Initial Impressions of Cannabidiol (CBD) Supplementation and Hemp Products

My initial  desire to apply for a medical marijuana card is for severe fibromyalgia, PTSD, seizures, and some anxiety related to health issues, as well as the complete change in my life after the death of my dad.  My anxiety is  relatively mild compared to actual anxiety disorders, but it was still noticeable.    I’ve started with CBD products as I wait for the card.    I had no idea that our bodies have an ‘endocannabinoid’ system, and there are receptors in our bodies that make cannabis usable in therapeutic ways.

Years ago, I saw documentaries about Charlotte’s Web CBD and how it transformed the life of a 6 year old little girl (named Charlotte Figi) who had 300 seizures per week and was wheelchair bound.  Since Charlotte’s Web, her seizures are less than weekly, and she’s walking and developing much more like her twin sister who doesn’t have the same seizure disorder.   I liked that there were no psychoactive properties in CBD.  It’s the THC in cannabis that is the ‘stoner’ component.   CBD is useful for pain, sleep, anxiety, and a lot more.   The possibility of getting off of some of the regular pharmaceutical products that do an iffy job (especially with pain and sleep) was something I wanted to try.   But at the time, I didn’t know that CBD oil is legal in all 50 states, and is considered a ‘food supplement’, and not a drug, so the FDA keeps their nose out of it.   It’s legal to get online !

I got some Charlotte’s Web CBD Oil (in the olive oil flavor), as well as some of their capsules a few months ago, and it took me a while to get serious about consistent dosing.  It takes some finagling of doses before the right one ‘fits’, but the best part is that there aren’t any horrible side effects if the dose is a bit too high.  I just got really tired, and my blood pressure was a little low- but that didn’t last more than 1/2 a day- and I was very aware of it, so didn’t feel unsafe (unlike the effects of many prescription meds).   The sublingual oil is a good way to get it going in the blood stream without having to go through ‘normal’ metabolism when swallowed, but the capsules are nice as a “steady” dose.   When I do get my MMJ card, CBD can be used to cut down on any unpleasant effects of THC.  (I’ve never smoked pot, so have no clue how I’ll react to THC, and plan to use ‘non-combustible’ routes of use).    It will be another learning process to find out the best combination for me, to get pain relief without feeling spacey or ‘impaired’.

Since finding the CBD dose that seems right for me, I find I’m sleeping a LOT better- more soundly, and not waking up before dawn nearly as often.  I’m ready to hit the sack, and actually fall asleep within 10-15 minutes (I take my night meds around 6-7 p.m., and am usually out cold by 11 p.m. – this from someone who used to sleep until noon after being up until 4-6 a.m. EVERY night).    The intense PTSD symptoms re: my dad’s death have also eased enough to notice.  While I still miss him a LOT, I’m not crying nearly as much, and thinking about those last horrible 19 hours, (when he was absolutely incoherent and at best only understood very short, direct comments and questions) doesn’t bring on the same sense of absolute despair.   I made the promise to him that I wouldn’t leave his side, and I kept it- only to find that the symptoms of PTSD from that last day were worse than the symptoms from a six-hour rape when I was in my 20s (that I still deal with in the form of parole protests every 3 years).    I don’t have the  almost panicky feeling like I have to plan for every contingency for self-sufficiency, now that dad is gone.

I’m also taking fewer opiates for pain  (I detest methadone- a legitimate pain med- because of the rapid physical dependence that occurs- which is NOT the same as addiction).  I still have hydrocodone for bad days- which does not have bad interactions with the CBD, though I don’t take it more than a few times a week.  I could ‘justify’ taking it more often, but I want to use the CBD  as much as possible, and avoid the opiates unless it’s just too much for the CBD alone.  When I get my card, the hope is to not take opiates at all.

I’ve been able to get off of carbamazepine (one of my seizure meds, also used as an adjunct pain medication), which has always been very hard for me.  Granted, I  started weaning before getting the Charlotte’s Web, but it made getting off of the last of the carbamazepine less  ‘mood swingy’ and emotionally labile.     Since getting off of the carbamazepine, my brain feels less foggy.  I’m back to doing a memory/hidden object game on Facebook- and feel like my synapses are firing more quickly.   Three months ago, I was flirting with the terrifying  idea that I might be seeing the initial signs of progressive cognitive impairment… or dementia.   Having fibromyalgia and a history of intense chemotherapy for leukemia has left me with some word finding issues- but I was noticing some crazy short term memory problems as well.   I never know what causes what, but it was an unpleasant situation to KNOW that something was changing in a bad way.   I still have some word finding issues (worse when actually speaking; writing is somehow easier), but the memory issues for other things seem better.

There is another route of CBD that I wasn’t sure I’d enjoy, but I really do.  It’s ‘vaping’.  For those who don’t know what that is, it’s like e-cigarettes, but with CBD oil.  My favorite doesn’t have any glycerin or glycols, and is Limoncello flavored !   It’s a very smooth, tasty ‘hit’ of CBD oil that is a small dose compared to the capsules, but it’s very enjoyable.  There is NO combustion, so no soot/ash/etc.  It’s vaporized by a %100 convection heating element, to form the vapor.   I recently got a mint flavored cartridge that is a bit more ‘herby’ but still nice.  Again- no funky additives that aren’t necessary- just the pure CBD oil, natural flavorings, and ‘terpenes’ from the hemp plant.    I highly recommend Entourage CBD vaping oils.   There is no smell in the house with vaping.   That is a huge perk.

CBD edibles are also good.  Because any type of cannabis product is carried  by fat, it’s important that the chocolates, gummies, mints, etc are made with fat, or the CBD has been processed correctly so it blends with the other ingredients.  With chocolate, fat is built in (cocoa butter).   The flavor can have a bit of a ‘skunk’ background, but I’ve found that the chocolates with mint are the best at masking any type of weed flavor.   Some CBD edibles aren’t so tasty, but there are many brands that are quite nice.  Iris makes great gummies and small chocolates in milk and dark varieties.  Hemp seeds (I like the shelled ones) taste like tiny pine nuts.  They are very small, but a couple of tablespoons has beneficial Omega oils.  I usually eat them plain, but they can be added to cereals, yogurt, etc.   Hemp oil is a good alternative to salad oils.   I get my seeds and oil from Amazon.

I got one brand of CBD oil that is a decent oil, but the flavor (chocolate mint) wasn’t strong enough to combat the ‘weedy’ undertones in a sublingual oil (that need to be held in the mouth- under the tongue- for as long as possible to increase absorption directly into the bloodstream).   I managed to salvage the bottle by making truffles out of it, with semi-sweet chocolate.  I can have a consistent dose per piece, and though I could still taste a bit of ‘funk’, it was completely doable.  I added more mint which helped a lot.

Initially, I planned to only use CBD, but in all of the reading I’ve been doing, I’ve found that some THC is desirable to increase relaxation, and make pain control more complete.  There are dozens to hundreds of strains of cannabis that have varying degrees of THC, CBD, and the other related chemicals that each have a role in the management of medical symptoms.   Each symptom can be helped with various combinations of CBD and THC, and finding the ratio for each is a process. The ‘bud tenders’ in the dispensaries are very good at knowing what active ingredients do the most for each condition.   It is very possible to minimize the THC effects so that it’s possible to function.  Of course, it’s never recommended that a person drive after ‘medicating’ (that’s how MMJ is referred to)

I’m hoping that my MMJ card gets here soon, so I can go to the dispensary and get started on what feels like the last hope for increasing my quality of life.   Hope.  That is what all of the interest in medical marijuana is about.   I don’t want to feel wasted.  I want to feel some degree of relief just living in my own body.  I have enough qualifying diagnoses, and types of pain that the idea of living a long life without some relief is not something I look forward to- so I’m hoping to have a renewed sense of peace about having a life that is worth being here for.   I am NOT in any way suicidal or not wanting to live… I just NEED some relief.   I’ve had constant pain since 1995- and all of the things I’ve tried have been moderately effective at best, but not for any length of time.

When medical marijuana first became possible in my state several years ago, my dad asked me if I’d ever consider using it.   He knew that pain was a constant reason why I was limited in what I could do.   I told him that I didn’t want to smoke it (I’d smoked cigarettes on and off from 1982 until April 2007 (when I had the blood clots in my lungs).   At that time, I had no idea what forms would be available, but of course, I’d heard of pot brownies.   My dad was a fairly conservative person, but also considered context with the medical marijuana.   I’m so glad we had that conversation.  He was OK with my decision, and even though I’m a middle-aged woman, it mattered what he thought.

The more I read, the more I learn about the incredible benefits of cannabis.  I have no interest in ‘recreational’ weed.  I want some medical stability and relief.   I want quality of life.  I want something that actually contributes to well being without the side effects that make for more problems.    I am hopeful that medical marijuana will do that.  I’m already impressed with the benefits of CBD I’ve noticed so far.


Opiates Are Safe When Used as Prescribed…

… it’s the people who use them incorrectly AND DON’T FOLLOW THE RULES,  take more than is directed, and use them for emotional issues that get into trouble.    Those of us with chronic pain use them to do normal tasks (laundry, cook, housework, etc).  They can be a very safe and effective way to manage chronic pain when used as prescribed.  I’ve never heard of someone who takes something as prescribed who becomes an addict.  I worked drug and alcohol rehab as a detox RN- and every last one of the drug addicts used drugs inappropriately, and generally illegally- and forfeited normal life and relationships to get more of the drugs.   Those who use them as prescribed don’t do that.

Those who do not use opiates as prescribed are making a choice ( at least initially) to use them for non-medical issues (emotional).   They make a decision that makes them more vulnerable to addiction (not to be confused with tolerance or dependence).   Addiction involves emotional symptoms like cravings, and behavioral issues such as doing anything to get more, not maintaining relationships (personal, work, legal, etc), and in general disregards anything in their  life in order to maintain drug use, eventually violating the law to maintain/obtain  drug supply, or type of drugs used (heroin is cheaper and easier to get than many prescriptions due to changes in availability and MD’s willingness to prescribe them).

What are the differences between addiction, tolerance, and dependence?  A LOT of people become tolerant or dependent on various types of meds but aren’t necessarily addicted.   Tolerance is the body’s getting used to a dosage, and then needing more to get the same effect- but that isn’t the same as addiction.  Dependence is the body getting used to a medication in their body, and when that medication is discontinued, they need to do so gradually to avoid withdrawal symptoms- there aren’t  emotional ‘needs’ to keep getting the med, and it’s not the same as addiction.    Addiction ALWAYS includes emotional and behavioral components.

For those of us who live in chronic pain, all of the talk about the ‘opiate epidemic’ is terrifying.  We need the meds to have a normal life (to some degree).  There is no emotional or behavioral need for the pain killers- JUST the need to ease pain that has been verified by diagnostic testing.   For the government to tell physicians how to treat patients is bizarre.   For a personal physician to be limited in how to treat a patient he/she actually knows is cruel in many cases.  There are entire physician groups here where I live (associated with one of the local hospitals ) that are not allowed to prescribe opiates if they are general practitioners, or primary care docs.  How is that rational?   If there is a known cause for pain, why does someone have to see another doctor (specialist) to get pain relief- waiting weeks at times to get an appointment or test done?

I have a pain management doctor.   With degenerative joint disease, degenerative disc disease, carpal tunnel syndrome, TMJ, a knee that can’t be replaced because of a history of pulmonary emboli (blood clots in my lungs)- so I will NEVER surgical pain relief), fibromyalgia, renal insufficiency (so can’t take NSAIDs like ibuprofen), etc, opiates give me some relief and “enough” quality of life to live independently, and not wish I was dead.  I still have days when the opiate I take (as prescribed) isn’t enough.   I get spine and knee injections many times per year.  My pain doc has rules in order to be his patient.  He doesn’t change doses over the phone.  No early refills.   Have to go to the office to get a paper prescription because of the type of meds he prescribes.   They do random urine tests to check for other meds. I like that he has rules- he’s not a pill mill or “Dr. Feelgood”.   He’s board certified in pain management.

Consider the population that is involved in the “opiate crisis”… they are rule breakers that have high risk consequences for high risk behaviors.  Addiction isn’t their fault, but getting treatment is their responsibility.   Restricting those who DO follow the rules is mean… and the suicide rate will increase among chronic pain patients who can’t get relief, even when they’re the ones who follow the rules.

Deal with the addicts- not “punish”  those who take pain meds as prescribed.  Those with chronic pain didn’t choose their physical conditions….addicts (in the beginning) choose to not follow the prescription instructions, and use meds for non-medical uses.   That’s not the problem of those who DO follow the instructions.

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.  😀   Always stuff to be thankful for 🙂


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.

Pain Management for the Non-addicted

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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 😉