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

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

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

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

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

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

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

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

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

 

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Does It Ever End?

I’m sure the dysautonomics out there will totally ‘get’ this.   Even as an RN for 30 years (the last 11 on disability, but I keep my license active to deal with myself !), I’m constantly learning about things I never bothered with much before.  It all ‘worked’, so no need to pay attention to some stuff.  Like the low blood pressure issues.  I’ve pretty much lived by the motto that if it doesn’t cause symptoms, don’t focus on it.  Well, that’s not a good philosophy.    I found out that my blood pressure had been low enough for long enough to decrease blood flow through my kidneys, leaving abnormal renal function tests.   I’d had a few ‘foggy’ episodes that correlate with hypotension, but I’ve got dysautonomia !  I always have some vital sign parameter that is off kilter.   Anyway, some medication changes have helped, which is a huge relief.  Dialysis has always been something I would seriously have to consider if I did it or not… and if not, that means life would be short.  If I could do the nighttime dialysis at home, I’d do that.  But going out three days a week, every week, indefinitely…. uh, no.   Especially when it’s 20 below zero windchill.  Fortunately, the last set of tests were better- so a definite scare, but not a disaster.

For the last few months, I’ve also had horrific right thing burning pain at night.  I only lasted through the “without” contrast MRI (lying on my back ‘in the tube’ had me in tears…. I’ve joked during bone marrow biopsies.  The MRI pain was worse; I’ve had many MRIs in the past, and they are no big deal… I left this one in tears).  The burning comes and goes- so it’s not like it’s every night, which is good.  My right thigh is also visibly ‘shrinking’.  So, with the pain and atrophy, I’m scheduled for another EMG in a few weeks.  It scares me that I won’t be fully ambulatory for as long as I’d hoped for…  I’ve been walking more, the further out from chemo I get.  I hope it’s enough to keep me vertical and independent.

I’ve also been having some GI tests done because my GERD/reflux has been bad.   The endoscopy just showed chronic gastritis, so nothing that’s going to kill me.  That’s good 🙂   I’m postponing two tests at this point until the leg thing gets taken care of, since the gastric emptying test requires me to be on my back for FOUR HOURS.   Not likely to happen at this point.  Nausea is pretty much a routine symptom.   I’m not sure that swallowing the manometry thingie would work all that well.  I also need a break from some of this stuff.

In the middle of all of this, my dog needed to have a toe amputated.   It has been about a  5 week ordeal, with trying antibiotics in case the swelling was an infection, then the surgery and sutures in for two weeks.  Now, she’s getting back to normal, and will go for a much-needed haircut at a good salon this week. The toe issues started (maybe coincidence ) after going to a chain store groomer. They lied on the ‘report’ that the nails had been done… they had not.  I have little tolerance for lying.   Anyway, she’s going to be OK.

I haven’t written a lot lately.  I’m tired.

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.  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?  I’ve known and do know many women with breast cancer (including my mom, who died in 2003 after surviving multiple cancer sites for 17 years, dying from something unrelated). I understand that any cancer diagnosis is a nightmare (I’ve been there, with 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 longer than it was diagnosed.  It didn’t flatten me 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 tanks.  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 get a nice hot 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 thermostat must stay around or below 64 degrees, or I start to have symptoms.  Fifty degrees is much better if I’m outside.  I wear a light snap-front sweatshirt, left open,  when it’s in the 40s.  If I leave home to go into another building where I have no control over the thermostat, I have to wear 5 pounds of cooling vest inserts.  To stay conscious.  I’ll start to ‘burn up’ for no good reason (and this is NOT hot flashes- I’ve had those, and they are totally different).  Or I’ll get so tired, that doing anything is overwhelming.

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, spine, epilepsy, diabetes, yadda, yadda, yadda…), so when I’m walking I look a bit gimpy, but the dysautonomia is totally invisible if I’m not lit up like a red stop light from severe flushing when the dysautonomia spells kick in.  My thigh muscles have atrophied (probably from diabetes and chemo), which looks weird, and makes walking quite tiresome.  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 and sleep hard for hours.  Temperature dysregulation hadn’t shown up yet.  I was in Texas when this all started, and I did fairly well at first.  When it was first a ‘thing’, I was living in a house (with no central AC- just room units for at night) with a coworker to share expenses (perfect situation; we had opposite schedules, so it was basically like living alone).  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 medical issue.  One  night I couldn’t get up off the floor like usual, and I agreed that she could call 911.  That started the whole testing process.

I was lucky that I had a neurologist 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 continued to have issues with work, but eventually meds were sorted out, 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 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 employee :p – but I didn’t want to stop working; being a nurse is who I AM).  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’m back in Illinois 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 10-12 times in a month or so at another nursing home (office job), and it was clear that I wasn’t able to keep working. 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 new neurologist on my insurance plan at the hospital, who seemed clueless.  Once on disability (and Medicare two years after that), 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 3-4 shots of insulin) and total control over my thermostat, I’m able to sit up for several hours, but  I have to get up every few minutes to avoid any ‘pooling’ of blood in my legs, or I’ll enter the ‘pre-syncope zone’ when I stand up.

Now, my ‘normal’ consists of having the air conditioner on when it’s 30 degrees Fahrenheit 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 about 2-3 times a month– monthly grocery shopping, a doctor’s appointment here and there, and maybe a short trip to the grocery store about half-way between disability checks, for milk and/or bread.  Everything has to be ‘paced’.  If I do laundry, I can’t unload the dishwasher.  If I take trash to the dumpster, 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 superficially 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 $325 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 out of pocket for insulin, that adds about $125/month (I’ll get into insulin in another post).  SO if all goes well, $635/month goes out the door for medical expenses.   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 will make my last payment on what they didn’t write off this month.  Four and a  half years later.  That’s not included in the $635.

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.  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?).  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.  But heat and pain are my main triggers.  I’m in constant, chronic pain- that’s harder to control than the temperature.

Some people have POTS (postural orthostatic tachycardic syndrome), which causes symptoms if someone is standing. At all.   Their heart rate goes out of control simply by being vertical. Lots of folks with that need wheelchairs for safety.  There is neurocardiogenic syncope- which is actually a simple faint, until it’s a pattern.  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, and other external measures to make it survivable.  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.  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.

See the following for more information:

www.ndrf.org 

www.dysautonomiainternational.org

www.dinet.org

 

 

 

 

Sorting Through The Symptoms…

 I’m whining.  *** Warning *** I’m not chipper and smiley right now…

Read at your own risk 😉

This has been a weird few weeks.  Actually, things started to get worse with the dysautonomia during chemo for leukemia, which was fairly expected, but it’s getting worse.  Chemo messes with autonomic dysfunction, especially with diabetics, or those with previously diagnosed dysautonomia.  Add in some menopause, and changes in some medications/insulin- and the party just keeps getting better.  I’m tired of trying to figure out what is from what (fibromyalgia/chronic pain, chronic migraines, chronic headaches, reactions to foods, etc).

This past weekend (a few days after two epidural injections- one in my thoracic spine, and one in the lumbar spine), I had some horrific nights with severe leg spasms and cramping. Normally, I don’t have any type of reaction to the steroid injections, other than a day or so of higher than usual blood sugars, so I didn’t really think that was the cause.   I’ve had these  spasms before, but usually getting up once and forcing my feet into a ‘flat’ position, then walking around for a few minutes generally helps.  Friday night was like that.  Saturday night was a nightmare.  I was up every 45-60 minutes, with spasms that actually made the calf muscle (the ‘drumstick’ one) have an indentation in it (like a shallow dish) until I could get the muscle relaxed.  These types of muscle spasms are incredibly painful, and I find myself doing  sort of breathing that reminds me of someone giving birth on TV. Or acting like it.

I finally gave in and called my pain doc early Sunday morning – around 7:30 a.m.  He was very prompt in calling back, and heard me out when I  asked about serotonin syndrome- which he didn’t think was likely. That was good news (no need to go to the ER).   He did  tell me to not take the tramadol anymore, just in case.  I’ve been on methadone for pain for several months now, and had noticed that it wasn’t working as well with that original dose (which spooks me after watching people detox from methadone when I worked drug/alcohol detox.  It’s THE worst type of detox that I’ve ever seen -and I’ve seen lots of alcoholics, cocaine/speed addicts, heroin/opiate addicts, and benzodiazepine addicts- they have a ‘bonus’ 10-15 days after they stop taking the benzos, with another round of acute symptoms, etc).  I’ve been chicken about even taking methadone- but it’s a legit pain med, not expensive- AND, when used as prescribed, it’s safe. I use it as prescribed, and it still gives me the creeps.  I’m lucky to have found a pain doc who doesn’t just write prescriptions right and left.  There are ‘rules’ for being one of his patients.  I respect that.  At any rate, he told me to take a bit more methadone then and another muscle relaxant, and try to get some rest.   I did as I was told, and did get some sleep.  During the worst part of the spasms, it feels like the muscle is being torn from the bone- that has stopped, thank God.   Today has been one of fatigue- but no more spasms.

Trying to figure out what is going on when I start having symptoms can be tricky.  I had e-mailed my primary doc about the symptoms on Friday evening, and she wants me to have some lab work done, which is a good thing.  As a diabetic, I’m a little on the paranoid side about my kidneys.  The chemo was hard on my blood sugars, and I’ve got them MUCH better- but still some wacky ones here and there.  I’ve had a lot of peripheral and autonomic neuropathy symptoms- so that’s sort of my ‘default’ assumption when something is weird.  I get flushed, my skin is hot- but I can feel cold (strange for me), I get blotchy areas on my chest, and in general don’t look OK….

Dysautonomia episode w/ chest blotching, severe flushing, lightheadedness, and other symptoms that come and go with various intensities.

Dysautonomia episode w/ chest blotching, severe flushing, lightheadedness, and other symptoms that come and go with various intensities.

It’s hard to know if muscle cramps could be from potassium, sodium, calcium, or magnesium deficiencies (and those can get really bad- as in don’t make plans for next weekend, since you could be six-foot under by then).  Bulimics are very prone to those- and electrolyte deficiencies are big in sudden deaths from eating disordered patients.  But I’m not in that category any longer, thank God.  The peripheral neuropathy (likely diabetes related) in my legs doesn’t help.  My thighs have deteriorated, and actually shrunk (posterior thighs)- so they tend to hurt faster than before, after doing anything.

My blood pressure has been crazy again (directly from dysautonomia changes), and I’m going to have to start a different form of propranolol (Inderal), as every Medicare part D (drug plan) formulary I checked has cut out the extended release from the generic list.  It’s been generic for a LONG time- but now it’s priced in the ‘preferred BRAND’ category.  I have too many meds to spend a $42 co-pay for 90 days for one med (well, actually two- they cut the extended release seizure meds as well- but I do OK on the regular release form of that).  I already have to pay out of pocket for insulin and syringes, since getting them would push me into the ‘coverage gap’ (donut hole) requiring ALL meds to be out of pocket- which is a map for going straight to non-compliance.  And a non-compliant patient is loathed by medical professionals.  Doesn’t matter WHY someone doesn’t take their meds. There are a LOT of us out here who have to juggle medical expenses to be sure there are funds for the entire year.   Medicare is not free.   Anyway, the symptoms are acting weird, and some days, it’s hard to get much of anything done.  BUT, I still have so much to be thankful for.  I can still think, and put together what I think is going on so I can tell my docs the information they need to know.

Menopause is a special little treat that makes the dysautonomia worse. I have had a few hot flashes- and thank GOD that they aren’t the same as my general heat intolerance.  They are brief, and feel like fire from inside… I adjust the air conditioner (had it on when it was 17 degrees Fahrenheit this winter), and ride it out.  I hadn’t expected the ‘morning sickness’ from the hormonal mayhem, so Phenergan and Zofran have become good friends.

Oh well, done venting 😉   It’s been unpleasant.  But, I’m still living indoors, and have the blog and other online interactions (though the public comments on most sites aren’t worth the nastiness).   I’ll get the blood test done this week.  Onward !

UPDATE:  The Propranolol LA 120mg (generic for many, many years) is actually $77 per MONTH out of pocket.  And I have to have it.  I tried the regular release and all I did was sleep, get up to take meds, and sleep some more.  My life is limited, but being awake is one of the perks I do look forward to.

What NOT To Say To Someone Who Is Disabled or Dealing With a Serious Illness

I think most people are trying to be helpful or supportive when they make comments to someone about their health and/or treatments, but there are some things that  those who have not experienced the situation should just stay quiet about.  Some things are just not helpful, and some are ‘enough’ to ruin a relationship.  These are some of my ‘just don’t say it’ things:

1.  “You look OK.”… to me, that means “there must not be anything wrong with her- she’s just a wimp and making a big deal out of nothing”.  You spend a day in my body, and get back to me.  Diabetes, seizures, neuropathy, chronic pain, migraines, degenerative joint and disc disease, and a multitude of other disorders have no outward symptoms that scream out their identity.  There is a fine line between “You look OK.” and “You look good”.  When “You look good” is said following a long fight with an illness or its treatments, and someone is ‘coming back’ to their ‘usual’ self, I never found that offensive.  It’s a totally different situation.  But “You look OK” = “buck up and get with the program, you sloth.”   Trust me.  I’ve tried the best I can, and managed to get 8 years more to work with the initial medications (once the right ones were figured out). Going on disability was NOT my idea.  My employer at the time told me they couldn’t have me around (go figure, I was passing out all the time).

2. “Your doctors sound like idiots.” (opinion usually based on the online ‘research’ that is mostly from sites that are trying to sell a product– and have an 800 number at the bottom of the page, and/or ‘proven’ by someone with a plumbing or agriculture background).   Many times, this is ‘pushing’ some sort of Eastern or alternative medicine instead of the treatments that have been researched and gone through trials, with proven success rates that are better than not having that particular medication or treatment for that specific problem.  I have no issue with alternative medications, and use homeopathic headache medication as well as herbs and supplements for headache prevention/ minimization … but I have run those past my doctors before taking them. I also use Western medications for the same problem.  While I was on chemo, I took NOTHING that my oncologist didn’t approve.  There were very specific things I couldn’t have because of the type of chemo I was on.  There was  a massage/aromatherapy person who came by every day I was in the hospital, so some alternative things were offered.  I’ve been offered various products/ideas to replace medications by well-meaning friends.  Here’s the thing- it’s my body.  I trust who I trust, and it’s not someone online I’ve never met.  It’s not someone who has never seen me or my test results.  It’s not someone who has no interest in me if I don’t buy their products. When I have decided to switch doctors, it was MY decision based on how I felt about the care I was getting.  And, I never trust anybody who has credit card acceptance comments and images at the bottom of their ‘professional’ page.

I must admit, I have been annoyed by doctors I’ve heard about and gone off the rails with my responses- but once discussing the situation with the person- and I more fully understood what was going on, all was well- and bottom line, I respected their gut feeling about what was going on.  🙂 But, nobody needs to hear that their doctors are idiots… they’re depending on those doctors to be sure they’re still going to have a normal lifespan.

3.  “You should/shouldn’t eat X, Y, or Z.”  During chemo, it could have been lethal to eat fresh fruits and vegetables that someone else didn’t peel, because of the microbes that can still be on them even after washing. Because of the immune system ‘attacks’ from chemo (and in the case of the leukemia I had, the cancer itself long before the chemo kicked in), there are times when an otherwise harmless ‘bug’ could cause a fatal infection. Produce is covered in ‘normal’ bacteria, fungi, spores, and viruses- a normal immune system handles them with no problem (they can’t all be washed off).   And when my absolute neutrophil count (ANC) was below a specific number, I couldn’t have any fresh unpeeled produce around (and wasn’t given permission to peel them myself even with a mask and gloves– the risk was just too great).  I’d already had a couple of nasty infections from otherwise puny things that caused delays in chemo and/or the need for extremely potent IV antibiotics for 5 straight weeks, or antivirals for 3 weeks (BAD ear/neck infection,  and shingles during the first year).  Normally, fresh produce is felt to help prevent certain cancers… but with chemo and the effects on the immune system, it is critical to not violate the food rules !  It’s all temporary.  Better to go with what is likely not to cause more problems !  When it’s not potentially lethal, then of course- fresh foods are the way to go 🙂  There was also a very strict ‘don’t eat’ on things with a lot of Vitamin A, since one of my primary chemo medications (ATRA) was essentially a form of Vitamin A in mega form.  Vitamin A is fat soluble, and can become toxic in the body since it builds up (so can E, D, and K).   I had very specific instructions about not eating Vitamin A ‘heavy’ foods (carrots were a particular ‘loss’).

4. “Oh, disability must be just like an early retirement!”  Seriously?  People think this is some sort of ‘perk’ ?  My life was taken from me in terms of everything I knew to be my normal life.  I still grieve the loss of being a  working RN.  I’m having to make 2/3 of my income ‘work’.  I can’t leave home without medical equipment.  I have 32 pills to take on a ‘good day’ when I don’t have to take anything for an ‘as needed’ situation.  I’ve had to deal with Medicaid (a joke- they don’t help much at all, and it’s humiliating to need it), Medicare (very expensive to be on), the Part D prescription plan (which limits my access to the best insulins due to cost), the legal system, with bankruptcy prior to Medicare (extremely shameful to have to do that), etc.  It’s been hell.  Yes, I have many things to be thankful for- but this is no picnic.  I’d much rather be doing 40 hours a week and being useful. Now, it hurts to make a sandwich or empty the dishwasher.

5.  “Well, when you finally feel like it, we can ______.”  Don’t hold your breath, sister !   “Chronic” and “disability” don’t mean this will run its course, and I’ll be fine.  How I wish !   “Degenerative” means I’m going to decline.  I’m the one who should be having more trouble accepting that- why is it that others just can’t grasp the concept that some things can’t be fixed?   Don’t make it sound like it’s somehow up to me for this to all go away.  Don’t make it sound like I’m just not trying hard enough. Don’t make it feel like this is my CHOICE !  When someone says ‘finally’ it implies that there’s something voluntary about all of this.  If there were, I’d be in a way different place, working, and living a ‘normal’ life.

I’m doing the best I can.  If I were physically able to do more than I can, I’d be doing it.  I feel fortunate to be able to take out the trash and not need 2 hours to recover.  I’m always glad when I get home from the grocery store, and didn’t have to stop unloading the car because I felt like I was going to pass out.   I’m adjusting the best way I know how, which is to try and be thankful for what I have left that I enjoy, and am glad that no matter what happens to me, I still have God.  Some people don’t understand that.  For me, He’s a lifeline. ❤

Redefining Normal

As I continue to struggle with some of the medical issues I’ve got, I’m trying to figure out how to maintain my independence, safety, and general medical stability.  Sometimes that’s easier said than done, and on days when I don’t feel as bad, I forget to pay attention to what has become my reality, and I get into trouble.  I know my primary triggers for the dysautonomia are pain and heat (my perception of heat- not what others feel as warm).  Dysautonomia, diabetes (5 shots/day), epilepsy, chronic pain, fibromyalgia, arthritis, bone spurs, degenerative discs (neck, thoracic spine, and lower spine), scars in my lungs from massive pulmonary emboli, one replaced knee, one messed up knee, etc), fluid retention…..  There are a lot of things to have to adjust things for, and sometimes it can be overwhelming.

I have to avoid being overheated away from home at all costs, since I can easily get to the point of passing out.  This involves keeping my body cool enough on the outside (using my ice vest when needed), and avoiding ‘internal’ heat through foods that are too warm.  Any activity that increases body heat or heart rate is no good. So my activity tolerance is pretty dismal.  In the summer, this involves shopping after the sun is down, and not leaving home any more than I absolutely have to.  Ironically, the winter is almost worse since everybody has their heater on, and I don’t tolerate artificial heat well at all. I keep my thermostat at home set around 60-64 degrees, or I get into trouble even being at home.  It’s going to be in the 30s tonight, and I’ve got the air conditioner on… no joke !

Cool and cold foods are much less likely to cause my body to overheat (duh), so I avoid warm and hot foods unless I’ve got the thermostat ‘perfect’, and I’m not already having trouble.  I never drink hot drinks. I have never liked coffee, but don’t drink hot tea, and if I do drink hot cocoa, it has to cool off considerably, which sort of defeats the purpose.  The process of cooking (or even just ‘assembling’) meals is very difficult. Repetitive motion of prepping food is extremely painful, and if it involves using the oven or stove to cook it, I have to be very careful that the thermostat is set low enough to help compensate.  Even stuff reheated in the microwave can be a problem.

Pain is something that is nearly impossible to avoid.  If I’m awake, I’m in pain.  Any repetitive motion sends my muscles into spasms, which can get to the point of causing vasovagal reactions.  I feel like a wuss.  There are so many things I want to do, but it’s just not safe. I need to see my pain doc again and talk about the next step in pain management. The sporadic injections into my spine aren’t helping at all, and the pain medications I have aren’t really that strong, and don’t work that well.  I do use more NSAIDs (ibuprofen, naproxen sodium) now that I’m not on blood thinners, but they don’t do a lot for the deep pain.  I’ve resisted taking anything stronger that the doc offered before. He understands that I’ve worked in the addiction rehab business (as an RN), and have seen some horror stories with detox.  I know that pain medications used as prescribed are very safe. I’m just a chicken…but I have to get over that at some point so I can function at home as independently as possible.  I’m losing some of that.  It’s a little scary to be just under 50 years old, and looking at needing help to get basic tasks done.

I already have mail order for as many things as is practical and available.  It helps a lot to have it just dropped off at my door.  My dad takes the trash to the dumpster sometimes; I still try to do that when I can, so I’m not doing ‘nothing’.  Today, that was very painful- but I got it done.  A childhood friend of mine and I have reconnected, and she has helped with many things- and will help with more if I just ask her…. it’s hard to accept help.  I’m supposed to be the one who helps others. I moved back here to help my dad with my mom, but she died.  I worked as an RN for 20 years, so I could help people.  I don’t want to need help.

I feel like I’m just not trying hard enough, but I’m starting to realize that my body is broken, can’t be fixed, and I have to do whatever I have to do just to ‘maintain’ things at home.  Leaving home isn’t really something I can increase… it takes quite a bit of equipment to be away from home for more than 2-3 hours.  I have to get home before the ice vest inserts I’m wearing begin to thaw too much.  As a twenty-something young nurse, I sure never saw this coming.

I’m thankful for a lot- I have a garage attached to my apartment and a washer and dryer in my apartment.  That helps a lot.  I have a great new puppy, who wears me out, but has  amazing positive energy.  I know things could be  a lot worse; I worked in some rough areas of nursing and saw some pretty tragic situations.  I’m still living at home, alone (which I prefer), and have figured out how to get stuff done, even if it’s not like I used to do things.  I believe that all things happen for some reason.  I have strong faith in God, and I trust that He can use this for something good.  Yet, there are days when it’s hard living like this. My world is pretty much my apartment and my dog.  I still have my dad around, and we’re in regular phone contact, and usually see each other weekly.  I’ve got computer access to former coworkers, and friends.   I’m still in remission from leukemia and I can still keep my mind busy with various things. So things could be worse. ‘Normal’ has changed.  But I think that as people go through life, even if they’re relatively intact, lives change.

At least I’m still around, and I have to make the best of it 🙂

 

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 !