Ramblings of 2015

Here it is… New Year’s Eve.  Getting ready for 2016.   It’s been a bumpy 2015, though I realize I still have a lot to be thankful for.  A lot has happened.  A few things are still being diagnosed.    There have been family changes.   And like always, I seem to manage… but it’s getting harder to do it on my own.   Fortunately, I believe that God has it all figured out. I don’t have to understand it all…

Last year about this time, I did a home sleep study, that showed that I stop breathing about every 3.5 minutes….so basically I don’t sleep enough for it to be useful.  I hadn’t been getting to the REM stage, so restorative sleep was kaput.  I went in to get ‘fitted’ for a CPAP (continuous positive air pressure) machine, and it has really helped.  The morning headaches have pretty much disappeared (that alone was worth the price of admission).  I dream more- weird dreams, but not bad dreams, and I’m getting to the stage of sleep where I can dream.  Add a pulmonologist/sleep specialist to the list of doctors I see- but this guy is A-OK.  The increase in the quality of my sleep has perked me up, so I want to do more.  I can’t always physically get it done, but it’s nice not to feel like I’m a total slug.

Then the summer came around, and it seemed like my body decided to take a flying leap towards deterioration.  From the head down:  scalp psoriasis got much worse (no more dark colored shirts for these shoulders), swallowing got bad, GERD got worse, back pain intensified, blood sugars got nutty again,  legs started having intense burning pain (as in being set on fire… not sunburn), right leg  atrophy got worse (muscle shrinking), legs started getting weak to the point of feeling like they would give out, blood pressure and heart rate started to do their dysautonomia/POTS thing- again, and something I’m forgetting.  Oh, yeah…. the kidney function tests got weird after my blood pressure got really low.

The psoriasis is an autoimmune thing (not to be confused with autonomic… they are very different).  I keep my head shaved for the autonomic disorder (very heat intolerant, and what is more heat retaining than a head full of hair that is about as thick as a bear rug?), but now the psoriasis ointments benefit from not having a ton of hair to muck through.  SO, I’m usually mostly bald, and flaky.  Not like normal dandruff flakes (those are there with the psoriasis as well), but like sheets of skin the size of my little fingernail peeling off.  Lovely.  And, yet that is more of an annoyance than life-altering.

The swallowing is still being evaluated.  So far, it looks like achalasia (esophageal spasms that don’t allow for food to pass into the stomach normally; feels like a golfball is stuck in my pipes).  They also found a “clinically significant lesion” at the junction of my stomach and lower esophageal sphincter (end of the esophagus), which will be further checked in a couple of weeks when I have the third endoscopy in five months, but with an ultrasound and biopsy done this time.  I don’t like the word biopsy, and don’t like that it took about a MONTH to get the biopsy scheduled. To me, that’s not OK.    In the meantime, it hurts, and food choices are more limited, or I have to pull things out of my throat with my fingers. The safe foods are  more carbohydrate ‘intense’, which hasn’t done much for my blood sugars.  SO, add a gastroenterologist, and return visits to my endocrinologist.

The reflux was also really bad, but changing some of what I eat, as well as  a hefty dose of a proton pump inhibitor (GERD medicine) has helped somewhat.   I can no longer take ibuprofen, or any meds in that category because of chronic gastritis (inflammation of the lining of my stomach), so that is a problem with pain management with other stuff.

I’ve got degenerative disc disease, so it’s not all that unexpected that lower back pain gets worse over time, and I knew I was going to have to go back to my pain doc. I needed a current MRI so he knew what was going on.  That MRI was horrible.  I’ve had a lot of MRIs, and usually it’s no big deal.  This one was for both my lower back and neck (it’s in worse shape with messed up discs and bone spurs), with and without contrast, so it took a long time.  I bailed after the “without” part of the test. I got both the neck and lower back done, but  I couldn’t take  being on my back any longer, not able to move.   Anyway, I went back to the pain doc, where I got an injection in my back (have had a lot of those; they aren’t that helpful, but it does help a little for a few hours).   The next step with that whole mess is to have a spinal cord implant thingie that blocks how my brain perceives pain.  It fixes nothing except perception.  I’m going to have a pelvic CT just to make sure something else isn’t going on before I have something implanted in my back/spine.  In the meantime, it’s pain meds (that I don’t like).  They do help, but I am very careful about making sure I don’t get too used to taking them.  I’m not concerned about addiction.  I get no ‘perks’ other than pain relief.  I use them as directed.  But physical tolerance is something that happens with several types of meds even when used as directed.  It is not the same as addiction (no psychological component ), but can cause symptoms if the meds are suddenly stopped.  So I’m careful. I don’t use them every day.   I follow the dose instructions.  I don’t mess with them.

During a routine follow up appointment with my oncologist, my lab work came back funky for my kidney functions.  My blood pressure had been low for a while, and evidently low enough to mess up blood flow through my kidneys.  After a few medication adjustments, my blood pressure came up and my BUN and creatinine went back to normal, along with my glomerular filtration rate (which had put me in the stage 3 level of chronic kidney disease).  One thing that has always spooked me about being diabetic is kidney failure.  I’m not sure I’d agree to dialysis if it involved the sort that requires dialysis three times a week no matter what the weather, for 3-5 hours at a whack.  That’s not a life in my eyes.   Just my opinion, though I’m sure if it came down to it, I’d do dialysis for  a while, and make any other decisions along the way.

My right thigh had started to shrink (atrophy) a couple of years ago, and a muscle study (EMG) that involves pins stuck into the muscle with a bit of an electrical jolt thrown in showed that I have neuropathy.   Between being diabetic and a LOT of chemotherapy that often gives people neuropathy that don’t already have it, I was like a neuropathy magnet… and it was getting worse.  During the summer, I started having sensory issues.   As in it felt like my right thigh was literally on fire.  Ignited with an accelerant type of fire, not a sunburn.  I’ve got a pretty decent pain threshold (as in joking with nurses during bone marrow biopsies), but this pain would not only wake me up at night, but briefly immobilize me while I tried to make sense of the intense fire sensation, and no fire anywhere near me.  If/when I got myself rolled over ON to the burning leg, it would start to subside.  The same area was numb to touch all the time… Back to the neurologist for another EMG.  The sensory peripheral neuropathy was now said to be progressive (I think most of them are).    Then back to my regular doctor to discuss medication options that wouldn’t mess up the rest of the pharmacy I take.  And, to have her check my muscle strength.  The right leg isn’t so good, and if I’m standing for very long, I feel like it’s going to give out…. so I now have a wheelchair for more than walking around in my apartment, or to the dumpster- which I still do to keep using my legs as much as I can.  The other leg decided to join in the burning pain and numbness, so it’s a two-fer now.   The wheelchair has been a huge help  in getting around at church (I joined a women’s Bible study this fall- the first socialization in years).  I hope to go to the mall soon.  😀 DSCN4140

With my blood pressure and heart rate starting to be weird (kind of like it was in the beginning of the whole dysautonomia business), I was getting more symptomatic.  One night on the way to my dad’s girlfriend’s house for dinner, I started feeling like I was getting a bit foggy-headed, and my heart rate was going up.  Time to head for home.  Don’t pass go. Don’t collect $200.   My internal med doc (regular doc) had already adjusted my long-acting blood pressure med a couple of times,  (paradoxically helps keep my blood pressure UP, unless something isn’t working even more weirdly) , so she sent me off to a cardiologist – more specifically, an electrophysiologist who deals with heart rhythm problems, and dysautonomia.  The good news was that my EKG in the office was OK (which was expected).  My echocardiogram (ultrasound of heart) was OK.  Not perfect, but not bad for my age…. my AGE….. arghhh, I’m getting older on top of all of this  :p .  Thankfully, she didn’t want me to hook up to one of the 3-4 week King of Hearts monitors for extended testing. Those are annoying.  I’ve done them twice.  I end up with episodic tachycardia (fast heart rate), PVCs (not good if they keep going but a couple of them aren’t that big of a deal), and ‘burns’ from the electrode adhesive.   I’ll go see her again in a couple of months as a follow-up.

Sometime during all of this, I went back to my endocrinologist after my A1C (average blood sugar over about a 3 month period) went up more than I was OK with.  I hadn’t seen her in about two years…. I’m SO tired of seeing doctors.  But she got me some new fangled insulin samples, as well as the ‘good’ short acting stuff and told me what to take.  I found out that my Medicare part D (drug plan) would cover BOTH of them at the Tier 2 copays !!  That was huge !  I actually cried with joy at being able to get the ‘good stuff’, and not have to take the “disco insulin” anymore (it was popular in the 70s) .  God bless Walmart for making disco insulin available for $25 per vial ( good insulin can be 10x that price).  But I was going to be able to get the good stuff, AND the endocrinologist got me enough samples to get me from the beginning of October THROUGH the end of the year !  😮

SO, just from medical junk going on, I’ve seen a pulmonoligst/sleep specialist, internal med doc, oncologist, cardiologist, neurologist, endocrinologist, gastroenterologist, and board certified pain management doc.   Good to have all of those folks to help.

My 100 year old grandmother died on Halloween. There was a lot of really snotty stuff that went on with the living siblings (aunt and uncle) ‘passing along’ information to those of us grandkids whose sibling parent was already deceased.  From my standpoint, there is no more family besides my six cousins (in one family).   I am in contact with my mom’s deceased brother’s kids, and that’s it.  Toxic people can be prayed for from a distance.  I will always wish them well.  I will not be part of the games by pretending that it was all OK.  I couldn’t go to the funeral (see above), and the six cousins who also have a deceased ‘sibling parent’ weren’t even seated with the rest of the family.… ’nuff said.   Who knows what my other cousins have been told about how we were left in the dust with being informed about changes in grandma’s condition (admission to hospice) AFTER they’d all had a chance to go visit grandma from various parts of the country (not all did go, but they KNEW what was going on).  And it really doesn’t matter anymore.  It will be very clear in the end when we all meet our Maker.  The aunt and uncle (living siblings of my grandma’s) have to live with themselves.  I don’t.

I’m so thankful for my dad.  He’s my earthly ‘rock’.   He’s 83 years old, and going strong.  We talk every day, and see each other at least weekly.   It’s a gift to still have him in my life.    We joke with each other all the time, which is great- but I’m also so grateful for him.

Shelby turned three years old on Christmas Eve.  She’s still a ‘puppy’ at heart, and my baby.   She had to have a toe amputated this summer- it was benign (there was a swelling and firmness to it that was suspicious)… and she’s back to running around all over the place.   She really is a wonderful companion.  She’s nuts… but that’s fine ❤ DSCN4026

Joining a women’s Bible study was great and I look forward to the new semester starting next week.  It’s been a LONG time since I’ve had much continual socialization opportunities.  I have to take my cooling vest, wheelchair, and Bible with the  specific study guides, but it is such a blessing to feel like I’m a bit of a part of something.  It’s at the church where I grew up, so there’s a sense of familiarity, and I’ve met some really nice new people.  I also ran into the mom of one of the tiny babies I looked after in the church nursery (who was my favorite in the 0-7 month nursery- she was such a bitty little thing, and so cute; I claimed her as mine for an  hour each Sunday 😉 ).  It was great to see someone from the past.

A lot has gone on… it sounds like most of it was ‘bad’, but I don’t feel that way.  I’m getting some help with making life a bit easier (wheelchair, better insulin), as well as less isolating (Bible study).  That trumps the bad stuff to the moon and back.   I’ve accepted that I need help with some things, and have a couple of friends who are willing to help. My dad is healthy and a lot of fun.   I have a great relationship with my birth mom, as well as her extended family.   I can still live in my own apartment, and have my goofy dog.  Through Facebook, I can remain in contact with family,  friends from Texas, as well as those I’ve known from before then.   No matter what is going on, I believe that God has it all under control for His good.   I don’t have to understand it, but I do find comfort in His ability to get me through whatever goes on.  I always seem to land on my feet (more or less), and I believe that my faith is what gets me through things.   God is good.

Bring it on, 2016 !  😉

 

 

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Pain Management for the Non-addicted

Hydrocodone (Norco, Lortab, and Vicodin’s main ingredient) has been in the news a lot in the last few months.  People are dying from overdoses.  While that is very sad, it has created mayhem for those who take meds as directed.  Those who follow the rules are being ‘punished’ because of the actions of those who don’t (yes, I believe addiction is a disease, but there is a point in the beginning where using chemicals is a choice; genetics is said to load the gun, circumstance pulls the trigger, and the addict *at first* has their finger on the trigger… addiction doesn’t happen at literal gunpoint).

Hydrocodone has been moved from a schedule III to a schedule II.  That means that any refills must have a paper prescription- no getting phoned in refills.  Those with chronic pain must now go to the MD office and get the piece of paper to take to the pharmacy, then wait for the prescription to be filled, and then go back home.  That is ludicrous when someone hurts so much that leaving home for anything is painful.  My spine is collapsing, my discs are degrading, my thighs are shrinking from neuropathy, and I’ve got fibromyalgia.  I also have chronic headaches.  I’m in a lot of pain, more days than not. I don’t remember ‘pain-free’.   And now, I have to deal with the actions of people I have never met who have emotional issues that they use drugs I need to squelch.  Those people are now dictating my medical care.

Less than %6 of those who are prescribed opiates who TAKE THEM AS PRESCRIBED ever become addicted (Google it).  So, %94+ of those who need pain meds for chronic conditions are now subject to stricter rules because of those who use them for psychological reasons/pain.  I’ve had a prescription for one form of narcotic or another for almost 20 years.  I might take the meds for a few days and then take none for a couple of weeks.   I might take one pill on those days, or I might take two or three across the 24-hour period.  Depending on the type of pain I’m having, an extra gabapentin (seizure med also used in pain control) or even Excedrin will work better than the opiate.  Depending on the headache type, a triptan works much better than an opiate.  But on those days when narcotics are the only thing that will make it worth taking another breath so I can remind myself that it will ease up at some point, I shouldn’t have to pay for what an addict is doing.

Addicts are going to get their opiates (if that’s their drug of choice) no matter what.  I see this change in ‘rules’ driving more people to use herion or other illegally obtained drugs, and anticipate notable jumps in heroin deaths and overdoses over the next few years.  I already know of an entire medical group’s practice (for one entire hospital system here) that no longer allows primary care docs to prescribe pain meds because of this new change in the law (doctors already are monitored for how many prescriptions they write for narcotics, how many pills they give at a time, etc).  So the doc who knows the patient the best isn’t allowed to determine what is best for him/her.

My primary care doc  initially wasn’t comfortable in prescribing stronger  opiates when regular Vicodin (hydrocodone 5mg w/ acetaminophen 500mg) wasn’t working (after the discontinuation of Darvocet, which was effective), so I went to see a board certified pain management doctor.  Once I had a ‘system’ of what med to use when, she was then OK with prescribing, so I could have one doctor prescribing the vast majority of my prescriptions (my neurologist is the only other one), using one local pharmacy, and one mail-order pharmacy.

I have worked as a detox RN in a treatment center.  I ‘get’ that drug addiction is a disease.  I have a great deal of empathy for those who are in treatment and making positive changes in their lives.  But their inability to handle meds should not determine my medical care.  What someone else can’t control shouldn’t create issues for MY doctor when I am able to take meds as prescribed, and have for two decades (for chronic pain).  Acetaminophen (Tylenol) is the leading cause of liver failure in this country…. why isn’t that scheduled (or withdrawn from the market)?  Alcohol-related deaths can take out entire families at a time w/drunk driving- should we have licenses for buying booze?  Why are those with legitimate, documented medical disorders that cause pain made to ‘pay’ for those who don’t use the meds as directed?

My primary care doc and pain management doc (who I only see sporadically at this point) know me better than the DEA does.  My pharmacist can vouch for no hinky requests for refills.  I’ve never shown up in an ER asking for pain meds.  I don’t crave narcotics.  I don’t take larger doses, or more frequent doses than are prescribed.  I follow the rules.  And now, especially with winter approaching, I will have to go pick up a piece of paper (getting in and out of the car is painful in the summer, let alone the cold) which, until October 6,2014, was done by phone between pharmacy and the doc’s office.  I had to go every three months to be re-evaluated (which still stands), which isn’t a bad thing.  I don’t think pain meds should be thrown around as if they are insignificant… but  addiction isn’t my problem.  Pain is.  There is a huge difference.  I don’t even let myself get to the point of physical tolerance (when someone takes something as prescribed, and the body becomes used to it being there… withdrawal symptoms can happen if the med is abruptly stopped- and that is not the same as addiction).  There is a gross lack of awareness between addiction, dependence, abuse, and tolerance- and I think that applies to policy-makers as well.

No law is going to save people from themselves if they either don’t want to be saved, or don’t see that they have a problem.  They might not ‘get it’ on the first run through rehab or 12-step meetings… but those who keep at recovery will eventually get there, and be clean.

 

For those who are now in a position of not having a physician who will prescribe pain meds (whether from fear, ignorance, or restrictions from his/her employer- you may not know why they have changed their policies), here are some tips from an RN of nearly 30 years, who has taken care of addicts, chronic pain patients, and lives with chronic pain:

1.  See ONLY a board certified pain management doctor for pain control.  They often have ‘rules’ such as random drug screens, no dosage change over the phone, limits as to how many months before actually making an in-person appointment (vs. picking up the prescription from the desk), etc. Do NOT see a doc who asks how you will pay, writes a prescription, and has a line around the block…. Do. Not. Go. There.   😮

2.  Use only one pharmacy (two ONLY if you also get meds from a mail-order pharmacy for other chronic conditions).  Let your doctors know which pharmacy you use, and offer to get copies of records if they want them.  Pharmacies are bound by HIPAA (privacy laws), and might not be able to tell the doc asking what other docs have prescribed (if someone from the same practice is on call, they probably can, since they are acting on your regular doc’s behalf for you).

3.  Don’t dramatize pain.  Tell the doctor where the pain is, how bad it is, when it is better, when it is worse, what helps, and what makes it escalate.  You may have pain for the rest of your life- don’t wear out the extreme descriptions when you have 30-65 or more years to describe it.  Sometimes letting your doctor know what the pain keeps you from doing is helpful…. those pain scales are kind of useless for chronic pain.  But, if you tell your doctor that when it’s moderate, you have to postpone laundry, or if it’s moderately severe, you have to cancel appointments, that can give better information for chronic pain.  It’s way different than acute pain.

4.  Agree to get tests done to more clearly identify what is causing pain.  If you refuse to get diagnostic tests done, that can indicate that you know that nothing is going to show up.  Not all disorders show up on tests, but working with your doctor when they want more information via testing will go a long way.

5.  NEVER change doses or frequency without talking to the doctor who prescribed the pain meds (or any meds, for that matter), unless you have been given specific instructions.   There are some pain meds that have a very narrow window between effective dose and the dose that will cause you to stop breathing.

6.   Don’t ever forget the good parts of your life.  You are not defined by your pain or any other medical conditions.  You decide if you are happy or not.  You decide if you focus on nothing else.  I know that there are days (and sometimes weeks) when you really can’t focus on anything else for much of the time… but when you can, take advantage of those days and be thankful for your pets, family, friends, the ability  to still work (I’d give just about anything to still be working as an RN), your interests, etc.  Your attitude is completely in your control, even if nothing else seems to be.   😉  ❤

Dysautonomia Awareness Month…. I’m Very ‘Aware’ All Year, Every Year

OK.  October is Dysautonomia Awareness Month… With Breast Cancer Awareness Month at the same time, nobody will care about dysautonomia.  Men are more than likely behind the sanctity of boobs, so along with being a rare disorder that people really are NOT aware of, there is the whole ta ta thing that people go all pink for, and dysautonomia remains a mystery to most, if they ever hear about it at all.  Don’t get me wrong, I’m not ‘against’ cancer awareness, but who on the planet with a pulse and working brainstem isn’t aware of  breast cancer?  I’ve known and do know many women with breast cancer (including my mom, who died in 2003 after surviving multiple cancer sites for 17 years, dying from something unrelated). I understand that any cancer diagnosis is a nightmare (I’ve been there, with leukemia).  (And why is there no blue ribbon with balls on it for testicular cancer awareness? Ladies? ).   Anyway, dysautonomia is something that I’ve lived with for decades- probably longer than it was diagnosed.  It didn’t flatten me until 2004.  And most doctors are clueless.  The general population can’t even pronounce it.  Dis-auto-gnome-ee-ah.

Every morning, I wake up not knowing if I’ll be able to actually get out of bed and begin my day without my head spinning as my blood pressure tanks.  Will my peripheral vision begin to narrow, and will my hearing get muffled?  Or will I actually be able to get up and not have to lie down again?  When I get in the shower, will I get that ‘sweet spot’ in the temperature of the water where I get a nice hot shower, or will it be too hot, and once again start the process of passing out?  My heat intolerance isn’t about temperature preference or comfort, it’s about staying conscious.   My thermostat must stay around or below 64 degrees, or I start to have symptoms.  Fifty degrees is much better if I’m outside.  I wear a light snap-front sweatshirt, left open,  when it’s in the 40s.  If I leave home to go into another building where I have no control over the thermostat, I have to wear 5 pounds of cooling vest inserts.  To stay conscious.  I’ll start to ‘burn up’ for no good reason (and this is NOT hot flashes- I’ve had those, and they are totally different).  Or I’ll get so tired, that doing anything is overwhelming.

I ‘look OK’… aside from being overweight, and having very few eyebrows post chemo (which at this point has to be permanent), I look fine.  That’s all well and good- but it can also be very frustrating when trying to explain why I can’t do something.  I also have multiple ‘other’ medical and orthopedic problems (discs, knees, spine, epilepsy, diabetes, yadda, yadda, yadda…), so when I’m walking I look a bit gimpy, but the dysautonomia is totally invisible if I’m not lit up like a red stop light from severe flushing when the dysautonomia spells kick in.  My thigh muscles have atrophied (probably from diabetes and chemo), which looks weird, and makes walking quite tiresome.  But people really don’t ‘get’ the whole dysautonomia thing.

The autonomic nervous system controls involuntary body functions- blood pressure, heart rate, breathing, flushing, muscle/brain signals, etc.  There are many ways this can all go wrong.  Initially, I had problems with passing out, as well as my right pupil dilating.  Then my gait would get wonky, and eventually I’d keel over and sleep hard for hours.  Temperature dysregulation hadn’t shown up yet.  I was in Texas when this all started, and I did fairly well at first.  When it was first a ‘thing’, I was living in a house (with no central AC- just room units for at night) with a coworker to share expenses (perfect situation; we had opposite schedules, so it was basically like living alone).  My housemate would hear me hit the floor from her room at the other end of the house, and find me passed out on the wood floor.  I thought I was just ‘nervous’ after a recent hospitalization for eating disorders, but she said that there was nothing  ‘nervous’ about me that she’d seen, and she really thought I had some type of medical issue.  One  night I couldn’t get up off the floor like usual, and I agreed that she could call 911.  That started the whole testing process.

I was lucky that I had a neurologist who thought I had dysautonomia. She sent me to see an electrophysiologist (EKG specialist) in San Antonio, who ended up doing a tilt table test.  My blood pressure dropped to 44/16, and heart rate dropped into the 50s (heart rate should go up, and compensate for a low BP, though a BP that low isn’t usually associated with ‘coming back’).  I was put on the first of several meds, and sent home (driving myself 60 miles after nearly passing out).

I continued to have issues with work, but eventually meds were sorted out, and I was doing well enough to get my work done. Additional disorders were ruled out (MS, myasthenia gravis, pheochromocytoma, brain tumor, stroke, etc).   The nursing home I went to work at had some very accommodating supervisors, which made a huge difference in not being panicky when I felt something coming on (the prior place did a lot of ‘threatening’, and since I was the only RN on campus at a drug/alcohol detox center on weekends, I understood the need for a conscious employee :p – but I didn’t want to stop working; being a nurse is who I AM).  I had a mattress overlay in my office at the nursing home,  to put on the floor if I needed to lie down.  I also had a fan from home, as temperature had begun to be something I had to keep ‘moderate’.  If an episode hit, I lied down; when it was over, I finished my work.

Fast forward, and I’m back in Illinois in my hometown, trying to keep things together at work, and it just started falling more and  more apart. I was hauled out by ambulance 10-12 times in a month or so at another nursing home (office job), and it was clear that I wasn’t able to keep working. I’d left a pediatric hospital job since I was terrified I’d get dizzy/lightheaded when handling very tiny babies (or larger, heavy ones), and that just wasn’t something I was willing to risk (along with some other issues with the job itself).  I had to deal with a new neurologist on my insurance plan at the hospital, who seemed clueless.  Once on disability (and Medicare two years after that), I found a neurologist who did know about dysautonomia, as well as a internal medicine doc who was quite familiar with the disorder.  With multiple medications (roughly 25 pills/day on a good day; more if not- and 3-4 shots of insulin) and total control over my thermostat, I’m able to sit up for several hours, but  I have to get up every few minutes to avoid any ‘pooling’ of blood in my legs, or I’ll enter the ‘pre-syncope zone’ when I stand up.

Now, my ‘normal’ consists of having the air conditioner on when it’s 30 degrees Fahrenheit outside.  When there is snow piled up outside, my AC unit is the only one with space around it where the snow has melted from the heat generated by the AC.  I leave home about 2-3 times a month– monthly grocery shopping, a doctor’s appointment here and there, and maybe a short trip to the grocery store about half-way between disability checks, for milk and/or bread.  Everything has to be ‘paced’.  If I do laundry, I can’t unload the dishwasher.  If I take trash to the dumpster, I can’t vacuum in the same day.  And I struggle to maintain any muscle tone, to avoid getting worse… but the chemo I had to have to survive the leukemia has caused deterioration.  I guess there are tradeoffs with everything.  Nothing is taken for granted.

Being on Medicare has been a horrific eye-opener.  I used to do the assessments that determined reimbursement for Medicare patients at the nursing home I worked at in Texas.  I was superficially familiar with Medicare.  Then I was on it.  Medicare is expensive.  There is the part B (doctors’ office and equipment/supply part) monthly premium (about $110).  There is the supplement plan since Medicare doesn’t cover huge portions of hospitalizations and tests (so add another $325 per month).  The part D (prescription plan) is about $75 per month, and between over the counter medications I MUST have, as well as paying out of pocket for insulin, that adds about $125/month (I’ll get into insulin in another post).  SO if all goes well, $635/month goes out the door for medical expenses.   That pretty much ensures no out of pocket expenses for doctor’s office visits, tests, and (knock on wood) hospital costs.  When I was in for 6 weeks for leukemia in 2010, the bill was $300K…. nearly 1/3 of a million dollars.  I will make my last payment on what they didn’t write off this month.  Four and a  half years later.  That’s not included in the $635.

Dysautonomia can be mild or fatal.  With the chemo causing deterioration, and knowing what I was like beforehand, I don’t think I have the fatal type (Johnny Cash did).  I have the invisible, life-altering, disabling, survivable kind.  Some symptoms may be worse than others on different days.  I can have one cheek very hot, and flushed to almost a blue-red, while the other is cool and has normal coloring.  I can have blue fingernails, not from lack of oxygen, but because of constricted blood flow.   My heart rate has dropped into the 30’s for no good reason (that bought me 5 days on a cardiac floor with nurses who were very nervous about the epilepsy- padding the side rails and putting a bed alarm on my mattress that went off if I got up to go to the bathroom- and GADS, they panicked when I got up to walk in the halls for some type of activity one night…. how did they think I lived at home?  Alarmed, padded bed?).  Sometimes one arm is flushed and hot, and the other cool and pale.  I’ve looked ‘dead’ per one former supervisor, with breathing so shallow and extreme paleness, it scared her many times.  I live alone, so have had to learn what sets me off… sometimes it’s as simple as a ‘scare’ on a TV show that wasn’t expected.  But heat and pain are my main triggers.  I’m in constant, chronic pain- that’s harder to control than the temperature.

Some people have POTS (postural orthostatic tachycardic syndrome), which causes symptoms if someone is standing. At all.   Their heart rate goes out of control simply by being vertical. Lots of folks with that need wheelchairs for safety.  There is neurocardiogenic syncope- which is actually a simple faint, until it’s a pattern.  There is pure autonomic failure – where nothing works right most of the time.  Shy-Drager syndrome is one of those total failure syndromes, and even saliva production is involved.  Dysautonomia isn’t one thing.  It’s a combination of symptoms that are generated by an abnormality of the autonomic nervous system.  Some are relatively minor, and others require feeding tubes, and other external measures to make it survivable.  More people have dysautonomia than are diagnosed, per research estimates. It can affect any age group or gender, though females tend to be diagnosed more often.  It can be seen as a conversion disorder or other emotionally based problem, which causes improper diagnoses, and completely inappropriate medications.  I encourage anyone who finds their symptoms listed in the informational links to talk to their doctor.  There isn’t a cure, but it’s generally not fatal, and can be treated.  Getting used to the new normal is the hardest part, as is not being understood.

See the following for more information:

www.ndrf.org 

www.dysautonomiainternational.org

www.dinet.org

 

 

 

 

Turning 50… and Already On Medicare For Six Years

I turned 50 years old today.  I can’t figure out where the time went !  I certainly don’t feel ‘old’, and think that 50 is the new 30, even with the physical limitations I’ve had for years.  I’ve never been one to get all depressed or stressed by ‘big’ birthdays- 21, 30, 40…. but I’m not so sure I like this one.  I started falling apart physically quite a while ago.  It makes me a bit nervous that things could slide downhill more quickly now.  😦   Mortality gets much more real.

I’ve heard (and said) that a lot of how old someone ‘really’ is depends a lot on how old they feel mentally, and how old they ‘think’.  My head still feels like I’m in my late 20s.  My body has felt older than dirt since the mid-90s, before I turned 40.  But I don’t ‘think’ old.  I’ve had to deal with chronic health issues and Medicare since my early 40s. The list of medical issues still hasn’t changed how old I ‘think’.  I have started thinking more about how I’ll manage if my body falls ‘more’ apart.  But my mental outlook is still pretty youngish.

My dad and I went out for lunch the other day (I rarely go out to eat because of the thermostats at most restaurants being set too high for me to be able to stay conscious, even with the ice vest).  I was really excited, as we went to a favorite Swedish restaurant that I’ve been quite fond of since I was a kid.  I mentioned to the waitress that it was the first stop in my 50th birthday celebration, and she was surprised that I was going to be 50… said I looked MUCH younger (quite nice of her).  I don’t have any wrinkles, and my hair is kept short on purpose to avoid being overheated, so the gray at my temples isn’t all that noticeable (though it is definitely there !).  That felt good- at least I don’t look ‘older’.

I’ve already gone through several life-threatening events/diseases (6-hour rape and beating when I was 23, leukemia and 19 months of chemo at 46, etc, blood clots in my right lung – all three lobes and right pulmonary artery), and have chronic illnesses that have required life adjustments or are disabling: diabetes at 31, dysautonomia diagnosed at age 32, epilepsy diagnosed at age 22, degenerative joint disease at 43, chronic pain/fibromyalgia at 32, chronic headaches since I was in high school, osteoarthritis at age 43,  degenerative disc disease at 43, yadda, yadda, yadda.  I’ve been disabled since early 2004. The chemo for the leukemia has made several of the pre-cancer disorders worse.  It sometimes gets a bit scary to think that I could become more of a train wreck with ‘normal’ aging.  I’ve recently been diagnosed with neuropathy in my legs (they’re literally losing muscle mass that is now visible).  They have been getting progressively weaker for a couple of years- since/during the chemo.  If I don’t have a shopping cart at the grocery store, I can’t  get through the building on my own.  Standing in line means increasing leg pain, and feeling like they’re turning to jello in terms of strength.

I’ve been on Medicare since I was nearly 44.  Though I’d dealt with Medicare as a nurse before becoming disabled, being ON Medicare is a totally different kind of circus.

Medicare costs a LOT to have.  People get the idea that it’s a free government program.  That is wrong.  First, working people pay into Medicare every paycheck in the form of Medicare taxes. For some people, it does cost to get Medicare part A  ($441/month in 2013) if specific situations apply. Those who paid into ‘the system’ while working don’t have to pay a part A premium.  Part A pays for a large portion of hospitalization charges  and rehab in a skilled nursing facility, home health care,  hospice, and inpatient care in a religious non medical health care institution.  If someone is admitted to a  hospital for ‘observation’, that doesn’t count as a hospital ‘admission’, so the charges come out of pocket !  In either case, Medicare doesn’t cover %100 of the costs.

Then there is a part B premium (around $110 per month), and covers outpatient doctor visits, various health screenings, ambulance charges, ambulatory surgical centers, diabetes education and blood sugar testing supplies, some chiropractor services, durable medical equipment (like walkers, wheelchairs, prosthetic items), emergency department visits, flu shots, and several other services- generally at %80 coverage.  That leaves %20 to be covered by the patient.  That can add up quickly.

The part D (prescription drug plan, or PDP) can cost a varying amounts. Because of my cancer history and extensive medication list, I get the highest level of benefit plan I can- so about $80/month.  It really pays to shop around.  One of my chemo drugs for the leukemia (that had no alternate option) was about $10,000 per MONTH.  With the PDP I had at the time, my co-pay was over $450 per month.  I’m on many, many other medications including insulin which doesn’t have a generic option.  When the social worker at the oncologist’s office helped me find a different PDP company, all generics- including that $10K drug- had a $0 copay when ordered through the mail-order pharmacy. But I couldn’t change to the new plan until open enrollment that begins in October… I left the hospital in May. Fortunately, a pharmacy agreed to help me after the Lymphoma and Leukemia Society agreed to help (which they later reneged on).  That pharmacy ended up ‘eating’ the cost, as I had no way to pay for it.

Part C refers to Medicare advantage plans.  Medicare contracts with private insurance companies to deal with the paperwork.  They are often very reasonable in terms of premiums, and often include the PDPs.  I’ve been on advantage plans, and while they look great on paper, with a 6 week hospital stay for the beginning of the leukemia treatment, the copays added up in a hurry.  I’m still paying off one hospital bill, 3 1/2 years later.  The cost for that inpatient stay was over $300K.  The plan paid a LOT.  But it still left a lot of out of pocket expenses… nobody plans on having something bad happening.   I can’t emphasize enough how important it is to plan for the worst and hope for the best.  I’ve had to file bankruptcy in the past (before the leukemia)  because of medical bills.  No credit card shopping sprees, no trips to wonderful places…. ‘just’ medical bills.  Getting extra disability insurance is also a huge help when it’s needed.  I have always insured myself to the hilt when I was working, and until my last job, never needed it.  But it’s literally keeping me living on my own at this point; disability from Social Security isn’t enough to live on with medical expenses.

Then there is the Medicare supplement plan (or Medigap) to cover the costs Medicare doesn’t pay for.  The first few days of any inpatient hospitalization generally cost the patient at least $200 per day (and there may be a several thousand dollar deductible).  There are also portions of physician charges, lab/x-ray/test costs, pharmacy costs, etc.  The supplement helps pay some or all of those charges, depending on what  level of  benefits someone decides to get in a supplement.  I go all out with my supplement plan (Plan F- all companies have the same coverage for each level of supplement insurance, so it comes down to premium cost and deductibles). I have NO co-pays for any inpatient or outpatient medical situation.  That will cost $325/month this coming year (2014)…and my insulin is about $50/month (not including syringes/supplies).  The MONTHLY total to be on Medicare (for me) is over $515.  On disability income. But, I know that I’m not going to have ‘extra’ medical costs.  That’s a sort of peace of mind that really doesn’t have a price tag.

Plan as if you will someday lose your job for medical reasons (and pray you won’t !).  If the time comes (and nobody ever knows if a car wreck, disease, or other medical problem will creep up on them), you will NOT regret having paid the premiums for all of those years.  And shop around with Medicare supplements and drug plans.  It makes a huge difference as well.

Chronic Pain in Its Various Forms…and Dysautonomia

While I’ve lost count of the exact number of days, this current ‘spell’ of severe headaches has gone on for at least 4-5 weeks, with maybe five or six days of no headaches at all in any given day.  Of course, it isn’t ‘just’ a headache.  I get the dreaded nausea along with it.   There have been times during most days when the pain lessens, but most of the time it’s there.  Today has been pretty bad- I’m taking a chance by blogging, since the scrolling on a page can make things worse, but I have to ‘talk’ to someone.

I e-mailed my primary doc about changing the nausea meds. After several years on Compazine, it seems it’s lost its touch. The leftover Zofran (from chemotherapy for leukemia) doesn’t do much anymore, either.  She called in some Phenergan for me.  The pharmacy didn’t have the full 90-day supply available, but my dad brought me the 12 pills they had. They will call when the rest of it is available.  I was just so thankful to get anything that may offer a bit of relief from something.

I’ve been trying various ‘schedules’ of different pain meds, from different over-the-counter pain killers (Excedrin, Aleve) to a weaker  prescription med (tramadol) to a stronger prescription med (Norco 10/325).  None of it is working.   I even did a ‘bad’ thing today before taking any other prescription meds (so no risk of interactions) and took some methadone that I have leftover from a while back. It isn’t working, and I’m not willing to take another dose before talking to my pain management doctor.  He’s a board certified pain management doc, and not a ‘doctor feel-good’.  He has ‘rules’, which I respect.  I don’t want a doc who calls things in over the phone without assessing me.  I don’t want the drugs per se. I want less pain.  I don’t expect to ever be pain free, but I would like a lesser degree of pain.

Pain-free isn’t a realistic expectation with degenerative disc disease, degenerative joint disease, fibromyalgia, bulging discs (neck),  diabetic nerve pain,  and chronic headaches.  I’m just looking for a degree of relief that keeps me able to take care of the basic chores around home, and keeps me able to do some ‘minimal’  fun activities, such as watching a movie on TV, playing some online games, playing with my puppy, or other such forms of distraction and entertainment.  The last time I talked to my pain doc, we talked about the nature of degenerative disorders… they don’t get better by definition.  The fibromyalgia and headaches are just ‘bonus’ disorders 😦

I have to be careful about pain in regards to the dysautonomia, as well.  Pain is one of my major ‘triggers’ for heart rate and blood pressure changes that can land me on the floor, passed out.  Those who have severe menstrual cramps that cause lightheadedness and feeling ‘faint’ go through something that is essentially a result of the same thing- vasovagal nerve stimulation.  Vasovagal syncope (fainting) is fairly common. But any sort of fainting is a risk for injury.  And injury is a risk for further mobility limitations. I can’t risk that.  I want to continue to live on my own, and I can’t afford help (nor do I want someone hovering over me). Side effects of many pain meds also increase the risk of lowered blood pressure.  I have to keep that in mind with any new medication, as the interactions with the other meds I take can be risky.  I ‘ground’ myself to home when I am put on any new meds, just to be sure I’m not caught off guard at the grocery store or pharmacy (about the only places I go) with some drop in blood pressure from a new med not playing nicely with something else I’m on.

I’m going to have to go see my pain management doctor soon, to discuss a different plan.  I’ve been on stronger meds before, but have asked to go back on weaker meds, knowing that this is a lifelong thing, and I need options for the future.  For the degenerative disorders, spine surgery and another knee replacement are likely down the line, as well as hip replacements. I want to postpone those as long as possible. 😮  There is the possibility of having some sort of pain-nerve impulse thingie implanted (I need to read more about that).  I’m not all that gung ho about ‘stuff’ being put into my body that involves hardware.  I’m hoping that the weight loss with Nutrisystem will also help my knees and hips… my spine is a wreck from neck to bum, so weight loss will be good, but not a ‘fix’.

Methadone scares me. And, today, it’s not working.  But, it might be something I have to try more regularly to get a final ‘verdict’ as far as its real efficacy.  I’m also very reluctant to take methadone after working drug/alcohol rehab, and seeing how it is THE worst in terms of withdrawal. Those patients made heroin detox look like a cakewalk – and heroin addicts had it bad enough.  I understand that I wouldn’t be taking it for illegal drug replacement, and that chronic pain patients who take medications as prescribed are highly unlikely to develop true addiction (different than physical tolerance or physical dependence).  Only %3-5 of patients who take pain medications as prescribed go on to become addicted (which includes the strong psychological components of the ‘high’, cravings, etc). Ninety-five to ninety-seven percent of us don’t become addicted.  The ‘tolerance’ and dependence may require dosage adjustments.  That’s not because of addiction, but the physical acclimation of the body to the medication.  It gets used to the drug being there, and requires dosage changes to continue to provide pain relief.  I don’t like that, but I understand it.

I’ve also been on the fentanyl patch.  I don’t remember it being all that great at the dose I was on, but it might be something else that is considered.  The nice thing about ‘the patch’ was a continuous release of medication, so no ups and downs depending on me taking another dose.  It was also not hard to stop taking.  That has huge ‘benefit’ written all over it.  When I wanted to go off of it, I was weaned down to lower dose patches, and then given pain pills to taper off of the narcotics altogether- no withdrawal symptoms, and it didn’t take that long.

For ‘breakthrough pain’ on either methadone or fentanyl (or the current Norco), I’ve taken tramadol.  It’s not as likely to interact with the stronger narcotics or create an increased risk for respiratory depression (which is essentially what causes death in drug overdoses- accidental or otherwise).  It’s not a great pain killer, but it can take the edge off of the joint, muscle, and head pain that is getting worse.  Things like ibuprofen and naproxen sodium have limited use with the headaches and fibromyalgia.  They do help with the joint and disc disease to some degree, with no neurological or cardiovascular effects.  Worth having around  and taking !

I’ve tried physical therapy, chiropracters, Imitrex (which helped somewhat), heat (but that triggers the dysautonomia), cold, TENS unit, various pillows, and stuff to unclog my sinuses.  If I thought chewing on the siding of my house would help, I’d be out there with the woodpeckers.  While I’m not losing time off of work (been disabled since 2004), this pain of various sorts does change what I am able to do here AT home.  Things like laundry, vacuuming, other cleaning, etc are put on hold quite often.  If I’m having one of the ‘bad’ days, there’s no way I’ll get in a car and go to the grocery store, pharmacy, or MD appointments (the only places I go).

All I know is that the past several weeks (that have come in waves for years) are getting really old. I’m going to have to stop being stubborn about the stronger meds if I want any quality of life between ‘waves’.  I’m already limited. I want to have as much ability to function as possible, and this level and duration of pain isn’t OK.  My pain doc has been very good about letting me let him know when I need something stronger, since I’ve been so hard-headed about using the stuff.  He knows when I say I’ve had ‘enough’ that  I’m not looking for drugs- I want to not hurt (as much).  I need to make the appointment, and go see him (he does NO prescribing/refills over the phone past the ones on any written prescription).  He does NO dosage or medication changes over the phone.  So, I have to drag my butt in there.  He’ll probably do some sort of injection (spine, jaw, neck, occipital nerve blocks, facet injections). The ones in my lower spine seem to help the most- I could tell that my legs hurt less when I’m at the store after I got the last shot.  I may ask for my left knee to get zapped.

Now to just find a day to go and see him when I feel well enough to see a doctor.  But even though it’s been pretty unpleasant lately, I realize that I have so much to be thankful for.  I know that God hasn’t deserted me, and that I can get a lot of comfort in knowing that whenever I get to eternity, I’ll get a new body without pain.  That helps. 🙂

Update:   After being on CPAP for more than a year, the daily headaches are pretty much gone !  They were caused by hypoxia from not breathing at night.  The rest of the stuff is still a bummer, and I’m off to see my regular MD today (10-19-2016) to get medical clearance for massages and a chiropractor.

Sharing Christianity With Love and Warmth

Sometimes it’s hard to be taken seriously as a Christian, as so many Christians come across as painfully judgmental in their tone and overall intolerance- towards those who don’t believe exactly in what they do. We can be our own worst enemies when trying to encourage non-Christians see how Christianity really is an amazing way to get through this life, and that it just gets better!   This age of so much communication being done between strangers with no interpersonal connection doesn’t help much. Reading comments about online articles, stories, etc. are horribly mean and hateful- and the Christians are among the worst at times.  It makes me sad.   I try SO hard not to be one of ‘those’ Christians (and also not to judge them– they have their reasons for their beliefs, even if I disagree with how they come across, at least with how I’ve perceived them in specific online conversations or about specific topics… and I’m not good at that).  I want to be used by God, not drive people away from Him.  That can be a lonely place.  The ‘holier-than-thous’ have no tolerance for ME, and I don’t fit in anywhere because I see approaching people out of love and respect being more important than being ‘right’.

I’m very limited physically in how much I can interact with people (Christians and non-Christians), and so much of what I am exposed to is lacking the ‘in-person’ body language and non-verbal subtleties needed for complete communication. I base my fairly open and ‘cleaning my own side of the street’ approach to a lot of topics based on my belief that Jesus spoke much more about love than He did about judgement.  Jesus loves everybody, and took the ragtag bunch of people around Him to be the ones He kept the closest to Him.  He didn’t look for the legalistic Pharisees. He didn’t take the ones who could recite ‘rules’ twenty-five ways to Sunday.   He chose the hookers, thieves, the poor, and later, even those who used to persecute Christians to help spread His message. Paul was a huge factor in the spreading of the message of Christianity in those early years, and he was horrible to Christians prior to his conversion !   Who am I to only seek out the superficially ‘acceptable’ people to care about?  Appearances mean nothing, both good and bad. (I LOOK very unfeminine, and pretty ratty a lot of the time. Because of some medical issues that make having hair actually a safety issue, as it gets me overheated very fast, and that triggers a lot of unpleasantness, up to losing consciousness… so I look stereotypically ‘butch’, because my head is shaved, and I don’t wear a lot of girly clothes… a t-shirt with flowers is about as ‘foo-foo’ as I get… that’s just me.  I’ve gotten a lot of nasty ‘looks’  and comments over the years about that).  God can use anybody who is willing!  Even if they don’t ‘seem’ like they’re capable of a meaningful relationship with Christ, or ‘look’ like a bonafide Christian 😉

It’s kind of a lonely place at times to not ‘tow the line’ in some very rigid manner. God meets us where we are, and I think we, as Christians, need to show the love of God in ways that fit the person we’re interacting with.   I don’t ‘fit in’ with how I view some very controversial topics in the conservative Christian community.  I believe in the Bible, and that it’s the inspired Word of God.  I also look at the social, scientific,  and cultural norms at the time the Bible was written, and look at ways to learn more about how that translates into today’s society. I am very aware that I don’t know everything.  But no matter how I view something or someone, I feel an obligation to love the person as someone God created in the womb first, and do all things in a way that doesn’t make them run from any message I may have about how God can have a real place in their lives, no matter what any person’s beliefs, strengths, or weaknesses may be.  What good does it do to judge someone, and push them away?  That isn’t the goal !  Jesus told Christians to go into all the world and preach the Gospel… not judge those who will benefit from hearing it (as in everybody !).   God didn’t appoint me, or any other human, to be judgmental.  Matthew 7 is very clear on that.  The Bible is also very clear on doing all things in love.  Focusing on the good, and showing everyone the definition of love in I Corinthians 13, and the Fruit of the Spirit in Galatians.  Those are our standards.

God has been a huge refuge for me during some really hard times.   When I was raped, He was Who I called out to (silently, in prayer) to give me the strength and wisdom to get through it, and escape.  With the chronic medical disorders I’ve got, God is Who gives me the strength to just deal with another day, even when I just want to curl up and sleep until things get better (problem with that is that the disorders are chronic, progressive, and not going to get better).  When I was diagnosed with an aggressive form of leukemia, my comfort came in knowing that no matter what happened, I’d go on in eternity if I died.  I’d be able to reunite with fellow believers who have died, such as family, friends, and people I’ve read about over the years.  I’d like to share that comfort with others.  I’d like others to know that no matter how alone they feel, God is always around.  When I was in the middle of the last eating disorder relapse, I’d ask God every night literally to just let me wake up in the morning.  He answered all of my prayers during all of those times.  I’m still here.

I don’t run around with my religion on my sleeve (though I do have a few cool t-shirts with messages on them ),  but I will be specific about my beliefs when asked, or when I decide to write about it.  I strive to live my beliefs (and I can always improve !).  I believe that salvation is  a choice.  It is not possible to be ‘good enough’ or ‘earn’ a place in Heaven.  Believing in Jesus, His death on the cross, and resurrection as a payment for our sinful nature -by simply being human- is how I believe people get in to Heaven.  The Bible is very clear on that.  But, there are no pre-existing criteria to ‘qualify’ as a Christian. It’s simply telling God that I know I’ve sinned (we all have, and anybody who is at the age of accountability- which varies with individuals and developmental stages and capabilities needs to make the choice for themselves to seek forgiveness), I ask for forgiveness, and I believe that Jesus died to pay the price for my very human nature and choices that have grieved God, and separated me from Him.  I believe that  Christ physically rose from the dead. I believe that He’s going to return one day to gather Christians still alive here on earth, as well as those who have already left this earth. A lot of really ‘good’ people will be left behind.  I believe that when my earthly life is over, my eternal life begins. And I know that no matter how other people, including  Pharisee Christians, see me, God knows my heart.  That is more important than human acceptance.  I don’t ‘do’ legalism…  I cherish my relationship with the Lord, and other Christians.

I also believe that people have the right to decline God’s offer, and by not making a choice, they actually do make a choice.   They have the right to their beliefs as  I have the right to mine.  My beliefs mean that I only see one way for someone to be ‘saved’, and eligible for eternal life.  But it’s not my place to ‘judge’ someone for not wanting or believing that (I can be sad they don’t choose the same beliefs, but it is NOT OK for me to judge that person).  Those who don’t believe as I do will say I’m being judgmental for saying that there is only one way to Heaven… my answer is this: what is in the Bible didn’t come from me.  God made it a choice, whether to believe or not.  He didn’t create us to be robotic followers.  He gave us all free will. But He wants everybody… He won’t push anybody away for any reason…. so how could I possibly think it’s OK for me to judge anybody for making their own decisions?  🙂

Humans (often Christians) screw up the Bible, and how Christianity is perceived, more than any other factor on earth.  The Bible itself is fairly straightforward, and with religious and historical scholars having written volumes on the various cultural, social, and scientific things, it’s easy to see that God’s plan for our salvation is timeless.  It was seen as heresy when Jesus died and rose again- a conspiracy of major proportions.  Some people still see it as such. Some just think it’s bogus.  That’s their right.  It saddens me, but I still accept that they have the choice to believe what they will.  Faith comes with continued belief, and it’s different for everyone.  God didn’t make us all identical cookie-cutter people (pretty great, eh?), so we all ‘do’ this journey in our own way.   And, we can pray for those who don’t believe, and continue to be kind and compassionate towards them.  How will they ever find Christ if Christians are the first to bail out on them?

To me, the requirements for salvation are absolute; there is only one way to become a Christian-  BUT there are as many ways to BE a Christian as there are people… . It’s a choice.  It’s an active belief, not a passive assumption.   God can use ALL of us 🙂 

I believe that God can use anyone who makes him/herself available to Him.  He doesn’t demand perfection. He doesn’t demand we ‘speaketh’ in a completely unnatural way when we talk to Him.  I am not a fan of religion at all (mindless rituals and rules)… God wants a relationship with every single person on this planet. 🙂  He waits until we seek Him, but then we are His forever.  He won’t force Himself on anybody.  He gave us free will.  And, He has a single requirement for being with Him forever…. belief.  Faith grows over time, but belief is a choice.

I can’t imagine NOT believing what I do.  I can’t imagine NOT believing in Jesus, or His death and resurrection.  I can’t imagine NOT believing that He is coming back.  I can’t imagine NOT having the absolute assurance of Heaven when I die. To me, it takes a lot more faith in “nothing” than it does in a loving God whose Son walked the earth in human form over 2,000 years ago.  I also don’t see humans as a lot who are higher up on the reliability scale.  I couldn’t believe in a mere mortal.  Just wouldn’t work for me.   I’m glad for my upbringing in an evangelical church.  I’m thankful that I had good experiences with how God was taught to me, and that I had several outlets that were wonderful experiences to reinforce what I’d learned (youth groups, summer camp, working at the same camp during 2 1/2 summers, choir, etc).  I’m also very glad I read through the BIble cover-to-cover on my own a few times, so I saw what is in there for myself…. not JUST how a pastor saw it. I’m thankful for study Bibles with amazing notes from reputable Bible scholars to enhance my understanding.

I wish that for everyone. 🙂

When Dad Had Surgery

Those who have read my blogs know that my family is no stranger to various cancers and health issues.  My mom had bilateral mastectomies (separate surgeries), a lung resection, and brain tumor removed- all cancer. She also had chemotherapy and radiation. I’m a medical train wreck, including leukemia (APL/ AML- sub-type M3), diabetes, dysautonomia, multiple pulmonary emboli (all three lobes- acute, subacute, and chronic -all found at the same time), lung scarring, seizures, multiple concussions, yadda, yadda, yadda…  My dad has been the rock for both of us (mom died in 2003, after being 17 years free of cancer, but with 10 years of dementia caused by the radiation to her brain; she died from sepsis- not cancer).  Dad is the one who takes care of my beloved schnauzer when I’ve been in the hospital.  He didn’t own a bottle of Tylenol until a month ago.

Dad had to go to the doctor for an annual look-see before getting his year of thyroid pills refilled. The doc poked and prodded on his neck, as per usual, and felt ‘something’. He decided he wanted to get an ultrasound to figure out what the hard pea-sized ‘thing’ actually was.  Dad got scanned (I had to reassure him that it was painless and very quick), and instead they found a large (2 x 1.5 x 1.5 inch) mass coming up from the right side of his thyroid.  That’s BIG for the neck area- there are a lot of veins, nerves, arteries, muscle, windpipe, and esophagus related structures in there.  Now they wanted a biopsy.  Numb it up, take some needles and withdraw some of the tissue. They did that, and dad did well… the results, however, were inconclusive.  He was sent to a neck surgeon to figure out the next step.

The neck doc had seen the biopsy and ultrasound results, and felt that it was a cancer, but that it had actually replaced the actual thyroid tissue on the right side; the left side looked OK, at least from the tests.  The ENT surgeon (neck doc) decided to get a CT of the area to check for any lymph node involvement. He did feel that it was some sort of cancer, but reassured dad, and myself, that the vast majority of thyroid cancers are fixed with surgery. Dad should be fine.  But, in the meantime, they wanted to get some more biopsy material, to see if they could narrow down what was going on in there- but bottom line, the thing had to be removed.  It was too squirrelly to leave in there.

Dad is a guy who is 80 years old, and takes a lousy Synthroid pill every day. That’s it. He lives alone, runs around ALL over the place, has a social life that pretty well has him ‘booked’ every day with something, and has really never known anything about chronic or life-altering illness. He has been incredibly blessed.  He had a busted appendix in the early 80s- that was bad. But he got well. He had his gallbladder removed, and aside from post-op vomiting, he was good to go in a week.  He’s been remarkably healthy.  SO, all of this medical stuff that involved HIM was completely foreign.  Mom had numerous surgeries and became totally dependent on him during her last 10 years (he was amazing as he cared for her at home). I’m mostly independent, but when I’m in the hospital, he’s been the go-to guy to make sure my dog is OK, and my laundry gets done when I’m holed up. He has been really healthy.  This whole ‘being sick’ thing isn’t something he really knew what to do with.

While I know that I’m likely to outlive him, I hate even thinking about him not being here.  I have very few people around here that are very present in my life. I’ve got friends- mostly in Texas. The people I know here are mostly interacted with on FaceBook- most I haven’t seen in 30 years.  Dad is the person I talk to daily.  He’s the one who I know always has my back. I don’t have anyone else who could take care of a schnauzer in heart failure with medications (or who even knows her very well), or who I can call for just about anything.   I have some amazing and incredibly dear family scattered about… but dad is just a few minutes away. They are wonderful, yet my physical situation doesn’t make it possible for me to be all that mobile to see them all that much; I certainly feel that I’ve been too much on the ‘fringes’ to just call anyone.  Thinking that something could be wrong- and BAD wrong- with him was a lot to take in.  I have been going to MD appointments with him during this- partly because I want to be supportive, and partly because I’m an RN (disabled, but still have my license since I earned it, and it is MINE) and understand more of the medical terminology, so when we leave, I know how to answer his questions better.

The day for surgery finally came, and while a friend of his got him to the hospital, I definitely wanted to be there before he went into surgery. I wanted to talk to the anesthesiologist about his severe vomiting after getting Versed for other procedures (the anesthesiologist practically challenged me on that- said it wasn’t possible- must be the gasses used, even though it was the only common denominator the times dad had gotten sick- and a few times he hadn’t had ANY gas….time to back off when the doctor thinks he’s always right- wouldn’t help dad, and the doc wasn’t going to listen).   He ended up giving dad Versed, and sure enough, he was sick- though not nearly as badly as other times since they gave him more anti-nausea meds post-op.  Evidently, this type of surgery is more likely to cause a problem with nausea and vomiting because of one of the nerves in that area- which dad didn’t need to hear minutes before going into surgery.  He was already terrified.

They wheeled him off, and his friend and I began the wait.  It took about 3-3.5 hours for the actual surgery, then about 2 hours in recovery. After the surgery, the surgeon (who is wonderful) came out and talked to us.  The initial pathology report sounded potentially ominous. He thought it was a low grade lymphoma, and it might require chemotherapy. It wasn’t thyroid cancer. But until the final pathology reports were back in about 5 days, there wouldn’t be any more information than that.  No point in telling dad part of the story, so he could worry- we all planned to stick with ‘the final pathology reports aren’t back’ which was true, and kept him from spending days in terror thinking he was up against something terminal.  Nobody hears ‘cancer’ and their first thought is that it’s positive.  Since I’d been through extensive chemotherapy, my initial reaction was that he’d have that to deal with, even though most chemo isn’t a daily occurrence.  Most chemo is anywhere from every few months to a few times a week (until the time when pills are used daily for maintenance for a period of time).  I cried. I didn’t want that miserable existence for him…he was always on the go.  Having an indeterminate amount of time to deal with feeling lousy was no way to spend the precious years he has to live.  He’s no where close to slowing down.

Dad stayed in the hospital for 2 full days after surgery. More on that in another post.  He did  pretty well from a nursing standpoint, but from the perspective of a daughter, he had one rough day after surgery and was gradually improving, but it was still tough to see my active, never-holding-still dad lying in a bed, or sitting in very institutional furniture.  My dad who can graze his way through the day eating anything in sight was doing well to get a diet Sierra Mist down.  This is a guy who likes to eat!  He was nauseated most of the time (but can’t be the Versed!).

We got to the appointment to hear the final pathology report…more anticipatory tension.  We ended up getting some relatively wonderful news- yes, it’s a low grade cancer, and he’ll need scans to check the rest of his body for other masses- which may or may not have to be removed, depending on if they were causing trouble.  The mass was well-encapsulated, so not just spreading willy-nilly in his neck.  Also great news. The surgeon thought it had been there for 5-10 years, it’s that slow growing. He’ll be seeing an oncologist after the scans to find out what was next (come to find out, he’ll be seeing my oncologist, so I could reassure dad that he’s a good guy).  I got some label for what the description of the mass was, but when I looked up the words online, it was more confusing than helpful; will wait to ask the oncologist 🙂

Dad is going to be OK.  The doc said that this kind of cancer won’t kill dad. It’s quite probable that he’s going to have another 10 years of quality living.  That is a huge answer to prayer.  Yes, one day dad will die. But thankfully, it won’t be anytime soon. ❤