of ‘perk’ ?  My life was taken from me in terms of everything I knew to be my normal life.  I still grieve the loss of being a  working RN.  I’m having to make 2/3 of my income ‘work’.  I can’t leave home without medical equipment.  I have 32 pills to take on a ‘good day’ when I don’t have to take anything for an ‘as needed’ situation.  I’ve had to deal with Medicaid (a joke- they don’t help much at all, and it’s humiliating to need it), Medicare (very expensive to be on), the Part D prescription plan (which limits my access to the best insulins due to cost), the legal system, with bankruptcy prior to Medicare (extremely shameful to have to do that), etc.  It’s been hell.  Yes, I have many things to be thankful for- but this is no picnic.  I’d much rather be doing 40 hours a week and being useful. Now, it hurts to make a sandwich or empty the dishwasher.

5.  “Well, when you finally feel like it, we can ______.”  Don’t hold your breath, sister !   “Chronic” and “disability” don’t mean this will run its course, and I’ll be fine.  How I wish !   “Degenerative” means I’m going to decline.  I’m the one who should be having more trouble accepting that- why is it that others just can’t grasp the concept that some things can’t be fixed?   Don’t make it sound like it’s somehow up to me for this to all go away.  Don’t make it sound like I’m just not trying hard enough. Don’t make it feel like this is my CHOICE !  When someone says ‘finally’ it implies that there’s something voluntary about all of this.  If there were, I’d be in a way different place, working, and living a ‘normal’ life.

I’m doing the best I can.  If I were physically able to do more than I can, I’d be doing it.  I feel fortunate to be able to take out the trash and not need 2 hours to recover.  I’m always glad when I get home from the grocery store, and didn’t have to stop unloading the car because I felt like I was going to pass out.   I’m adjusting the best way I know how, which is to try and be thankful for what I have left that I enjoy, and am glad that no matter what happens to me, I still have God.  Some people don’t understand that.  For me, He’s a lifeline. ❤

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.