Chronic Pain in Its Various Forms…and Dysautonomia

While I’ve lost count of the exact number of days, this current ‘spell’ of severe headaches has gone on for at least 4-5 weeks, with maybe five or six days of no headaches at all in any given day.  Of course, it isn’t ‘just’ a headache.  I get the dreaded nausea along with it.   There have been times during most days when the pain lessens, but most of the time it’s there.  Today has been pretty bad- I’m taking a chance by blogging, since the scrolling on a page can make things worse, but I have to ‘talk’ to someone.

I e-mailed my primary doc about changing the nausea meds. After several years on Compazine, it seems it’s lost its touch. The leftover Zofran (from chemotherapy for leukemia) doesn’t do much anymore, either.  She called in some Phenergan for me.  The pharmacy didn’t have the full 90-day supply available, but my dad brought me the 12 pills they had. They will call when the rest of it is available.  I was just so thankful to get anything that may offer a bit of relief from something.

I’ve been trying various ‘schedules’ of different pain meds, from different over-the-counter pain killers (Excedrin, Aleve) to a weaker  prescription med (tramadol) to a stronger prescription med (Norco 10/325).  None of it is working.   I even did a ‘bad’ thing today before taking any other prescription meds (so no risk of interactions) and took some methadone that I have leftover from a while back. It isn’t working, and I’m not willing to take another dose before talking to my pain management doctor.  He’s a board certified pain management doc, and not a ‘doctor feel-good’.  He has ‘rules’, which I respect.  I don’t want a doc who calls things in over the phone without assessing me.  I don’t want the drugs per se. I want less pain.  I don’t expect to ever be pain free, but I would like a lesser degree of pain.

Pain-free isn’t a realistic expectation with degenerative disc disease, degenerative joint disease, fibromyalgia, bulging discs (neck),  diabetic nerve pain,  and chronic headaches.  I’m just looking for a degree of relief that keeps me able to take care of the basic chores around home, and keeps me able to do some ‘minimal’  fun activities, such as watching a movie on TV, playing some online games, playing with my puppy, or other such forms of distraction and entertainment.  The last time I talked to my pain doc, we talked about the nature of degenerative disorders… they don’t get better by definition.  The fibromyalgia and headaches are just ‘bonus’ disorders 😦

I have to be careful about pain in regards to the dysautonomia, as well.  Pain is one of my major ‘triggers’ for heart rate and blood pressure changes that can land me on the floor, passed out.  Those who have severe menstrual cramps that cause lightheadedness and feeling ‘faint’ go through something that is essentially a result of the same thing- vasovagal nerve stimulation.  Vasovagal syncope (fainting) is fairly common. But any sort of fainting is a risk for injury.  And injury is a risk for further mobility limitations. I can’t risk that.  I want to continue to live on my own, and I can’t afford help (nor do I want someone hovering over me). Side effects of many pain meds also increase the risk of lowered blood pressure.  I have to keep that in mind with any new medication, as the interactions with the other meds I take can be risky.  I ‘ground’ myself to home when I am put on any new meds, just to be sure I’m not caught off guard at the grocery store or pharmacy (about the only places I go) with some drop in blood pressure from a new med not playing nicely with something else I’m on.

I’m going to have to go see my pain management doctor soon, to discuss a different plan.  I’ve been on stronger meds before, but have asked to go back on weaker meds, knowing that this is a lifelong thing, and I need options for the future.  For the degenerative disorders, spine surgery and another knee replacement are likely down the line, as well as hip replacements. I want to postpone those as long as possible. 😮  There is the possibility of having some sort of pain-nerve impulse thingie implanted (I need to read more about that).  I’m not all that gung ho about ‘stuff’ being put into my body that involves hardware.  I’m hoping that the weight loss with Nutrisystem will also help my knees and hips… my spine is a wreck from neck to bum, so weight loss will be good, but not a ‘fix’.

Methadone scares me. And, today, it’s not working.  But, it might be something I have to try more regularly to get a final ‘verdict’ as far as its real efficacy.  I’m also very reluctant to take methadone after working drug/alcohol rehab, and seeing how it is THE worst in terms of withdrawal. Those patients made heroin detox look like a cakewalk – and heroin addicts had it bad enough.  I understand that I wouldn’t be taking it for illegal drug replacement, and that chronic pain patients who take medications as prescribed are highly unlikely to develop true addiction (different than physical tolerance or physical dependence).  Only %3-5 of patients who take pain medications as prescribed go on to become addicted (which includes the strong psychological components of the ‘high’, cravings, etc). Ninety-five to ninety-seven percent of us don’t become addicted.  The ‘tolerance’ and dependence may require dosage adjustments.  That’s not because of addiction, but the physical acclimation of the body to the medication.  It gets used to the drug being there, and requires dosage changes to continue to provide pain relief.  I don’t like that, but I understand it.

I’ve also been on the fentanyl patch.  I don’t remember it being all that great at the dose I was on, but it might be something else that is considered.  The nice thing about ‘the patch’ was a continuous release of medication, so no ups and downs depending on me taking another dose.  It was also not hard to stop taking.  That has huge ‘benefit’ written all over it.  When I wanted to go off of it, I was weaned down to lower dose patches, and then given pain pills to taper off of the narcotics altogether- no withdrawal symptoms, and it didn’t take that long.

For ‘breakthrough pain’ on either methadone or fentanyl (or the current Norco), I’ve taken tramadol.  It’s not as likely to interact with the stronger narcotics or create an increased risk for respiratory depression (which is essentially what causes death in drug overdoses- accidental or otherwise).  It’s not a great pain killer, but it can take the edge off of the joint, muscle, and head pain that is getting worse.  Things like ibuprofen and naproxen sodium have limited use with the headaches and fibromyalgia.  They do help with the joint and disc disease to some degree, with no neurological or cardiovascular effects.  Worth having around  and taking !

I’ve tried physical therapy, chiropracters, Imitrex (which helped somewhat), heat (but that triggers the dysautonomia), cold, TENS unit, various pillows, and stuff to unclog my sinuses.  If I thought chewing on the siding of my house would help, I’d be out there with the woodpeckers.  While I’m not losing time off of work (been disabled since 2004), this pain of various sorts does change what I am able to do here AT home.  Things like laundry, vacuuming, other cleaning, etc are put on hold quite often.  If I’m having one of the ‘bad’ days, there’s no way I’ll get in a car and go to the grocery store, pharmacy, or MD appointments (the only places I go).

All I know is that the past several weeks (that have come in waves for years) are getting really old. I’m going to have to stop being stubborn about the stronger meds if I want any quality of life between ‘waves’.  I’m already limited. I want to have as much ability to function as possible, and this level and duration of pain isn’t OK.  My pain doc has been very good about letting me let him know when I need something stronger, since I’ve been so hard-headed about using the stuff.  He knows when I say I’ve had ‘enough’ that  I’m not looking for drugs- I want to not hurt (as much).  I need to make the appointment, and go see him (he does NO prescribing/refills over the phone past the ones on any written prescription).  He does NO dosage or medication changes over the phone.  So, I have to drag my butt in there.  He’ll probably do some sort of injection (spine, jaw, neck, occipital nerve blocks, facet injections). The ones in my lower spine seem to help the most- I could tell that my legs hurt less when I’m at the store after I got the last shot.  I may ask for my left knee to get zapped.

Now to just find a day to go and see him when I feel well enough to see a doctor.  But even though it’s been pretty unpleasant lately, I realize that I have so much to be thankful for.  I know that God hasn’t deserted me, and that I can get a lot of comfort in knowing that whenever I get to eternity, I’ll get a new body without pain.  That helps. 🙂

Update:   After being on CPAP for more than a year, the daily headaches are pretty much gone !  They were caused by hypoxia from not breathing at night.  The rest of the stuff is still a bummer, and I’m off to see my regular MD today (10-19-2016) to get medical clearance for massages and a chiropractor.

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Professional Pain Patients….When They Are ‘Family’

I just read some posts from a cousin I have no contact with because of her toxic and totally egocentric ‘interaction’ with people.  The posts were on a support and encouragement page for another (mutual) cousin who has recently been diagnosed with colon cancer.  She has had several months of pain and increasing symptoms that she had surgery for last week, and is getting ready for radiation and chemo.  The pain she has had has been to the point of not being able to eat, walk, or interact with anybody other than doctors, nurses, hospital staff, and close family and very close friends.  Everything else has been pretty much via this support page (which has been great!).  This last week I have been e-mailing her, as she’s had questions about chemo that she knows I’ve been through personally, though for a different type of cancer.

The toxic cousin has been telling the cousin who is  in immobilizing pain to do some distraction exercises and activities, or  other things that are fine for chronic pain.  There is no place for comparing what the sick cousin has to the chronic pain from the other one.   ‘Toxic’ has no clue what someone else is going through – it’s all through her eyes.  Sometimes, that is good- but there is never a ‘conversation’ that doesn’t completely revolve around her medical issues (unless she’s calling someone – me – names based on no knowledge of me as an adult).  I think people, in general, relate things to their frame of reference- but they still know how to focus on the one with the serious current issues, and not always make it about them.   But if ‘victim’ could focus on a marathon of TV shows, it’s not taking much to help her pain.  Everybody has different experiences with pain- that’s a given.  I just know that if I’m having that bad of a day, I’m not able to follow the story lines in consecutive TV shows.

I have to walk a fine line, because I have some similar diagnoses that ‘toxic’ cousin has. I am also in chronic pain. I ‘get it’.   I try to use what I know about those things to help folks (as well as my nursing background).  It’s not a competition !  But I have taken care of too many people as an RN, and read enough continuing education materials about the types of pain to know that ‘toxic’ is completely out of her league when it comes to cancer pain- but since HER pain is all she knows, she seems to think that her little distraction tactics should do the trick. Try a hedgehog with lava hot quills in her butt, and then maybe she’d get a little clue.  The cousin dealing with cancer has been going through hell.

I think what makes me the most angry is that ‘toxic’ can’t get through a post without it being in some way about HER !  😮  The site where this is all going on is supposed to help and encourage the one going through SO much.  SHE is the one who needs the support.  I try to use personal experience to help answer questions, and give some sort of emotional relief -that it’s possible to get through what’s going on.  If what I say about myself has no purpose in helping the other person when offering support, I don’t think it’s appropriate.  JMHO.

‘Toxic’ has been through some lousy stuff- there is no question about that.  I don’t doubt that she has significant pain. We have at least one disorder in common, and it is very painful- but it’s chronic pain.  It’s what we live with every day- it’s not causing abrupt and intense changes in our current level of functioning.  Chronic pain is our ‘normal’.   That’s way different than what someone with a growing tumor is feeling, in a very sensitive area- who can’t move without it being aggravated.  The pain management people are doing much more now for the cousin with cancer, so it looks like the one actually going through all of this will get some relief- at least enough to be able to get through the next phases of treatment.

I just needed to vent.  I understand when people don’t acknowledge pain, because ‘you look fine’.  But comparing what is a daily part of life of someone with chronic pain  to the sudden bombardment of life-altering changes  for someone who was just diagnosed with a very tricky cancer angered me.  Chronic pain is hard.  It never goes away, at least long enough to matter- but it’s not going to cause physical damage to me.  My cousin who is going through this really, REALLY hard time needs support- not someone who is taking things and making it about her, and somewhat trivializing the cancer hell. Maybe it’s how she tries to relate to people, I don’t know.  It just annoys the snot out of me.  She has a knack for that.  But I do wish her well. And I wish she’d find a new way to interact with people.  It takes a deliberate action to look for the good.  Being a ‘victim’ is quite unimpressive. Survivors are the heroes I respect.  It’s all a matter of perspective. And choice.

In the last 10 years, I’ve never heard of anything positive in ‘toxic”s life. Not once.  I had reached out to her 10 years ago (several times via e-mail), knowing that she had some of the same issues I deal with, in hopes of offering some support.  I never heard from her until she sent me some snarky political information YEARS later, though she hadn’t had any contact with me  for more than 20 years… like she knew anything about me.  And she was completely ‘talking down’ to me and resorted to nasty name calling… she’s 2-3 years older than I am- certainly no ‘wise elder’.  It was like an 8 year old schoolyard brat.  She’s sick in more ways than she admits, I fear.

And again, I do wish her the best.   If I become like her, someone just shoot me. 😮

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 !!

 

In Memory of Madeline Spenrath, R.N.

I just found out on Thursday, April 25, 2013 that one of my favorite nursing supervisors had died.  I’d talked to her several times over the last few years when we were both going through various cancer diagnoses, but hadn’t talked to her in a while.  She had been through breast cancer, and thought she was doing well when she discovered she had bone cancer in her thigh and had to have an amputation at the hip (around 2010).  She went through that with a great deal of grace and dignity.  I’m told that she had recurrence of cancer in her lung and spine.  I can’t imagine what that was like for her. Getting used to her leg prosthesis and wheel chair were hard enough; the leg prosthesis drove her nuts.  She was incredibly independent, and needing help didn’t make her smile.  I can just hear her saying “when I go, just toss me out into the pasture with the horses”.  Down to earth, no frills, and knew SO much about nursing.  I will always have a great deal of respect for her.

Madeline  was a no- nonsense supervisor, but also had a heart of gold. I first met her in in  1991, and while there are many people who knew her much better than I did, she left a definite impact on me, for the better.  I worked at Sid Peterson Memorial Hospital in Kerrville, TX on and off for over 10 years.  Madeline had been there much, much longer, and was a ‘staple’ supervisor on the night shift.   She had her own way of getting report on every patient in the hospital for the next shift’s supervisor (or ‘Number 9’, as they were called at Sid Pete, at least at that time). Some supervisors wanted report from each nurse- Madeline wanted the charge nurse to give the run-down.  SO, I talked to her a lot.  She wanted ‘just the facts’, but also had a really good sense of humor, and if a patient needed something, and she could do it, she’d give it her all.

Madeline could get IVs in just about anybody.  Generally, if someone needed an IV started or restarted, the direct care nurse or charge nurses would get them in.  If that didn’t work- or if someone’s veins were just too puny to go poking around when it didn’t make sense, the charge nurses would call Madeline (or whoever was the supervisor that night).  Madeline could get an IV in the butt vein of a grasshopper. In motion.  She was just that experienced and had all of the tricks down pat.

Madeline used to have incredible BBQs for the night shift staff. They were annual and legendary.  I got to go to one in 1991. She had them in the summer, and would have one of her horses saddled up for anybody who wanted to go for a ride around the farm in Comfort.  I still have a photo of me on one of her palomino horses, in my tennis shoes and t-shirt…. I looked SO not ‘Texas’.  But it was fun 🙂

When Coca-Cola changed their formula back in the 80s, Madeline rode her horse to the town store, and brought home as much of the original formula as she could secure to that horse!  I never heard that she ever smoked or had other vices- but don’t mess with her classic Coke !! 🙂

One night, Madeline called me about a predicament with staffing on the telemetry floor.  Uh oh.  Madeline could get me to agree to a lot of things that I’d normally freak out about (like charging two floors on nights when there were simply no other nurses to cover one of the floors- they were back to back units – 4A and 4B- so I just ran between the two that night; one was my usual floor, and I knew the other staff well enough).  The regular charge nurse on the telly floor had some emergent health situation happen, and they really needed a charge nurse.  I really didn’t read telemetry strips !  I knew ‘OK, looks survivable’ and ‘uh oh’. She reassured me that the monitor techs knew the rhythms and there were standing medication orders that the nurses knew about- I’d be fine. They just needed an RN body to check off orders and be physically present.  Scared the snot out of me, but I went.  Everybody survived the shift 🙂

She hated taking bodies to the morgue in the basement of the old hospital. Madeline would do anything she could for anybody in the hospital, but once she was notified of a death, she’d show up like the wind and drop off the keys to the morgue.  She wasn’t a fearful person but that morgue gave her the willies. I have to admit, it was creepy- it was a ‘one occupant’ room, with shelves along all available wall space that had the specimens from various surgeries… there were gallbladders, appendixes, lungs, and just about anything that could be removed from a body bobbing along in preservative liquid in semi-opaque plastic buckets. You could still tell they were guts.  Named, dated, and labelled.  The first time I went down there, I was very distraught.  I was still shaking the next day, and actually had to leave when I got to work (major chicken-poo reaction). Madeline was on that night, and while she wasn’t amused at me falling apart, she never made me feel ashamed of my reaction. Once I knew what I’d be seeing, I was able to go if I had to help take a body there.

When I was diagnosed with diabetes in 1995, I had just started working at SPMH again (and was diagnosed with diabetes through general pre-employment screenings)… one night I said I felt a little funny, and Madeline went bounding off to the cafeteria to get me a pimento cheese sandwich, in case my blood sugar was getting too low; I was still very early on in being treated, and could sometimes have symptoms even when numbers were decent- my body was just used to having much higher blood sugars.  Being diabetic wasn’t seen as a liability, and I had a great deal of support from Madeline and others there at SPMH.

When Madeline brought a meal for a patient admitted later in the evening or night, she’d bring back  a tray full of food fit for a football player…. her theory- never trust a skinny chef, and make sure they get enough food if they’re hungry.  Never knew when someone sick would either lose their appetite, or have the need for some energy stores.

Madeline loved her horses and cats.  She retired from nursing several years ago, and while she was dealing with a lot of health issues, she always talked about how she was doing with taking care of the horses and cats on her farm. She was deeply saddened when that palomino died… it was one of her favorite horses.  She also volunteered at the local VA hospital, and loved going out there.  She had passion about many things, and when Madeline took to something, she did it with a great deal of satisfaction- and she was good at it.

Madeline was a ‘giver’. I never heard her ask for anything for herself, even when she was going through so many life changes with her health.  When she’d call me, she’d sound upbeat- and she had so many reasons to be bummed.  She’d send funny e-mails, and periodic notes- and never complained.

When Madeline would hear of something just not sounding fair in regards to how someone was being treated after some management changes at the hospital, she felt so badly for them.  Madeline believed in people being accountable- but she also knew that sometimes people got a really raw deal… and it hurt her when they hurt.  One other supervisor comes to mind in regards to that.  We both deeply respected that other person.  Madeline didn’t always wear her emotions on her sleeve, but she was an incredibly caring person who wanted the best for those around her.   Sometimes there might be someone (usually someone who didn’t last long) who drove her a little nuts- but she was always fair if anything came up that involved her input with that person.

I’ve worked with some great people in the years I worked as an RN.  Madeline Spenrath is someone who I will never forget, and am forever grateful for things she taught me.  I became a better nurse and person for having known her.

For those who knew Madeline, and would like to leave a comment about your memories of her, please feel free to do so, and I’ll get them added to the comment section 🙂

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 !

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.

 

 

The Life of Cancer

When I was diagnosed with acute promyelocytic leukemia (APL) in late March 2010, I didn’t realize that cancer has a life of its own.  I expected to go through chemotherapy, have regular follow-up care, and move on. Done.  I’m already disabled, so I didn’t really think that cancer was going to be all that bad. I had been told that the  permanent remission rate for aggressively treated APL was upwards of %90.  I’d be fine.  My standard reply to many of the reactions to my having cancer was “this is the least of my problems; they can fix this”, and to some degree that is still true. But overall, I considered myself very fortunate.  There was a treatment that could really fix me. Not everyone with cancer is that fortunate.

I’ve been off of chemo for about 1.5 years (after 19 months of constant IV or oral chemotherapy, including 50 doses of arsenic IV… 2 25-dose cycles when I’d be in the hospital on a cardiac monitor during the infusion and then go home).  Chemo itself took a toll on my body and the other disorders I’ve got (diabetes- my blood sugars were absolutely nuts on chemo- much higher than usual; fibromyalgia- chemo has side effects involving muscle pain; dysautonomia- my heat intolerance got worse, and my heart rate and blood pressure have been more irritable).  I’ve had ‘chemo brain’ where I’m foggy sometimes, have trouble finding the right words to express myself when I’m speaking, and some memory issues.  Some of that has stuck around, and I’m not sure if it will improve. The blood sugar situation is getting much better, but the dysautonomia is still not good. My memory and word-finding are still not quite right.  But I’m alive. That’s good enough.  I can figure out how to deal with the rest.

I hadn’t expected the ongoing low grade anxiety about relapse and potential metastasis (yes, leukemia can spread).  A few months after stopping all chemo pills, I was scheduled for my annual girly exam. During that, my test to check for blood in my BM came back ‘somewhat’ positive, so I had to have a colonoscopy and upper endoscopy to check for any problems there.  While they were at it, they snatched me up for a mammogram (I’ve never been good at going in for those with any regularity), and because of worsening headaches, I ended up with an MRI of my head.  I also had a weird skin lesion that I needed to get biopsied, and had my first full body skin check by a dermatologist.  A lot of me was scoped, scanned, scraped, or squashed.  Fortunately, everything came out OK.  That was a huge relief.  I have never been all that paranoid about my health (I’m to the point of not reacting much to another diagnosis- I’ve had so many of them), but after a cancer diagnosis, things are different.  It has its own life, even when it’s not there.

I’m learning to relax a little bit, but I won’t ever feel like I’m really ‘safe’.  It’s coming up on three years since the oncologist told me I had leukemia. Had I not gone in for my annual diabetic lab work, I never would have known that my CBC (complete blood count) was absolutely trashed. It took two weeks to get in to see an oncologist, and he scheduled my bone marrow biopsy for a week after that; APL is generally fatal within a month of onset if not treated… and I was sort of put off, even though my lab work had been sent to the consulting oncologist.  As it was, I went to the ER with some shortness of breath the weekend before the scheduled bone marrow biopsy; with a history of  severe blood clots in my lungs, I’ve been instructed to always have anything ‘odd’ in my chest checked out immediately. Had I not gone to the ER,  I would have been another statistic of those who are diagnosed on autopsy, or literally days before death (I know of two people who had that happen last autumn…a 29 year old anchorwoman for the local NBC station, and an 11 year old kid; both were gone within 2 days of being diagnosed).  I’m lucky, and I do realize that.  And, I also know that early detection is the key to the best outcome… so I’m a bit on guard.

I also hadn’t realized how aggressive APL is when it’s not treated until the death of the local news anchor.  I was stunned that I was alive, and she had died just 2 days after she’d been diagnosed.  That was a mind-blower.  I had sort of coasted through chemo and not asked a lot of questions about how bad things were. Looking back, and knowing what my blood counts had dropped to (I got daily updated counts on a card in the hospital to keep track of things), and the purpura (little purple dots of bleeding under the skin), I now realize how ‘in trouble’ I was.   I now realize why there was a sense of urgency during those first days in the hospital (I was there for 6 weeks after going to the ER for the shortness of breath).  I understand why the ear infection was such a big deal, and why it was monitored so closely when it started to spread into my neck, and I had a  moderately high fever but very few white blood cells to fight infections. I was put on vancomycin and gentamycin for five weeks... That’s a long time for any antibiotic, and those two are heavy hitters.

So maybe I’ve gotten a little scared.  I might be a bit late in finally getting spooked, but it is what it is.  At the time, I was more focused on just getting through it.  Now, I’ve got the luxury of having things being stable enough (for my normal abnormal  self) to look at what had gone on.   I hope and pray that I’m in that %90+ that will never have a relapse.  I’ve learned to appreciate life a lot more, and not sweat the small stuff… and what is considered ‘small’ has been redefined many times.  As long as I can get through something, it’s not worth the energy to freak out over. The unknown is another matter.  And I have absolutely no control over that.

I know that I’ve survived all of the stuff that has gone on in my life for some reason. I’m not sure I understand what that purpose is yet- but I’m working on it.  I see a fairly long future, even with the assorted medical issues I’ve got going on.  It’s not like I’m spending my days thinking I’ve got the cancer back again.  But, I do wonder about the life my cancer had…is it gone for good, or is it dormant and waiting to come back?  Some may see that as fatalistic.  For me, it’s just life after aggressive leukemia and the many months of chemotherapy.   I’ve heard others who have had all sorts of cancers have the same feelings of ‘what next?’… it helps that I’m not alone with that.