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 😉

Dysautonomia Awareness Month…. I’m Very ‘Aware’ All Year, Every Year

OK.  October is Dysautonomia Awareness Month… With ‘Breast Cancer Awareness Month’ at the same time, nobody will care about dysautonomia.  My guess is that men are more than likely behind the sanctity of boobs, so along with being a rare disorder that people really are NOT aware of, there is the whole ta ta thing that people go all pink for, and dysautonomia remains a mystery to most, if they ever hear about it at all.  Don’t get me wrong, I’m not ‘against’ cancer awareness, but who on the planet with a pulse and working brainstem isn’t aware of  breast cancer?  They never seem to mention that %5 or so cases of breast cancer are IN men. That question used to drive men mad when I did patient intake admission assessments when I was working. I had to explain I wasn’t being snarky- it’s something men need to be aware of if they feel anything different ‘there’.

I’m an RN (disabled since 2004, but have kept up with my license requirements, and use my background to keep myself alive). I’ve known, and do know, many women who had  breast cancer (including my mom, who died in 2003 after surviving multiple cancer sites for 17 years starting with breast cancer, and dying from something unrelated other than the dementia caused by brain radiation that made her less than ‘worth helping’ when she got acutely ill in AZ.  Dad flew with her home, emergently.  We went straight to the hospital, and she was dead in 2 days). I understand that any cancer diagnosis is a nightmare (I’ve been there, with APL leukemia).  (And why is there no blue ribbon with balls on it for testicular cancer awareness? Ladies? ).   Anyway, dysautonomia is something that I’ve lived with for decades- probably much longer than it was diagnosed.  It didn’t flatten me for good until 2004.  And most doctors are clueless.  The general population can’t even pronounce it.  Dis-auto-gnome-ee-ah.

Every morning, I wake up not knowing if I’ll be able to actually get out of bed and begin my day without my head spinning as my blood pressure and heart rate tanks (with neurocardiogenic syncope) or pulse going higher as I’m vertical, if the more POTS symptoms act up. (Not everyone has just one set of dysautonomia symptoms or diagnosis).  Will my peripheral vision begin to narrow, and will my hearing get muffled?  Or will I actually be able to get up and not have to lie down again?  When I get in the shower, will I get that ‘sweet spot’ in the temperature of the water where I can take a warm shower, or will it be too hot, and once again start the process of passing out?  My heat intolerance isn’t about temperature preference or comfort, it’s about staying conscious.   My home thermostat must stay around or below 65-66 degrees year round (including when it’s 20 degrees outside; I had my bedroom AC unit- different from the central AC in the house- on 64 degrees when the wind chill outside was MINUS 20 degrees F), or I start to have symptoms.  Fifty degrees is OK if I’m outside for the rare times I can be outside (the sun adds heat regardless of air temp).  I wear a light snap-front sweatshirt, left open,  when it’s in the 40s.  If I leave home to go to an appointment where I have no control over the thermostat, I have to wear a cooling vest with 5 pounds of freezer pack inserts.  To stay conscious.  I’ll start to ‘burn up’ for no good reason (and these are NOT hot flashes- I’ve had those, and they are totally different).  Or I’ll get so tired, that doing anything is overwhelming and a huge safety risk if symptoms continue to get worse.  I’ve keeled over and whacked my head, or as has also happened, partially torn my ACL and medial meniscus.

I ‘look OK’… aside from being overweight, and having very few eyebrows post chemo (which at this point has to be permanent), I look fine.  That’s all well and good- but it can also be very frustrating when trying to explain why I can’t do something.  I also have multiple ‘other’ medical and orthopedic problems (discs, knees, shoulders, hips, spine, epilepsy, diabetes, yadda, yadda, yadda… most body systems are impacted by something), so when I’m walking I look a bit gimpy, but the dysautonomia is  invisible if I’m not lit up like a red stop light from severe flushing when the episodes kick in.  My thigh muscles have atrophied (probably from diabetes and chemo), which looks weird, and makes walking quite tiresome. My arms are also atrophying.  But people really don’t ‘get’ the whole dysautonomia thing.

The autonomic nervous system controls involuntary body functions- blood pressure, heart rate, breathing, flushing, muscle/brain signals, etc.  There are many ways this can all go wrong.  Initially, I had problems with passing out, as well as my right pupil dilating.  Then my gait would get wonky, and eventually I’d keel over, unconscious,  and then sleep hard for hours.  Temperature dysregulation hadn’t shown up yet.  I was in Texas when this all started with the passing out and other ‘not good for work’ stuff, and I did fairly well at first.  When it was first a ‘thing’, I was living in a house (with no central AC…in Texas. In July) with a coworker to share expenses (perfect situation; we had opposite schedules, so it was basically like living alone. My room was in the front of the house, so shaded by trees outside. There were room AC units in the bedrooms).  My housemate would hear me hit the floor from her room at the other end of the house, and find me passed out on the wood floor.  I thought I was just ‘nervous’ after a recent hospitalization for eating disorders, but she said that there was nothing  ‘nervous’ about me that she’d seen, and she really thought I had some type of physical medical issue.  One  night I couldn’t get up off the floor like usual (about 10 minutes after coming to), and I agreed that she could call 911.  That started the whole testing process. I’d keeled over about 10-12 times in three weeks. I finally gave in.

I was lucky that I had a neurologist in 1996 who thought I had dysautonomia. She sent me to see an electrophysiologist (EKG specialist) in San Antonio, who ended up doing a tilt table test.  My blood pressure dropped to 44/16, and heart rate dropped into the 50s (heart rate should go up, and compensate for a low BP, though a BP that low isn’t usually associated with ‘coming back’).  I was put on the first of several meds, and sent home (driving myself 60 miles after nearly passing out- I had long stretches of interstate with little traffic where I was going, and a plan if I felt bad while in the car).

I continued to have issues at work, but eventually meds were sorted out (gabapentin, a benzodiazepine, and a beta blocker), and I was doing well enough to get my work done. Additional disorders were ruled out (MS, myasthenia gravis, pheochromocytoma, brain tumor, stroke, etc).   The nursing home I went to work at next had some very accommodating supervisors, which made a huge difference in not being panicky when I felt something coming on (the prior place did a lot of ‘threatening’, and since I was the only RN on campus at a drug/alcohol detox center on weekends, I understood the need for a conscious RN – but I didn’t want to stop working; being a nurse is who I AM- or was).  I had a mattress overlay in my office at the nursing home,  to put on the floor if I needed to lie down.  I also had a fan from home, as temperature had begun to be something I had to keep ‘moderate’.  If an episode hit, I lied down; when it was over, I finished my work.

Fast forward, and I was back  in my hometown, trying to keep things together at work, and it just started falling more and  more apart. I was hauled out by ambulance 12+ times in a month or so at another nursing home (office RN assessment job), and it was clear that I wasn’t able to keep working. I don’t remember any of the trips to the hospital, just the nastiness of being seen as a ‘frequent flyer’ by the nurses and doctors who’d never heard of dysautonomia, and made cruel assumptions.   I’d left a pediatric hospital job since I was terrified I’d get dizzy/lightheaded when handling very tiny babies (or larger, heavy ones), and that just wasn’t something I was willing to risk (along with some other issues with the job itself).  I had to deal with a  neurologist on my insurance plan at the hospital, who seemed clueless- she just kept increasing the gabapentin until it was 3600mg/day, and that did nothing but make the seizures worse since they are sleep stage-related, and I was nearly always getting close to the early stages of sleep, that were confirmed on video-EEG over a week in a teaching hospital by another electrophysiologist.  Once on disability (and no Medicare for two years after being ‘approved’ for disability for medical reasons, and it takes 2 years to get Medicare- so that made no sense), I found a neurologist who did know about dysautonomia, as well as a internal medicine doc who was quite familiar with the disorder.  With multiple medications (roughly 25 pills/day on a good day; more if not- and 4-5 shots of insulin) and total control over my thermostat, (edited for 2020) I’m able to watch TV in bed with my legs up, and get to the end of my driveway to get the mail, or take out the trash (I live alone).

Now, my ‘normal’ consists of having the air conditioner on when it’s below freezing  outside.  When there is snow piled up outside, my AC unit is the only one with space around it where the snow has melted from the heat generated by the AC.  I leave home only for doctor’s appointments and if the dog has to go to the vet or groomers.  Everything has to be ‘paced’. I have a self-imposed driving distance limit, that my neurologist is comfortable with (I know if I can’t drive, and don’t put others or myself at risk).  If I do laundry, I can’t unload the dishwasher.  If I take trash to the curb, I can’t vacuum in the same day.  And I struggle to maintain any muscle tone, to avoid getting worse… but the chemo I had to have to survive the leukemia has caused deterioration.  I guess there are tradeoffs with everything.  Nothing is taken for granted.

Being on Medicare has been a horrific eye-opener.  I used to do the assessments that determined reimbursement for Medicare patients at the nursing home I worked at in Texas.  I was professionally familiar with Medicare.  Then I was on it.  Medicare is expensive.  There is the part B (doctors’ office and equipment/supply part) monthly premium (about $110).  There is the supplement plan since Medicare doesn’t cover huge portions of hospitalizations and tests (so add another $310 per month).  The part D (prescription plan) is about $75 per month, and between over the counter medications I MUST have, as well as paying huge copays for insulin until I get to the ‘catastrophic’ phase of part D, that adds about $350-400 a month.  SO if all goes well, nearly $1000/month goes out the door for medical expenses. I chose a supplement that pretty much ensures no out of pocket expenses for doctor’s office visits, tests, and (knock on wood) hospital costs.  When I was in for 6 weeks for leukemia in 2010, the bill was $300K…. nearly 1/3 of a million dollars.  I made  payments on what they didn’t write off for 4 1/2 years. That was in addition to the other medical expenses. Advantage plans are only good for people who don’t get sick. When I signed up for one, I never imagined leukemia would come into the picture.

Dysautonomia can be mild or fatal.  With the chemo causing deterioration, and knowing what I was like beforehand, I don’t think I have the fatal type (Johnny Cash did).  I have the invisible, life-altering, disabling, survivable kind that is inconsistent, and not something I have much control over, other than the thermostat and pacing all activities.  Some symptoms may be worse than others on different days.  I can have one cheek very hot, and flushed to almost a blue-red, while the other is cool and has normal coloring.  I can have blue fingernails, not from lack of oxygen, but because of constricted blood flow.   My heart rate has dropped into the 30’s for no good reason (that bought me 5 days on a cardiac floor with nurses who were very nervous about the epilepsy- padding the side rails and putting a bed alarm on my mattress that went off if I got up to go to the bathroom- and GADS, they panicked when I got up to walk in the halls for some type of activity one night…. how did they think I lived at home?  Alarmed, padded bed? I worked as an RN on a neuro floor, and we were careful, but not crazy pants paranoid… seizure patients all have different symptoms and THEY are the ones who are experts in how epilepsy shows up in THEM. It’s rarely the landed-fish flopping around that is on TV. Many, many epileptics work and have pretty normal lives, being compliant with medications and doctor appointments).  Sometimes one arm is flushed and hot, and the other cool and pale.  I’ve looked ‘dead’ per one former supervisor, with breathing so shallow and extreme paleness, it scared her many times.  I live alone, so have had to learn what sets me off… sometimes it’s as simple as a ‘scare’ on a TV show that wasn’t expected. A horrifically nasty post on social media can trigger a flight or flight response that gets things going (so I am on social media at my own risk, and anticipate the jerks chiming in about things they know nothing about-or who can’t tolerate that someone has an opinion that differs from theirs).  But heat and pain are my main triggers.  I’ve been in constant, chronic pain since 1995- that’s harder to control than the temperature. I’ve only recently given in to ongoing pain meds with a pain doc I’ve seen on and off since around 2008. The epidural injections help some, depending on what gets ‘shot’, but they don’t last long.  I’ve tried medical cannabis and CBD- didn’t like the THC at all. The CBD is good if I have to sleep, and/or need something to tire me out enough to quit trying to do too much.  It’s been 25 years of not remembering being pain free (which isn’t a reasonable expectation at this point, but controlling pain to get to a level that is tolerable IS a reasonable expectation). I need pain meds to function enough to keep up my house (which I have to pace).  I’d rather be here, alone than in some assisted dependence situation with people I don’t want to know, and time schedules I don’t want to have shoved down my throat.  I’m independent. I may be in pain to the point of being in bed after a day of 2 loads of laundry- but I’m in MY house, with MY dog, doing MY ‘chores’.

Some people have POTS (postural orthostatic tachycardic syndrome), which causes symptoms if someone is standing for varying lengths of time- or sitting up for longer than they can tolerate. Their heart rate goes out of control simply by being vertical. Lots of folks with that need wheelchairs for safety at some point, and some might ‘just’ need a walker with a seat for safety if they need to sit down in a hurry.  There is neurocardiogenic syncope- which is actually a simple faint, until it’s a pattern and keeps happening. It becomes something that is no big surprise, based on triggers (different for everyone).  There is pure autonomic failure – where nothing works right most of the time.  Shy-Drager syndrome is one of those total failure syndromes, and even saliva production is involved.  Dysautonomia isn’t one thing.  It’s a combination of symptoms that are generated by an abnormality of the autonomic nervous system.  Some are relatively minor, and others require feeding tubes (I’ve learned to put my own in since I’d done it many, many times on patients when I was working, and use it for fluids since doctors here don’t believe in intermittent IV fluids) and other external measures to make it a little more tolerable.  More people have dysautonomia than are diagnosed, per research estimates. It can affect any age group or gender, though females tend to be diagnosed more often. I’ve had symptoms since I was a teenager, but was blown off until it couldn’t be blown off- an unconscious body on the floor isn’t generally “nothing”. I recently read about the connection to concussions (I’ve had at least 5-6).   It can be seen as a conversion disorder or other emotionally based problem, which causes improper diagnoses, and completely inappropriate medications.  I encourage anyone who finds their symptoms listed in the informational links to talk to their doctor.  There isn’t a cure, but it’s generally not fatal, and can be treated.  Getting used to the new normal is the hardest part, as is not being understood.  And isolation takes a while to adjust to. When the pandemic (2020 edit) caused “stay at home” orders, it was literally how things have been for the last 16 years for me, and countless others who know to be thankful for the days when nothing goes wrong.

See the following for more information:

www.ndrf.org 

www.dysautonomiainternational.org

www.dinet.org

 

 

 

 

Groceries and Dysautonomia

This one went to OH this week :)

This one went to OH this week 🙂

More on him in a while….

Before dysautonomia, I loved grocery shopping.  I’d go to several places for various things, and just truly enjoyed picking out fresh produce, making new things, and trying something different each time I shopped.  Now, I am thankful to get out upright and lucid, and home on my own power.

I’ve learned that it’s much better for me to shop in the middle of the night when others who are huffy about me being rather slow are home with their noisy kids.  It’s also cooler, and while I wear my ice vest year round (in the winter people have the audacity to have their heat on), it’s the only truly  safe time to go (well, as safe as it gets).  If I try to go when it’s 90 degrees outside (and humid, like we have in Northern Illinois, and most of the Midwest during the summer), it would be incredibly foolish.  I can manage a quick ‘refill’ trip for milk, ice, and things like that…. but for my main shopping, it’s a middle of the night affair.  Handicapped parking also helps (and keeps me as independent as possible).  And, I remembered to take my cell phone tonight !

I just went shopping a few hours ago.  This time was rather noteworthy as I’m just now back on the extended release form of propranolol (beta blocker that works for me).  The idiots that decide the formulary for the Medicare part D prescription plan (which I pay for– and get the highest coverage possible) opted to cut out the extended release versions of generic meds. GENERICS !  That stuff that was free (for the past 4 years) if ordered through the preferred mail order pharmacy every 3 months is now $75 per month. Each. In addition to the other stuff I have to pay out of pocket for, now there’s this.   And the premium – I’m paying for the privilege of not having good coverage.  I spent a LOT of time comparing Part D plans…. they all chopped the extended release of many meds (my main seizure med was cut back to the regular release unless I fork over another $75/month for that; that regular release works OK for me)- as well as muscle relaxants, nausea meds, clonazepam (even though it’s used for the dysautonomia, and adjunct to seizures- which is its original classification as an anticonvulsant- it’s a benzodiazepine, which are considered bad news for the usual Medicare population, so it’s not covered…. can’t depend on a doctor to know what his/her patient needs), and the inaccessible forms of insulin that would be huge problems with the ‘donut hole’ where coverage stops until another level of out of pocket costs is met.  So I get the stuff that has been around since T. Rexes roamed the earth (but thanks to Walmart, I have an option that I can get if I fiddle with my budget for other things- can’t NOT have insulin).  Sigh. Grumble. Arggghhhh.  😦    I worked 20+ years to give good care as an RN… and now,  I’m getting bottom of the barrel stuff.  But, at least I’m not eating cat food like some people resort to.  😮

I had to try the regular release propranolol, since $75 is HUGE to add into mandatory expenses.  And, it was a big failure.  Since the chemo for the leukemia back in 2010-2011 (19 months), the autonomic stuff has gotten considerably worse (not uncommon with chemo with people who do NOT have autonomic problems ).  It’s now making my thigh muscles shrink (adios strength that was pretty iffy to start with) along with the blood pressure, heart rate, fatigue, heat intolerance, etc., especially in the evening.  I was already taking an extra 20mg many evenings, when the facial flushing and tachycardia started, as I just watched TV- no trigger or physical stressors.   The regular release stuff had me sleeping up to 20 hours a day- waking up just long enough to take more meds, get something to drink, check my blood sugar, pee, and go back to bed.  That wasn’t going to work, so I had to fork over the $75, and add it to my monthly expenses list.  That means I pay about $700 per month for Medicare premiums, a Medicare supplement, out of pocket drugs (insulin, syringes- to keep me out of the ‘donut hole’ where there is no coverage), over the counter drugs,  Part D premium, dental premium, etc.   My rent isn’t much more.  That’s nuts.  BUT, I’m back on the ‘good’ propranolol (Inderal).  The good news is that I get enough meds to get free delivery for the out-of-pocket-cost meds. ! One less trip to the pharmacy.  That’s always a good thing.  Oh, did I mention that I’m now in perimenopause and have hot flashes?   They are definitely not the same as the normal heat intolerance.  For about 15-30 seconds, I feel like I have a bonfire inside of me.  Not good.

I made it through getting this month’s groceries, at the less convenient, but more options, grocery store.  I do have a friend who will pick up bottled water for me (city water here is like putting a straw in a swimming pool, there’s so much chlorine- and I actually have stalactites growing from my faucet, the water is that hard… I chip them off periodically; and my fridge isn’t big enough for a filter pitcher, and fresh food).  She’s great about dragging water over- but she also has a life, job, husband, and young kid.  My dad will help – but his idea of shopping is getting enough for 3 days.  I can’t function like that.  I have to get what I need, and be done with it.   I’m the one who deals with %95+ of my shopping… and unloading it from the car, putting it away, hating that I hurt for a day or two afterwards.  Fibromyalgia, degenerative disc disease, and arthritis don’t like shopping at all.

I do make use of Amazon and Schwan’s.   I think most folks know about Amazon, and they’ve started Amazon Prime Pantry.  It will require a $100/year fee, but I can get grocery store items in single units, at grocery store prices (decent ones), and as much as can fit in a box that is rated for 45 pounds will cost 6.99 per shipment of the whole box.  Plus there are perks with the regular Prime for non-grocery items. That is a good thing.  And there’s Schwan’s, that has frozen food that is actually good (the ice cream cones are addicting… I have to have very good blood sugars before I can indulge in one of those ) .  Many items are basically heat-and-eat.  Minimal prep (you can get raw proteins, but I rarely do).  The turkey and mashed potatoes, and sliced beef and mashed potatoes are really good…. they have great fruit and veggies, and also decent breads (I don’t use a lot of bread, so the smaller loaves or baguettes are great).  That has helped a lot.  My dad got me a 7 cu ft freezer for Christmas for my ice vest inserts and ‘back-up’ inserts- and it’s been way roomier than I expected, so I have room for a month’s worth of stuff, easily- and some bags of ice. It helps SO much to have stuff dropped off at the front door.  That is a huge help.   The dollar entrees (Michelina is the brand I get- both the lean and regular versions) are pretty good, great on the budget, and three minutes in the microwave equals a decent small meal (which I prefer).

So, now I’m home, showered, and getting ready to go to bed.   I had some nasty calf cramping when I got home, so took some magnesium and potassium along with a pain pill, and am seeing if that’s going to be enough before I go to bed, to not wake up having to step on my foot to get it to flatten, as it’s spasmed so hard into a ‘toe point’.   Also drinking some tonic water with powdered lime (True Lime)…. tastes great- and the quinine might help the cramping.  The fluids won’t hurt either.

It used to be so easy.  I’d lug stuff up to a third floor apartment at times (lived there for about 3 years- and only had 1 1/2 flights of stairs how the building was set up).  Thought nothing of it.   I was younger, and it was many years before the big D was diagnosed.   I never wondered if the ice vest was going to ‘hold’ (it actually draws heat away from me; I’m looking into some inserts that are actual ice packs for really warm situations). I didn’t know cooling vests existed…. or that people  had need of them.  I didn’t  wonder if I’d pass out, or be on the road home and have to pull over until a pre-syncopal episode passed.  Fortunately, I do have enough warning, and know what symptoms lead to what, for me.

I’m thankful I can still do what I do.  This will be the only time I’m away from home except for MD appointments this month.  There are no social outings.  I do want to go to a conservatory here that has amazing plants and flowers (camera op !!), but figure it will be heated- and that will require the ice vest, and rolling walker with the insulated bag for the back-up inserts.  I will have to wait until the fall now, for that to work.

I still think about doing things, and do what I can to stay busy at home (the reborn doll painting is helping…. here’s some examples of a doll I’ve done and sold- they start as blank vinyl…no color.  It’s my biggest activity now, on days when I can tolerate being in the chair.  I end up in pain, but I do love making something that (so far) three people have liked enough to buy 🙂   Totally off topic from shopping, but it helps the bummer days when I can do something creative- even if only 15 minutes at a time.  🙂   OK.  I’m rambling. Time to go to bed (it’s 7:30 a.m.).

Same one that is in the pink shorts and striped shirt.

Same one that is in the pink shorts and striped shirt.

Still  here... will be getting hand rooted hair (each individual hair inserted).

Still here… will be getting hand rooted hair (each individual hair inserted).

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"Caleb" kit 14" long, 2 pounds

“Caleb” kit
14″ long, 2 pounds

'Taite' kit 16 inches and about 3 pounds.

‘Taite’ kit
16 inches and about 3 pounds.  I redid her from one I bought…. I didn’t like how pale she was.

'Avery' sculpt 21 inches, and about 6 pounds

‘Avery’ sculpt
21 inches, and about 6 pounds.   She’s a thrift store rescue I got on eBay- and fixed up.

Scarlett kit by Cindy Musgrove 22 inches long 7 pounds 8 1/2 inches

Scarlett kit by Cindy Musgrove
22 inches long
7 pounds 8 1/2 inches