Sometimes Being Homebound and Isolated is Really Hard

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

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

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

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

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

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

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

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

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

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

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

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

Do Nursing Students Learn the Names of Medications Anymore?

VENTING HERE !!!  I’m frustrated with the general group of people I used to work with.  I love nursing, and am SO thankful I’m from the ‘old school’ of nursing. I still have my license even though I’m disabled, because it means something to me.  I worked hard for it. And it was my main identity for the 20+ years I was able to work.  We still had to do things that are done by machine now, but actually had to DO them ourselves (vitals, handwritten charting, doing our own orders, etc- no techs or CNAs in most hospital jobs when I started… on an acute neuro floor, I had 14 patients on the night shift). IV pumps weren’t used much- we had to count the drops with our wristwatch, and know when the bag was due to run out BEFORE it did, so we didn’t risk a line clotting off.  We didn’t have pulse ox monitors- so we had to look at skin color, and other symptoms, and then call the doc to see about getting ABGs done.   Older nurses get mocked, but we did a lot with much less mechanical help. When something breaks down, who knows how to improvise?   When I graduated, I had to test urine to determine how much insulin to give.  Blood sugar monitors were not common, and even in hospitals, an entire floor (neuro and OB/Nursery in my situation; NICU got their own) shared the monitor when they first came out.

But my major beef when I go to the doctor’s office now is the lack of understanding and interest in medication proficiency when the nurses review my meds with me.  It’s a huge part of their job- and yet pronunciation is abysmal, and knowing what the meds are for is worse.

I am constantly stunned at how few nurses I encounter are able to pronounce the names of medications, and know the generic names of brand drugs.  It’s appalling.   I graduated from an ADN/RN program in 1985, and in order to do so,  our entire class  (standard practice in all nursing schools I knew of back then) had to memorize brand and generic names of ALL meds our clinical patients were taking, the reason for the meds, usual doses, side effects, SPELLING, etc.- and hand write them on index cards, which were checked by our instructors- no boxed sets of cards from the bookstore. No apps.  An index card and pen, with a drug reference book was our ‘app’.

Take some pride, dear nursing students- and full-fledged nurses! Make yourselves sound like you have the education you paid for (generally too much, if you started with some big  school).  Don’t stumble over the names… learn how they’re pronounced. Ask.  Sound like you’re in command of any medication review, or at least go look it up later if you don’t have to give an unfamiliar med yourself- then look it up before.  For hospital and nursing home nurses, know your patient base, and get familiar with the most common meds.  Generic, brand, what they look like, etc.   I’ve caught the wrong meds in those bubble cards in nursing homes more than once, just by knowing what they normally look like.  And hospital pharmacies aren’t perfect…. know what you work with ! Sometimes it’s just a new supplier.   Don’t be afraid to call and clarify something, or send it back to the pharmacy to be double checked.  If you give the wrong med, it’s on YOU.  Nobody else.

I’m at medical appointments more often than I care to think about because of multiple disabling diagnoses, and a routine part of each appointment is reviewing my current medications.  I have to keep track of two types of insulin, and around 10 ‘scheduled’ prescriptions, and more OTC meds that I take routinely. Then there are the routine supplements and many PRN meds- prescription and OTC (that’s ‘over-the-counter’).  And I can pronounce all of them, in their generic and brand forms.  It’s not rocket science.  It’s medical literacy.   It’s also the JOB of any working nurse who has to review or give medications.  How do nurses make notes about new orders if they can’t spell the name of the meds?   When checking meds against MARS, how do they know FOR SURE they’re giving the right med, if they can’t pronounce or spell the names ?  Or do you just figure you can look it up later and hope for the best?   Never stop actively learning (not just hearing things passively).  😉

When talking to the hospital pharmacy, do you know the difference between Xanax and Zanaflex?  Do you know which one is tizanidine and which is alprazolam?   In an emergency, do you know which one can be reversed with Romazicon (flumazenil) ?  Or do you  need a few minutes to go check, as the patient’s respirations drop to the point of needing intubation, when knowledge of the meds (and knowing where they are in the crash cart or emergency box) could save time and unnecessary procedures ?  If not, you really are not competent to give or review medications.  If it’s a weird med, or something given for a condition that isn’t common where you work, then ask the patient.  They might not know- but you might learn something if you take a few minutes after work to look it up.  Patients can be huge resources with oddball meds.

Nobody can know every last medication out there- there are times when reference books (or apps… I liked actual books when I was working) are absolutely needed and a necessary part of being  competent and conscientious.   But the medications that are commonly prescribed for various conditions typical to your work environment  should be part of any nurse’s engrained memory.   If you work neuro, know the meds for epilepsy, Parkinsons, MS, CVAs, increased ICP, etc. If you work pediatrics, know the general ‘rules’ for Tylenol and ibuprofen, and the different code meds that should be posted in the patient room with their weight and appropriate doses.  If you work drug and alcohol rehab, know the meds needed for ODs, detoxing, and what symptoms to look for during withdrawal for the various categories of drugs.  You should be able to pick up on mistakes- including those given to you when taking or checking orders.  I’ve had to call doctors back, and verify doses, when they  just didn’t seem  right when I was checking orders.  Especially when working in pediatrics, geriatrics, and with patients with renal insufficiency or outright renal failure.

I learned the most about brand/generic information during the time I worked in nursing homes (so don’t squawk if you have to take a job in a nursing home- you will learn medications in such a way that you will be better in ANY nursing job you have later on).  I learned about the fragility of doses in pediatrics- and how to dilute meds to give the precision doses required of a 2kg newborn. I always double checked my calculations with another nurse, and the pharmacy (we had a pediatric pharmacist available at all times, which was wonderful- but not having that is not an excuse to double check doses).    And, never to give any dose to any patient if it just didn’t seem right.

In general med-surg nursing, I learned about how IV drugs should be given safely (so if you think that you’re wasting time in a med-surg job instead of your ‘dream position’, consider it what your nursing school didn’t teach you- after you have to complete an ‘internship’ that didn’t exist 30 years ago).  Don’t skip the saline flush before giving the IVP, even if you know it still has saline in the lock from the last flush- you don’t know for SURE it’s patent- things shift, and meds can HURT if they go into the tissues.  My dad complained about his IV site for 2 days when he was given nausea meds, and there was never a saline flush before the med- just after.  It wasn’t an overt ‘blow’, but it wasn’t patent in a normal way. He was treated like he was clueless about his own pain during the medication administration.  SAS(H) is still protocol in any place I’ve been (check your facility P&P Manual).  Don’t be lazy.  Meds that are pushed through infiltrated veins hurt (yeah, I said that before).  Take a couple of minutes to do it right.  It takes much less time to check patency than it does to clean up a patient and full bed change from the nausea med never getting a chance to work, and the patient puking his toenails up.  And some compassion? That will go a LONG way.

If we didn’t know the information that made us ‘floor ready’ by the time we were to graduate, we didn’t graduate. Period.  Very simple. Our orientation was ‘here are the narc keys, there’s the bathroom, here’s where you punch in, and good luck’- as the off-going nurse snickered. If I was lucky, the ADON was still around until about 6 p.m.- after that, I was the only R.N. educated person in the BUILDING of 150 nursing home residents (I had the skilled wing of 30 by myself for 3-11, and another 30 dementia patients if I worked a double on 11-7).    Three to four days tops for orientation  back in the 80s.  A couple of weeks in the 90s, and then ‘babysitting’ for 6 friggin’ weeks with a preceptor in the 2000s, because nobody trusted that someone with a license actually knew what the job required. Very sad.  I had a nice preceptor who ‘got it’ that the job there wasn’t my first rodeo- and it was nice to have someone paid just to be a resource for me (my main ‘needs’ were:  how to call a code, how to deal with the abuse cases and social services when a parent visited a kid who’d been on the news for being beaten or burned, and dealing with the general procedures for dealing with new orders, which docs are user-friendly, etc).   Very sad to see the need for internships; when nursing schools do their jobs, nurses graduate with enough knowledge to not need internships.  Most places have a skills checklist that has to be completed to a respectable degree before being turned loose, but those were pretty basic.   Nursing school used to teach us how to not kill someone on purpose- and be safe upon graduation.  Boards weeded out the rest. We still had things to learn, but we could take care of a patient without a babysitter.   Now  many schools are for-profit institutions that really don’t care about your education or if you did or didn’t learn something… it’s on you to be the best you can be.  Some schools are better than others- and some still care, but it seems that actually doing procedures has gone the way of the pterodactyl.

The entire six weeks I was inpatient for leukemia (on neutropenia precautions, so isolated), not one student nurse ever did anything but follow my assigned nurse around.  Most didn’t speak.   When did this happen?  We were giving meds the second week of class (with supervision) and added any procedure from catheters and NGs to IVs and wound care as soon as we got patients who needed them.  Hands on.  School should teach you that !

Technology is a great thing.  It’s great to be able to look up various disorders and meds, but it should never be a replacement for actual knowledge.  Passing boards in 1985 meant getting at least %60 of 1000 questions (ONE THOUSAND) correct (which I thought was horribly low- that’s a ‘D’ percentage-wise), during a two-day, four-part hand answered test (little boxes were filled in for computer scoring).  There was no ‘luck’ in getting 75 questions right, and then getting a license.  We had to get 600 or more questions right. It took about 3 months to get results.   And the next chance was 6 months away if you blew it.   Three tries, and back to school if you couldn’t figure it out by then.   The way it should be.  Competence… not laziness with looking something up, and then forgetting about it.  When someone is crashing, there’s no time for the internet or computers.  You need to MOVE, and do it right.  Knowing meds is a huge part of that.

Have you been the only nurse at a code on a neuro floor who knew to ask the doc running the code if he wanted a Foley inserted BEFORE giving mannitol?  (and why?). Then have him ask YOU what the dose should be?  Have you HAD to find an IV site in a vein as proximal to the heart as possible, to give adenosine to a 13-month old who went into SVT, and had crappy veins- and knew WHY it was important to get that vein so close to the heart?  Have you known how long D50 lasts after giving it for hypoglycemia (and that every patient is different, both in how fast their sugars come up- and drop, and how ‘low’ they can be and still take something orally instead?). Do you know that D50 is unpleasant, with a warm, ‘gotta pee now’ feeling?   Do you know that D50 will wear off before the cab gets there to take the patient home from the ER if you don’t give them some protein to stabilize their blood sugar?   If you work on a floor where someone can code, could be diabetic, have reactions to meds, etc., YOU need to know the possible meds you may need to help them, and anticipate what the doc may order. And anywhere you work, there is the possibility of someone having multiple medical conditions and medications.  All medication knowledge is valuable.

Do you know that the elderly can have paradoxical reactions to things like diphenhydramine? Or that they can even get delirium from meds like cimetidine?  Or that they are not great candidates for most psychotropics, because of reactions, as well as fall risks?   Do you know that benzodiazepines that are discontinued abruptly (in anyone who has taken them regularly, but with even smaller doses in the elderly) it can very likely lead to seizures?  Do you know what meds are benzodiazepines?

Maybe things are overall better than I’ve encountered, but with my own experience with more than one doctor’s office and more than one nurse, the medication knowledge is poor.  Nursing communication websites also talk about how nursing school glosses over a lot of things.   Get the pronunciation right.  Know how to spell meds, and what they’re for- even if just a ballpark idea.  READ your nursing medication reference books (or apps).  Know what to anticipate if you have a 12 week pregnant 15 year old with diabetes,  kidney failure,  and constipation after an appy… what will you do if you get an order for Milk of Magnesia from the doc on call, if you forget to mention that she has renal problems?  Will you question orders for NSAIDs if she has any type of  pain?

Newbies, NEVER let someone rush you into giving something that you have questions about.  New nurses who don’t ask questions are very scary beings.  I’ve worked in staff, charge, supervisory, and department head positions (with an ADN).  And my first question when I was in charge or supervising, when asking the current nurses about any newbies, was if they asked questions or not. IF they didn’t I was following them like white on rice.

Be proud of being a nurse.  Knowledge is power, and it will never be anything but a benefit. It will make you a more valuable employee.   And respected by your peers and supervisors. Patients also hope that you know at least as much as they do about most of their meds.  🙂

OK.  Done venting.  It’s 6:30 a.m. and I haven’t been to bed yet… I’ll come back and be my own grammar warden later on 😉

Sorting Through The Symptoms…

 I’m whining.  *** Warning *** I’m not chipper and smiley right now…

Read at your own risk 😉

This has been a weird few weeks.  Actually, things started to get worse with the dysautonomia during chemo for leukemia, which was fairly expected, but it’s getting worse.  Chemo messes with autonomic dysfunction, especially with diabetics, or those with previously diagnosed dysautonomia.  Add in some menopause, and changes in some medications/insulin- and the party just keeps getting better.  I’m tired of trying to figure out what is from what (fibromyalgia/chronic pain, chronic migraines, chronic headaches, reactions to foods, etc).

This past weekend (a few days after two epidural injections- one in my thoracic spine, and one in the lumbar spine), I had some horrific nights with severe leg spasms and cramping. Normally, I don’t have any type of reaction to the steroid injections, other than a day or so of higher than usual blood sugars, so I didn’t really think that was the cause.   I’ve had these  spasms before, but usually getting up once and forcing my feet into a ‘flat’ position, then walking around for a few minutes generally helps.  Friday night was like that.  Saturday night was a nightmare.  I was up every 45-60 minutes, with spasms that actually made the calf muscle (the ‘drumstick’ one) have an indentation in it (like a shallow dish) until I could get the muscle relaxed.  These types of muscle spasms are incredibly painful, and I find myself doing  sort of breathing that reminds me of someone giving birth on TV. Or acting like it.

I finally gave in and called my pain doc early Sunday morning – around 7:30 a.m.  He was very prompt in calling back, and heard me out when I  asked about serotonin syndrome- which he didn’t think was likely. That was good news (no need to go to the ER).   He did  tell me to not take the tramadol anymore, just in case.  I’ve been on methadone for pain for several months now, and had noticed that it wasn’t working as well with that original dose (which spooks me after watching people detox from methadone when I worked drug/alcohol detox.  It’s THE worst type of detox that I’ve ever seen -and I’ve seen lots of alcoholics, cocaine/speed addicts, heroin/opiate addicts, and benzodiazepine addicts- they have a ‘bonus’ 10-15 days after they stop taking the benzos, with another round of acute symptoms, etc).  I’ve been chicken about even taking methadone- but it’s a legit pain med, not expensive- AND, when used as prescribed, it’s safe. I use it as prescribed, and it still gives me the creeps.  I’m lucky to have found a pain doc who doesn’t just write prescriptions right and left.  There are ‘rules’ for being one of his patients.  I respect that.  At any rate, he told me to take a bit more methadone then and another muscle relaxant, and try to get some rest.   I did as I was told, and did get some sleep.  During the worst part of the spasms, it feels like the muscle is being torn from the bone- that has stopped, thank God.   Today has been one of fatigue- but no more spasms.

Trying to figure out what is going on when I start having symptoms can be tricky.  I had e-mailed my primary doc about the symptoms on Friday evening, and she wants me to have some lab work done, which is a good thing.  As a diabetic, I’m a little on the paranoid side about my kidneys.  The chemo was hard on my blood sugars, and I’ve got them MUCH better- but still some wacky ones here and there.  I’ve had a lot of peripheral and autonomic neuropathy symptoms- so that’s sort of my ‘default’ assumption when something is weird.  I get flushed, my skin is hot- but I can feel cold (strange for me), I get blotchy areas on my chest, and in general don’t look OK….

Dysautonomia episode w/ chest blotching, severe flushing, lightheadedness, and other symptoms that come and go with various intensities.

Dysautonomia episode w/ chest blotching, severe flushing, lightheadedness, and other symptoms that come and go with various intensities.

It’s hard to know if muscle cramps could be from potassium, sodium, calcium, or magnesium deficiencies (and those can get really bad- as in don’t make plans for next weekend, since you could be six-foot under by then).  Bulimics are very prone to those- and electrolyte deficiencies are big in sudden deaths from eating disordered patients.  But I’m not in that category any longer, thank God.  The peripheral neuropathy (likely diabetes related) in my legs doesn’t help.  My thighs have deteriorated, and actually shrunk (posterior thighs)- so they tend to hurt faster than before, after doing anything.

My blood pressure has been crazy again (directly from dysautonomia changes), and I’m going to have to start a different form of propranolol (Inderal), as every Medicare part D (drug plan) formulary I checked has cut out the extended release from the generic list.  It’s been generic for a LONG time- but now it’s priced in the ‘preferred BRAND’ category.  I have too many meds to spend a $42 co-pay for 90 days for one med (well, actually two- they cut the extended release seizure meds as well- but I do OK on the regular release form of that).  I already have to pay out of pocket for insulin and syringes, since getting them would push me into the ‘coverage gap’ (donut hole) requiring ALL meds to be out of pocket- which is a map for going straight to non-compliance.  And a non-compliant patient is loathed by medical professionals.  Doesn’t matter WHY someone doesn’t take their meds. There are a LOT of us out here who have to juggle medical expenses to be sure there are funds for the entire year.   Medicare is not free.   Anyway, the symptoms are acting weird, and some days, it’s hard to get much of anything done.  BUT, I still have so much to be thankful for.  I can still think, and put together what I think is going on so I can tell my docs the information they need to know.

Menopause is a special little treat that makes the dysautonomia worse. I have had a few hot flashes- and thank GOD that they aren’t the same as my general heat intolerance.  They are brief, and feel like fire from inside… I adjust the air conditioner (had it on when it was 17 degrees Fahrenheit this winter), and ride it out.  I hadn’t expected the ‘morning sickness’ from the hormonal mayhem, so Phenergan and Zofran have become good friends.

Oh well, done venting 😉   It’s been unpleasant.  But, I’m still living indoors, and have the blog and other online interactions (though the public comments on most sites aren’t worth the nastiness).   I’ll get the blood test done this week.  Onward !

UPDATE:  The Propranolol LA 120mg (generic for many, many years) is actually $77 per MONTH out of pocket.  And I have to have it.  I tried the regular release and all I did was sleep, get up to take meds, and sleep some more.  My life is limited, but being awake is one of the perks I do look forward to.

When There’s a Death In The Family

On March 2, 2014, my fifty-five year old cousin died. She would have turned fifty-six in May.  She was only five and half years older than I am, and my closest cousin on that side of the family since we reconnected as adults.  While she lived about 80 miles away, we stayed in contact by e-mail, phone calls, and the yearly family Swedish Christmas Eve party.  I’m still sort of numb, though her death didn’t come out of the blue.  She had a particularly evil form of cancer.  But it’s hard to really accept that she’s gone. She’s the first in our generation of cousins to die, who lived past infancy or early childhood; there were some tragic deaths of infants and children in the family, including my cousin’s older brother at age seven, when she was eleven months old .   If anybody could have beaten this, it would have been her.  For a while, she seemed to be handling chemo relatively well (it’s NEVER easy).  The complications  from the cancer and chemo were another story.  My brain isn’t working that well in writing this, so I apologize ahead of time if it’s scattered.  It’s disjointed, and it’s really, really long…  (for my cousin, the textbook editor… always succinct and grammatically proper… oy).

Our grandmothers were sisters who came to the US via Ellis Island from Nordmaling, Sweden (WAY up on the northeast coastal area, Lapland, reindeer, midnight sun) in the 1920s. They came over on the ship called the ‘Drottningholm’, leaving from Göteborg, Sweden when they were in their late teens and early 20s.  There were 13 siblings in all, and most of them came here, settling in the same general area in the Midwest, in and around Chicago. Nobody spoke English before they got here. They left everything they knew to start a new life .  Eventually, many moved all over the country as their families grew, and jobs took them away from the Chicago area.  Our parents are first cousins (at 81 and 89 years old)- both still very much alive and running around.

When we were kids, that five and a half year difference in age was huge, and I was in the ‘little kids’ group of cousins when we got together for family parties.  The big  yearly family  party was the Swedish Christmas Eve  shindig , and it was THE family party to look forward to  (crazy, crazy fun party !!). There is still a smaller version, that is equally anticipated and keeps that Swedish heritage alive, which is such a treasure.  Whenever possible, family came from all over to attend that party.  I’ve blogged about that elsewhere 🙂   I adored my cousin. She was ‘cool’, and always nice to us younger kids.  I was also the recipient of some of her outgrown toys when I was a little kid, which I still remember (really nice doll buggy, and a whole set of ‘Little Kiddles’ – little 3″ tall child dolls who had their own house that doubled as a carrying case !!).  We lived in the same city for many years, which not all of the cousins did, so I’d see her more often than many of the others of that generation. It was still only a few times a year, yet it was often enough to really like her and enjoy the times I did see her ( there were two of the boy cousins closer to my age that I saw regularly throughout the time I lived at home, before moving to Texas after nursing school in late 1985).  This cousin was someone I looked up to as a kid, and was so glad to reconnect with her when I moved back to my childhood hometown in late 2002.  I moved back a few weeks before Christmas Eve, so we saw each other  for the first time in many years at the now smaller Swedish family party.  We quickly became as much friends as  we are cousins.

When this all started last June 2013 (thereabouts), she called me a few times about some troubling symptoms, and her intense feeling of being discounted by the first gastroenterologist she saw (I later suggested she send her first full colostomy bag to his office).   I’ve been an RN since 1985, and she had some questions, and wanted to know what I thought about this guy saying  she was fine except for a minor problem (for which she was given some topical medication), and did that sounded ‘right’. Though disabled, I still keep my license, and need the 29 years of knowledge and experience to deal with my own medical issues- and am always more than willing to be a sounding board or ‘medical translator’ for family and friends.  This is a cousin who called me in the past for some of her family and  own questions when medical issues came up, and I knew that she knew her own ‘normal’ very well; she needed to listen to her ‘gut, in my opinion.  She’d been in France a few  weeks earlier, and had some vague symptoms there, and they were getting worse.   I told her that if she felt that something wasn’t being addressed, she might contact her primary doctor for a referral to another specialist.  And she did.  She was able to take a scheduled ‘fun’ trip to California after the initial specialist appointment, before seeing the new specialist.  While I was glad she was able to travel at the time, I’m even more thankful now that she was able to have two great vacations before her 9 months of hell began. 

She had an appointment for additional testing, but before she got there had a severe episode of rectal bleeding while at work, and was immediately driven to the ER at a nearby hospital.  She got the preliminary diagnosis (from a tactless ER doc) that she had a rectal mass.  She had known something wasn’t right.  She was admitted for more tests, and long story short, she was diagnosed with a neuroendocrine colon cancer after surgery and the full biopsy, which surrounded her rectum about %75 the way around it (basically like a fist around the end of her colon), and needed a permanent colostomy.  Surgery  took a little over week to actually get done, and in the meantime, she was in intense, constant pain.  She had a moderately ‘normal’ recovery from the surgery, and had to get used to the colostomy, and some decent pain management.  From there, she spent some time in a rehab facility to regain her strength before going home. I remember there was more going on (I still have some brain fog post-chemo), but she was looking forward to getting on with treatment. At that time, the plan was to treat it, and her plan was to do what was needed to  recover, and keep the part of the tumor that couldn’t’ be removed in check.

Now, I get mixed up as to what happened when, but over the next 9 months (give or take a week or two), she had non-stop hospitalizations and  complications with chemo and the cancer.   They were unable to completely remove the tumor because of how it was positioned and the nearby blood vessels, so lymph nodes in that area and additional tumors (spread from the main one) in her liver began to be an issue, growing and causing pressure.  She was given  various types of chemo (including a clinical trial ‘cocktail’ of already approved meds used for a different type of cancer, that was being looked at for neuroendocrine tumors), and I really felt that if anybody would be in the ‘survivor’ percentages, it would be her.  She was in otherwise  good health, and she was young, especially for this type of cancer.  But, neuroendocrine tumors are absolute bastards in the tumor world.  When I was looking up information when she was first diagnosed, I was horrified at the statistics… but I still thought that she had a chance.  It’s never over until it’s over. (Valerie Harper was diagnosed with a brain tumor and given three months to live; that was fifteen months ago, and she has said “Don’t go to your funeral until you’re dead”, and did ‘Dancing With The Stars’.  I love that. 🙂  )  And those statistics never differentiate between ages, other health issues, or actual cause of death. If someone dies crossing the street on the way to their appointment, they are included in the deaths from whatever disease is being studied and reported.  SO, someone who is 85 years old, with multiple chronic diseases, who is hit by a bus going to the store is still included in the cancer death rate because they died during some particular study.  So statistics are iffy- they are a reference point worth considering, but not the be-all, end-all ‘rules’ of survival/death.  I was looking at the possibility that a 55 year old female in otherwise good health could be in the small percentage of survivors- why NOT her?.  I couldn’t see it any other way… but I knew it would be a hard battle.

In the months she was being actively treated, she had a kidney stent (she called me about some nagging and increasing flank pain- and she was right; something was wrong– there was pressure on her ureter from the mass of lymph nodes, cutting off the flow to the bladder from the kidney- so her kidney couldn’t empty out, causing a lot of pressure and pain), low potassium and magnesium, constant vomiting (which can be a cause AND symptom of low potassium- ‘nice’ vicious cycle there),  an infection that I’m foggy about,  multiple fractures in her sacrum, blood clots in her legs, fluid around her lungs, a LOT of pain, multiple adjustments in her medications, a port placed (for giving chemo and drawing blood to avoid multiple IV sticks), medications to deal with medications, a new kidney stent, a lump in her neck from lymph nodes-which caused arm pain from the lump pressing on nerves, and on and on. And during it all, she was mentally going on as if she was sure she would be fine in the end.

I have over 700 e-mails between the two of us from the time just before she was diagnosed until January 2014, when I noticed things were changing because of the change in communication.  She wasn’t answering e-mails or posting as much on the support site for friends and family.  That was different. Something wasn’t right.  I didn’t call her much.  I knew she needed rest (and she had friends who were visiting her, which was SO wonderful), and if she didn’t answer e-mails, she wasn’t online, or up to ‘talking’/communicating. I understood that, and we had  an  arrangement that if she wanted to call, she could- and if she were at a facility, I’d call her back on the room phone so she didn’t have to use her cellphone minutes.  If she was home, she called from her landline.  I waited to hear what was going on from the site set up for family and friends as well.

I saw her at Christmas, and she was in ‘new’ pain (I was SO glad to finally SEE her after all of the  e-mails and phone calls !).  That would turn out to be the fractures in her sacrum, which she had to have glued back together.  She had her bones glued. Back. Together.    She never got a break during the entire 9 months.  There was always something else she had to deal with and/or get treated.    I cried a lot, as I knew that each time she called with something ‘not right’, it meant that the cancer was not giving up to the chemo.  In February, it became official.  The clinical trial meds weren’t working (and those aren’t given when there are ‘known’ medications that work) so that was already a sign that things weren’t going well at all… but someone has to make it, right?  There was nothing left to do. It was a matter of time, and not that much of it.

She called me in mid-February after being discharged from another rehab facility to help her get stronger after the hospitalization for blood clots, fluid around her lungs, neck nodes,  and getting her bones glued.  She  told me the doctors had no more  options for additional treatment. I’d already been told that her prognosis wasn’t good (from dad, via uncle, then e-mailing her mom, who called me back) , but I asked her if she’d been given any time frame and she said she didn’t want to think about time limits. She also said she didn’t feel like she was dying.  I’d learned a long time ago that patients do have some feeling of when their body is not going to recover.  My answer was  “then don’t” !  (Real clinical and technical, I know…).  I didn’t say anything about the time prognosis I’d talked about with her mom.  She didn’t need me to have some sort of mental countdown going on… so I blew that off as best I could.   She said she wanted to check out some alternative healing options and knew of a Chinese medicine doctor  nearby, and I told her she had nothing to lose, and who knows?  Something might help her at least feel better.  So much of Western medicine comes from natural sources (plants, animals, etc).  Why not?  I encouraged her to do whatever she felt was right for her.  She didn’t have anything to lose, and only something to gain.   She wasn’t ever able to find alternatives… she ended up on Hospice shortly after that phone call.

That was the last conversation we had about getting well.  She called me  a few more times, and each time she sounded weaker and more tired, sometimes a little foggy.  She wanted to know about how hospice decides when to do things, and when not to, and if palliative care was better (she wanted to be at home, so that pretty much answered that).  The last time we talked was within a few days of her death, and by then she sounded almost deflated and she told me she was tired of ‘all of it’. She was still denying any feeling of  ‘actively dying’, yet also sort of saying she was ready for it to be done.  She also asked me why I was able to get well (from the leukemia I had diagnosed in late March 2010, and had 19 months of daily chemo to treat, including 50 infusions of arsenic trioxide).  It wasn’t in an angry way, or in any way ‘upset’ with me  for surviving… it was almost a childlike tone, just wanting to understand the incomprehensible. I really didn’t have an answer, except that she got a meaner cancer than I did.    I told her I had just gotten extremely lucky to have been diagnosed while there was time to treat it.  Many people with what I had are diagnosed at autopsy; I know of two people, one a child, who were gone within two days of diagnosis.  I also told her to do this next phase of her life (the last days) however she needed to do them.  I guess it was how we said good-bye.  I didn’t know how soon ‘it’ would be, until I got word from the support site posts that she was sleeping most of the time, and rarely woke up…then I read she had a brief period of awareness and drank some juice.  That is common very close to ‘the end’, and I knew any calls I got from family would be to tell me she had died.   And that’s what happened.

Cancer is a mean, nasty disease, and there are various forms of cruelty that it can throw out to torment people.  She got one of the worst I’ve ever seen in the 20+ years I was working in various areas of nursing, and with other friends and family (my mom had breast cancer, second breast with suspicious cells, lung cancer, and brain cancer and all of the treatments and surgeries with those… and then dementia from the brain radiation, and lived for another 17 years cancer free).  My cousin never got a moment’s reprieve from agonizing pain, or if the pain was doing better something else would go wrong.  It was SO unfair.  It’s never ‘fair’, but she went through more in nine months than most people go through in a lifetime.  It’s not really fair to compare people’s diseases , since whoever is going through something like cancer is feeling pretty scared, and having their own journey with their disease, but from an objective standpoint with nurse eyes, she had it really, really bad.

One thing that she was so consistent with (even before the cancer)… she always knew when something wasn’t right.  She knew when there was something brewing or just outright wrong .  She knew her body- even with all of the ‘new normals’ she had to get used to- and she got things taken care of when she knew things weren’t right.  Everyone needs to do that.  She’d call me and ask what something might mean… and if she should call her doctor then, go to the ER, or wait until office hours (depending on what was going on).  Sometimes she needed an explanation about something, and sometimes I encouraged her to call one of her doctors (we’d figure out which one to start with since she ended up with several).  Other times, I encouraged her to get checked out as soon as she could.

I will miss her so much.  I already do.  And yet I’m glad she isn’t being tormented by that nasty tumor and it’s offshoots and chaos any longer.  She went through all of this with such grace and dignity, and never gave up the idea that she was going to be OK, until the very end.  And then, she went peacefully in her sleep with her mother and housemate at her side.   I’m not going to be able to go to her Life Celebration because of my own medical issues (and the logistics of getting there with various equipment).  I’m upset that I can’t be there.  I know she’d understand, since she knew I couldn’t attend but a couple of hours of the Christmas parties, after dinner was over.  I’m just really sad.  I wish I could hear more about her from the people who are going to be there.   I’d like to be there for her mom, and her  brothers (who have had to say goodbye to two children/siblings now) and their families.  So instead, I write to clear my own head, and in some very small way, pay tribute to my cousin.  There are a lot of things I’ve thought about during this past nine months, and how my cousin made my life better just by being herself.  As adults, we had a great relationship, and I found her to be   a kind, compassionate woman, with a great sense of humor and an amazing work ethic.  She was never judgmental.  She looked for the good in everything we ever discussed.  She was loyal, and able to help me out with her own perspective on a difficult situation. She knew how to have a conversation without injecting drama.  She let me be there for her, when I often feel like I’m not useful for a whole lot anymore.  I just wish it had been for something that left her here (I’ve never had a ‘nurse call’  be for anything good 😦  ).  It’s always hard to say goodbye to someone, and someone in my generation in the family is just plain scary.   Especially someone I really cared about, not just because we’re related, but because she was a person who added so much good simply by being.

I will love you always, K.P.A.

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.

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. ❤

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.