The Wacky World of Peripheral Neuropathy and Methadone

This hasn’t been a good weekend.  I slept most of January 1, 2016  (Hey, welcome new year !!), and the next two days haven’t been anything to cheer about (although I am alive, so that gets points).  This peripheral neuropathy is kicking my butt, and this morning it felt like a literal kick just to the right of my butt cheek crack. It is like a deep bruising- definitely a muscle type pain… not the weird ‘nerve’ pain of burning, numbness, tingling, etc.   The burning pain in both outer thighs is also bad.  Generally, the burning pain has been when I’m in bed, but today it has decided to join me until ?  But when I touch those areas on my thighs, it feels numb.  And then gentle contact with those areas brings a type of pain that is disproportionate to the degree of the touch.   When I say ‘burning pain’, I’m not talking about sunburn pain… I’m talking about hot oil type pain, over an area the size of the sides of both thighs.  The first time it happened, I froze with confusion.   Chemo and diabetes can have some gnarly complications.

I know I have a lot to be thankful for.  Since getting the CPAP for sleep apnea last year (close to this time), my head feels much more clear, and the morning headaches have been reduced by about %99- that  is HUGE !!  I’m still tired, but not nearly as wiped out as I had been post chemo.  Chemo fatigue is indescribable.  I’ve had fibromyalgia fatigue since the late 1990s, and it’s bad…. but chemo fatigue can be immobilizing.  Just getting up out of the TV chair to go to bed was overwhelming.  Fibro-fatigue is bad- but at some point, it eases up a bit to take care of basic daily activities enough to function, even if minimally.   (I live alone, so nobody to ask to do something on the fly…. there are a couple of friends around here who are so willing to help, but they have jobs and lives, so it can be hard to schedule a good time for both of us- but they are so willing, which is great.  My 83 year old dad is around, but I want him to have a life… I do ask him for help at times, but I don’t want to take advantage of him or anybody else). 

I know I need to contact the pain doc again.   This next two weeks, I have lab work, a follow-up with my endocrinologist, a routine visit with my neurologist, and the endoscopy with the ultrasound and biopsy of the junction between my stomach and lower esophageal sphincter for the “clinically significant lesion” that was found during the esophageal manometry to clarify the spasms in my esophagus that make swallowing so difficult.  Sometime in all of that, I need to see the pain guy.   And the CT of my pelvic area.  Can’t forget that.  I actually need to get that done before the pain guy, since I don’t want to do any spinal cord implants (to sort of confuse my brain about pain perception in my lower spine area) until I’m sure that nothing lurks in my pelvis.  SO many symptoms are common to a bunch of things, and I don’t want to have a metal implant (kind of like a pacemaker sized thingie) put in if something else is going on.

In the meantime, I’ve been prescribed methadone (t’s not just for getting heroin users off of heroin and on to something that has no ‘buzz’- it is a legit pain med), and have already been on ‘adjunct’ meds for other disorders that also help with pain management, like gabapentin, carbamazepine, clonazepam, cyclobenzaprine, and topical things like Icy Hot ‘sticks’, Salonpas patches, and sometimes just lying still on my uber comfortable bed, with my CPAP machine.

About the methadone.   I don’t like the stuff.  It does work for pain (same category as morphine)…. but I worked drug and alcohol rehab for about two and a half years, and from an objective point of view as a detox RN, it is the worst substance for detoxing.   I’m not concerned about addiction for myself.  I generally have a lot of pain meds left over, to the point of throwing them away because they’ve been in my drawer for so long.   I don’t mess with the instructions or dosing set by my doctor (who is board certified in anesthesia and pain management…. not a doc-in-a-box who only accepts cash, and has a line around the block).   I get no emotional ‘perk’ from the stuff.  But with any controlled substance (as well as things like caffeine, nicotine, etc), there can be physical tolerance and dependence.  That gives me the willies, which I guess isn’t a bad thing, but it does make it hard to take the methadone as often as I can (three times a day), even when I’ve got pain that ‘justifies’ taking the stuff.  It’s common knowledge that pain is easier to manage when it’s treated before it gets really bad… but methadone is no joke.  I have a lot of conflicting feelings about taking it.  And yet, the pain I have now is interfering with just moving around my apartment.   I need pain relief.  I’ve discussed my fears with my pain doc… and he reassures me that he will never leave me hanging as far as dealing with physical tolerance.

My pain doc told me that if the methadone doesn’t help now, the spinal cord implant is the next thing he would recommend.  I trust this guy, mostly because he is not a pill pusher.  He does prescribe them, but he also does nerve block injections with steroids and numbing meds, and options like TENS units (little electrodes on the outside of the body to help ‘trick’ the brain about pain perception).  He has rules about how things work at his office (no dosage adjustments over the phone, no messing with doses/frequency without his approval, random urine drug screens, calls for refills have to be on certain days, etc.).  If he feels people are not following his rules, they’re gone.  No jerking around with pain meds.  I respect that a LOT.

I also consider my age.  I’m 52 years old, and might have another 25 years, give or take, to cope with the neuropathy (and other) pain.  It concerns me to take strong stuff now, knowing I have an unknown number of years to live with this crazy body and the weirdness going on with it.  And yet I hurt.  I can’t take NSAIDs (ibuprofen, naproxen, etc) because of chronic gastritis.  I deserve a decent quality of life with less pain, and if that means pain meds, I need to accept that.  The doc can only help me if I am willing to follow his instructions with the meds that scare me.  I don’t expect to be pain free- that is totally unrealistic.  But less pain would be good.  I’ve had daily pain since the mid 1990s… it’s getting worse, and from different sources.    I want to be able to have some times to enjoy time away from my apartment, and hopefully with friends (those I’ve known for a while, and those I’m meeting at the Bible study).

I thank God for the doctors I have.  They listen, do the proper testing to find out what is going on, and in the case of my primary doc, orders things like my wheelchair to help me be as ‘able’ as possible to get around outside of my apartment.  That has been huge.  Going to the weekly women’s Bible study has been a wonderful way to get away, be around others, and meet people !  I’ve been isolated for the most  part for nearly 12 years. It’s been SO good to be around others, and hopefully be a source of positive interaction for them.

 

 

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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 !  😉

 

 

My Legs Are Retiring Part-Time … Wheelchair Will Be Here Next Week

This week, I went to  my doctor’s office so she could do the ‘face to face’ appointment required to order a wheelchair for me.   Normally I detest MD appointments (leaving home is painful- the docs are OK ), but I actually respect that Medicare requires this so that they aren’t paying for scam wheelchairs.  I’m thankful that I’ll have the w/c available for times when I can get out.  It’s been about eleven years since I’ve been to the mall.  I’m not much for shopping, but it would be nice to just see human beings.   I recently joined a women’s Bible Study, which has been great- I not only get to see people, but to interact with them as well.  But walking from my car to and from the room where we meet is hard.  My legs hurt, and I get short of breath.  I look OK, except for a limp, and no eyebrows ever grew back after chemo.  My head is shaved to minimize heat retention.   I don’t look ‘broken’.  But I feel decimated.

Grocery shopping has become increasingly more difficult.  I can maneuver with the cart for support, but unloading the stuff once I get home as well as the toll that shopping takes leaves me in increased pain for about three days.  This has been going on for a while, but it’s gotten worse.  I don’t even bother with clothes shopping… I get undies on Amazon, and order t-shirts and Cuddl Dud leggings/longjohns online.  I’m at home most of the time, so that’s all I really need.  I’ve also found a couple of plus-size online sites that have  stuff that is suitable for when I leave home.  Amazon has Prime Pantry, and Walmart delivers, so some things are available to have dropped off at my front door.

I’ve had autonomic dysfunction (dysautonomia) for almost 20 years.  That involves my blood pressure, how my breathing feels,  and my heart rate (they go very low, and I keel over if it gets bad enough, or I feel like I can’t get air ).  I have horrible heat intolerance, and must wear an ice vest when I leave home; too hot = unconscious.  Dysautonomia can dull my memory (facial recognition is getting worse), make me feel exhausted when doing very little, and in general, make me feel off kilter.  That’s what got me on disability (along with nocturnal left temporal seizures that leave me exhausted in the morning).  The last two months I was working as an RN, I was sent out by ambulance about 10-12 times… I don’t remember any of the ambulance trips.   The chemo I got for acute promyelocytic leukemia is known for making peripheral neuropathy worse, or starting it to begin with.   The chemo was also  hard on my heart; I had to skip the last dose of one IV chemo because my MUGA scan showed problems.  Fortunately, my heart itself got better… but the cardiac symptoms with dysautonomia have been really wonky.   I have degenerative disc disease, fibromyalgia, and degenerative joint disease (involves my hips at this point).   I guess I need to be thankful for not being in a wheelchair sooner.   And it will be ‘part-time’ at this point.

I seemed to do fairly well until this last summer, when the cardiac symptoms as well as the painful part of neuropathy started to change.  There were several medication dose adjustments to deal with the blood pressure and heart rate changes (were going up with a palpable feeling of something being wrong, then dropping enough to diminish blood flow to my kidneys- that was scary).  Then, I’d wake up with my right thigh feeling like it had been doused with some type of accelerant and lit on fire. One night it was so intense I couldn’t move.  I was stunned into immobility by how bad it felt, and had to get myself calmed down enough to turn on my side- which helps dull the pain enough to not feel like something really bad is happening.  Now, both of my feet are very sensitive, and I wake up with them hurting as well.  My right thigh has atrophied (shrunk), which has left my right leg weaker than the left.  The reflexes on that leg aren’t there from the knee down, and when I stand for any length of time, I begin to feel like the leg is going to give out.  If I step back and forth between legs, I can manage to get through a grocery store checkout line, but I have to lean on the cart- and I look like I have to pee real bad.  When I went to the store this week, for just a few things, not even my usual monthly trip, the pain afterwards was as bad as a ‘full trip’ to the store… it’s time to use one of those scooters, which don’t hold a lot.

One of the hardest things about these changes is that I need help.  I don’t want to need help.  My dad will help, but he has no clue about what a full month’s groceries looks like for someone who doesn’t eat out (like he does), and the running commentary can get annoying (“do you really need two of those?”, or “you’ll pay $5 for hamburger meat?”).  For short trips, he’s great.  I have a couple of high school friends who have offered to help me, which is very kind; they work long hours.  I’m also going to hit up the Bible Study group for volunteers (meets during daytime working hours, so I’m thinking they might be available for a quick trip during the day, when the stores aren’t as busy).  I now need the scooter, and need someone else to push the cart if I’m doing a full month’s shopping (for a mid-month trip, I can maneuver the scooter myself).  For the past several years, I’ve done my shopping at 1 a.m. to avoid the rude people who don’t like being behind someone who is slow.  I always move over in the aisle if someone is around, but for some, my being there at all seems to be an offense that could alter the course of their life permanently  for the worse.  It’s just been easier to avoid them, and shop when they are safely tucked away in their houses of intolerance.  But, that isn’t going to work any longer for the monthly ‘big trips’.   I need help.  😦

The chariot will arrive next Wednesday.  I have a seat cushion ordered for it.  My bio-mom suggested a tall flag attached to it.  I am considering a cup holder and bicycle horn  😀   I figure I need to make the best of it, and look at it as something that will help me be less isolated, and reduce the pain of normal life.  I will still walk around my apartment (that hurts, but it’s manageable).  I can still take the trash out; it hurts, but I can still do it.  I hope I can ‘chair walk’ (use my feet to propel myself) on the sidewalk at the place where I live, so I can go down to the pond and watch the frogs, geese, and crane-like bird that hang out there.  I haven’t been down there for at least seven years.

Changes like this are hard.  I’m thankful that I’m not in worse shape- things can always be worse.  And I’m thankful that the wheelchair is available.  Medicare and my expensive out-of-pocket supplement plan will cover it.   But it’s a sign of decline, and that is hard.  I’m only fifty-two years old.  Something I wish I’d known when I was much younger is that nobody knows how long their body will work like it was designed to work.  Even as an RN, seeing the end products of car wrecks, botched suicide attempts and recreational overdoses, and other life-changing events, I lived  a low-risk life.  I never imagined things going wrong from the inside.   When I found out I was diabetic in 1995, I thought that keeping my blood sugars and A1C in good shape would protect me… chemo totally screwed up my blood sugars in 2010-11.  I didn’t imagine my spine deteriorating.   I didn’t see my life changing as it has.  I guess nobody really does.

I guess that’s my point… live  life while you can.  Don’t spend every minute working double shifts.  Pass up some of the ‘toys’ in life, and have a GOOD savings account in case you have your life turned upside-down through no fault of your own.  Drive a used car.  Live in a house that is “enough”, but not so much that it takes over your finances.  Always get disability insurance.  ALWAYS.   (That has been the difference between living in some public housing pit, and a decent apartment.)  Learn what you need, and what you want- and to be thankful for the needs that are met.   Plan for craziness and be absolutely grateful for the mundane.  And don’t give up when the craziness hits.  Do all you can to be independent, but learn when you need help.   But no matter what, be thankful.