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.

 

 

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.  :D 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 !  :o

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 <3 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 !  ;)

 

 

Feeling My Body Fail

This has been a rough six months on top of a weird twenty years.  I’d learned to deal with diabetes, fibromyalgia, chronic pain, degenerative disc disease, nocturnal seizures (left temporal), degenerative joint disease, GERD, and the temporary effects of acute disorders like multiple pulmonary emboli (all three lobes of my right lung and right pulmonary artery), and acute promyelocytic leukemia (APL), or acute myelocytic leukemia- subtype M-3.   The longterm effects of chemo have been rough and more noticeable  in the last few months, and the thought at this time is that much (not all)  of what has been going on recently is a combination of chemo effects, and  the progressive nature of diabetes (even with good control, though chemo totally ripped my blood sugars to shreds).  I had chemo DAILY for 20 months (ATRA – all trans retinoic acid, M6 mercaptopurine, arsenic, methotrexate, and initially daunarubicin, ara-C, and assorted meds for nausea, fluid retention, and protective eye drops.  I was also on gentamicin and vancomycin for most of six weeks.  I think that things are just catching up.

This summer, a lot started to happen at once.  The GERD (reflux) got really bad, so I was sent to a gastroenterologist (GI) for some testing.  Most of those tests turned out relatively OK (to a cancer survivor, that means nothing malignant… something could be rotting and ready to fall off of my body, but if it’s not cancer, it’s pretty much OK).  I have chronic gastritis (so no more NSAIDs – or ibuprofen type meds which is a bummer for pain management), and some irritation in my esophagus, and I was supposed to have a gastric emptying test (related to gastroparesis- a diabetes complication, but because of pain, I can’t lie on my back as long as is required…. and if I burp yesterday’s lunch in the morning, that tells me something isn’t moving).  I tried to have the esophageal manometry test done last week, but SURPRISE !!!  I couldn’t swallow the tube !   I’m being tested for swallowing problems.  Now, I have to be knocked out, and have the tube put in under anesthesia, woken up, then swallow water 10-12 times, then have the tube pulled out).   I’ve had to eliminate a few foods/food groups, but that’s OK.   Marinara sauce, chili, fried foods, ‘high volume’ foods (like full meals), and some other things are out of the picture for the GERD. I cheat once in a while, but have to have Tums and Gas-X available.   For the swallowing issues, dry foods, meat without ‘lube’ (sauce, gravy, stewed), celery, hard breads, rice without some type of moisture, etc are out.  I literally have to pull the food out of my throat before inhaling when something gets stuck.  I keep 8-inch curved hemostats next to where I eat. It’s rather scary.

The pain.  Oy.  I don’t remember ‘pain free’.  I’d gotten used to just dealing with it, but this summer, the neuropathic pain got very noticeable, and the burning pain along my right outer thigh got really bad at night.  Now both of my feet burn at night- though neither of them are every night.  The sensation during the day along my right leg is weird.  If I stand too long, I feel like my leg will give out.  I got a wheelchair last week, and the one time I have used it so far (only need it away from home at this point) has been very helpful.  I’m going to have to use the scooter at the grocery store from now on, and not have a three-day recovery period every month when I go to do my main shopping. I’ve got a few volunteers who have agreed/offered to come with me to push the larger cart.  It’s just too much now to do monthly shopping.  The pain management  doctor (board certified in pain management, and ‘legit’… no lines around the block, no shady characters in the waiting room, and lots of rules about how he does things that I respect) said that if the methadone doesn’t work, then the next step is a peripheral nerve stimulator… kind of like  a pacemaker device implanted under my skin that sends out little zings to trick how my body perceives pain. (BTW, methadone is a legitimate pain med, not just used for exchanging it for heroin in drug addicts).    I am usually pretty tough during diagnostic tests, and have had many, many MRIs over the years, but this summer I had to bail before the “with” contrast part was done.  I was in tears just getting the “without” part done.

I did get through the EMG (done at my neurologist’s office, by her), which clarified that it’s a progressive sensory peripheral neuropathy… it’s gonna get worse.  The implications are kind of scary. I’m already noticing some altered sensation in my hands- so being in the kitchen is a little dicey (pun intended).  And, if I lose sensation in my right foot, driving will be out of the question.  Right now, I have enough sensation- and I don’t drive much, so it’s OK for now.   A couple of weeks ago, I was opening a box of stuff I’d ordered (monthly Amazon or Walmart supplies) and I didn’t feel the inner angle of the scissors ‘catching’ part of the ‘pad’ of  my right thumb… and it got cut off (about the size of a pencil eraser- and completely cut off about 1mm deep).  :/   That was pretty sore for a while.  It’s still not completely healed, but much better.  I’m going to have to pay much more attention to hands and feet.  The decrease in sensation means that I could whack something off, get an infection, and end up with an amputation (pretty common in diabetics).   ‘Help’ aids for opening jars, buying pre-cut veggies at the store, etc are going to be things to consider.  I got one jar opening thingie, and it was useless…. it fit around the tops of many sized jars, but without the strength to hold the jar in my left hand, it’s pointless.   I can still do the vacuum release move with an old cheesy can opener, and then get the lids off- at least for now.

My blood sugars were also getting wonky again so it was back to the endocrinologist. She wanted me to try a new type of long-acting insulin- but as usual, I had to check my Medicare plan D formulary to see if it was covered, and at what ‘tier’ for copay purposes… this year, it’s not good; next year I can get it !!  I’m so excited to be able to get a type of insulin that wasn’t popular in the 70s !!  She got me enough samples to get through until January 1st, which brought me to tears.  The short acting insulin is also going to be doable next year- and she got me samples of those as well !!    It requires me to pay three times more for my monthly premium next year, but it’s SO worth it for no deductible, full donut-hole coverage, and good monthly copays for each medication (I’m on something like 15 prescription meds and many over the counter meds that are always out of pocket).

Then there are the changes in the symptoms with the autonomic neuropathy /dysautonomia.  I was sent to a cardiologist (I’ve been trying to cut down on the number of docs I see, and that plan isn’t working well).  Because of multiple medication changes for my blood pressure meds (which is actually used to keep my blood pressure UP in a paradoxical way), and my blood pressure going down far enough for long enough to decrease blood flow to my kidneys ( that was ‘fixed’ with medication changes and more deliberate fluid intake), I needed someone to take a look at what is going on.  Dialysis has always been ‘the’ diabetic complication that I’m not sure I’d get treatment for; a machine 3 times a week indefinitely doesn’t sound like quality of life to me.  Anyway, the cardiologist sent me for a simple ultrasound of my heart (ECHO) and did a simple EKG.  No results on the ECHO yet.  She adjusted a couple of meds, and the next step is to add another med, which I do NOT want.   I’ve had a LOT of episodes of near syncope and increased heart rate (not necessarily at the same time, but if my heart rate stays up, I generally pass out because it will suddenly drop; I have to get home and get my feet up or just go to bed – which usually takes care of it).

So, I’ve seen my primary care doc, gastroenterologist, pain management doc, neurologist, endocrinologist, and cardiologist since this summer.  I do not like doctors’ appointments.  Leaving home is painful.  They usually want to order tests, which means more time away from home.   I appreciate their help (though the GI situation is horrible to get anything done; right now, I’m waiting to get the anesthesia assisted tube placement to measure esophageal spasms -achalasia is suspected-, and they have a very blasé attitude, even when I’m pulling food out of my throat because it won’t go down).   I need to get things treated to the point of maintaining independence as much as possible.  And, I’m going to have to suck it up and ask for help when needed.   That is hard, since most of my friends are 1200 miles away… or have lives/families/jobs/etc.   And I don’t like to be ‘dependent’.

I know I have a lot to be thankful for.  I’m still in my own apartment.  I still have my dog.  My dad is around (he’s 83, and has a full life; he’d help but the ongoing commentary at the grocery store for a full month’s shopping would be too much- he doesn’t shop for more than a few days since he eats out a lot), and he is a huge part of my life.  I have a lot of online friends and family.   I’ve got family in other states that I’m in contact with.  There’s a lot of good.   But it’s hard to see things changing.  Fortunately, as an RN- disabled, but still have my license- I know what to look for, and know what types of ‘help’ devices are out there.   I know when to ask my doc for things like the wheelchair.    I’ve got some word-finding issues, but my brain seems to be mostly intact- LOL.  :D   Always stuff to be thankful for :)

 

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  :D   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.

 

Why Handicapped Parking Spaces Matter… Even If I “Look” OK

To look at me, I probably don’t look ‘disabled’- or ‘that bad’.  I have all of my limbs, don’t use a cane because of vision issues, am not in a wheelchair all of the time (though I will have a wheelchair by the end of the month for longer distances), etc.  I don’t have contracted or withered limbs, use braces to support my legs, or any other visible disability.  And yet handicapped parking spaces make it possible for me to go to the store on my own. Period.

My disabilities include peripheral neuropathy (my right leg is deteriorating and both feet burn at times), autonomic neuropathy (if I stand up for a period of time my heart rate accelerates and my blood pressure drops, or if I get overheated, I pass out), degenerative disc disease (my spine is ‘collapsing’ from the discs deteriorating- lots of pain), degenerative joint disease (have had one knee replacement, should have had another, but leukemia got in the way, and both hips have bone spurs), and at times my chronic pain is really bad.  (Did I mention fibromyalgia?)  It’s always there, but some days are worse than others.  I’m a gimp.  Who might keel over if I’m not careful and prepared.  I am also very intolerant of temperatures over about 65 degrees for any length of time.

Having handicapped parking makes going out at all possible.  That along with my cooling vest.  Those two things (and soon the wheelchair) make it possible to be ‘normal’- or at least take a stab at doing normal things.   I already look weird from leftover chemotherapy side effects: my eyebrows never grew back right, and I’m much heavier than I was prior to cancer.  I keep my head shaved because of how my hair affects severe heat intolerance.  But having a closer parking space gives me some freedom on the days when I am able to leave home.  It’s a big deal !

When I see someone park in a handicapped parking place, but leave someone IN the car in that place, and walk in to the store with no indication of disability, I get annoyed.  Now there are a lot of disabilities where the person is able to move around relatively normally.  Some folks have handicapped parking for emotional disabilities.  Those are valid.  But I’ve heard people talk (or read) about using their friend/spouse/partner’s disability placard to get good parking.  That is illegal, and morally reprehensible to me. Then there are those with no placard or handicapped license plate at all.  On a day when I can leave home, those closer parking places are crucial !  They’re not just a convenience.  I can’t leave home just any old day.   Walking an extra 20 feet can be incredibly painful.  More pain can cause unstable blood pressure and heart rate, and that can lead to losing consciousness.

I know which stores I can go to and be safe, because of the proximity of the handicapped places (one hospital here has the handicapped places down a flight of stairs or a lengthy ramp… great planning; they do have valet parking until 5 p.m., so I have to schedule any tests prior to then).  I know how far I can walk before getting a grocery cart to hold on to.  I haven’t been to a mall in about ten years, except for once when I was waiting for a new battery to be installed in my car- I gimped to the food court for a soda while waiting, then gimped back.   I’m hoping the wheelchair will allow me to ‘chair walk’ (use my feet to propel myself as a form of exercise and general mobility) in the mall.  I’m not a huge fan of shopping, so it’s more of an issue of seeing other human beings and being more mobile. As it is now, I shop about once a month, and aside from my dad, I might not see other people for weeks. It’s been like this for 11 1/2 years.  I have joined a Bible study recently, which has been great.  It’s hard to walk from the parking lot  (with handicapped parking) to the room we use, but I’m getting there. It takes about 36-48 hours to recover.

But without handicapped parking, leaving home is not even an option for me and millions of others.   Staying as independent as possible is really important- not only to maintain whatever physical mobility is left or do ‘routine’ chores,  but to interact with others.  For those who need handicapped parking, it is not a convenience.  It’s a necessity.

It’s Been A Bad Few Months…

I’m so frustrated with the increase in limitations over the last few months, especially with my grandma not doing well (and wanting to see her).  I haven’t said a lot recently, but it’s not because things are better.  More things are falling apart.  My aunt called this morning to offer to come and get me to go see grandma (about 50 miles round-trip), and I can’t do it.  I hate this.  I really want to see her.  I had a cousin offer as well (and an uncle volunteered my aunt)- so several offers.  I feel SO badly for declining.  But it’s just not physically safe at this time.  :(

It kind of started with the reflux/GERD getting really bad.  I have had an endoscopy and barium swallow.  Those showed chronic gastritis and some esophageal spasms.  I still have two tests I need to get done (gastric emptying and pressure of esophageal spasms), but haven’t been able to because my spine/back and leg pain being too bad to get through the tests.  I had one test a few days ago (EMG) that showed peripheral sensory neuropathy, that is progressive.   What that means is that my limbs (mostly legs at this point) are subject to strange pain and sensations, or lack of sensation.  At some time, this will lead to not feeling my feet on the floor when walking.   That’s a safety issue.  I also drop a lot of stuff, and have more trouble opening jars, even when ‘unlocking’ the vacuum with an old fashioned bottle opener.  I’m sending for one of those gimp things for opening jars soon.

The pain in my legs has been a burning pain unlike anything I’ve ever felt.  Fortunately, it’s not constant, and mostly at night (which makes sleeping unpleasant, if not impossible). I wake up frequently to that ‘what IS that?’ until I can fully become aware that it’s the neuropathy pain.  Now, both feet are beginning to burn at night, though not every night.  It seems like it’s progressing fairly quickly.  My neurologist did the EMG (pins into legs with electricity run through them, to measure muscle and nerve responses; sounds bad- isn’t that big of a deal).  The MRI was horrifically painful, which normally isn’t the case.  I couldn’t finish the “with” contrast part, as the “without” contrast part took about 1.5 hours, and by the end of that, I was in tears.  I joke around during bone marrow biopsies- so I’m not a wimp. I was just in too much pain this time around.

Over the last several months, I’ve been having more trouble with my blood pressure and heart rate.  The first time I was really aware of my BP being low was at an oncology follow-up appointment when it was 80/50.  I’d been really tired- but I’m  disabled with autonomic dysfunction- I’m tired a lot anyway.  BUT, at that visit, my kidney  function was moderately impaired (at the levels it was at, it would have been considered Stage 3 out of 5, of chronic kidney disease).  Thankfully, with some additional fluids, I was able to get it to the vague acceptable range (normal levels are 90-100; the standard lab values only measure >60, or the specific numbers if <60).  I’d prefer to know the actual number no matter what they are.  Even 60 is stage 2.   But anyway, I dodged a bullet with that.

At that same oncology appointment, I noticed that my A1C had gone up, so got myself off to my endocrinologist to have my insulin adjusted.  With my 2016 Medicare part D drug plan, I will be able to get the “good” insulin, instead of the half-assed stuff I’ve been able to afford over the past 3 years.  Insulin is ridiculously expensive- yet until next year, Medicare has been more wiling to pay for dialysis, amputations, blindness, heart attacks, and strokes before making good, up-to-date insulin a realistic possibility.

My blood pressure meds, which paradoxically maintain my blood pressure (or are supposed to) have been adjusted three times since this summer.  I’ve noticed some orthostatic intolerance on several occasions, but once the meds were adjusted, things would get better for a while.  But it seems that no matter what the dose,  after a couple of weeks, I get symptomatic again.  When driving to my dad’s friend’s house for dinner one night, I started getting lightheaded; that is a bad situation in the car.  I got home OK, but it shook me up. I’m being referred to a cardiologist/electrophysiologist for ANOTHER work-up on this.   I’ve looked up the name of the guy I’m being referred to- and he’s a specialist in heart rhythm and orthostatic issues… perfect for what is (and has been) going on.

I need to see my pain doc, now that there are some answers as to what type of pain is going on.   All pain isn’t  equal.  What is going on is more neuropathic pain, as well as the pain from degenerating discs in my spine (neck to tail).  I’m not sure what is going to be done about that. I don’t like the spine injections.  They aren’t painful, but just don’t last all that long.  I’m not a big fan of being on “routine” pain meds, either (instead of just “as needed”), but I may have to suck it up and just take them.

So, there’s my internal med doc (primary doc), gastroenterologist, oncologist (just follow-up at this point), endocrinologist, neurologist, pain doc, and cardiologist (to come).  Seven doctors in about four months.  I loathe adding doctors to an already complicated mess, but at least until things stabilize, I just have to see them.  Fortunately, my pulmonologist (sleep apnea), plastic surgeon (scalp cysts), and dermatologist (psoriasis) get a break for now.

But the timing on any of this is horrible.  My grandma is dying (as in actively).  I want to see her, and don’t feel it’s safe to go 25 miles each way to see her.  It’s not because I don’t want to.  She was my best friend during those early years on disability when I knew nobody here (and had no access to Facebook or other online social connections and reconnections).  We’d talk about so many things and laugh about stuff in the past.  We’d also reminisce about my mom (who died in 2003).  She’s almost 101 years old, and has been the glue holding our family together.  All get-togethers and gatherings centered around her.   I have called her care-taker who tells her I called, and that I love her.   I know she knows that I do, but it’s still hard not to be able to go down and hold her hand one last time.

Frustration and Unpredictability of Dysautonomia

I’m supposed to be over at my dad’s  friend’s home, eating tacos with them.  I’d looked forward to it since getting the invitation this morning.  I took a shower (not a simple task when temperature changes are risky) and got my extra ice vest inserts packed into the insulated bag, and the ‘full’ ice vest ready to go.   I got in the car, and headed over there.  By the time I got to the first stop sign, I could already feel things changing.  I hoped that some cool air, and ‘thigh squeezes’ would change my heart rate and blood pressure (I couldn’t measure it in the car while driving, obviously, but anybody with dysautonomia knows when it’s changing).   No such luck.

I got to her street, and since I wasn’t feeling any better, decided it was better to circle around and go home.   I’ve had a mental plan for years for what to do if I get symptomatic in the car.   The air conditioner (which is usually on anyway), talking to myself, thigh squeezes, and knowing where the side streets are in case I need to pull out of traffic are at the top of the list.  There is no scarier place to have symptoms than when I’m in the car, driving.  If I have symptoms before leaving home, obviously I don’t drive- but tonight, it hit kind of fast. Fortunately, I do have enough warning before I pass out to safely pull over, but  I feel badly for being such an unpredictable guest.

During the last few months, I’ve had a lot of stuff going on that has made the dysautonomia (POTS and some neurocardiogenic syncope- not quite to the point of syncope) labile.  I’ve had a scare with my kidneys (that turned out to be just a scare, so dodged a bullet there).  I’ve had to change the dose of my primary dysautonomia beta blocker to HALF of what it was a few months ago- my blood pressure got low enough to cause the decrease in kidney blood flow and change my lab values, which is not a good thing.  I’ve had a lot of neck and lower back pain that has required some tests that didn’t show anything new (degenerative disc disease, and some bulging discs in my neck).  I still have another  test in a couple of weeks (EMG- needles in my thighs with electricity pulsed through them; I’ve had it before- it’s no big deal; nerve damage is already known- just have to see how fast it’s changing).  My right thigh is visibly shrinking in a weird, not normal way (like maybe if I were losing weight…. then both thighs should ‘shrink’ the same).  Diabetic neuropathy is getting worse with burning leg/thigh pain, as is gastric reflux.   The reflux issue has some other tests pending as well, but the ones that have been done show esophageal spasms as well as chronic gastritis.  Toast is my friend. The diabetic nerve pain is a burning like I’ve never felt before.  I have been awakened by it, and it feels like what I’d imagine if someone put some type of accelerant on the outer part of my entire right thigh, and lit it on fire- yet when I touch it, it’s numb.   I guess it shouldn’t be a surprise that the dysautonomia is going through some “out of whackness”.   A lot of other stuff is out of whack.

I hate these fluctuations and changes in the status quo.   I get used to one way of my “normal” and how to adjust my life accordingly, and then something else happens.  The whole thing gets weird again, and it’s another ‘normal’ to get used to.  I don’t like being undependable.   I’ve always been punctual and if I said I’d be somewhere, I showed up (aside from the dysautonomia and disability stuff that ended my working career as an RN). My dad is used to my 50-50 chance of showing up.  Not everybody knows this about me, and I feel bad when I bail out.

The shower could have made things less stable.   I have horrible heat intolerance, and showers can be a problem.  I generally don’t take a shower and go somewhere in the same day- I need some time for things to get back to ‘normal’ after being exposed to the warm/hot water (I like hot showers… my blood vessels don’t).   I didn’t feel bad after getting out of the shower (a bit winded, which is ‘normal’, but nothing weird).  I allowed time to rest (about an hour), so thought that would be enough.  Guess not. :(

Anyway, my head still feels a bit loopy when I stand up.   I just got done with a plate of food my dad’s friend sent over- which tasted really good, and had some salty stuff which probably helped.  I just feel bad that I couldn’t be over there with them, as we’ve had fun the other times we got together.