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.

Just One of Those Months

For the past week and a half, I’ve had some moderately severe jaw pain on the same side where I broke a tooth, and had said tooth repaired, requiring me to open my mouth wide enough to swallow the Hindenburg.  It hurt.  But a few shots of novocaine, and I blew it off.  Until the novocaine wore off.  I’ve been hoping it would just get better on its own, but it isn’t, so I read up on some causes of jaw pain, and ended up going to an urgent care place this afternoon HOPING to get it checked out for being a fractured jaw bone.  The nurse practitioner was pleasant enough, but I’d never seen him, he didn’t know me, and as is common with weekend visits, I got the impression that they figured I wanted pain meds. I have pain meds. I want this fixed !  The intake people asked what pharmacy I wanted (since it’s Sunday), and I told them I  wouldn’t need any prescriptions (I tend to have ONLY my pain management doc deal with my pain prescriptions- keeps things much neater). The nurse practitioner informed me that ibuprofen or naproxen was the best option- which I agreed to without any issues- if this is TMJ- which he determined without feeling my jaw or doing an x-ray.  I felt dismissed.  I don’t go to urgent care places unless I’m pretty dang uncomfortable and need to at least get an x-ray done.  Waste of time.

It’s been a weird few weeks.  I fell about 3 weeks ago, dodging my puppy. It wasn’t her fault- she is just non-stop motion and can turn on a dime.  Fortunately, I landed ‘slowly’ and was able to sort of ease down to the floor, leaving my left side (same side as my jaw pain) the only thing bungled up, and even that was relatively benign considering what could have happened.  I didn’t even drop my microwave entree in my right hand !  But I was sore for a few days.  Maybe I jarred my tooth and jaw.

A week or so after that, one of my teeth (bottom LEFT) broke. I hadn’t noticed it being an issue before- it was simply not there when I was chewing a gum drop.  I found it by gingerly nibbling at the gum drop (too soft to cause a tooth to break), and made arrangements to get it checked- to at least file down the razor edge that was making my tongue hurt like crazy.  Then I got the tooth filled- which is where I had to open my mouth far beyond anything I’d done for decades, if ever.  I felt ‘something’, but didn’t say anything since I wanted the tooth fixed and then out of there.  The dentist is a decent guy- was a former neighbor when I was about 12 years old.  He got the tooth fixed, and I flew like dandelion seeds in the wind. I’m waiting until my dental insurance goes into effect on June 1st for anything major. I finally found a policy (Medicare doesn’t care about teeth) that I can afford and has decent coverage.

But since then, my jaw has been bumming me out, so I got it checked.  I am not pleased with the lack of diagnostics to make sure it’s not broken.  One x-ray would shut me up- I may call my regular doc tomorrow to see about it- she knows me and listens.  I just saw her last week for my disability paperwork review (pain in the butt paperwork for the insurance company).  I’ve declined over the last year.  She thinks that the chemo for the leukemia has pretty much trashed my body- but what was the option? If I didn’t take the 19 months of various IV and oral drugs, I would have been dead within  a week of diagnosis; I’d already had the bad lab work for about 3 weeks, and with APL, people are generally dead within a month if treatment isn’t started.  I had to do it.

We talked about the dysautonomia, and the probability that it’s from diabetes. My blood sugars were outrageous when I was diagnosed (like 389mg/dl for a random check, and an A1C of 10.2).  Nobody knows how long I had been undiagnosed. I was diagnosed with dysautonomia about a year after the diabetes diagnosis, so there’s a really good chance I had the diabetes a long time before it was confirmed.  I’d talked to my neurologist about what else could be done (since it’s a neurological disorder and all), but she didn’t know the cause (and didn’t seem too interested in finding out).  Now, I’m not sure if I should take it up with my endocrinologist, primary doc, or who.  I get tired of all of them, even though they’re all quite kind.  My oncologist tells me to just be thankful I’m alive- and I am. But I do have bummer times when I fell overwhelmed.

Since I’m not working as an RN, I feel so useless.  I have so many physical limitations, even though my brain functions pretty well most of the time. I have brain farts and some memory blips.  Sometimes my word-finding isn’t so great, and I can get emotional over stupid stuff.  And God forbid anybody have the thermostat over 65 degrees, or I panic because I know that I’ll pass out.  I wear the ice vest most of the time when I leave home.  Or, I shop at 2 a.m. to avoid the heat of the day.  I worked nights for years, so being awake isn’t hard.  It’s also nice to not have crowds who are impatient because I’m slow. I get tired of the heavy sighs behind me; I try to stay out of the way- but there’s always some grouch.  Why can’t people just be thankful it’s not them?

Sometimes I get worn out about my spine collapsing (degenerative disc disease), fibromyalgia, arthritis, degenerative joint disease (one knee already replaced- one with a partially torn ACL and medial meniscus that never got fixed because of that pesky leukemia), blah, blah, blah. My primary doc feels that some of the leg pain is from collapsed discs in my lower spine.  If I have ‘known’ collapsed discs in my neck and upper spine, there’s no reason to think they aren’t also in my lower back.  I haven’t had a pain free day since around 1995.  I don’t have that frame of reference anymore. When someone asks me to do one of those pain scales, it’s a joke.  A 5-6 is my normal.  That’s a good day.  I have to make something up to fit their paperwork.

But, I know I have a lot to be thankful for.  Yes- I’m declining. I am having trouble getting normal things done at home.   But, I’m still in my own apartment.  I am not captive to the schedules of some nursing home or assisted living place with employees that would rather work in a landfill.  My mind is still intact (or so I tell myself 😀 ) .  I have doctors that don’t judge me (now that I changed oncologists).  I have a puppy, who is really quite adorable, though she’s going through the ‘el destructo’ phase right now with teething.  But she’s a great little companion, and even though she’s only been here for 2 months, she’s got a place in my heart that isn’t going anywhere.  But some days are just the pits.

So, today I’m whining.  My body hurts.  I feel like a mutant.  A useless mutant.  And yet it could be so much worse.

Loves to play ALL. DAY. LONG.  4 months old now !

Loves to play ALL. DAY. LONG. 4 months old now !

Big girl haircut !!

Big girl haircut !!

 

The End of Life As I Knew It

Nine years ago, on April 6, 2004, life as I knew it stopped.  It was my last day working as a full time registered nurse because of medical disability. I tried to go back to work a few months later, but it was a total failure, even though I was working back into full time hours slowly. My body was broken.  There was nothing to do to fix it.  I entered a world I didn’t really  understand- that of being useless and having no obvious purpose. My life since the age of 21 had been about being an RN (I graduated from nursing school in May 1985).  I had worked so many overtime hours and holidays because I enjoyed working.  And then it was gone.

I’m not sure when the medical problems ‘officially’ started, but I know when they got bad.  About 5 months after moving back to the midwest from Texas, and being subjected to indoor heat, the symptoms of my dysautonomia became severe enough to cause me to start having heart rate and blood pressure episodes that made working impossible at times. Then, over the next 10-11 months, it got to the point  of being totally unable to work.  I’d pass out if I got overheated, and that didn’t have to be all that warm- most people found themselves comfortable when I was turning beet red and feeling like I was going to faint.  Then there were the seizures.  Later, it was discovered that they are more likely to start at the beginning of sleep cycles…but that could be at the beginning of blood sugar fatigue, as well as the deep sleep I’d end up in after one of the dysautonomia episodes. It was a mess to sort out.  My boss and co-workers told me what they’d seen, which helped the doctors at the time.

My employer had started sending me to the emergency room by ambulance when I was found unconscious or seen seizing or collapsing. I was a liability.  It got to be a routine occurrence.  I was sent out more than the elderly residents at the nursing home where I worked (like a dozen times in the last 2 months I was there).  I remember none of the ambulance trips, but I do remember a lot of abusive ER nurses and docs when I would ‘come to’, who thought I was a low-life ‘frequent flyer’. They never stopped to realize that I hadn’t sent myself to the ER- I’d been sent.  ER personnel like to fix things. I couldn’t be fixed, so they took it out on me with name calling and general ‘disgust’ when they interacted with me. There was a rare ‘nice’ doctor or nurse, but I began to dread waking up in the ER.  It got worse before it got better (I found a different ER).

Those initial months and then years of not working were really difficult. In addition to the neurological disorders, I was having drug interactions that dropped my blood pressure low enough to cause small strokes.  It wasn’t uncommon to have a blood pressure in the 40-50/20-30 range.  I was usually still conscious but definitely feeling very unwell.  It was scary.  I eventually figured out a way to put a thin feeding tube in my own nose to put Gatorade through, in order to increase my blood pressure with fluid volume.  It beat going to the ER.  There were also the times when the dysautonomia kicked in and my pulse and blood pressure would go nuts on their own.  I was so frustrated that I couldn’t just ‘make myself’ do things that used to be so normal.  Like work.  Or go out in public, where the thermostats were out of my control. Now, I’m pretty much homebound, aside from monthly trips to the grocery store or MD appointments. I have as much as possible delivered.  It’s just too painful and risky to do much away from home.

It took many years to work through the shock of being unable to work.  I kept thinking I just had to ‘make’ myself well enough.  But I was having trouble doing basic things around home.  My world shrunk to that of my apartment and the monthly trip to the grocery store, or doctors’ appointments.  At the time, I had nobody to socialize with; I had no friends here.  I also didn’t have online access to most people I’d known in Texas, and none with people here.  I had my dog- and she was so important. I also had regular contact with my dad. But nothing with anybody who understood being a nurse, or being disabled.

Things are getting progressively worse when it comes to ‘normal’ activities. I just took the trash to the dumpster (about 12-15 yards away), and am now in considerable pain.  Pain is a trigger for the dysautonomia (along with heat), so I need to get more comfortable to prevent my blood pressure from crashing.  It’s very frustrating to feel like such a ‘wimp’  with normal activities.  Making lunch is also painful.  I have ‘grab and go’ foods as much as possible.   When I have ‘good’ days, I’ll make tuna salad- and then hurt.  I keep trying to do things, and it’s harder and harder.  I don’t know what sort of future I’ll have.  I am trying to find ways just to  make things work here, so I don’t end up needing assisted living anytime soon.  I want to be independent. It’s hard to accept help.  I don’t want to be a ‘whiner’ or not do as much as I can… but when I do, I always end up in a lot of pain, and often pre-syncopal.  I turned the air conditioner on about a week ago, when the night temps were in the 20s, but daytime temps were over 40.  It’s a matter of just being able to survive being at home.

I think about my old life a lot.  I miss working as a nurse. I keep my license active so I don’t have to say I ‘was’ a nurse.  I still am a nurse- unable to work as one, but I’m still a ‘real’ nurse.  Many things have changed in the nine years I’ve been disabled. But there are core nursing things that I still remember. I remember some of the patients  I took care of, and many of the other nurses and personnel I worked with. Those are good memories.  I’m glad I have them.

To those who think it can never happen to them…. you never know what life is going to hand you, or what challenges may come  your way.  Get disability insurance whenever you can.  It can make the difference between living in a decent place, or barely making it at all.  Take time to enjoy things, and don’t work ALL the time.  Jump on all opportunities to experience all you can.  Don’t create regrets.  Do make time to nurture friendships that will last.  Don’t let horrible experiences create limitations that don’t have to be there.  Live as much as you can !

Remembering Peeps and Mom

Mom loved Peeps

Mom loved Peeps

This week will mark the 10th anniversary of my mom’s death.  It really was a miracle that she lived as long as she did, considering bilateral breast cancer (one side was actually ‘pre-cancerous’ but required a simple mastectomy, but the other side required a radical mastectomy), metastasis to her right lung, and metastasis to the right side of her brain.  Those are ‘just’ the cancer sites…she also had other cancer-related diagnoses including seizures that started well after her cancer treatment and dementia as a result of brain radiation.  The dementia was the hardest to watch. On March 13, 2003, she died after becoming septic from a urinary tract infection. She couldn’t verbalize symptoms very well, so dad didn’t know how sick she was until she began to have increased seizures and became unconscious during their winter away in Arizona. She had been ‘fine’ the day before, and had been with him at an art gallery.   Mismanagement (neglect) by the emergency room where she had been taken by ambulance (unconscious) took away any chance she may have had (they sent her home when she needed IV antibiotics- not pills and an elderly husband as her only caregiver more than 2000 miles from home)…but dad and I have to look at it this way: at least she didn’t end up in a facility not knowing anybody, and being impossible to care for at home. She survived 17 years after her last cancer diagnosis… I don’t know many people who have survived the all of the various cancers she had, especially back then.  If I remember right, her first breast cancer diagnosis was in 1981.  Things have changed a lot.

My mom and I were never all that close. For decades, I knew she loved me, but didn’t have a clue if she actually liked me. It was a hard way to grow up, especially when I was little.  As I got older (as an adult) and was able to imagine things from a point of view of someone in her situation (she had two newborn baby boys die within two weeks of their birth about 2 years apart  by the time she was about 25 years old), it made more sense that she couldn’t allow herself the luxury of being  vulnerable to more loss.  She was able to convey warmth to her students during the years she taught 2nd grade and later 4th grade and in the resource room at Rockford Christian Elementary School; they weren’t hers to lose; she could risk more of herself… but I never saw that degree of warmth.  I get it now.  She wanted me. She loved me. And she was terrified of losing me (confirmed by her mother).  It’s heartbreaking to look back at what she went through.  As a kid, I didn’t get it.  I just felt like she wanted me out of her way. I’m glad I was able to get past that as an adult, and feel compassion towards her.  She did the best she could most of the time.  I may not understand her reasons for some things, but I think most people do the best with what they are equipped to handle.  Add the loss of two newborns before her brain was even done growing, and more makes sense. That in and of itself would change her brain chemistry.

As mom’s dementia progressed, she had fewer and fewer things that she remembered and gave her some degree of pleasure. She watched the same movies over and over again, since she remembered them (and do NOT call  her while she was watching them, or she’d hang up on  you- something she’d never do in her ‘normal’ years).  She loved sweet stuff, which I’m told isn’t how she was when she was younger. I do remember her liking ‘Fifth Avenue’ candy bars when we went grocery shopping when I was a kid. She also was quite willing to take my Halloween candy leftovers (I didn’t like Baby Ruths, peanut butter taffy, or most marshmallow candy).  All I had to do was sort it, and give her my rejects- and she loved them.  During her dementia years, spice drops (gum drops) and Peeps were favorites. I made sure she had gum drops when she and dad visited me in Texas.

Peeps began making their marshmallow candies for holidays other than Easter, so I’d go to the store the day after holidays and buy mom a bunch of Peeps when they were half-price. They hardly weighed anything, so I’d mail them to her in Illinois from where I was in Texas.  She loved getting those ‘care packages’. Dad, however, was not all that amused by having to police them, since she’d eat them all at once if left alone with them.  This is the guy who would go all over town in July looking for pumpkin pie since mom thought it was Thanksgiving.  With the Peeps, he’d hear “I want some Peeps” multiple times a day until they were gone.  She remembered they were there…

Whenever I see Peeps, I think of her and the simple things that made her happy during her last several years.  As hard as it was to watch her slip away and become someone who was so unlike the ‘normal’ her, it was also so easy to make her happy.  I never felt I could do things ‘good enough’ as a kid- it may sound sappy, but I wanted to do something to make her happy when she had so little of her real self left.  For dad, it was hunting for pumpkin pie (and other goodies) during the off-season for whatever she had in her head that she had to have. For me, especially before I moved back home to help dad take care of her, it was gum drops when they visited, and Peeps to mail to her.  I don’t like Peeps at all.  But they do make me smile when I think of how happy they made her .  🙂

Peeps remind me of my mom

Peeps remind me of my mom

Limitations Don’t Define Who I Am

My disabilities don’t make me who I am.  I don’t want someone else’s life, because that wouldn’t be me either.  I wish many things weren’t the way they are, but I don’t want to be someone else.  I’m getting very close to being 50 years old, and I’m OK being plain old disjointed, imperfect me.  I can’t be anybody else.  Trying to be someone else wastes the time I have.

I’m not able to do many of the things that I used to think defined me. I’m not able to work as an RN, and I miss that more than I can describe.  I miss taking care of other people in the way that gave me so much satisfaction.  I treated them as I’d want to be treated.  I learned how to empathize with their pain, and in turn be a better human being.  I miss those moments with someone who was going through something life-changing, and being able to offer some level of comfort.  But being a nurse doesn’t really define me. I used to think it did.  It’s a huge part of me, but it’s not all of me.

I’m diabetic, epileptic (temporal lobe nocturnal seizures), a cancer survivor (acute promyelocytic leukemia), I’ve got fibromyalgia, lung scars from multiple pulmonary emboli, bone spurs in my neck, chronic headaches, severe muscle spasms with any lifting or repetitive motion (groceries, trash, laundry), and dysautonomia, which causes severe heat intolerance, blood pressure and pulse changes, and very limited activity tolerance.  And none of that defines me.  It’s stuff that I have to deal with on a daily (sometimes hourly) basis…but it’s not who I am.

I had eating disorders for years (decades), but anorexia and bulimia don’t define who I am. I thought they did, and when I was in early recovery, I didn’t know who I would be if I wasn’t ‘the one who won’t eat’.  But all eating disorders did was mask who I really am.  They took away my ability to live normally and interact with people in a way that really put me into any sort of relationship. My main relationship was with the eating disorders. Nothing happened in my life unless I thought about how it would affect my ability to avoid calories.  That was my primary motivation in everything; any sort of real friendship was put way down on my list of priorities- though I didn’t see that at the time. It was a very selfish time in my life that I’m not proud of.  Eating disorders only steal time- they do nothing else.

Being a rape survivor doesn’t define who I am. It has had a huge impact on my life to have survived six hours of continuous sexual torture.  It changed how I interacted with people, and my ability to allow anybody to get very close.  But it’s still a relatively small part of my life… six hours changed a lot, but they didn’t change who I am at my core.

So, who (and what) am I?  I’m an average human being who wants to be accepted and have people in my life who accept me, warts and all.  I loved (and miss) all of my dogs, and am looking forward to getting a new puppy (and am waiting for her to be conceived at this time; I know where she’s coming from).  I care about people, and my heart goes out to those I see on the news, and hear about on FaceBook.  I miss my ‘old’ life before disability, but am learning to accept what my reality has become.  Most of all, I love God.  Without Him, I wouldn’t be here.  The consistency I feel when I read through the Bible (especially Psalms and Proverbs when I’m feeling badly) is what I can depend on much more than I can with human beings, who are fallible just as I am.  Every day is a chance to just ‘be’. I’ve had times when I thought that I would die, so life is precious.  I realize that in spite of things that have happened, I’m very fortunate in so many ways.  Some days, I don’t remember that as much as other days.  But I do understand that I’m here for a reason, and I’m thankful for that.

 

 

Blood Sugar Dump And Falling Into Walls

I didn’t feel that great yesterday.  Nothing specific, just a headache (which isn’t unusual for me at all), some queasiness, and just not feeling right.  So, I limited what I ate to jello, mashed potatoes, and other bland foods that provided some carbs to deal with the basal insulin dose I take twice a day.  The bland food helped the queasiness, and I figured I’d had enough carbs for the insulin.  I’m usually pretty good with my diabetic and  RN knowledge (nearly 28 years since graduating from nursing school; 20 years as a working RN taking care of a lot of diabetics, 17 years as a diabetic, and 8+ years of being disabled and learning a LOT from a patient’s point of view). I figured wrong.

I went to bed around 6:30 p.m.  Normally, I’m up until 2:00-3:00 a.m., easy.  I’m a night owl. And don’t talk to me before noon.  But, I was really tired, so I decided I’d either go to bed, sleep for a few hours, and then resume my normal night owl schedule, or I’d sleep straight through. I didn’t care.  I was still awake at 7:00 p.m., so decided I’d just take my nighttime meds (including my main dose of Lantus insulin) and be done with it for the night.  I crawled back into bed and fell asleep.

At 9:40 p.m. (it’s written down in my blood sugar log) I woke up to go to the bathroom, but felt really odd.  After falling into the walls walking to and from the bathroom, it dawned on my that I needed to check my blood sugar. It was 37mg/dl; I double checked it and it came back at 40mg/dl. It shouldn’t go below 70mg/dl, and my endocrinologist doesn’t want mine below 80mg/dl because of my history of epilepsy; I’m prone to seizures anyway- no point in adding hypoglycemia to the risks.  I was still with the program enough to grab one of my tubes of ‘gel’ candy (‘Squeeze Pops’ – cheaper than products marketed to diabetics, and tastes like Jolly Rancher candy, but in a tube, and a gel consistency). With some of that on board, I got some ginger ale. I checked my blood sugar about every 10 minutes until it had settled in the 90s (took about 30 minutes).  That was ‘safe’ enough to go to bed. I knew I needed a fat and protein source to keep from having rebound hypoglycemia, so justified a Reese’s Peanut Butter Cup 🙂  I was still really tired, but at least didn’t feel like I was having for force myself to stay conscious. That was better.

It’s really important to not ‘just’ do the simple carbs, or the hypoglycemia WILL come back.  I’ve been treated in a local ER, and they are clueless about the protein/fat source after getting the blood sugar back up. One time when I’d been brought in by ambulance for hypoglycemia, I was sent to the waiting room to wait for a cab, and was told the cab would be there in 45 minutes. The basic instructions for hypoglycemia are to  have a snack if the next meal is more than 30 minutes after treating the low blood sugar episode.  That’s ‘diabetes 101’ for lay people, yet the genius ER nurse was either clueless or just didn’t care (typical of that facility’s ER). When I was waiting for the cab, my blood sugar went down to the 50s again, and I told the triage desk person. She told me that since I’d already been seen, one of the nurses would talk to me IF she got time. I was safer in the cab going home.  It was really pathetic, and there’s no excuse for them.

My endocrinologist had prescribed a glucagon kit to me somewhat recently- but I live alone. Glucagon is designed for someone who has already lost consciousness, and requires someone else to mix the syringe of sterile solution with the little vial of powder, mix it up, pull it back into the syringe, and ‘shoot’ the person who is out of it.  I’m not sure how that is supposed to help me, except that I’ve dropped to the 30s before and couldn’t get it to come back up, while remaining alert. (I ended up calling 911 for that one, and getting IV D50W- that stuff feels awful going in)  I guess I could shoot myself.  Glucagon can be given under the skin (subcutaneously) or into a muscle (intramuscularly), so basically any good dart throw at the person will work.  I could do that. My outer mid-thigh would probably be the best place to aim for… a fair amount of real estate for a blurry eye and shaky hand.  But the kit I’ve got right now is expired by a month. It would probably still work, but last night, the edible carbs were working. I need to call the pharmacy for a refill on the glucagon….

For those ER nurses (and others; I’ve given it a few times working on a med-surg floor) who have given D50W, here’s a little inside information. The stuff doesn’t feel good.  It causes a strange warm feeling, and a feeling of needing to go to the bathroom NOW.  It’s unpleasant. It can also cause dehydration, depending on how high the blood sugar goes, with frequent urination and hyperosmolar  diuresis (frequent peeing from concentrated sugar in the blood).  Knowing this, and offering to help someone to the bathroom would be nice.  Go a little slow pushing the stuff- a few extra seconds isn’t going to cause brain damage.

It’s also important to realize that the half-life of D50W is dependent on the degree of hypoglycemia and the individual patient. Once it wears off, the blood sugar drops again UNLESS there is something to help prolong its effects, such as fat and protein.  Peanut butter and crackers, a candy bar, milk and crackers, or other protein/fat source is needed.  That’s also the reason that those items are not good for treating the severe low blood sugar. For ‘borderline’ or mild hypoglycemia (above 60mg/dl those will probably work OK… but always listen to facility policy if you’re treating a patient; if something goes south, that will be the criteria used to judge you).   The blood sugar will not rise quickly with protein and/or fat in the item being used to treat it.  Candy bars are NOT good ‘first aid’ for hypoglycemia, and will delay return to normal blood sugar because of the fat and protein. Once the blood sugar is raised with simple carbs, it’s necessary to give a fat/protein source- not before.

Anyhoo… I survived the night.  I hate the feeling of having low blood sugar, and last night included balance problems. Had the walls not been there, I would have hit the floor, which would have been bad news for my knees.  I’m not feeling that great today (same queasy, fatigue stuff as yesterday), but know to check my blood sugar more often today.

Emergency Room From Hell

There is a local emergency room that actually scares me.  I’m not the only one- whenever I mention its name to someone (even my new oncologist who works for the same organization) the reaction is usually “Oh, I know what you mean. I/my brother/mom/ dad/friend/ etc went there and they almost killed me/them.”  Their posted patient satisfaction percentages have been in the %60 range. That is BAD.  Hospitals run on patient satisfaction surveys (which is a whole other nightmare for healthcare professionals).  Reputations are hard to fix.  What is so bizarre is that the rest of the hospital is fine, or at least survivable. I’ve had many outpatient tests, a couple of admissions from the ER, and also a knee replacement at the same place, and the staff was tolerable.  I did have some complications after the knee replacement that were figured out a bit late, but nothing as bad as their ER.

One time when I was admitted, I had a nurse tell me that I needed to go home.  At the time, I was on a heart monitor because my heart rate had dropped into the 30s and was being erratic. But she looked familiar- I think she was one of the hags from the ER who was working on the cardiac floor.  I never could figure out how nurses could be so nasty.  I’ve had some unlikable patients, and some that were really unpleasant to deal with- but I’d never be inhumane or callously disregard their dignity.

I’ve got multiple chronic illnesses, and I’ve been an RN since 1985.  I’m on disability, but I keep my license current, and I know the appropriate manner in which to speak to and deal with patients. I’ve been a staff nurse, supervisor, charge nurse, and department head.  I’ve also been sent to various ERs over the years, though this scary one has been the worst, hands down.  Not even a close second comes to mind.   I was often sent there from work, unconscious, either from being post-ictal (what happens after seizures when people sleep very deeply) or my blood pressure bottomed out from my autonomic nervous system not working right (dysautonomia), and I’d pass out.

Other times, someone called 911 when they were either with me, or on the phone with me, and they could tell something wasn’t right (turned out I had some medication interactions that weren’t figured out for quite a while that contributed to some of the blood pressure problems).  I was labelled a ‘frequent flyer’, which is an extremely derogatory term given to patients who generally don’t have primary doctors and are often non-compliant. Neither of those applied to me. I saw my regular doctor monthly, and all blood levels of anticonvulsants were always therapeutic. I’m on disability because my seizures are not controlled. I’ve had testing done to see if part of my brain could be removed to stop the seizures, and that turned out not to be possible without causing more damage than it could help.  I’m not some joke patient who shows up for the heck of it (I’ve been accused of being bored, and using the ER for entertainment at the bad one).

But, the nurses and doctors at this ER didn’t care about me as a human at all. They never asked about regular doctor visits.  I was told I was a ‘wasted bed’ because I’d been brought in with seizures.  I was told that it was highly unlikely that I was compliant with anything.  They didn’t understand- or even try to find out- what I was really like as a patient- when I said anything that contradicted their assumptions, it was ignored. They made their assumptions and treated me as the parasite they thought I was.  The dysautonomia isn’t all that common as a given diagnosis.  It causes extremes in blood pressure and heart rates (and for me, heat and pain are major triggers).  My blood pressure would drop to a dangerous level at home  and per my primary doctor’s instructions, I would call 911 when it got below 70/50.  It was often much lower, and the lowest I know it to have gone is 44/16 during a tilt table test.  Even with objective symptoms, I was treated like a head case.

I rarely remember getting to the ER.  I had learned that when I woke up and saw the drop ceilings and bright lights and equipment, I was in the ER.  One night I woke up and a doctor was counting my pills from medication bottles EMS had brought from my apartment when a neighbor called them after I passed out in her apartment.  I asked him what he was doing, and he asked if I’d overdosed. I said definitely not- and asked what happened. It had taken 4 bags of IV fluids to get my blood pressure up to 80 systolic, and the nurses were getting me ready to go to ICU for dopamine (a resuscitative drug to maintain blood pressure). I ended up not needing it, since I managed to stay around 80 systolic, and I was making sense once I regained consciousness. But in the preparation to send me to ICU, a urinary catheter was inserted.  The balloon that keeps it inside was inflated before it got all the way into my bladder, and stretched my internal sphincter (what keeps the urine in the bladder) and upper urethra…talk about pain. I told the nurse it wasn’t all the way in, and she turned to leave the room without saying a word. I pushed it in the rest of the way myself.

Another time, I had just ‘come to’ and saw a doctor walking past the stretcher. I was still groggy, and he didn’t say anything to me, so I didn’t talk to him. I didn’t know what he wanted (or for sure that he was even a doctor for that matter- some guy in a white coat). He proceeded to begin to insert a breathing tube into my airway- something that isn’t done without someone to suction in case the patient vomits, some paralytic drugs to dull the gag reflex (to prevent vomiting) and calm the patient IF they need to be intubated, and without asking the patient if they are awake and know what is going on.  I have no idea why he wanted to intubate me (which more than likely would have landed me on a ventilator). He started putting the metal blade of the laryngoscope down my throat (has a light on it to see where to put the tube), and then the tube, which did trigger my gag reflex and I started to throw up. I turned my head to the right to let the puke fall out, and the metal blade (still down my throat) nicked my right tonsil, and it started bleeding. A nurse came in (finally) and since I was trying to breathe and reflexively trying to get the stuff out of my mouth and airway, they tied me down.  The doctor finally took the stuff out of my mouth and asked if I’d OD’d… I said “No!”.  He said “That’s all you had to say.” I couldn’t believe it… that was all HE had to ask !  I didn’t even know why I was there (still don’t), and it was HIS job to assess me before attempting to put in an endotracheal tube. It could be that because he assumed I’d OD’d that they were going to pump my stomach, and the ET tube was part of keeping my airway safe. But, nobody said anything to me. My medical record would have shown other ER visits with similar symptoms and ‘clean’ drug screens… There was one nurse who was helping me get cleaned up after the throwing up who was kind. She had a daughter with seizures and understood the post-ictal period.  I was just mortified.

I never got on the call light (when I could reach it), and would undo the monitors myself if I had to go to the bathroom, and put myself back on the monitors when I got back. I never asked for pain meds. I didn’t ask for anything.  I was never there for psychiatric reasons (patients who are not thought of well in most medical facilities, mostly from lack of knowledge and exposure to the various disorders). And yet I was treated like I was a total pain in the butt and whack job.

When someone comes out of seizures, there is generally a period of time when they are either extremely sleepy (and even coma-like) or mildly confused for a little while. Not everyone ‘comes to’ the same way. Not everyone has ‘TV seizures’.  I have complex partial seizures that turn into generalized seizures at times (when I end up ‘out cold’ the worst).  When I come to, I can hear things first, and then gradually get back up to speed- but sometimes my response time is slow.  The nurses at this ER from hell didn’t like that, so they’d double team me and put TWO  ammonia inhalants under my nose and hold them there as I gasped for air.  I was awake and knew what they were doing- but I wasn’t ‘all the way back’, so my response time was too slow for them- so they assumed I was a psych case being difficult. Or faking.  They were punitive.

When Social Security was reviewing my disability paperwork, they had over 1000 pages of medical documentation over the previous 3 years, including abnormal EEGs (brain wave tests used to help diagnose seizures/epilepsy) and blood pressure crashes.  But the nurses at that ER thought I was a nut job.  I was horrified that SO many nurses like that exist.  When I’d worked in Texas for 17 years before returning to Illinois, I worked with great nurses. Even if someone wasn’t necessarily going to be a ‘friend’ outside of work, I never saw cruelty or pure meanness.  We had a lot of wild shifts at work- and I never saw one of my coworkers in Texas act like those hostile nurses in that one ER.  I’d worked in another hospital in this town (pediatrics) and then a nursing home- and those nurses were also good to their patients.  But the nurses in that ER of the religiously-affiliated hospital were downright nasty. The docs weren’t much better.

When I was taken in for very low blood sugar one time, they got my blood sugar up with two ‘amps’ of D50 (sugar solution given IV), and then called a cab.  The nurse told me that it would be about 45 minutes until the cab got there, and I should wait in the waiting room. Basic treatment of hypoglycemia instructs people to eat a snack with protein and fat to prevent blood pressure from crashing again once the D50 ‘wears off’, unless their next meal is within the next 30 minutes.  I was sent to the waiting room with nothing (usually a half a sandwich, or peanut butter and crackers is standard hospital fare for low blood sugar after it’s brought back up).  Fortunately, I had my purse with some change for vending machines, and my own blood sugar monitor.  Within a few minutes, I could feel my blood sugar dropping even though I’d gotten a bag of peanuts from the machine.  I tried Coke, and it was still dropping. When I told the person at the triage window, she told me I’d already been treated, and if a nurse had time she’d come and talk to me.  I was safer on my own.

There had been a weird period of time when I was having episodes that were much like the autonomic disorder, and a bit like seizures, but not quite. I had been in the ER (per home health instructions) several times in one month. One night, I was having more trouble with my blood pressure, and went to the ER. The doctor actually told me I’d been there too much that month, and he wasn’t going to do anything. I asked if they could at least check my blood pressure again (it had come up somewhat from being moved from the ambulance stretcher to the ER gurney), and he refused to tell the nurse to simply push the button to do another BP reading.  He never got within 5 feet of me.  Ten days later, I had severe chest pain, and ended up going to another ER (per the instructions of my doctor’s nurse, who was affiliated with the scary place), and it was discovered that I had multiple blood clots in my right lung (all three lobes) and right pulmonary artery that were pushing into the base of my heart, causing EKG changes that showed my heart wasn’t getting enough oxygen (just from the pressure of the junk in my lung).  The clots were of various ages- acute, subacute, and chronic- so would have been present during the time when the doctor negligently blew me off. He could have killed me with that decision.

I’ve written to the hospital with the creepy ER, and got the standard ‘we aim to give the best possible care’ letters. My own doctor was told by one of the few nice doctors at the bad ER that he’d witnessed how I’d been treated. It wasn’t just me being snarky.  My doctor believed me. The ‘new’ ER saved my life.  I had asked the doc at the ‘good place’ that night the pulmonary emboli were found if I could go home and get a few things since I was being admitted for a few days, and she told me she didn’t think I’d live that long; the next night I was in ICU getting clot-busting drugs when I started having the same pain again.  I’d driven myself to the ER… not recommended.

For those in nursing school, new grads, or starting to work with different types of patients,   consider this:  You aren’t going to understand everything about everybody you encounter as a nurse. But just because YOU don’t get it doesn’t mean it’s OK to take out your lack of knowledge on the patient,  who could very well teach you something.  Cruelty during urgent/unstable medical situations  is never justified.  And it’s not something that can be ‘fixed’ later. You represent where you work, and your profession.  It’s not about you when you’re assigned to take care of someone.